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THE MANUAL THE MANUAL Powered By Docstoc
					        THE
Lung Cancer
 MANUAL




  Alliance for Lung Cancer Advocacy, Support, and Education


  ALCASE
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                                 Acknowledgments

The Lung Cancer Manual is dedicated to all those who are living with lung can-
cer and to those who will be diagnosed with this disease in the future. We hope that
the information provided here brings you hope and encouragement.
The Manual is also dedicated to all those who have died from this terrible disease,
but whose presence is felt by all of us who work as lung cancer advocates.
The staff of ALCASE and those who worked on The Manual are grateful to ALZA
Pharmaceuticals and Lilly Oncology for providing educational grants in support of
its development.

We are also grateful for the following people for giving of their time and expertise
in reviewing the content of The Manual or acting as consultants on this project.


Paul Bunn, MD                              Lillian Nail, PhD, RN, FAAN
University of Colorado Cancer Center       University of Utah, College of Nursing
Denver, CO                                 Salt Lake City, UT

Kenneth Giddes                             Harvey I. Pass, MD
Lung Cancer Survivor                       Karmanos Cancer Center
Dunwoody, GA                               Detroit, MI

Robert J. Ginsberg, MD                     Cynthia Rittenberg, RN, MN, AOCN
Memorial Sloan-Kettering Cancer Center     Ochsner Cancer Institute
New York, NY                               New Orleans, LA

Mohammad Jahanzeb, MD                      Selma Rosen
Comprehensive Cancer Research Group        Lung Cancer Survivor
Boca Raton, FL                             East Norwich, NY

Joyce Kaplan, MSW, LICSW                   Gary M. Strauss, MD
Lung Cancer Survivor                       University of Massachusetts
St. Louis Park, MN                         Medical School
                                           Worcester, MA
Michael Mallare, MD
Lung Cancer Survivor                       Andrew Turrisi, MD
Roanoke, VA                                Medical University of South Carolina
                                           Charleston, SC



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                The Lung Cancer Manual
                       Table of Contents


Introduction
A Special Note to Healthcare Providers
Chapter One: About the Lungs
Chapter Two: Understanding Cancer
Chapter Three: Understanding Lung Cancer
Chapter Four: Lung Cancer Diagnosis and Staging
Chapter Five: Clinical Trials
Chapter Six: Treatment for Nonsmall Cell Lung Cancer
Chapter Seven: Treatment for Small Cell Lung Cancer
Chapter Eight: Supportive Care for Symptoms of Lung Cancer and
  Its Treatments
Chapter Nine: Complementary and Alternative Medicine (CAM)
Chapter Ten: Living with Lung Cancer
Chapter Eleven: Navigating the Healthcare System and Other
  Practical Issues
Chapter Twelve: End-of-Life Issues
Glossary
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                                           Introduction



T
       he Lung Cancer Manual is for you. Our purpose in creating it is to provide
       you with information to help you live as well as you can with lung cancer.
       Regardless of your prognosis, you do not have to be a victim of lung can-
cer. You can choose your attitude and responses to the disease. Having a positive
attitude can influence the effect that cancer has on your life.

Learning about the disease you are living with and its treatment will help you and
your loved ones make informed decisions about your care and your life. Being
informed can help you find the healthcare that is best for you and help you plan
and prepare for the future and improve your quality of life. At the same time,
because you are an individual, you will find your own way of living with lung can-
cer and of making informed decisions about treatment.

Although you will find a great deal of useful information on the following pages,
The Lung Cancer Manual is not a substitute for professional medical advice
and care.

The treatment of lung cancer is a complicated and specialized field and is
v e ry individualized. Please seek advice from your personal physician and
your oncology healthcare provider(s) regarding your t reatment plan. T h e y
know you and your diagnosis. If you feel that you need furt h e r information,
seek additional opinions.

We encourage you to establish good communication with your healthcare
providers. By asking questions and by letting your healthcare team know what you
want and need, you can create good working relationships that will help you on
your journey through treatment. Talking about your fears and wishes can help your
healthcare providers understand you and provide you with personalized care.


Finding Your Way Around the Manual

We have covered many topics in this manual. You may find it useful to read it
from cover to cover, or you may prefer to focus on the sections that are of imme-
diate interest to you.




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            You’ll notice that the contents of Chapter Six: Nonsmall Cell Lung Cancer and Its
            Treatment and Chapter Seven: Small Cell Lung Cancer and Its Treatment are very
            similar. Of course, you may choose to read both, but each chapter contains enough
            information so that it can stand on its own. We hope this makes the manual easier
            for you to use.

            The “Medical Records Of …” pocket found at the back of the manual was
            designed to provide a place for you to keep copies of your medical records. We
            suggest keeping copies of all of your records to refer to as you navigate your way
            through the healthcare system. It is likely, however, that the “Medical Records Of
            …” pocket will soon become too small for all of your medical records. You may
            want to keep the most important or most current ones in it and keep the rest in a
            binder or other convenient storage system.

            We have included a diagnosis and treatment planning chart, or “algorithm,” in the
            “Medical Records Of …” pocket. The algorithm provides an overview of the diag-
            nostic tests, treatments, and supportive care that may be offered to you as you live
            with lung cancer. This chart should enable you to discuss many approaches to care
            with your healthcare providers.

            You will also notice that the definitions of some words found in the text are set out
            in the margins of the text. A full glossary is included in the back of the manual.
            And, finally, you will notice some short paragraphs in italics set off from the rest
            of the text by lines above and below. Some of these are important points, while
            others are quotes from people living with cancer.

            As you read this manual, we hope you feel a sense of support from the healthcare
            providers and patients who have contributed their knowledge, thoughts, and expe-
            riences to these pages. They did this because they are committed to helping every-
            one affected by lung cancer.

            We wish you the best in finding the course of action that is just right for you. And,
            we hope the information you find here contributes to your health, well being, and
            peace of mind.
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                                A Special Note
                        to Healthcare Providers


Providing care for your lung cancer patients presents you with an opportunity to
make a profound difference not only in their lives but in their families’and friends’
lives as well. Treating people who have lung cancer can be one of the most per-
sonally rewarding and challenging experiences you will encounter in your profes-
sional practice.

Through its work to foster the best possible care for people living with lung can-
cer, the Alliance for Lung Cancer, Advocacy, Support, and Education (ALCASE)
has identified a number of components that we consider essential in providing
optimal care to people who have lung cancer. We offer this list to you with the
hope that you can benefit from our experience with patients and healthcare
providers in the past few years.

Please remember that this list is a reflection of our thinking and experience at this
point in time. It will no doubt evolve in response to input from patients and
providers, advances in medical science, and changes in society at large. You may
have your own thoughts to add, garnered from your personal and professional
experiences.


The Essential Components of Optimal Lung Cancer Care

•   Careful monitoring for those at risk

    Currently, 85% of those diagnosed with lung cancer are diagnosed in late
    stage. Increased surveillance of those at risk may help to detect the disease
    earlier. People at risk include smokers and former smokers, people exposed to
    passive smoke, people exposed to occupational sources of carcinogens known
    to cause lung cancer, or those with a family history of lung cancer.

    A commonly held misconception is that only current smokers are at an
    increased risk of lung cancer. Unfortunately, this is not true. Studies have
    shown that anyone who has ever smoked lives with a higher risk of lung can-
    cer than those who have never smoked. In many areas of the country, former
    smokers are being diagnosed with lung cancer in greater numbers than current
    smokers.




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                Healthcare providers can watch for potential warning signs in their at-risk
                patients such as persistent bronchitis or pneumonia; pain in the chest or back;
                dyspnea or fatigue; or a nagging cough, with or without bloody sputum. They
                then can follow-up with diagnostic tests such as a chest x-ray, CT scan, and/or
                a cytological examination of sputum.

            •   Referral at diagnosis to oncology professionals

                New insights into lung cancer and modes of treatment are emerging. Medical
                and radiation oncologists, chest (thoracic/pulmonary) surgeons, pulmonolo-
                gists, and others in the field of oncology can provide the most up-to-date infor-
                mation about these new developments. Currently, it is believed that only only
                about one-third of people who are diagnosed with lung cancer in the United
                States are referred to oncology professionals. In other countries, the proportion
                is even lower. ALCASE recommends that anyone diagnosed with lung cancer
                be referred to the range of oncology professionals to learn about treatment
                options. We hope that all oncology professionals will tell their primary care
                and pulmonary colleagues about the new advances in treatment for lung can-
                cer and encourage referral of any newly diagnosed patient.

            •   Supportive care from the day of diagnosis

                Because lung cancer affects a vital organ, patients often experience debilitat-
                ing symptoms early in the disease process that adversely affect their quality of
                life. Supportive care for symptoms such as fatigue, dyspnea, cough, and pain
                from diagnosis on can improve and preserve quality of life. Likewise, aggres-
                sively treating the side effects of treatments can greatly improve patients’lives.

            •   Information about and encouragement to participate in clinical trials

                Clinical trials offer patients the best opportunity to receive the most
                aggressive, up-to-date treatment for lung cancer. There are many clinical
                trials for which your patients may be appropriate candidates. For more
                information about these trials, contact ALCASE at 800-298-2436 or log on
                to A L C A S E ’s Website at http://www.alcase.org; log on to the National
                Cancer Institute’s Website at http://cancernet.nci.nih.gov/pdq.htm; or
                call the Institute’s Physician Data Query (PDQ) service at 800-422-6237
                and ask for the phone number of the closest NCI designated
                Comprehensive Cancer Center.

            •   Access to state-of-the-art treatment and procedures

                Providing your patients, those at risk for lung cancer and those who have lung
                c a n c e r, with state-of-the-art procedures and treatment can make a tremendous
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    d i fference in many lives. Even in managed care systems that often seem driven
    by economic considerations, you can make effective quality care decisions.

•   Information about the curative and/or palliative role of treatment

    Most patients do best when they understand their prognosis and the role of
    treatment. This allows them to make informed decisions about their lives and
    their care. Assess your patients and be as honest as your assessment dictates
    about the potential for cure. Explain the stage of disease and how it was deter-
    mined. Explain the best and worst aspects of the prognosis as well as the aver-
    age. Provide positive goals based on prognosis. There are many survivors of
    lung cancer and it’s important to provide encouragement. However, when cure
    is not possible, explain the role of palliative therapy.

•   Assistance in making informed decisions

    Patients with lung cancer often see the healthcare system as a foreign land
    complete with a foreign language. You can help them navigate their way
    through this new landscape of lung cancer: the disease, its treatment, its side
    effects, potential outcomes, and the rationale for your recommendations.

•   Education about living with lung cancer

    Life can be as rich and rewarding after a diagnosis of lung cancer as it was
    before. Help your patients maximize their quality of life through support and
    education. Help them find a support group or provide them with reading mate-
    rials. ALCASE provides a variety of services for people with lung cancer
    including toll-free telephone support at 800-298-2436; a peer-to-peer tele-
    phone support program called Phone Buddies; a quarterly newsletter; and on-
    line information at http://www.alcase.org.

We hope you find the items on this list helpful and thought-provoking. We wish
you and your team the best in your effort to minimize the suffering and maximize
the quality and quantity of life for your patients living with lung cancer.

Please contact ALCASE at 800-298-2436 or through our Webpage at
http://www.alcase.org if you would like more information, have comments, or
would like to be on our mailing list.




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                                               About The Lungs
                                               Table of Contents                                1
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1
The Lungs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.1
    The Role of Oxygen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.3
The Respiratory System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.3
The Circulatory System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.4
Maintaining Balance: Feedback Loops . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.5
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1.6
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                                         About The Lungs
                                         Table of Contents              1
INTRODUCTION                                      d i rect and immediate impact on
                                                  overall health.




I
     n order to understand lung cancer,
     it is helpful to understand how the
                                              The lungs nearly fill the chest cavity.
     lungs work and what happens
                                              The chest cavity extends from the top
when we breathe. This information can
                                              of the rib cage (underneath the collar
be useful when talking with your
                                              bones) down to the abdomen. The
healthcare       providers,    gathering
information about your illness, and
communicating with your family and
friends.

We start with a brief overview of the
structure of the lungs, then describe
how they deliver life-giving oxygen to
the body and remove carbon dioxide.

                                                    The Structure of the Lungs
THE LUNGS                                     o rgans within the chest cavity are
                                              protected by the ribs. The area between
Every cell in the body depends on             the lungs in the middle of the chest is
oxygen to function. If the supply of          called the mediastinum. It contains the
oxygen is impaired in any way, the            heart, windpipe (trachea), esophagus,          mediastinum: area
entire body is affected. The lungs                                                           of the chest behind
                                              and many lymph nodes. The chest                the breastbone
provide essential oxygen to the body          cavity is separated from the abdominal
and remove toxic carbon dioxide.              cavity by the diaphragm, which plays
When the lungs have difficulty doing          an important role in the breathing
their job, every other organ in the body      process by acting like a bellows to help
has difficulty doing its job. As a result,    the lungs expand as they take in air and
the health of the lungs has a direct and      contract as they push it out. The
immediate impact on overall health.           diaphragm is a major muscle of
                                              breathing and accounts for 70% of
                                              breath volume.
    When the lungs have difficulty doing
    their job, every other organ in the
    body has difficulty doing its job. As a   The lungs are partially composed of
    result, the health of the lungs has a     elastic fibers that allow the lungs to


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                               expand and contract. Healthy lungs          bronchi branch out into smaller and
                               have a smooth, shiny surface because        smaller tubes called bronchioles. At the
                               they are covered by a thin, moist           far end of each bronchiole are tiny
                               membrane called the visceral pleura.        balloon-like structures called air sacs
 visceral pleura: the          The pleura also lines the inner surface     or alveoli. The alveoli look like
    part of the pleural        of the chest cavity (parietal pleura).      clusters of grapes and are so small they
       membrane that           The pleural membranes are slippery          can only be seen with a microscope.
        surrounds and
separates the lobes of
                               and glide easily against each other as
               the lung        we breathe in and out.                      Each lung contains about 300 million
                                                                           alveoli. Oxygen enters the bloodstream
bronchus: either of            Each lung has its own unique shape.         and carbon dioxide leaves the
 the two branches of           The right lung usually has three lobes
           the trachea         — upper, middle, and lower — and is
  (windpipe) leading
 directly to the lungs         slightly larger than the left lung. The
                               left lung normally has only two lobes.
 alveoli: tiny air sacs        The left lung also has a cardiac notch to
    found at the end of        accommodate the shape of the heart.
 the smallest branches
  of the bronchial tree;
     oxygen passes into        Each lobe of each lung is divided into
   the bloodstream and         segments. If necessary for treatment,
         carbon dioxide        segments can be surgically removed
  passes into the lungs        individually. The narrow, top portion of
to be exhaled through          each lung, which fits under the
             the alveoli
                               collarbone, is called the apex. The                   The Bronchial Tree
                               broad bottom portion that rests on the
                               diaphragm is called the base.               bloodstream through the walls of the
                                                                           alveoli. As you can imagine, the walls
                               When we breathe, air travels through        of the alveoli are very thin and fragile.
                               our mouths or noses and down a              They also are elastic, which allows
                               system of tubes to the lungs. This          them to expand and deflate like tiny
                               system of air tubes is called the           balloons. Damage to the alveoli is
                               bronchial tree because it looks like an     irreversible and can result in permanent
                               upside down tree.                           holes in the tissues of the lungs.

                               The bronchial tree starts with a single     The tiniest blood vessels of the body,
                               l a rge tube called the trachea, or         called capillaries, are in the walls of the
                               windpipe. You can feel your trachea in      alveoli. The blood in the capillaries is
                               the front of your neck. It goes down the    separated from the air in the alveoli only
                               neck into the chest, where it branches      by the very delicate walls of the alveoli.
                               into two bronchi. The right bronchus        That is why oxygen and carbon dioxide
                               leads into the right lung and the left      are usually able to pass so easily into
                               bronchus leads into the left lung.          and out of the bloodstream. There are
                                                                           about one billion capillaries in the lungs,
                               Once inside the lung, each of the           more than three for each air sac.

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In addition to blood vessels, the lungs     gases to take place. This exchange of
contain a complicated network of            gases is called respiration.
vessels that carry lymph fluid. These                                                       lymphatic (lymph)
vessels are part of the lymphatic                                                           system: network
system. The lymphatic system is                                                             including the lymph
responsible for deploying important                                                         nodes, lymph vessels,
                                                                                            and lymph fluid; can
cells of the immune system throughout
                                                                                            be an avenue for the
the body to fight disease. The work of                                                      spread of cancer cells
the lymphatic system and its role in
lung cancer is discussed in more detail
in “Chapter Two: Understanding
Cancer.”


The Role of Oxygen

Oxygen is necessary for life and is used
by every cell in the body. We get
oxygen from the air we breathe.
Without oxygen, the cells, and the
body, die.
                                                    The Respiratory System
The respiratory system and the
circulatory system work together to
take in oxygen, get it into the blood           Lung diseases like emphysema and
stream, carry it to every organ and cell        cancer can damage the delicate areas
throughout the body, exchange it for the        in the alveoli, hindering the vital
carbon dioxide, and carry the carbon            exchange of oxygen and carbon
dioxide back to the lungs to be exhaled.        dioxide, resulting in abnormal levels
                                                of these two gases.



THE RESPIRATORY                             When we breathe, each air sac, or
SYSTEM                                      alveolus, is bathed in oxygen. As
                                            mentioned earlier, oxygen passes
The respiratory system includes the         through the walls of each alveolus into
nose, the throat (pharynx), the             the surrounding capillaries. The red
windpipe (trachea), the complex series      blood cells in the capillaries carry
of tiny tubes that permit passage of air    oxygen to the heart. The heart then
into and out of the lungs, and the lungs.   pumps the oxygenated blood through
To g e t h e r, these organs perform a      arteries to all cells of the body.
critically important task: they
distribute air close enough to the          The cells that take in oxygen must also
bloodstream for a vital exchange of         get rid of carbon dioxide, a toxic waste

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              product. So the process reverses. T h e         reach the alveoli, where they divide
              b o d y ’s cells return carbon dioxide to the   again into even smaller vessels called
              bloodstream to be carried back by the           the capillaries.
              red blood cells to the heart through the
              veins. The heart then pumps the blood           The right side of the heart pumps
              loaded with carbon dioxide back to the          deoxygenated blood (blood with a low
              lungs, where it passes from the                 oxygen content) into the lungs where it
              capillaries to the air sacs and is exhaled      becomes oxygenated as it passes
              out of the lungs. Continuous removal of
              carbon dioxide from the body is just as
              important for survival as is a constant
              supply of oxygen.

              The success of this system is dependent
              upon the very thin walls of the alveoli.
              These thin walls normally allow the
              exchange of oxygen and carbon dioxide
              to take place easily and quickly. Lung
              diseases like emphysema and cancer
              can damage the delicate areas in the
              alveoli, hindering the vital exchange of
              oxygen and carbon dioxide, resulting in
              abnormal levels of these two gases.                     The Circulatory System


                                                              through the capillaries in the walls of
              THE CIRCULATORY                                 the alveoli. The oxygenated blood then
              SYSTEM                                          leaves the lungs and returns to the left
                                                              side of the heart where it is pumped to
              The circulatory system is composed of           the rest of the body.
              a system of tubes very similar to the
              respiratory system. The system begins           Lung diseases can affect the function
              with one large tube, the pulmonary              of the right side of the heart because
              artery, that comes out of the right side        blood is pumped from the right side of
              of the heart. The pulmonary artery              the heart into the lungs. The left side of
              splits into left and right branches. Each       the heart is usually not affected by
              branch goes to a lung.                          diseases of the lung. However, when
                                                              pressure becomes very high in the
              Once in the lungs, the pulmonary                lungs due to disease, the left side of the
              arteries divide many times into smaller         heart can also be affected.
              and smaller vessels. The smallest
              components of this system are the
              arterioles. The arterioles run along the
              walls of the bronchioles until they


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MAINTAINING BALANCE:                            example of what’s called a negative
FEEDBACK LOOPS                                  feedback control loop; it recognizes a
                                                change inside the body and causes a
Respiration is one of the body’s                return to normal. The body immediately
homeostatic, or stabilizing, mechanisms.        mobilizes into action. Each system acts
By supplying adequate oxygen and                in concert with the other to achieve a
                                                common goal: normalcy.
removing carbon dioxide, the
respiratory system helps maintain a             When carbon dioxide increases in the
constant internal environment that              blood, the heart automatically starts
keeps all of our body cells functioning         beating faster and the respiratory rate
e ff e c t i v e l y. The slightest change in   increases to get the carbon dioxide out
oxygen or carbon dioxide levels in our          of the body as quickly as possible.
blood and cells triggers mechanisms             Another consequence of too much
that attempt to bring these levels back         carbon dioxide in the body is that it
to normal.                                      makes the body more acidic (decreased
                                                pH). As a result, the kidneys, which
For example, when we exert ourselves,           play a vital role in regulating the levels
such as in running or climbing stairs,          of many chemical substances in the
our natural reaction is to breathe more         blood, also start working harder to
rapidly and to try to take in more air.         bring the body’s pH back into balance.
This is because the cells in our muscles        Without the body’s stabilizing
need more oxygen to work harder.                mechanisms, levels of carbon dioxide
Because they have produced more                 would rapidly rise to toxic levels, and
carbon dioxide as a by-product of their
                                                death would result.                               homeostasis: ability
effort, there is more to be eliminated.
                                                                                                  or tendency of an
So, we breathe more quickly and our                                                               organism or a cell to
hearts beat faster to bring the oxygen              When carbon dioxide increases in the          maintain internal
levels back to normal. In fact, survival            blood, the heart automatically starts         equilibrium by
depends on the body’s ability to                    beating faster and the respiratory rate       adjusting its
continuously respond to such changes                increases to get the carbon dioxide           physiological
                                                    out of the body as quickly as possible.       processes
in its environment.
                                                                                                  erythropoietin: a
                                                                                                  hormone that
    By supplying adequate oxygen and            If the body’s oxygen level is lowered,            stimulates stem cells
    removing carbon dioxide, the                the kidneys produce a hormone called              in the bone marrow
    respiratory system helps maintain a
                                                erythropoietin. Erythropoietin stimu-             to produce red blood
    constant internal environment that                                                            cells
    keeps all of our body cells functioning     lates the bone marrow to produce more
    effectively.                                red blood cells to carry more oxygen.
                                                                                                  fatigue:
                                                Not having enough red blood cells (low            extraordinary
                                                red blood cell count) causes anemia,              tiredness upon
Accomplishing this self-regulation              with symptoms such as fatigue,                    normal exertion
requires a complex communication                shortness of breath, and dizziness.
network called a feedback control loop.         Anemia can result from both disease and
The respiratory system is a good                treatment.

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                           The continuous feedback loop between        to carry out their functions are described
                           the respiratory and circulatory systems     in “Chapter Eight: Supportive Care for
                           sets the stage for how the body             Symptoms of Lung Cancer and Its
                           functions. This mechanism is so             Treatment.”
                           sensitive that, if the respiratory system
                           malfunctions at any point and impedes
                           the oxygen supply, the aftershocks will
                           be felt in every other organ and system
                           in the body.

                           Damage to the lung tissues, which
           dyspnea:
     uncomfortably
                           reduces their ability to respond
difficult breathing;       normally to feedback from the body,
          air hunger       can cause dyspnea (uncomfortably
                           difficult breathing).

                           Damage to the lung tissues that reduces
                           their ability to respond normally to
                           feedback from the body can cause
                           dyspnea. Dyspnea can also be caused
                           by things such as anemia, blockage of
                           the airway, fluid in the lungs, infection
                           in the lung (e.g., pneumonia), heart
                           failure, muscle weakness, and anxiety.
                           In addition, because the body uses a
                           great deal of energy to fight disease,
                           fatigue can occur. Dyspnea and fatigue
                           are two of the most common problems
                           lung cancer survivors experience.


                           SUMMARY

                           Our lungs are vital organs in that they
                           are necessary to sustain life. When
                           lung tissue is damaged, or removed,
                           because of lung cancer or other
                           conditions, the lungs are not as
                           effective at doing the job for which
                           they were designed to do.

                           Breathing methods that are designed to
                           help maximize the ability of your lungs


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                                   Understanding Cancer
                                      Table of Contents                                         2
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1
What is Cancer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1
What Causes Cancer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.1
    Oncogenes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2
    Tumor-Suppressor Genes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2
       p53 Gene . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.2
How Common is Cancer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3
How Does Cancer Spread? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3
What Does “Differentiation” Mean? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.3
Summary. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2.4
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                         Understanding Cancer                        2
INTRODUCTION                              WHAT IS CANCER?

                                          Cancer is a group of diseases that are

W
           e are witnessing an era of
           great discovery in the field   characterized by uncontrolled growth
           of cancer research. New        and spread of abnormal cells.
insights into the causes of cancer are
emerging daily. These developments        Cancer develops when normal cells
have brought a sense of optimism to       change and divide because their normal
scientists and clinicians working         control mechanisms are damaged.
toward new cancer therapies.              Most cells have the potential to become
                                          cancer cells, but are kept from doing so
Learning about cancer and the recent      as long as the control mechanisms               cancer: a group of
                                          remain undamaged.                               over 100 diseases
advances in cancer research is an
                                                                                          characterized by the
excellent investment in your future.                                                      uncontrolled growth
Your knowledge will help you keep                                                         and spread of malig-
abreast of new discoveries and the        WHAT CAUSES CANCER?                             nant cells
development of promising therapies.
                                                                                          cell: the smallest
                                          During the course of a lifetime, we are         structural unit of an
                                          exposed to environmental chemicals,             organism that is
                                          such as asbestos and tobacco smoke;             capable of indepen-
                                          radiation; viruses; and even chemicals          dent functioning
                                          from our own bodies that can cause
                                                                                          deoxyribonucleic
                                          genetic changes that may lead to can-           acid (DNA): a nucle-
                                          cer. Some genetic abnormalities that            ic acid that carries
                                          can lead to cancer are inherited.               the genetic informa-
                                                                                          tion in the cell and is
                                          Every cell in the human body contains           capable of self-repli-
                                                                                          cation and synthesis
                                          23 pairs of chromosomes. Winding                of RNA
                                          through each pair is the double spiral of
                                          DNA (deoxyribonucleic acid) that
                                          contains the genetic blueprint for life.
                                          Each chromosome contains many
                                          thousands of genes, each of which is a
                                          tiny subdivision of DNA. Each gene
                                          can transmit a single characteristic or
                                          message to the body, such as color of
                                          eyes, or how to repair injured tissue.

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              Because we have so many genes, there            cell by giving the cell instructions to
              are countless opportunities for things          continually reproduce or not to die. An
              to go wrong. What’s “wrong” in cancer           oncogene may be activated by cancer-
              cells are the genes that rule the cell’s        causing agents such as radiation, chem-
              life cycle. These are the genes that trig-      icals found in cigarette smoke and the
              ger the cell to divide and eventually die       environment, asbestos, and viruses,
              in an orderly way. Cancer occurs when           among others. These activated onco-
              these genes are unable to direct the cell       genes put a person at higher risk for
              not to reproduce or inappropriately             developing cancer in the tissue con-
              direct it to multiply or not to die.            taining that gene.


                  Because we have so many genes,              Tumor-Suppressor Genes
                  there are countless opportunities for
                  things to go wrong.
                                                              Another type of gene implicated in the
                                                              development of cancer is the tumor-
              Generally, it takes several diff e r e n t      suppressor gene or antioncogene.
              genetic flaws, accumulated over a life-         Normally, tumor-suppressor genes pro-
              time, to finally tip a cell into uncon-         tect us by preventing or suppressing the
              trolled growth and eventually a cancer-         action of an oncogene and the unregu-
              ous tumor. Sometimes, 10 or 20 years            lated growth of cancer cells. If one of
              may pass before the tumor is large              the tumor-suppressor genes is absent,
              enough to be noticeable.                        or doesn’t work properly, a tumor may
                                                              develop.
              Researchers are working to develop new
              therapies and drugs that target genes.
                                                                 Researchers are working to develop
              However, it can take years of work                 new therapies and drugs that target
              before drugs are available to patients.            genes.
              See “Chapter Six: Nonsmall Cell Lung
              Cancer and Its Treatment” and “Chapter
              Seven: Small Cell Lung Cancer and Its           p53 gene
              Treatment” for a review of these and            The p53 gene is a tumor suppressor
              other potential new therapies.                  gene that has been shown to be
                                                              involved in the development of many
              The following are some of the types of          types of cancer. The p53 gene is a type
              genes now under investigation.                  of tumor-suppressor gene found in all
                                                              normal cells. It produces a protein that
                                                              is key in regulating the growth of nor-
              Oncogenes                                       mal cells.

              An oncogene is one of the life cycle            About half of tumors escape the body’s
              genes that develops a mutation that can         anticancer surveillance system, in part,
              transform a normal cell into a cancer           because of altered p53 genes. For

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example, lung cancer cells frequently         one part of the body can spread to other
contain altered p53 genes in abnormal         parts of the body, such as the brain,
amounts. Abnormalities in the p53             liver, or bone. This is called metastasis.
gene are found in about 50% of non-           Metastasis occurs when cells break
small cell lung cancers and in 90% or         away from the original tumor and trav-
more of small cell lung cancers.              el through the body via the blood-
                                              stream or the lymphatic system and
                                              begin to grow in another part of the
HOW COMMON IS                                 body.                                            metastasize: spread
                                                                                               of cancerous cells
CANCER?                                                                                        from an original site
                                              The new cancer growth in another part            to one or more sites
The National Cancer Institute esti-           of the body is not a different kind of           elsewhere in the
mates that almost eight million               cancer; rather, it is cancer that has            body, usually by way
Americans alive today have been diag-         moved to a different site and begun to           of the blood vessels
nosed with cancer. One out of three                                                            or lymph system
                                              grow. This type of cancer is called
Americans will develop cancer by age          ”metastatic cancer.”                             malignant: cancer-
75. Cancer is the second leading                                                               ous, with a tendency
cause of death in the United States,                                                           to spread
exceeded only by heart disease. It is
estimated that, this year, over one mil-                                                       lymphatic (lymph)
lion new cases of cancer (not counting                                                         system: network
                                                                                               including the lymph
skin cancers) will be diagnosed.                                                               nodes, lymph vessels,
Approximately 11 million new cancer                                                            and lymphatic fluid;
cases have been diagnosed since 1990.                                                          can be an avenue of
                                                                                               spread for cancer
                                                                                               cells
    The National Cancer Institute esti -
    mates that almost eight million
    Americans alive today have some his -
    tory of cancer.




HOW DOES CANCER
                                                     The Process of Metastasis
SPREAD?

Besides being able to reproduce uncon-        WHAT DOES
t r o l l a b l y, cancer cells are able to
                                              “DIFFERENTIATION”
migrate (metastasize) from the site
where they began and form masses in           MEAN?
distant parts of the body. Cancer cells
can also invade nearby tissues.               You may have heard the term differen-
                                              tiation in discussions about cancer.
A malignant, or cancerous, tumor in           When a cell grows and develops nor-

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              mally, it becomes more specialized to             as “well differentiated” still contain
              perform a particular function in life.            cells that resemble normal cells of the
              This process is called differentiation,           original tissue. “Undiff e r e n t i a t e d ”
              and it results in irreversible changes in         tumors have cells that no longer look
              the cell’s characteristics.                       like normal cells.

              Differentiated cells are mature cells
              that perform a particular function. For           SUMMARY
              example, a lung cell looks like other
              lung cells and works like other lung              All cancer cells share the same funda-
              cells. As a cell becomes more differen-           mental characteristics, such as uncon-
              tiated, it becomes more restricted in             trolled growth. However, a cancer that
              what it can do. Examples of fully dif-            develops in one organ, such as the
              ferentiated cells are red blood cells,            lungs, grows in ways that are specific
              muscle cells, and lung cells.                     for that type of cancer. And there are
                                                                usually subtypes of the specific can-
              Abnormal growth in a cell can begin at            cers, as with lung cancer. As a result,
              any point during the diff e r e n t i a t i o n   each type and subtype of cancer
              process. The abnormal cells become                requires very specific methods of diag-
              less organized in the way they look and           nosis and treatment.
              how they work.


                  Well differentiated tumors still con -
                  tain cells that resemble the normal
                  cells of the organ in which the tumor
                  began. Undifferentiated tumors are
                  those in which most of the cells no
                  longer function like normal cells.



              As malignant, or cancerous, cells grow
              and divide, they become less and less
              differentiated. Eventually, they can no
              longer perform the functions of the tis-
              sue where they originated. Besides
              internal abnormalities, cancer cells
              have a different size, shape, and
              appearance than that of normal cells.

              The term differentiation is also used to
              describe how the cells of a tumor
              appear in comparison to normal cells.
              For example, tumors that are classified


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                    Understanding Lung Cancer
                             Table of Contents                                                  3
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1
What Is Lung Cancer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1
How Common Is Lung Cancer? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1
How Fast Does Lung Cancer Grow? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.2
How Does Lung Cancer Spread? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.3
How is the Extent of Cancer Determined? . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.4
Risk Factors for Developing Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5
    Smoking . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.5
       Why Should I Quit Smoking? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6
       What About Second-Hand Smoke? . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6
    Age and Gender . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.6
    Genetics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.7
    Asbestos . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.7
    Other Environmental Factors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.7
Types of Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.8
    Nonsmall Cell Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.8
       Adenocarcinoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.8
       Squamous Carcinoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.8
       Large Cell Carcinoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.9
    Small Cell Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.9
Related Cancers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.9
    Carcinoid Tumors . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.9
    Malignant Mesothelioma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.10
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.10
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               Understanding Lung Cancer                                 3
INTRODUCTION                                You may hear the term “bronchogenic
                                            cancer” used to refer to lung cancer.
                                            This is because most lung cancers

L
        earning about lung cancer is an
        important part of preparing for     begin in the cells of one of the breath-
        the decisions that you and your     ing tubes (the bronchi) in the lungs.
healthcare providers have to make. In
this chapter, we look at such things as     There are several types of lung cancer.
how lung cancer develops, how fast it       Learning about your particular type can
grows, and how it spreads. We talk          help you talk with your doctor and
about who is at risk for developing         other healthcare providers and make
lung cancer and how common it is.           decisions about your treatment. The
Finally, the types of lung cancer and       more informed you are, the more
some related cancers are reviewed.          informed your questions and decisions
                                            will be.

   It’s important to learn as much as you
   can about lung cancer. That way you          Learning about your particular type
   are in a better position to know what        of lung cancer may help you when you
   you want in terms of treatment and           talk with your doctor and other
   follow-up care after treatment.              healthcare providers.




WHAT IS LUNG CANCER?                        HOW COMMON IS
                                            LUNG CANCER?
Lung cancer is a disease that begins in
the cells of the lungs. Like all cancers,   Lung cancer is very common and is
lung cancer develops when normal            becoming more common every day. By
lung cells change and begin to divide in    the end of 1998, an estimated 171,000
an uncontrolled way. Besides repro-         Americans will have been diagnosed
ducing uncontrollably, lung cancer          with lung cancer and 160,000
cells have the ability to migrate (metas-   Americans will have died from the dis-
tasize) from the site where they began.     ease in that year alone. Lung cancer is
They can invade nearby tissues as well      the number one cancer killer in this
as form tumors in distant parts of the      country for both men and women of all
body. If lung cancer is not treated, it     ethnicities. In fact, lung cancer kills
will eventually be fatal.                   more people in the United States every


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                            year than colon, prostate, and breast
                            cancer combined.                                     A c c o rding to the World Health
                                                                                 Organization, worldwide, three peo -
                                                                                 ple die every minute from lung cancer.
                               Lung cancer is very common and is
                               becoming more common, especially
                               among women. It is the leading cause           Worldwide, lung cancer is increasing at
                               of cancer death in most countries,             a rapid pace, at half a percent a year.As
                               including the        United States.            a result, lung cancer is the leading
                               Worldwide, the occurrence of lung
                               cancer is increasing at a rate of half a
                                                                              cause of cancer death in most coun-
                               percent a year, which is a very fast           tries. Hundreds of thousands of people
                               rate of growth for a disease.                  on earth have lung cancer right now
                                                                              and many more will develop the dis-




                            Until recently, lung cancer was viewed            ease in the future. Lung cancer has
                            as primarily a man’s disease. Women               been identified by the World Health
                            now develop lung cancer almost as                 Organization (WHO) as one of the
                            often as men do. Death rates from lung            major problems facing the world in the
                            cancer increased an astonishing 550%              new century.
       carcinogenic:        in women between 1962 and 1992.
inciting or producing       This increase is a direct result of the
               cancer       increase in smoking by women and of               HOW FAST DOES
                            their greater sensitivity to the carcino -        LUNG CANCER GROW?
                            genic effects of tobacco and other car-
                            cinogens.                                         Scientists believe lung cancer may be
                                                                              one of the more slowly growing can-

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cers. Most cancer researchers believe       bloodstream die, but some survive and
that most lung cancers take 10, 20 or       grow and become metastatic cancer.
more years to develop to the point that     (Metastatic cancer is more difficult to
they can be seen by the technology          treat than primary cancer. Your doctor
available today. Though it generally        will carry out tests to determine if you
grows slowly, lung cancer has the abil-     have metastatic lung cancer.)
ity to spread very quickly to other parts
of the body, because it starts in a vital
organ through which all the body’s
blood flows. Once the tumor reaches a
certain size, it may grow much more
rapidly.


   Cancer researchers believe that most
   lung cancers take many years to
   develop to the point that they can be
   seen by the technology available
   today.



During the years the cancer is develop-
ing, before it can be seen on x-ray or by
the more sensitive CT (computerized
axial tomography), MRI (magnetic res-
onance imaging) or PET (positron
emission tomography) scans, micro-
scopic changes are occurring in the                   The Lymphatic System                  lymph: a transpar-
cells of the bronchi and lungs. Some of                                                     ent, slightly yellow
the new diagnostic techniques for pos-                                                      liquid found in the
                                            The lungs also have a rich supply of
sible earlier detection of these changes                                                    lymphatic vessels
                                            lymph vessels. The system of lymph              and derived from the
are discussed in “Chapter Four: Lung        vessels resembles the system of blood           tissue fluids; acts to
Cancer Diagnosis and Staging.”              vessels. The purpose of the lymphatic           remove bacteria and
                                            system is to drain the clear fluid called       certain proteins from
                                            lymph from the body tissues and bring           the tissues, transport
HOW DOES LUNG CANCER                                                                        fat from the small
                                            it back into circulation.                       intestine, and supply
SPREAD?                                                                                     mature lymphocytes
                                            Lymph gets into the body’s tissues by           to the blood
Because the lungs are so richly sup-        leaking out of lymph vessels and accu-
plied with blood vessels (see “Chapter      mulating between cells. Lymph con-
One: About the Lungs”), they serve as       tains immune system cells called lym-
a convenient route for lung cancer cells    phocytes. The function of lymphocytes
to travel to other parts of the body.       is to fight germs, among other things.
Most of the cancer cells that enter the     The lymphatic system carries the dis-

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                               ease-fighting lymphocytes to and from          Lung cancer often develops in a single
                               various structures in the body.                spot in the lung, but regardless of
                                                                              where it begins, if lymph nodes are
                               Along the lymph vessels lie lymph              involved, it may also spread to other
                               nodes that filter germs and other for-         parts of the body.
                               eign invaders, such as cancer cells. The
   lymph node: small           trapped cells can multiply in the lymph
           bean-shaped         nodes, causing them to swell. An
       immune-system
                               enlarged lymph node in the neck region
    organ that acts as a
filter to collect bacte-       can be an indication of lung cancer.
  ria and other foreign        Some cancer cells escape the lymph
 substances processed          nodes and find their way to other parts
   by the immune sys-          of the body, where they lodge and
tem; lymph nodes are
                               grow.
     connected by lym-
          phatic vessels
  throughout the body
                               HOW IS THE EXTENT OF
  hilus (hilum): the           CANCER SPREAD
    depression on the
  surface of the lung          DETERMINED?
 where the bronchus,
   blood vessels, and                                                            Sites of Lung Cancer Metastases
nerves enter the lung
                                  Knowing the stage, or extent, of your
                                  cancer at diagnosis is critical in
                                  determining what treatment your doc -
                                  tor recommends and in determining           Typically, the lymph nodes near the
                                  your prognosis.                             hilus, the place where the large airways
                                                                              and blood vessels enter the lung from
                                                                              the mediastinum (towards the center of
                               The extent of cancer is determined             the chest), are affected first. From
                               through a process called “staging.”            there, the cancer may spread to the
                               Knowing the stage, or extent, of your          nodes of the mediastinum and then to
                               cancer at diagnosis is critical in deter-      the nodes in the neck and/or abdomen.
                               mining what treatment your doctor rec-         If the tumor cells enter the blood-
                               ommends and in determining your                stream, they may migrate (metastasize)
                               prognosis. See “Chapter Four: Lung             to the liver, other sections of the lung,
                               Cancer Diagnosis and Staging” for a            the brain, the bones, and/or the bone
                               more in-depth discussion of staging.           marrow.

                               A key element in the staging process is        Determining the stage of cancer is an
                               determining the characteristics of the         important step in determining the
                               tumor(s) in the lungs and assessing            extent of cancer and in developing a
                               whether the cancer is localized there or       treatment plan.
                               whether it has spread to regional lymph
                               nodes or to other parts of the body.

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RISK FACTORS FOR                            Smoking
DEVELOPING LUNG
CANCER                                      Smoking is the most common cause of
                                            lung cancer. For smokers, the risk of
Lung cancer cannot be passed from one       developing lung cancer is related to
person to another like the flu. You can-    their total lifetime exposure to ciga-
not get lung cancer by touching a per-      rette smoke, and is measured by the
son with lung cancer or by being            number of cigarettes smoked each day,
exposed to their bodily fluids.             the age at which smoking began, and
                                            the number of years a person has
We are learning more about the things       smoked.
that do cause lung cancer and what can
be done to prevent it. We know that
85% or more of all lung cancer cases            People who smoke can reduce their
occur among people who have a histo-            risk of developing lung cancer by quit -
                                                ting. However, a former smoker’s risk
ry of smoking tobacco. We also know
                                                of lung cancer never returns to that of
that about one out of six people who            someone who has never smoked.
develop lung cancer have never
smoked.
                                            The good news is that a smoker’s risk
Scientists have recently shown that         of developing lung cancer can be
smoking marijuana and crack-cocaine         reduced by quitting. Because most
also increases a person’s risk for devel-   lung cancers are present for several
oping lung cancer.                          years before they become sympto-
                                            matic, risk for lung cancer does not
                                            begin to decline until several years
   Lung cancer can be caused by many
                                            after smoking cessation. However, ten
   things. We know that smokers and for -
   mer smokers are at an increased risk     years after quitting lung cancer risk in
   of developing lung cancer. We also       former smokers is about 20% to 50%
   know that people may have a genetic      of those who continue to smoke. Risk
   p redisposition to developing lung       continues to decline gradually.
   cancer.
                                            H o w e v e r, a former smoker’s risk of
                                            lung cancer never returns to that of
                                            someone who has never smoked. A
We know that exposure to certain            former smoker’s risk always remains                 gene: the part of
chemicals, such as those found in ciga-                                                         DNAthat is responsi-
                                            significantly higher than that of a
rette smoke, can increase a person’s                                                            ble for determining a
                                            n e v e r- s m o k e r.
risk of lung cancer. We know that                                                               person’s characteris-
genes, or a genetic predisposition, can                                                         tics, and for carrying
                                                                                                information from old
increase the risk of developing lung                                                            cells to new cells
                                                “My surgeon really stressed that I
cancer. And, we also know that, some-           needed to quit smoking before my
times, people develop lung cancer for           s u rg e ry. I didn’t realize how bad
no reason that can be identified.               smoking could be for my re c o v e ry. It


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                 was really hard to quit, especially con -       caused by second-hand smoke. Living
                 sidering how stressed I was by my               with a smoker can increase a person’s
                 diagnosis. But, I did it and I’m glad I
                 did!”
                                                                 risk of lung cancer. Likewise, any job
                              — lung cancer surv i v o r         that exposes a person to environmental
                                                                 smoke, such as working in a bar or
                                                                 restaurant or being a flight attendant on
                                                                 an airline or a worker in an office
              Why Should I Quit Smoking?                         where smoking is allowed, can
              Despite this remaining risk, it is still           increase a person’s risk of lung cancer.
              highly advantageous and advisable for
              a smoker to quit, no matter how long
              he or she has smoked. For example,                 Age and Gender
              former smokers who are diagnosed
              with lung cancer generally do better in            Age itself may increase a person’s risk
              surgery and during treatment than do               of lung cancer. As we age, some of our
              current smokers. In addition, when                 cells may become damaged so that they
              smokers quit, they slow the progress of            do not divide normally, which can lead
              other lung disorders such as chronic               to cancer. In addition, our immune sys-
              obstructive pulmonary disease (COPD)               tem works less well as we age, so that
              and emphysema. Smokers who quit                    cancer cells have a greater chance of
              also reduce their risk of heart disease            slipping through our natural surveil-
              compared to that of nonsmokers in two              lance system undetected. Also, the
              years and reduce their risk for develop-           more time that passes the more expo-
              ing other cancers for which smoking is             sure we have to more carcinogens.
              also a risk factor.                                Therefore, historically, lung cancer has
                                                                 tended to occur in older people, pre-
                                                                 dominately those in their 50s, 60s, and
                 The Environmental Protection Agency             70s.
                 estimates that every year 3,000 people
                 in the United States die of lung cancer
                 caused by second-hand smoke. Living
                 with a smoker can increase a person’s              New studies indicate that women may
                 risk of lung cancer.                               be more sensitive than men are to car -
                                                                    cinogens such as tobacco.


              What About Second-Hand Smoke?
              The health risks of tobacco smoke are              New studies indicate that females may
              not limited to smokers. Exposure to                be more sensitive than males are to car-
              other people’s smoke, called “second-              cinogens such as tobacco.
              hand smoke,” “sidestream smoke,” or
              “environmental tobacco smoke,” also                Young people, especially females, are
              increases a person’s risk of lung cancer.          now developing lung cancer at increas-
              The Environmental Protection Agency                ing rates. This increase will continue as
              estimates that every year 3,000 people             long as people start smoking at young
              in the United States die of lung cancer            ages.

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                                            increased risk of a rare form of cancer
   As long as people continue to start      that occurs in the lungs called malig -
   smoking at young ages, the incidence     nant mesothelioma.
   of lung cancer will continue to
   increase in younger people, particu -
   larly in females.
                                                Asbestos workers who smoke have a
                                                greatly increased risk of developing
                                                lung cancer.
                                                                                             mutation: an alter-
Genetics                                                                                     ation in a gene that
                                            Though smoking does not appear to be             may cause disease or
As described in “Chapter Tw o :             a risk factor for malignant mesothe-             abnormal functioning
                                                                                             of the body
Understanding Cancer,” a person’s           lioma, asbestos workers who smoke
genes can affect their risk of lung can-    have a greatly increased risk of develop-        malignant mesothe-
cer. In fact, cancer is now considered to   ing lung cancer. Studies have shown              lioma: a malignant
be a disease caused by damaged genes.       that asbestos workers who smoke may              tumor that starts in
People whose parents or siblings have       have a five-fold increased risk of getting       the cells of the lining
                                                                                             of the lungs;
or had lung cancer may have a genetic       lung cancer than nonsmokers exposed
                                                                                             mesothelioma has
predisposition to and a greater risk of     to asbestos. In this case, smoking and           been linked to expo-
developing lung cancer. Other people        exposure to asbestos have a multiplica -         sure to asbestos
are born with genes that are resistant to   tive or synergistic e ffect on the risk of
damage and they may be less suscepti-       lung cancer. In other words, the risk for        multiplicative: tend-
                                                                                             ing to multiply or
ble to developing cancer. Every day,        lung cancer from smoking is multiplied
                                                                                             capable of multiply-
more is being learned about the role of     when there is exposure to asbestos               ing or increasing
genes and genetic mutations in the          rather than being merely added.
development of lung cancer and other                                                         synergistic: capable
types of cancer.                                                                             of producing the
                                            Other Environmental Factors                      interaction of two or
                                                                                             more agents or forces
                                                                                             so that their com-
   Cancer is now considered to be a dis -   Exposure to radon, a naturally occur-            bined effect is greater
   ease caused by damaged genes.            ring, colorless, odorless gas that seeps         than the effect of the
                                            out of the earth’s crust, increases the          individual parts
                                            risk of lung cancer. Radon comes from            merely added
One of the most striking features of        the radioactive decay of uranium.
lung cancer is the large number of          U n d e rground miners may be at an
genetic changes or mutations, often 10      increased risk for lung cancer if radon
to 20, found in lung cancer cells. This     is present in the mines where they
large number of mutations clearly indi-     work. Some people live in areas that
cates that there is “genetic instability”   have naturally occurring high levels of
in lung cancer cells.                       radon. They may be exposed to radon
                                            in their homes, particularly in their
Asbestos                                    basements. Kits are commercially
                                            available for measuring radon levels.
People exposed to asbestos have an

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                              Other chemicals that are known to            The following is a brief summary of
                              increase the risk of lung cancer are         the characteristics of each of these
                              arsenic,    bis-chloromethyl     ether       types of NSCLC.
                              (BCME), chromium and chromium
                              compounds, nickel and nickel com-            Adenocarcinoma
                              pounds, polycyclic aromatric hydrocar-       The incidence of adenocarcinoma has
                              bons (PAH), and vinyl chloride. These        been steadily increasing during the last
                              chemicals are most likely encountered        twenty years. This increase is due, in
                              in certain work settings.                    part, to the improvement in diagnostic
                                                                           tools and the increase of this type of
                                                                           cancer in women. Adenocarcinoma:
alveoli: tiny air sacs
   found at the end of        TYPES OF LUNG CANCER                         • represents about 40% of lung can-
the smallest branches                                                          cer cases in the US
 of the bronchial tree;       There are two main categories of lung        • is the most common lung cancer
   oxygen passes into                                                          among women, in whom the num-
                              cancer: nonsmall cell lung cancer
 the bloodstream and
                              (NSCLC) and small cell lung cancer               ber of new cases is increasing
 carbon dioxide pass-
   es into the lungs to       (SCLC). Seventy-five to 80% of peo-          • usually starts near the outer edges
   be exhaled through         ple diagnosed with lung cancer have              of the lungs
            the alveoli       nonsmall cell lung cancer, making it         • may spread to other parts of the
                              the most common type of lung cancer.             body
                              Fifteen to 20% of people diagnosed           • bronchioalveolar adenocarcinoma
                              with lung cancer in the United States            (BAC) develops in the alveoli
                              have small cell lung cancer.
                                                                           Squamous carcinoma
                                                                           Squamous carcinoma (also known as
                              Nonsmall Cell Lung Cancer                    epidermoid carcinoma):
                                                                           • represents 30% to 35% of lung
                                                                               cancer cases in the US
                              There are three major subtypes of non-
                              small cell lung cancer: adenocarcino-        • occurs most frequently in men and
                                                                               older people of both sexes
                              ma, squamous carcinoma (formerly
                                                                           • usually starts in one of the larger
                              called epidermoid carcinoma), and
                                                                               breathing tubes
                              large cell carcinoma. Cure for NSCLC
                                                                           • is more likely to cause ulceration,
                              may be possible with surgery if detect-
                                                                               bleeding in the breathing tube, and
                              ed at an early stage. Surgery as treat-
                                                                               obstruction of the breathing tube
                              ment for NSCLC is discussed further in
                                                                               than other forms of lung cancer
                              “Chapter Six: Nonsmall Cell Lung
                                                                           • tends to grow relatively slowly
                              Cancer and Its Treatment.”
                                                                           • tends to remain localized in the
                                                                               chest longer than other types of
                                 75% to 85% of people diagnosed with
                                                                               lung cancer
                                 lung cancer have nonsmall cell lung       • tends to invade local structures
                                 cancer (NSCLC)                                near the site of the tumor
                                                                           • does not tend to metastasize early


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•   is strongly associated with smoking        breathing tubes
                                           •   tends to grow rapidly
Large cell carcinoma                       •   commonly has spread by the time
The incidence of large cell carcinoma          of diagnosis and is considered a
appears to be decreasing. However,             systemic disease at the time of
this decreased incidence could be due          diagnosis
to improvements in determining the         •   is seemingly more responsive to
types of lung cancer. Large cell carci-        chemotherapy and radiation than
noma:                                          nonsmall cell lung cancers, but
• represents about 5% to 15% of                most patients face a recurrence
    lung cancer cases in the US
• usually starts in the smaller breath-
    ing tubes                                  Approximately 15% to 20% of people
• may occur in any part of the lung            diagnosed with lung cancer have
• has tumors that are usually large by         small cell lung cancer (SCLC).
    the time they are diagnosed
• tends to invade the mediastinum
    and the central nervous system
• tends to have larger cells than other    RELATED CANCERS
    types of lung cancer
• tends to have a worse prognosis if       There are other types of cancers that
    the cells are poorly differentiated    occur in the lungs. These cancers can
    (the cells do not look like normal     also occur as primary tumors in other
    cells). Well-differentiated, or more   parts of the body. Two of these — car-
    normal looking, large cell lung        cinoid tumors and malignant mesothe-
    cancer has a better prognosis          lioma — are briefly discussed here.


Small Cell Lung Cancer                     Carcinoid Tumors

Small cell lung cancer (also called “oat   Carcinoid tumors are a low-grade can-
cell” because SCLC cells have the          cer of neuroendocrine cells. The
appearance of oat grains) is a more        endocrine system is made up of the
aggressive type of lung cancer than        organs that produce many of the hor-
NSCLC. As stated earlier, SCLC is          mones the body needs. These organs
also less common than NSCLC.               include the thyroid, hypothalamus, and
SCLC:                                      pituitary, among others. The majority
• spreads to lymph nodes and other         of people with carcinoid lung tumors
    organs more quickly than NSCLC         have no symptoms at diagnosis. When
• is more responsive to chemothera-        symptoms do occur, they can include
    py and radiation than is NSCLC         flushing, diarrhea, cardiac problems,
• is diagnosed predominantly in            and wheezing, all of which can be
    smokers or former smokers              symptoms of other disorders or dis-
• usually starts in one of the larger      eases. Surgery is the only curative

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                                  therapy and only if the lesion is local-    cannot be cured with surgery alone,
                                  ized. Chemotherapy and radiation are        due to high rates of local and systemic
                                  currently used only for palliation.         recurrences. Eighty percent of patients
                                  Carcinoid tumors:                           have residual disease following
                                  • appear in many areas of the body,         s u rg e r y. The five-year survival rate
       palliation: the
relief of symptoms of                 but the bronchus of the lung is the     using surgery alone is less than 1%.
 a disease or disorder                fourth most common site for pri-
                                      mary carcinoid tumors.                  Surgery is usually used to control or
 visceral pleura: the             • are a rare form of lung cancer, rep-      prevent pleural effusion. It is also used
   lining of the lungs
                                      resenting 1% to 5% of lung cancer       to decrease the discomfort caused by
     pleural effusion:                diagnoses                               the bulk of the tumor. Pleural effusion
     fluid that collects                                                      is controlled by putting talc (a form of
 between outer lining                                                         powder) into the chest cavity. This pro-
  of the lungs and the            Malignant Mesothelioma                      cedure has a 90% effectiveness rate for
    lining of the chest
                                                                              palliation.
      wall; also called
           pleural fluid          Malignant mesothelioma is a rare form
                                  of cancer that can originate in several     Radiation is not appropriate treatment
       multimodality              areas of the body, but most commonly        except in context of combined treat-
    therapy: therapy                                                          ment or for symptomatic treatment of
                                  i n t h e visceral pleura of the lungs.
  that combines more
                                  There are about 2,200 new cases of          pain associated with metastases.
  than one method of
    treatment, such as            malignant mesothelioma of the viscer-       Radiation treatment requires high
   chemotherapy and               al pleura each year. Mesothelioma is        doses over a very large area. However,
             radiation            difficult to diagnose and is rarely cur-    high doses can cause damage to other
                                  able. The most common symptoms are          tissues, especially heart and cancer-
                                  dyspnea and chest wall pain.                free lung tissue.

                                  Staging for malignant mesothelioma is       Another commonly used treatment for
                                  similar to that of nonsmall cell lung       mesothelioma is combination chemother-
                                  cancer. Asbestos is the predominant         apy (using more than one chemotherapy
                                  cause of malignant mesothelioma of          agent), similar to that used to treat nons-
                                  the visceral pleura. The period between     mall cell lung cancer. The results are
                                  the time of exposure to asbestos and        similar to those for nonsmall cell lung
                                  the onset of symptoms is about 35 to 40     cancer. Just as with nonsmall cell lung
                                  years. Because of this late onset, it       c a n c e r, there is no combination of
                                  occurs most commonly in the later           drugs that works all the time for every
                                  years of life. It also occurs more often    person, and multimodality therapy
                                  in men than in women.                       appears to offer the best treatment at
                                                                              this time.
                                  For localized stage I disease with a his-
                                  tory of asbestos exposure, surgery may
                                  be curative. For stages II to IV, treat-    SUMMARY
                                  ment by surgery is still evolving. Most
                                  patients, however, regardless of stage,     Lung cancer is an increasingly com-


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mon disease, with more than 171,000
Americans being diagnosed this year
alone. Lung cancer has become a
major worldwide concern and will
remain so for years to come.

Knowing the type of lung cancer you
have and its basic characteristics may
help you better understand the disease
and the treatment options you will
encounter in the months and years ahead.




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              Lung Cancer Diagnosis and Staging
                                               Table of Contents                                4
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1
Symptoms of Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2
Early Detection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.2
    An Early Detection Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3
Diagnosing Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3
    Health History . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.3
    Physical Exam . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4
    Diagnostic Tests . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4
        Chest x-ray . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.4
        CT and MRI Scans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5
        PET Scans . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5
        Sputum Cytology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5
        Genetic Markers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.5
    Follow-up Tests . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.6
        Biopsy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.6
        Bronchoscopy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.6
        Mediastinoscopy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.6
        Thoracoscopy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.7
   Surgical Procedures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.7
        Thoracotomy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.7
Staging Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.7
    Nonsmall Cell Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.8
        The Use of PET Scan in Staging NSCLC . . . . . . . . . . . . . . . . . . . . . . 4.9
    Small Cell Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.11
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.11
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                          Lung Cancer Diagnosis
                                    and Staging                           4
INTRODUCTION                                of symptoms is not screening; this is
                                            called “case-finding.” Because of tech-
                                            nological advances and the efforts of

B
        ecause of the large size of the
        lungs, cancer may grow for          lung cancer advocates worldwide,
        many years, undetected, with-       screening policies are receiving atten-
out causing suspicion. Lung cancer can      tion. It may be possible that, within a
even spread outside the lungs without       few years, screening for lung cancer
causing severe symptoms. When               will be as acceptable as screening for
symptoms do occur, one of the most          breast, prostate, colorectal, cervical,
common is a persistent cough. Often, a      and skin cancers. In most cases, lung
persistent cough is mistaken for chron-     cancer is discovered when someone
ic bronchitis and treated with antibi-      sees his or her healthcare provider for
otics without testing for lung cancer.      treatment of a symptom, such as a per-
About 75% of lung cancer patients           sistent cough, that does not resolve
experience a cough prior to diagnosis.      itself and the physician suspects can-
Other symptoms that are often ignored       cer. In some cases, lung cancer is dis-
or explained away as signs of aging are     covered during a routine check-up.
dyspnea (difficult breathing) and
fatigue. These are all reasons why lung
cancer often goes undetected until it is        “My lung cancer was diagnosed when
                                                I went in for a routine chest X-ray
quite advanced.                                 b e f o re my surg e ry for something
                                                e n t i rely unrelated. Fortunately for
                                                me, the lung tumor was still small
   “I had a deep, hacking cough for a           enough to be removed surgically, so I
   long time. It’s what led my doctor to        had lung surgery first.” — lung can -
   do a chest x-ray.” — lung cancer sur -       cer survivor
   vivor

                                            Regardless of how lung cancer is dis-
Early diagnosis of lung cancer is not       covered, once it is suspected, a series
common because screening for lung           of tests are required to confirm the
cancer is very rarely done. Even            diagnosis. The results of these tests
though chest x-rays can detect small        will help to determine the best course
tumors and CT scans can detect even         of treatment and the prognosis.
smaller tumors, these tests are general-
ly requested only if symptoms are pre-      The information provided here is
sent. Diagnostic testing in the presence    intended to shed some light on the


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              process of lung cancer diagnosis and          Sometimes, symptoms may seem unre-
              staging. This information can also help       lated to the lungs. Because lung cancer
              you become familiar with the vocabu-          is most likely to be diagnosed in late
              lary you will hear and some of the pro-       stage, the primary cancer may have
              cedures you may experience.                   already spread to the other lung or to
                                                            other parts of the body. Depending
                                                            upon where the cancer spreads and
              SYMPTOMS OF                                   which organs are affected, symptoms
              LUNG CANCER                                   can include headaches, bleeding, weak-
                                                            ness, bone fractures, or blood clots.
              Many people do not have symptoms, or
              have only vague symptoms, until the
              disease has progressed significantly.As       EARLY DETECTION
              a result, only 15% of lung cancers are
              discovered in early stages when the           Screening programs are designed to
              possibility of curative treatment is          identify and follow high-risk patients
              greatest.                                     in order to detect disease as early as
                                                            possible. Currently, there are no offi-
                                                            cially recommended screening pro-
                                                            grams for lung cancer. However, all
                 Smokers and former smokers should
                 be watched for symptoms like cough -       those who think they may be at risk for
                 ing, wheezing, pain, shortness of          lung cancer because of smoking histo-
                 breath, and fatigue. If there is any       ry, occupation, or family health history
                 suspicion that things are not quite        should inform their healthcare
                 right, a thorough examination and          providers and discuss appropriate diag-
                 diagnostic testing should begin.
                                                            nostic testing.

                                                            The International Conference on the
              When lung cancer does cause symp-             Prevention and Early Diagnosis of
              toms, they can include:                       Lung Cancer held in Varese, Italy in
              • coughing                                    December 1998 issued a consensus
              • shortness of breath (dyspnea)               statement. Excerpts of that statement
              • fatigue                                     follow.
              • chest, shoulder, upper back, or arm
                 pain                                       … “For those who develop lung cancer,
              • repeated pneumonia or bronchitis            outcome is dramatically better when
              • blood coughed up in the sputum              the disease is detected at an early stage
                 (hemoptysis)                               and surgically treated. … Available
              • loss of appetite and weight loss            clinical data demonstrate that the vast
              • general pain                                majority of curable lung cancers are
              • hoarseness                                  c u rrently detected by chest x-rays and
              • wheezing                                    CT scans, although there is no pro v e n
              • swelling in the face or neck                strategy to assure early detection. …


        4.2
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The Conference encourages national          possible in the near future to screen for
governments and public health organi -      a genetic predisposition to lung cancer.
zations involved in cancer prevention       Those who are at greater risk could
and control to more aggre s s i v e l y     then be more closely monitored.
address tobacco control and to urgent -
ly consider the issues surrounding the      Much work has yet to be done to devel-
early detection of lung cancer. …”          op a widely accepted, valid and cost-
                                            effective early-detection program for
                                            lung cancer. Early detection is the key
An Early Detection Model                    to improving survival following a diag-
                                            nosis of lung cancer.
Early detection may improve lung can-
cer survival rates. A model early detec-
tion program could begin with a patient     DIAGNOSING
questionnaire to gather smoking histo-      LUNG CANCER
ry (tobacco, marijuana, crack-cocaine)
and other information related to that       The diagnosis of lung cancer is a multi-
person’s risk for lung cancer.              step process that requires you and your
                                            healthcare providers to make decisions
If a smoking history is established,        at various points about what you will
breathing or pulmonary function tests       need. To illustrate this process for diag-
and scanning tests such as a CT scan or     nosing and staging of lung cancer,                algorithm: a step-
chest x-ray would be ordered. CT scan       ALCASE developed an algorithm, or                 by-step method of
can detect a tumor much earlier than it     chart (see the “Medical Records Of ...”           solving a problem,
can be seen on a chest x-ray, although      pocket at the back of this manual). T h i s       for example, making
new technological developments may          algorithm shows, in graphic form, the             a diagnosis
improve x-rays. New sputum cytology         pattern of testing you may undergo, or
tests are in development. In these tests,   have already undergone, during the diag-
sputum or fluid from the lungs will be      nosis and staging of your lung cancer.
examined to determine whether any
cancer cells are present.
                                            Health History
   “I was so grateful that my primary       One of the most important steps a
   care physician referred me to a pul -    physician takes when diagnosing lung
   monologist who requested a CT scan.
                                            cancer is obtaining a health history.
   My tumor was small, stage I, and it
   would have been invisible on a chest     Smoking history is an important part of
   x-ray.”                                  the health history as is any history of
                — lung cancer survivor      exposure to asbestos and other envi-
                                            ronmental factors.

Some people have a genetic suscepti-        Your health history will tell your physi-
bility for lung cancer, and it may be       cian about any significant symptoms


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                                 you may be experiencing, such as a               that can help to locate a tumor. If symp-
                                 nagging cough, dyspnea, fatigue, or              toms are present at the time a chest x-
                                 back or chest pain. Your family health           ray is done, the cancer may have
                                 history will also be considered. For             already spread into the lymph nodes or
                                 instance, your physician will most like-         to other parts of the body. Nonetheless,
                                 ly inquire about cancer in close rela-           among cancers that are detected by
                                 tives, which may indicate a genetic              chest x-ray when symptoms are not
                                 predisposition to lung cancer.                   present, about 50% have stage I dis-
                                                                                  ease. Among such patients, the 5-year
                                                                                  survival ranges from 60% to 85%.
                                 Physical Exam
                                                                                  A chest x-ray may not show a tumor,
                                 During the physical exam, your doctor            possibly because it is too small or it
                                 will listen to your lungs and the sounds         may be hidden behind a rib or the
                                 of your breathing. In addition, he or she        breastbone. But, the x-ray may show
                                 may request special breathing tests, or          other clues that indicate a problem
   lymph node: small                                                              related to lung cancer. For example, an
          bean-shapted,          pulmonary function tests, to determine
       immune system             if your breathing is impaired. He or she         x-ray may show an accumulation of
    organ that acts as a         also will check for swollen lymph                fluid between the lung and the chest
filter to collect bacte-         nodes in the neck or in the region               wall, called a pleural effusion. An x-ray
  ria and other foreign          above the collarbones, and will feel the         may show enlarged lymph nodes or
 substances processed                                                             pneumonia.
   by the immune sys-            liver to see if it is enlarged or if any
tem; lymph nodes are             masses are present in the abdomen.
    connected by lym-                                                             Even if the diagnosis of lung cancer is
         phatic vessels                                                           already clear, your doctor may want to
  throughout the body                                                             take an x-ray to compare with previous
                                 Diagnostic Tests
                                                                                  and future x-rays. This will help chart
                                                                                  the course of the disease and provide
                                                                                  important information about changes
                                    “I was really upset about some of the
                                    procedures I had to go through for my
                                                                                  that occur.
                                    diagnosis. It was worth it, though. I
                                    feel like my doctors really got a clear       New x-ray technologies may help to
                                    picture of the type of cancer I have          make chest x-rays more useful for
                                    and how far it has spread. We are             diagnosing lung cancer. One of the
                                    coming up with a treatment plan               new technologies allows x-rays to by-
                                    now.”
                                                  — lung cancer survivor
                                                                                  pass the bones in the chest so that only
                                                                                  the lung tissue is seen, making it easier
                                                                                  to read the x-ray. Another technology
                                                                                  that is currently being tested uses com-
                                 One or more of the following diagnos-            puterized scans of x-rays to avoid
                                 tic tests may be conducted:                      human error.

                                 Chest x-ray                                      CT and MRI Scans
                                 An x-ray is a two-dimensional picture            CT (computerized axial tomography)

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and MRI (magnetic resonance imag-            in the chest.
ing) scans use computerized pictures to
provide three-dimensional images of          Sputum Cytology
the body. They can show the size,            If there are cancer cells in the bronchi,
shape, and location of a tumor.              some of these cells are likely to be shed
                                             and carried up the throat in the sputum.
If you or your healthcare provider           Sputum cytology is the examination of
believe you might have symptoms of           a sample of sputum under a microscope
                                                                                              sputum: mucus
lung cancer, the best diagnostic test to     for signs of cancer cells. Sputum may            coughed up from the
use may well be a CT scan. The CT            be collected by coughing up any fluid            broncial tubes.
scan is usually less expensive than an       from the lungs into a collection vessel
MRI and in most instances the pre-           or through a bronchoscope, a tube                cytology: the study
                                                                                              of cells
ferred test because the MRI has little       inserted into the throat and down into
advantage, if any.                           the lungs, which can obtain fluid or             genetic marker: a
                                             sputum from the lungs.                           change in the DNA
Both CT and MRI scans also are useful                                                         or genes of a cell that
in determining whether a tumor has           An examination of the sputum can                 can indicate that can-
                                                                                              cer is present
spread from the lung to the lymph            detect early cancer because their cells
nodes or other organs in the chest or        can be found in the sputum long before
other parts of the body.                     a tumor is evident on an x-ray, CT, or
                                             MRI scan. However, sputum cytology
An improved CT technology is a “spi-         may not always detect the presence of
ral” or “helical” CT scan. If you have       cancer. This is because it is often diffi-
scans done, it’s important that the latest   cult to get sputum from the lungs. Also,
technology be used. For most, a high         sputum cytology cannot determine the
quality CT scan is preferred. MRI            size or location of a tumor, so it is usu-
examinations are usually limited to          ally followed up by other tests if the
special circumstances.                       results are positive.

PET Scans                                    New products may soon be available
PET (positron emission tomography)           that will help doctors to get a better
scanning is a relatively new technolo-       sputum sample, even from these hard-
gy. It is different from CT and MRI          to-reach areas of the lungs.
scanning because PET scans discrimi-
nate between cells that are rapidly          Genetic Markers
dividing, such as tumor cells, and nor-      Researchers are working to identify
mal cells. While PET scans will prob-        genetic markers, or “fingerprints,” that
ably not be used as a screening or even      indicate the presence of tumors.
a diagnostic test for lung cancer, it can    Markers are detected in blood samples
be used as a follow-up to chest x-rays,      using special laboratory tests. These
CT scans, or MRI scans to determine if       tests are not routinely run at present.
a tumor is cancerous or benign and           Studies in lung cancer are currently
whether there are any metastatic sites       underway. Hopefully, the identification


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                               of markers will ultimately allow for         how or from where a sample of tissue
                               earlier detection of lung cancer.            is obtained, the cells are examined by a
                                                                            pathologist to determine if cancer is
                                                                            present, and, if so, its type and stage.
                               Follow-up Tests                              Only by examining cells can the diag-
                                                                            nosis be made.
                               If a suspicious area is seen in any of the
                               scans or on an x-ray, or if suspicious       Bronchoscopy
                               cells are found in the sputum, your doc-     Bronchoscopy involves the use of a
                               tor will request that more tests be done.    bronchoscope to directly view the
                                                                            bronchi. A fiberoptic bronchoscope is a
                               If lung cancer is diagnosed by your pri-     flexible or a rigid endoscopic or tele-
                               mary care physician or a pulmonolo-          scopic instrument containing tightly
       endoscope: an           gist, you should be referred to cancer       packed, long glass fibers that transmit
     instrument with a
  microscope attached          specialists to determine the best course     light into the bronchus and provide a
       to a tube that is       of treatment. These include a thoracic       view to the eye of the observer. The
inserted into the body         surgeon, a medical oncologist, and a         fiberoptic bronchoscope is flexible to
     through a normal          radiation oncologist. Cancer specialists     allow it to go around corners. If a
  opening such as the          treat cancer patients every day and are      tumor or a suspicious-looking spot is
   mouth or through a
        small incision,        up to date on treatment options. See         seen, a tissue sample can be obtained
    through which the          “Chapter Eleven: Navigating the              through the bronchoscope. Local anes-
  organs and cells can         Healthcare System and Other Practical        thetic and mild sedation are often used
                be seen        Issues” for a discussion of the oncolo-      to make the patient comfortable.
                               gy professionals who make up your
  mediastinum: area
 beneath the sternum           treatment team.                              A relatively new technique known as
   between the lungs                                                        autoflourescence bronchoscopy allows
     that contains the         Biopsy                                       physicians to observe whether cells
heart, trachea, esoph-         A biopsy involves obtaining a small          flouresce (reflect light) normally.Aflu-
      agus, and many           piece of tissue and examining it             orescent dye is injected into and taken
          lymph nodes
                               through a microscope. A biopsy is nec-       up by the tumor cells that causes them
                               essary to confirm a cancer diagnosis         to fluoresce. If the cells do not fluo-
                               and to identify the specific type of can-    resce normally, a sample is taken to
                               cer and its stage. In some cases, a nee-     determine whether they are cancerous.
                               dle is used to aspirate (draw up) a sam-     This technique is used in special cir-
                               ple to be examined for cancer cells. A       cumstances when ordinary bron-
                               CT scan is usually done prior to a nee-      choscopy fails to reveal a tumor detect-
                               dle aspiration to find the tumor to be       ed by sputum cytology.
                               tested. Sometimes, surgical biopsies of
                               the lung may be performed, during            Mediastinoscopy
                               which the chest is opened so that all or     Mediastinoscopy involves inserting a
                               part of the tumor or lymph nodes can         rigid endoscope through a small inci-
                               be removed. In addition, biopsies of the     sion in the neck or chest into the
                               chest lining, lymph nodes, bone, or          mediastinum. The procedure is done
                               liver may be performed. No matter            while the patient is under anesthesia.

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The purpose of this procedure is to         could provide a cure. If a tumor is
determine whether cancer has spread         found, it is biopsied or removed during
to the chain of lymph nodes near the        the surgery. If necessary, frozen sec-
trachea, one of the first places lung       tions of tissue examined by the pathol-
cancer is likely to spread.                 ogist can confirm the diagnosis, includ-
                                            ing the histologic type of lung cancer.
Thoracoscopy                                The margins, or edges, of the resection
Thoracoscopy is a limited surgical pro-     can also be examined for tumor frag-
cedure that allows the lining of the        ments. If the pathologist’s report indi-
chest wall and the surface of the lungs     cates that the tumor type is favorable
to be examined for tumor growth. The        for removal (excision) part or all of the
procedure is performed in an operating      lung will be removed. In this case, both
room while the patient is under anes-       diagnosis and treatment are carried out
thesia. In the procedure, the thoraco-      at the same time.
scope is inserted through a small inci-
sion in the chest wall.
                                            STAGING LUNG CANCER
The newest technique is called video-
assisted thoracoscopic surgery (VATS).      The process of staging categorizes each
When this procedure is used, a second       cancer into certain standardized
small incision is made to allow the         groups, which helps determine treat-
insertion of a small video camera. The      ment options. Staging defines the
camera aids the surgeon in scanning         extent of the spread of the cancer from
the chest wall and lungs, allowing sus-     its original location in the lung to other
picious pieces of tissue to be removed.     parts of the body. Staging also deter-
                                            mines the prognosis of disease.

Surgical Procedures
                                                The major indicator of prognosis of
For some people, the next steps will            lung cancer is its stage; the size, loca -
                                                tion, and invasiveness of the tumor;
include a surgical procedure. This is           the involvement of regional lymph
usually done when the physician                 nodes; and whether there are distant
believes there is a significant chance          metastases.
that cancer is present and that the tumor
or tumors can be successfully removed.
                                            Staging is done either surgically and/or
Thoracotomy                                 using scanning tests. When a tumor is
Thoracotomy is a major operation dur-       detected in the lungs, the doctor will
ing which the surgeon opens up the          also order scans, usually CT scans, of
chest to examine the lung. This surgery     the abdomen (including the liver and
is usually done only when the physi-        adrenal glands located on the kidneys),
cian is quite sure lung cancer is present   the brain, and the bones to see if there
and that excision (surgical removal)        are any signs of cancer. Positron emis-


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              sion tomography (PET) scans (see              Because nonsmall cell lung cancer and
              Page 4.9 for a discussion of PET scans        small cell lung cancer are usually
              in the staging of NSCLC) can also be          staged in somewhat different ways,
              used at this time and may have a num-         their staging systems are described sep-
              ber of advantages, although PET scan          arately below.
              equipment is not available in every
              community. The newer the equipment
              used for the scans, the better the scans      Nonsmall Cell Lung Cancer
              will be, because scanning technology
              has improved significantly in the past        Most physicians use the TNM classifi-
              decade.                                       cation system to stage nonsmall cell
                                                            lung cancer. “T” refers to the size of the
                                                            t u m o r, “N” refers to node involvement,
                 Staging enables healthcare providers       and “M” refers to metastasis. Basically,
                 to communicate more effectively with
                                                            staging is based on the size and location
                 each other about a lung cancer
                 patient in their care.                     of the primary tumor, the size and loca-
                                                            tion of tumors other than those in the
                                                            lungs, the presence of cancer cells in
              Depending on the results of the tests         lymph nodes, and the spread of the can-
              described above, the chest surgeon, in        cer to other organs. All of this informa-
              consultation with the pathologist, the        tion is put together to determine the
              radiologist, radiation oncologist, and        stage of a tumor.
              medical oncologist will establish the
                                                            Below is a broad summary of the
              stage of the cancer. This staging deter-
                                                            stages of nonsmall cell lung cancers.
              mines whether or not the lung cancer
                                                            See Tables I and 2 for more detailed
              can be surgically removed. If no can-
                                                            information on staging.
              cer is detected in any of the other
              o rgans, the cancer will be termed
              “resectable,” which means it can be               If your physician cannot tell you
              surgically removed. If there is a ques-           exactly what TNM stage you have
              tion, then surgery to make a further              before recommending treatment, con -
              determination is usually suggested.               sult another physician.

              During surg e r y, the lungs and the
              lymph nodes in the chest cavity are           •   Occult cancer means that cancer-
              examined. This is called surgical stag-           ous cells are discovered in the spu-
              ing. If the tumor(s) can be removed,              tum, but that no tumor can be found
              this is done at the same time the cancer          in the lung.
              is being staged. Every person who has
              been diagnosed with lung cancer               •   Stage 0, also called carcinoma in
              should have his or her case discussed at          situ, describes cancer confined to a
              a multimodality conference of oncolo-             local area that has not grown
              gy specialists to ensure that the most            through the top lining of the lung
              appropriate therapy is recommended.               and is incapable of spreading.

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•   Stage I NSCLC has not spread
    beyond its primary location. Stage I
    NSCLC is further divided into stage
    IA and IB, both of which are usual-
    ly resectable, that is, removable
    with surgery, if the patient can toler-
    ate or withstand the surgery.

•  Stage II NSCLC has spread to near-
   by lymph node(s) in the lungs.
   Stage II NSCLC is further divided
   into stage IIA and IIB, both of useful in staging lung cancer, that is, in
   which may be resectable.               determining how far the cancer has
                                          spread. PET scans measure the func-
• Stage III NSCLC has spread to sur- tion and metabolism in normal and dis-
   rounding structures and to the lymph eased tissue. They can detect changes in
   nodes. Stage III NSCLC is further function before physical changes are
   divided into stage IIIA or stage IIIB. evident. In this way, PET scans may
                                          show very early changes caused by dis-
• Stage IV NSCLC has spread to ease. PET scans are helpful in identify-
   other parts of the body. Stage IV ing early metastatic sites in the lungs,
   NSCLC usually cannot be resected, lymph nodes, and elsewhere in the
   except under special circumstances. body. This can be very helpful in deter-
                                          mining treatment strategies for lung
The Use of PET Scan in Staging            c a n c e r. For example, if there are
NSCLC                                     metastatic sites detected via PET scan,
PET (positron emission tomography) surgery and the trauma it entails may be
scanning is a relatively new imaging avoided, depending upon the extent of
technique that has been shown to be the metastases.




                   PET Scan Showing Presence of Lung Cancer

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                                                              Table 1. TNM Descriptors
                                 Primary Tumor (T)                              Regional lymph nodes (N)

                                 TX     Primary tumor cannot be assessed,       NX        Regional lymph nodes cannot be
                                        or tumor proven by the presence of                assessed
                                        malignant cells in sputum or
                                        bronchial washings but not visual-      N0        No regional lymph node metastasis
                                        ized by imaging or bronchoscopy
                                                                                N1        Metastasis to ipsilateral peri-
                                 TO     No evidence of primary tumor                      bronchial and/or ipsilateral hilar
                                                                                          lymph nodes, and intrapulmonary
                                 Tis    Carcinoma in situ                                 nodes involved by direct extension
                                                                                          of the primary tumor
                                 T1     Tumor ≤3cm in greatest dimension,
                                        surrounded by lung or visceral          N2        Metastasis to ipsilateral mediastinal
                                        pleura, without bronchoscopic evi-                and/or subcarinal lymph node(s)
                                        dence of invasion more proximal
                                        than the lobar bronchus* (i.e., not     N3        Metastasis to contralateral mediasti-
                                        in the main bronchus)                             nal, contralateral hilar, ipsilateral or
                                                                                          contralateral scalene, or supraclav-
                                 T2     Tumor with any of the following                   icular lymph node(s)
                                        features of size or extent: >3 cm in
                                        greatest dimension involves main        Distant metastasis (M)
                                        bronchus, ≥2cm distal to the carina,
                                        invades the visceral pleura, associ-    MX        Presence of distant metastasis can-
                                        ated with atelectases or obstructive              not be assessed
                                        pneumonitis that extends to the
                                        hilar region but does not involve       M0        No distant metastasis
                                        the entire lung
                                                                                M1        Distant metastasis present ***
                                 T3     Tumor of any size that directly
                                        invades any of the following: chest     *   The uncommon superficial tumor of any
                                        wall (including superior sulcus             size with its invasive component limited to
                                        tumors), diaphragm, mediastinal             the bronchial wall, which may extend
                                        pleura, parietal pericardium; or            proximal to the main bronchus, is also clas-
                                                                                    sified T1.
                                        tumor in the main bronchus <2cm
                                                                                ** Most pleural effusions associated with lung
                                        distal to the carina, but without           cancer are due to tumor. However, there
                                        involvement of the carina; or asso-         are a few patients in whom multiple
                                        ciated atelectasis or obstructive           cytopathologic examinations of pleural
                                        pnuemonitis of the entire lung              fluid show no tumor. In these cases, the
                                                                                    fluid is nonbloody and is not an exudate.
                                 T4     Tumor of any size that invades any          When these elements and clinical judgment
                                        of the following: mediastinum,              dictate that the effusion is not related to the
                                        heart, great vessels, trachea, esoph-       tumor, the effusion should be excluded as a
 ipsilateral: situated                                                              staging element and the patient’s disease
                                        agus, vertebral body, carina; or
on, pertaining to, and                                                              should be staged T1, T2, or T3. Pericardial
                                        tumor with a malignant pleural or           effusion is classified according to the same
   affecting the same                   pericardial effusion,** or with
                   side                                                             rules.
                                        satellite tumor nodule(s) within the    *** Separate metastatic tumor nodule(s) in the
                                        ipsilateral primary-tumor lobe of           ipsilateral (the same side) nonprimary-tumor
                                        the lung                                    lobe(s) of the lung also are classified M1.



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                                                “extensive” rather than the TNM stag-
             Table 2                            ing system, although some oncologists
  Stage Grouping — TN Subsets*                  use both systems. Tables 1 and 2 can be
                                                used as a reference if your physician
 Stage             TNM Subset                   has told you your TNM status.

 0                 Carcinoma in situ            Limited-stage SCLC involves one lung,
                                                the mediastinum, and lymph nodes, and
 IA                T1N0M0                       area that can be encompassed by a sin-
                                                gle radiation therapy treatment.
 IB                T2N0M0                       Limited-stage corresponds with stages I
                                                to IIIB of the TNM staging system.
 IIA               T1N1M0
                                                Extensive-stage SCLC has spread
 IIB               T2N1M0                       beyond the sites of limited-stage SCLC
                   T3N0M0                       and the lymph nodes in the central chest
                                                area. Extensive-stage corresponds with
 IIIA              T3N1M0                       stage IIIB with pleural effusion and
                   T1N2M0                       stage IV in the TNM staging system.
                   T2N2M0
                   T3N2M0
                                                SUMMARY
 IIIB              T4N0M0
                   T4N1M0                       There are many diagnostic and staging
                   T4N2M0                       procedures currently being used to deter-
                   T1N3M0                       mine the type and extent of the lung can-
                   T2N3M0                       c e r. Accurately diagnosing and staging
                   T3N3M0                       of lung cancer is critical in developing an
                   T4N3M0                       e ffective treatment program.

 IV                Any T Any N M1

 * Staging is not relevant to occult carcino-
 ma, designated TXN0M0.




Small Cell Lung Cancer

Small cell lung cancers are usually
staged using the terms “limited” and


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                                                  Clinical Trials
                                               Table of Contents                                5
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1
What is a Clinical Trial? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1
How Does a Clinical Trial Work? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.1
    Phase I Trials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2
    Phase II Trials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2
    Phase III Trials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.2
    Phase IV Trials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3
    FDA Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.3
What are Benefits of Participating in a Clinical Trial? . . . . . . . . . . . . . . . . . . 5.4
Are There Risks Involved in Clinical Trials? . . . . . . . . . . . . . . . . . . . . . . . . . 5.4
    Informed Consent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.4
    Questions to Ask . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.5
For More Information on Clinical Trials . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.5
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5.6
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                                             Clinical Trials                 5
INTRODUCTION                                  tested in clinical trials and found to be
                                              helpful.


T
        oo frequently, lung cancer is
        undertreated. Many people diag-
        nosed with lung cancer are not            When considering treatment, ask your
                                                  doctor about the possibility of enter -
referred to oncology specialists because          ing a clinical trial. If there is one for
the diagnosing physicians believed that           which you qualify, it may provide you
treatment would not offer any benefit. In         with the most up-to-date, aggressive
the past, treatments were often more              treatment available.
toxic than the disease, and the side
e ffects were difficult to manage. Many
people were told that “nothing could be       Many forms of treatment are tested in
done” or that “the treatment would be         clinical trials. New chemotherapy
worse than the disease.” Research into        drugs, surgical and radiation tech-
new treatments has changed this. New          niques, vaccines, and biological thera-
treatments are allowing people with           pies are a few of the treatments cur-
lung cancer to live longer and with           rently being studied in clinical trials as
fewer treatment-related side eff e c t s .    possible treatments for all types of lung
This change has been brought about            cancer. Clinical trials often involve
through clinical trials.                      adding a new treatment after standard
                                              treatment has been given.

WHAT IS A                                     Before any chemotherapy treatment is
                                              tested with patients it is studied first in
CLINICAL TRIAL?
                                              tissue culture in the laboratory. If it is          tissue culture: the
                                              determined to be potentially effective,             technique or process
A clinical trial is a type of medical                                                             of keeping tissue
                                              it is next tested with animals. Finally, it
research that focuses on the effects that                                                         alive and growing in
                                              is tested with people.
treatments have on patients. These care-                                                          a culture medium
fully planned scientific studies help doc-
tors select the safest, most effective
approaches to cancer treatment. The           HOW DOES A CLINICAL
basic question asked in any clinical trial    TRIAL WORK?
is: “Is this treatment better and safer
than the treatment(s) currently used to       The Food and Drug Administration
treat this disease?” New medical break-       (FDA) oversees clinical trials in which
throughs that improve the lives of many       a new chemotherapy or other new
people emerge because they have been          treatment is being studied. Whether the

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                        protocol has been prepared by the            how a new treatment should be admin-
                        National Cancer Institute (NCI), physi-      istered (orally, intravenously, by injec-
                        cians in either academic institutions or     tion, inhalation, etc.), how often, and in
protocol: medical       one of the groups of oncologists from        what dosage. The primary objective of
   treatment plan
                        around the United States called “coop-       a Phase I trial is to define the proper
                        erative groups,” or a pharmaceutical         dosing and identify side effects. A
                        company, if it is a new treatment, it        Phase I trial usually only enrolls a
                        must be approved by the FDA. The             small number of patients.
                        experimental protocol must then be
                        reviewed by the Investigational
                        Review Board (IRB) of the hospital or        Phase II Trials
                        other institution where the study will
                        be conducted.                                A Phase II trial provides preliminary
                                                                     information about how well the new
                        There are different phases of clinical       treatment works and generates more
                        trials when a new drug or other treat-       information about safety and benefit.
                        ment is being considered for approval        Phase II studies may focus on a partic-
                        by the FDA.                                  ular type of cancer or on general types
                                                                     such as solid tumors.
                        Only after a clinical trial has passed
                        many critical review steps can it be
                        opened to the public. The FDA reviews        Phase III Trials
                        only those trials in which they will be
                        asked to render a decision as to the         These trials compare a promising new
                        benefit to the public of the drug or         drug, combination of drugs, or proce-
                        treatment being tested.                      dure with the current standard therapy.
                                                                     Phase III trials typically involve large
                        If the clinical trial is to evaluate a new   numbers of patients from doctors’
                        drug, the first step is an action plan       o ffices, clinics, and cancer centers
                        called the Investigational New Drug          nationwide. The reason that the clinical
                        Application (IND) that is presented to       trial has been initiated is that the supe-
                        the FDA. This application contains           riority of one treatment over the other
                        everything known about the therapy,          has not yet been firmly established.
                        including all the data from laboratory
                        and animal tests. If the FDA feels that      If you participate in a Phase III treat-
                        the therapy might possibly benefit peo-      ment trial, you are likely be random-
                        ple, it approves the IND and the first       ized (assigned by chance) to a group
                        clinical trials can begin.                   receiving either the new intervention or
                                                                     the standard intervention. Neither you
                                                                     nor your physician choose whether you
                        Phase I Trials                               get the new intervention or the standard
                                                                     treatment. Trials designed in this way
                        These first studies in people evaluate       are also called randomized controlled


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trials. If you are assigned the standard    leading oncologists from the around
intervention, you receive what experts      the United States. The committee also
view as the best treatment available.       includes a lung cancer survivor who
Experts believe that each treatment is      brings the special patient/survivor per-
effective, but really don’t know which      spective to the discussions.
one is better. If you are assigned the
new intervention, you receive a treat-      Approval by the FDA generally means
ment that some experts think may have       that insurance companies will pay for
some advantages over the standard.          that treatment.

                                            Once a product is approved by the
Phase IV Trials                             FDA, it may be used by a physician in
                                            any way he or she feels it will be bene-
Some use the term Phase IV to include       ficial. A therapy approved for breast
the continuing evaluation that takes        cancer, for example, may still be in
place after FDA approval, when the          clinical trials for lung cancer but
drug or treatment procedure is already      enough data available so that your
on the market and available for general     physician feels this therapy might ben-
use. This is also called a postmarketing    efit you. Your doctor could suggest to
surveillance study.                         you that he or she treat you with that
                                            t h e r a p y. However, some insurance
                                            companies will not pay for the use of a
FDA Review                                  therapy that is not approved by the
                                            FDA for that particular disease. This is
Once a product has successfully com-        called “unapproved use” or “unap-
pleted Phase I and II trials, the sponsor   proved indications.” A therapy for
(usually a pharmaceutical company)          breast cancer might not be paid for
files a New Drug Application (NDA)          when it is used to treat lung cancer.
with the FDA. In this application, the      However, many cancer advocates and
sponsor requests permission to begin        groups are working to ensure that these
Phase III trials with the anticipation      “unapproved uses” are paid for.
that the product will, at the completion
of Phase III trials, show enough benefit    Some supportive care, prevention, and
both in safety (equal or improved qual-     screening trials are not done in phases.
ity of life compared to standard care)      These trials compare groups of people
and efficacy (equal or greater reduction    using a certain anticancer strategy
in tumor growth and extended life           (counseling, behavior change, detec-
compared to standard treatment).            tion method) with groups that do not
                                            receive the test strategy.
Every product for lung cancer treat-
ment that goes through review by the
FDA has all the data for the studies
examined by a committee comprised of

                                                                                       5.3
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                                  WHAT ARE THE BENEFITS                               ARE THERE RISKS
                                  OF PA RT I C I PATING IN A                          INVOLVED IN CLINICAL
                                  CLINICAL TRIAL?                                     TRIALS?

                                  Clinical trials offer you the opportunity           Great efforts are made to ensure safety
                                  to receive the best healthcare available            for patients participating in clinical tri-
                                  and to help others currently affected by            als. Still, risks remain. These risks are
                                  lung cancer and those who will be                   greater in Phase I and II studies than in
                                  affected in the future.                             Phase III or IV studies. Discuss possi-
                                                                                      ble risks with your doctor. Before you
placebo: a substance
   containing no med-
                                                                                      enter a trial, your healthcare provider
     ication that is pre-            Clinical trials provide an opportunity           will talk with you in detail about the
    scribed or given to              to contribute to the advancement of              risks and benefits of the treatment.
  reinforce a patient’s              medical science and to help move the
expectation of getting               p ro g ress of lung cancer tre a t m e n t
                                     along.                                           Some patients are concerned that they
                     well
                                                                                      will be “guinea pigs” for medical sci-
     consent form: a                                                                  ence if they participate in a clinical
     form that advises            You can choose to participate in a clin-            trial. In Phase III cancer clinical trials,
     patients about all           ical trial and still work with your cur-            the new treatment being tested is com-
    potential risks and                                                               pared with the standard treatment. This
 benefits of any treat-
                                  rent healthcare team. Some of the ben-
      ment they are to            efits you may derive from participating             means that in most cases a patient will
   receive; a standard            in a clinical trial include:                        be receiving at least standard treatment
 procedure in all hos-            • new treatments that may be more                   for their cancer. If a placebo is used in
     pitals and clinics                effective than the standard treat-             a trial you will be informed verbally
                                       ment are available to you only if              and in writing about your chance of
                                       you are enrolled in a clinical trial           receiving the placebo.
                                  • doctors and nurses who will close-
                                       ly monitor your health status and              Not all treatments work for all people.
                                       watch very carefully for any side              Clinical trials offer patients one more
                                       effects and changes in your condi-             treatment option. They represent an
                                       tion while in the clinical trial               opportunity to receive up-to-date treat-
                                  • part of your treatment may be free                ment and contribute to medical science
                                       of charge                                      and humanity at the same time. The
                                  • satisfaction knowing that your                    good that can come from a clinical trial
                                       involvement may ultimately help                generally outweighs the risks.
                                       other people
                                  • knowing that, if one of the treat-
                                       ments being tested (either new or              Informed Consent
                                       old) is apparently much better than
                                       the another, you will be switched to           If you decide to join a clinical trial, you
                                       the better treatment                           will be asked to sign an informed con -
                                                                                      sent form. This document is required
                                                                                      by all institutions. When you sign the

                            5.4
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informed consent, you are stating that        The information provided about a trial
you have discussed the clinical trial         includes a list of researchers and infor-
with your doctor or nurse, that you           mation on how to contact them.
have been told about the possible risks
and benefits, and that you are partici-       You may want to ask such questions as:
pating in the trial because you want and      • What does the trial hope to accom-
choose to do so of your own free will.           plish?
                                              • What side effects might I experi-
                                                 ence? Are these worse than those I
                                                 might experience with standard
Questions to Ask
                                                 treatment?
                                              • Who is sponsoring the trial?
Before you join a clinical trial, talk
                                              • What should I expect if I am in the
with your healthcare providers about
                                                 trial? What should I expect if I am
the specifics of the trial. Be aware that
                                                 not in the trial?
some healthcare providers are reluctant
                                              • What are the possible benefits to
to have their patients participate in
                                                 me and my family if I go into the
clinical trials. This may be due to any
                                                 trial?
number of reasons:
                                              • Will I have to pay for the treat-
• some healthcare providers may be
                                                 ment? Will any of the treatment be
    generally concerned about their
                                                 free?
    patients participating in medical
                                              • Will joining a trial keep me from
    research
                                                 being treated with other therapies,
• some may be concerned that their
                                                 either now or later?
    patient’s participation in a clinical
                                              • Whom can I call if there are prob-
    trial will result in more work for
                                                 lems while I am in the trial? What
    the professionals and that their
                                                 phone number should I call in the
    time is already very limited
                                                 evening or on weekends?
• others may worry that patients can-
    not withstand the more frequent
                                              Because new treatments can become
    office visits that might be required
                                              available more quickly if more people
• still others may believe that a stan-
                                              participate in clinical trials, carefully
    dard treatment regimen will be
                                              consider this option.
    best

Your healthcare providers may have
questions and concerns about the spe-         FOR MORE INFORMATION
cific trial you are considering.              ON CLINICAL TRIALS

In any case, it is important to talk over     To learn more about clinical trials in
the possibility of joining a clinical trial   general and about the specific clinical
with your healthcare provider or with a       trials now available for people with
researcher who is administering the           lung cancer, call or contact one or more
trial before you make your decision.          of the following:

                                                                                          5.5
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              •   National Cancer Institute
                  Cancer Information Service
                  • 800-422-6237
                  • www.cancernet.nci.nih.gov

              •   Food and Drug Administration
                  Office of Special Health Issues
                  • 301-827-4460
                  • http://www.fda.gov/oashi/can-
                     cer/cancer.html

              •   Alliance for Lung Cancer
                  Advocacy, Support, and Education
                  (ALCASE)
                  • 800-298-2436
                  • http://www.alcase.org


              SUMMARY

              New and improved treatments for lung
              cancer will come about only through
              clinical trials. Every person diagnosed
              with lung cancer should be advised of
              the availability of clinical trials and be
              encouraged to participate in those that
              are appropriate and may provide clini-
              cal benefit.

              If your doctor does not participate in a
              clinical trial program, check with any
              of the groups listed above to learn
              about clinical trials that might be
              appropriate for you.




        5.6
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                                             Treatment for
                                Nonsmall Cell Lung Cancer
                                               Table of Contents                                 6
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.1
Learning the Language . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.1
Making Sense of the Numbers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.2
Preparing for Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.2
How Quickly Should Treatment Start? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.3
Overview of Nonsmall Cell Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.4
    Types of Nonsmall Cell Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.4
       Adenocarcinoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.4
       Squamous Carcinoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.4
       Large Cell Carcinoma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.4
    Staging of Nonsmall Cell Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . .6.5
Nonsmall Cell Lung Cancer: Treatments and Their Side Effects . . . . . . . . . .6.7
    Surgery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.8
       Side Effects from Surgery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.10
    Radiation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.10
       Side Effects from Radiation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.11
            Esophagitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.11
            Fatigue . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.11
            Fibrosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.11
            Pneumonitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.11
            Skin Irritation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.12
            Sore Throat . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.12
            Other Side Effects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.12
    Chemotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.12
       Side Effects from Chemotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.13
       Currently Used Chemotherapy Agents . . . . . . . . . . . . . . . . . . . . . . .6.14
Treatment of Nonsmall Cell Lung Cancer By Stage . . . . . . . . . . . . . . . . . . .6.17
    Stage 0 . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.17
       Surgery          . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.17
       Photodynamic Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.17
    Stage IA and IB . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.18
       Surgery          . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.18
       Additional Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.18
    Stage IIA and IIB . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.18
       Surgery          . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.18
       Chemotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.18
       Radiation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.19
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                Stage IIIA . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.19
                    Surgery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.19
                    Chemotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.19
                    Radiation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.19
                Stage IIIB . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.19
                    Chemotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.19
                    Radiation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.20
                Stage IV . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.20
                    Chemotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.20
                    Radiation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.20
                    Photodynamic Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.20
            Is Therapy Working? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.20
            Recurrence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.21
            Palliative Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.21
            New Directions in the Treatment of Nonsmall Cell Lung Cancer . . . . . . . . .6.21
                New Surgical Techniques . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.22
                New Radiation Techniques . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.22
                Investigational Chemotherapy Agents . . . . . . . . . . . . . . . . . . . . . . . . . . .6.23
                Antiangiogenic Compounds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.23
                    Matrix Metalloprotease Inhibitors . . . . . . . . . . . . . . . . . . . . . . . . . . .6.23
                    Shark Cartilage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.23
                    Endostatin/Angiostatin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.24
                    Thalidomide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.24
                Photodynamic Therapy for Advanced Nonsmall Cell Lung Cancer . . . . .6.24
                Biologics (Biological Response Modifiers) . . . . . . . . . . . . . . . . . . . . . . .6.24
                Gene Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.24
                Chemoprevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.25
                Monoclonal Antibodies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.25
                Vaccines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.25
            Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6.25
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                             Treatment for
                Nonsmall Cell Lung Cancer                               6
INTRODUCTION                                 In the “Medical Records Of …” pock-
                                             et at the back of this manual is an algo-
                                             rithm, or chart, that identifies the

I
     n this chapter, you will read about
     the terminology you will hear           sequence of events that occurs in man-
     when talking with your healthcare       aging NSCLC. This visual representa-
providers and others about lung cancer.      tion of the chain of events that will take
You will also read about lung cancer         place may be helpful as you and your
statistics and how they apply to you.        healthcare team make your treatment
You will get a brief overview of nons-       decisions.
mall cell lung cancer (NSCLC) and
how to prepare for treatment. And, you
will read about the treatments for           LEARNING THE
NSCLC—what is currently being used           LANGUAGE
and their side effects, how NSCLC is
treated by stage, and what is on the         When you read about the success or
horizon for treating NSCLC.                  failure rates of various treatments, you
                                             will encounter a number of new words
Treatment for NSCLC is evolving. T h e       and phrases. And, you will want to
decisions that need to be made regarding     know how your cancer is responding to
your treatment are yours to make.            treatment. For instance, a “complete
Nobody is more qualified than you to         response” means that the tumor(s)
make decisions about your quality of life    appears to be completely gone as a
and your future. Seek information and        result of therapy. A “partial response”
advice, then do what is right for you.       means that the tumor(s) decreased in
                                             size by at least 50%. “No response”
Get referrals to one or more oncology        means that the tumor(s) did not grow or
specialists: a thoracic surgeon, a med-      shrink much. “Progressive disease”
ical oncologist, and a radiation oncolo-     means that the tumor is growing in spite
gist. Seek the most up-to-date, aggres-      of the treatment you receive. When the
sive treatment available for your can-       disease progresses in spite of therapy,
cer. Ask your doctor about clinical tri-     that therapy should be discontinued.
als before you make a decision about
your treatment. As we discussed in           Your doctors may use the words
“Chapter Five: Clinical Trials,” these       “apparently cancer-free” if your
studies offer a chance at state-of-the-art   tumor(s) disappears after treatment.
treatment.



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              “First-line therapy” means that treat-         IV), the chance of long-term survival is
              ment, such as a particular type of             greatly reduced. But it does occur, and
              chemotherapy, is the first choice, and         you may be one of the people for
              will be used before other treatments are       whom it does. We encourage you to go
              used. Multimodality or “combined               for 100% survival in your personal bat-
              modality” therapy, which includes the          tle with lung cancer.
              use of a chemotherapy regimen along
              with surgery and/or radiation, is evolv-
              ing as “first-line” therapy.                      Ask your doctor about clinical trials
                                                                before you make a decision about
                                                                your treatment. These studies offer
              “Palliative therapy” is given not to              state-of-the-art treatment and may
              cure, but to relieve symptoms, provide            provide you the best chance for a cure
              better quality of life, and, hopefully,           or longer life.
              extend life when cure is not pre-
              dictable.
                                                             Five-year survival rates for NSCLC:
                                                             • stage IA: 60% to 67% (that is, 60
              MAKING SENSE OF THE                               to 67% of people diagnosed with
              NUMBERS                                           stage 1A NSCLC are alive five
                                                                years after being diagnosed)
              The effectiveness of treatment can be          • stage IB: 36% to 71%
              seen in the numbers. But, be wary of           • stage IIA: 34% to 55%
              the numbers, Don’t let them rule your          • stage IIB: 24% to 39%
              life. Remember, individuals are not sta-       • stage IIIA: 13% to 23%
              tistics, which are numbers based on the        • stage IIIB: about 5%
              experiences of large populations of            • stage IV: about 1%
              people. Your experience with lung can-
              cer will be unique and may vary great-
              ly from the statistics given below.            PREPARING FOR
                                                             TREATMENT
                 The effectiveness of treatment can be
                                                             If you are currently smoking, it is best
                 seen in the numbers. But, be wary of
                 the numbers, don’t let them rule your       for you to stop. Your treatment may be
                 life.                                       more successful if you do not smoke.
                                                             Most surgeons will insist that you not
                                                             be a current smoker. It also is helpful
              Cancer survival statistics are based on        for you to reduce your exposure to sec-
              five-year survival rates. Five-year sur-       ond-hand smoke. Your doctor or oncol-
              vival can and does happen for people           ogy nurse should be able to provide
              with all stages of NSCLC. You have             information about smoking cessation
              the best odds for long-term survival if        programs to help you (or your family
              you are diagnosed with early-stage dis-        member) quit and help you find a pro-
              ease. As the stages increase (from I to        gram or method that will work for you.

        6.2
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                                             unless your doctor tells you otherwise,
   Oncology nurses play an important         it may be in your best interest to take a
   role on the healthcare team. They are     few days to get information and addi-
   highly trained professionals who will
                                             tional tests before starting treatment.
   be a significant factor in your life as
   you go through treatment.                 Use the time to learn more about your
                                             disease and your treatment options, to
                                             talk to loved ones about your illness,
Nutrition can make a difference in your      and to plan for your future.
ability to recover from the effects of
treatment. Consider meeting with a           Be sure to talk with your doctor about
nutritionist or dietitian prior to treat-    treating any symptoms you may
ment, whether surgery, radiation, or         already have, such as shortness of
chemotherapy, to help insure that you        breath and fatigue, as well as any
are getting the nutrients you need to        symptoms that may develop as a result
heal successfully.                           of your treatment regimen. Some dis-
                                             ease symptoms can be managed before
Exercise is also important. If you           you begin therapy so that you may
already exercise regularly, maintain         more easily tolerate the treatments.
your schedule as much as possible            Often, this can be done while you and
although you may find it necessary to        your healthcare team are developing
modify your routine. Any type of exer-       your treatment strategy.
cise is helpful. Walk as much as you
can. Keep light weights by your chair
or bed and use them to exercise your             “Supportive care for all of your can -
                                                 cer-related symptoms will be impor -
arms. If you are too tired to exercise,          tant in helping you get through the
make sure your doctor is following               rigors of treatment.”
your hemoglobin levels. If you are ane-                        — lung cancer survivor
mic, request treatment. Be sure to dis-
cuss your exercise program with your
healthcare providers.                        Remember: the choice to receive any
                                             kind of treatment is yours to make.
It is also important to have any neces-      Discuss the purpose of treatments, their
sary dental care completed before start-     potential side effects, and their expect-
ing therapy. Let your dentist know that      ed results with your healthcare team.
you will be undergoing treatment for         Use these professionals as consultants
cancer.                                      to aid you in making your decisions, or,
                                             if it feels more comfortable, ask them
                                             to make the decisions for you.
HOW QUICKLY SHOULD
TREATMENT START?
                                                 “The most important thing to remem -
                                                 ber when planning your treatment is
Your lung cancer has probably taken              that the final decision about what to
years to grow to its present size. So,           do is yours. Ask a lot of questions


                                                                                          6.3
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                 about side effects, survival times, and       •   usually starts near the outer edges
                 quality of life; then do what fits your           of the lungs
                 life the best.”
                                 — lung cancer survivor
                                                               •   produces tumors that are frequently
                                                                   small
                                                               •   tends to spread early to other parts
                                                                   of the body
                                                               •   bronchioalveolar adenocarcinoma
              OVERVIEW OF NONSMALL                                 (BAC) develops in the alveoli
              CELL LUNG CANCER
                                                               Squamous carcinoma
              Seventy-five to 80% of all lung cancer           Squamous carcinoma (also known as
              diagnoses in the United States are               epidermoid carcinoma):
              NSCLC, making it the most common                 • represents 30% to 35% of lung can-
              type of lung cancer. The numbers are                 cer cases in the US
              somewhat different in other countries.           • occurs most frequently in men and
                                                                   older people of both sexes
                                                               • usually starts in one of the larger
              The Types of Nonsmall Cell                           breathing tubes
                                                               • is more likely to cause ulceration,
              Lung Cancer                                          bleeding in the breathing tube, and
                                                                   obstruction of the breathing tube
              The three major types of NSCLC are                   than other forms of lung cancer
              adenocarcinoma, squamous carcinoma               • tends to grow relatively slowly
              (or epidermoid carcinoma), and large             • tends to remain localized in the
              cell carcinoma. The following is a brief             chest longer than other types of
              review of the characteristics of each of             lung cancer
              these three types of NSCLC. As with              • tends to invade local structures
              statistics, it is important to remember              near the site of the tumor
              that these are the most common char-             • does not tend to metastasize early
              acteristics of these tumors and that             • is strongly associated with smoking
              there are always exceptions.
                                                               Large cell carcinoma
              Adenocarcinoma                                   The incidence of large cell carcinoma
              The incidence of adenocarcinoma has              appears to be decreasing. However,
              been steadily increasing during the last         this decreased number could be due to
              twenty years. This increase is due, in           improvements in determining the types
              part, to the improvement in diagnostic           of lung cancer. Large cell carcinoma:
              tools and the increase of this type of           • represents about 5% to 15% of lung
              cancer in women. Adenocarcinoma:                     cancer cases in the US
              • represents about 40% of lung can-              • usually starts in the smaller breath-
                  cer cases in the US                              ing tubes
              • is the most common lung cancer                 • may occur in any part of the lung
                  among women, in whom the num-                • has tumors that are usually large by
                  ber of new cases is increasing                   the time they are diagnosed


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•   tends to invade the mediastinum         done prior to surgery to look for cancer
    and the central nervous system          in the lungs, lymph nodes, and other
•   tends to have larger cells than other   organs. PET scans can image rapidly
    types of lung cancer                    dividing cells that are not seen on x-
•   tends to have a worse prognosis if      ray, CT scan or MRI. If tumors are
    the cells are poorly differentiated     seen, unnecessary surgery can be
    (the cells do not look like normal      avoided and other therapy can begin.
    cells). Well-differentiated, or more
    normal looking, large cell lung can-    The following information about stag-
    cer has a better prognosis              ing was presented in greater detail in
                                            “Chapter Four: Lung Cancer Diagnosis
                                            and Staging.” We have included some
Staging of Nonsmall Cell                    of this information again in this chapter.
Lung Cancer
                                            •   Occult cancer means that cancer-
Staging categorizes cancer into stan-           ous cells are discovered in the spu-
dardized groups, which helps deter-             tum, but that no tumor can be found
mine treatment options. Staging helps           in the lung.
to define the extent of the spread of the
cancer from its original location in the    •   Stage 0, also called carcinoma in
lung to other parts of the body. Staging        situ, describes cancer confined to a
also helps determine if a cancer might          local area that has not grown
be expected to respond to therapy.              through the top lining of the lung
                                                and is incapable of spreading.

    The stage of lung cancer will deter -
    mine the treatment. It is critically
    important that the stage be correctly
    determined. Doctors specializing in
    lung cancer care have been specifi -
    cally trained to do staging.



Many people who do not have any
signs of cancer spread outside the lungs
are treated initially with surg e r y.
However, surgery often reveals lung
cancer cells in the lymph nodes that are    •   Stage I NSCLC has not spread
found in the chest area. These cancers          beyond its primary location. Stage I
are then categorized as stage IIA or B          NSCLC is further divided into
or stage IIIA or B NSCLC.                       stage IA and IB. both of which are
                                                usually resectable, that is, remov-
In some areas of the country where the          able with surgery if the patient can
equipment is available, PET scans are           tolerate or withstand the surgery.

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                                                          Table 1. TNM Descriptors
                             Primary Tumor (T)                               Regional lymph nodes (N)

                             TX Primary tumor cannot be assessed, or         NX Regional lymph nodes cannot be
                                tumor proven by the presence of malig-          assessed
                                nant cells in sputum or bronchial wash-
                                ings but not visualized by imaging or        N0 No regional lymph node metastasis
                                bronchoscopy
                                                                             N1 Metastasis to ipsilateral peribronchial
                             TO No evidence of primary tumor                    and/or ipsilateral hilar lymph nodes, and
                                                                                intrapulmonary nodes involved by
                                                                                direct extension of the primary tumor
                             Tis Carcinoma in situ
                                                                             N2 Metastasis to ipsilateral mediastinal
                             T1 Tumor ≈3cm in greatest dimension, sur-          and/or subcarinal lymph node(s)
                                rounded by lung or visceral pleura,
                                without bronchoscopic evidence of            N3 Metastasis to contralateral mediastinal,
                                invasion more proximal than the lobar           contralateral hilar, ipsilateral or con-
                                bronchus* (i.e., not in the main                tralateral scalene, or supraclavicular
                                bronchus)                                       lymph node(s)

                             T2 Tumor with any of the following fea-         Distant metastasis (M)
                                tures of size or extent: >3 cm in great-
                                est dimension involves main bronchus,        MXPresence of distant metastasis cannot be
                                ∆2cm distal to the carina, invades the         assessed
                                visceral pleura, associated with atelec-
                                tases or obstructive pneumonitis that        M0 No distant metastasis
                                extends to the hilar region but does not
                                involve the entire lung                      M1 Distant metastasis present ***

                             T3 Tumor of any size that directly invades      *   The uncommon superficial tumor of any
                                any of the following: chest wall (includ-        size with its invasive component limited to
                                ing superior sulcus tumors), diaphragm,          the bronchial wall, which may extend
                                mediastinal pleura, parietal pericardium;        proximal to the main bronchus, is also clas-
                                                                                 sified T1.
                                or tumor in the main bronchus <2cm
                                                                             ** Most pleural effusions associated with lung
                                distal to the carina, but without involve-       cancer are due to tumor. However, there
                                ment of the carina; or associated atelec-        are a few patients in whom multiple
                                tasis or obstructive pneumonitis of the          cytopathologic examinations of pleural
                                entire lung                                      fluid show no tumor. In these cases, the
                                                                                 fluid is nonbloody and is not an exudate.
                             T4 Tumor of any size that invades any of            When these elements and clinical judgment
                                the following: mediastinum, heart, great         dictate that the effusion is not related to the
                                vessels, trachea, esophagus, vertebral           tumor, the effusion should be excluded as a
                                                                                 staging element and the patient’s disease
                                body, carina; or tumor with a malignant
 ipsilateral: situated                                                           should be staged T1, T2, or T3. Pericardial
                                pleural or pericardial effusion,** or            effusion is classified according to the same
on, pertaining to, and
                                with satellite tumor nodule(s) within the        rules.
   affecting the same
                                ipsilateral primary-tumor lobe of the        *** Separate metastatic tumor nodule(s) in the
                  side
                                lung                                             ipsilateral nonprimary-tumor lobe(s) of the
                                                                                 lung also are classified M1.




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                                                   •   Stage III NSCLC has spread to sur-
                Table 2                                rounding structures and to the
    Stage Grouping — TNM Subsets*                      lymph nodes. Stage III NSCLC is
                                                       further divided into stage IIIA or
    Table 2                                            stage IIIB.
    Stage Grouping — TNM Subsets*
                                                   •   Stage IV NSCLC has spread to
    Stage         TNM Subset                           other parts of the body. Stage IV
                                                       NSCLC usually cannot be resected,
      0           Carcinoma in situ                    except under special circum-
                                                       stances.
     IA           T1N0M0

     IB           T2N0M0
                                                   NONSMALL CELL LUNG
     IIA          T1N1M0                           CANCER: TREATMENTS
                                                   AND THEIR SIDE EFFECTS
     IIB          T2N1M0
                  T3N0M0                           The three primary forms of treatment
                                                   for NSCLC are surgery, radiation, and
    IIIA          T3N1M0                           c h e m o t h e r a p y. The following is a
                  T1N2M0                           review of the various types of treat-
                  T2N2M0                           ment currently in use, as well as some
                  T3N2M0                           new therapeutic options being studied
                                                   now that may become available in the
    IIIB          T4N0M0                           future.
                  T4N1M0
                  T4N2M0                           NSCLC treatment is a combination of
                  T1N3M0                           art and science. It is continually evolv-
                  T2N3M0                           ing. There is no treatment that has been
                  T3N3M0                           proven effective for everyone all of the
                  T4N3M0                           time. This is because lung cancer dif-
                                                   fers from person to person. As you’ve
    IV            Any T Any N M1                   read, there are a number of different
                                                   types of NSCLC. The tumors can also
    * Staging is not relevant to occult carcino-   be located in different areas of the
    ma, designated TXN0M0.                         lungs. Some people have tumors that
                                                   are only in the lung(s) at the time of
                                                   detection, but most will have tumors
•     Stage II NSCLC has spread to near-           that have already had a chance to
      by lymph node(s) in the lungs.               spread to the lymph nodes or to other
      stage II NSCLC is further divided            parts of the body by the time NSCLC is
      into stage IIA and IIB, both of              diagnosed. In addition, while some
      which may be resectable.                     tumor cells are sensitive to a particular

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              type of treatment, others are not. And,          are general surgeons; they perform all
              there are no accepted methods for pre-           types of surg e r y, but have generally not
              determining how any one patient will             received specialized training beyond
              fare in treatment or even how cells              general surg e r y. Thoracic surgeons have
              from a specific tumor will react.                received extensive specialized training
              Frequently, combined modality therapy            in cardiac (heart) and pulmonary (lung)
              is used to treat the tumor, with the hope        s u rg e r y. They then tend to specialize fur-
              that this will, in essence, cover the            ther in one or the other area.
              most possibilities.
                                                               The outcome of your surgical treatment
                                                               will depend on the skill of the surgeon.
                 “Don’t let the fear of treatment or           In general, the more times a surgeon
                 treatment side effects become a nega -        performs a specific kind of surgery, the
                 tive factor in your care. If you allow
                 the risks to dominate your thinking,
                                                               better skilled they are.
                 you may leave the cancer inadequate -
                 ly treated.”                                  Surgery for lung cancer can be done
                               — lung cancer survivor          best by a thoracic surgeon who special-
                                                               izes in lung surgery. It is important for
                                                               your future that you find the most
              The recommendations you receive                  skilled pulmonary surgeon available to
              from your oncology team and the final            you. Because thoracic surgeons also do
              decisions you make, together with your
              treatment team, will depend on the
              stage of your disease, your age, your
              general health status, and the potential
              for treatment side effects. Remember,
              there is no one single treatment for
              NSCLC. Your treatment will be as indi-
              vidual as you are.


                 “Use your oncology team as consul -
                 tants. Listen to their opinions; get as
                 much information from other sources
                 as you can or feel comfortable with.
                 There is no one single best treat -
                 ment.”
                               — lung cancer survivor



                                                               most of the heart surgery that is con-
                                                               ducted in this country, you will want to
              Surgery                                          see a thoracic surgeon who also does
                                                               o r, hopefully, specializes in lung
              There are many types of surgeons. Some           surgery. If there is no thoracic surgeon

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available, find the general surgeon who     •   p n e u m o n e c t o m y, in which the
does the most lung cancer surgery, or           entire lung is removed
get a referral from your diagnosing         •   wedge or segmental resection, in
physician to a nearby Comprehensive             which a small part of the lung is
Cancer Center (call 800-4-CANCER                removed (note: wedge resections
for the location of the nearest Center).        are not standard treatment and are
                                                not generally recommended)
Surgical resection is usually used when
the cancer has not spread to other tis-     Surgery is not used as first-line therapy
sues in the chest nor elsewhere in the      if the lung cancer has:
body. If your surgeon and the other         • spread to the other lung
oncology professionals on your health-      • grown from the lung into other vital
care team believe that there is a good           organs in the chest, such as the
chance that all the visible cancer can be        heart, unless breathing function is
surgically removed (resected), this is           greatly compromised
what they will recommend. Sometimes         • spread to the lymph nodes in the
surgery may be the first type of treat-          neck, or to other organs such as the
ment used, and sometimes it follows              liver, adrenals, or brain
chemotherapy and/or radiation treat-        • developed in a part of the lung that
ments used to shrink the tumor(s).               makes removal impossible

When lung cancer is treated with            Surgery is not recommended if there
surgery (resected), the surgeon should      are other health-related problems that
examine and remove many of the              would make surgery risky or unproduc-
lymph nodes to check them for cancer.       tive. These include some heart and vas-
As with other types of cancer, checking     cular problems, diabetes, and other
the nodes for signs of cancer spread is     chronic conditions.
essential to accurately stage the cancer.
If you are having surgery, discuss the      When the tumor(s) is large or located
procedure with the surgeon to ensure        in an area that might make surgery dif-
that the nodes will be examined.            ficult, chemotherapy or radiation thera-
                                            py may be used prior to surgery in an
Because it is so important, we empha-       attempt to shrink the tumor sufficiently
size the need for current smokers to        to make surgery a reasonable option.
stop smoking prior to surg e r y.
Smoking increases the chances of hav-       Breathing tests (pulmonary function
ing problems both during surgery and        tests) are usually done to help deter-
during recovery.                            mine if your lungs will be strong
                                            enough during and after the surgery to
The three types of surgery used in the      allow optimal breathing and exchange
treatment of lung cancer are:               of gases. You may have other tests to
• lobectomy, in which an entire sec-        assess your ability to undergo surgery,
    tion (lobe) of the lung is removed      such as quantitative ventilation/perfu-


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               sion scan to determine the extent of          tem to ward off infection. It’s impor-
               lung function in parts of the lung to be      tant to take particular care not to be
               removed.                                      exposed to people with bad colds or
                                                             other communicable diseases until you
               Sometimes, medications such as bron-          recover fully.
               chodilators, used by people who have
               asthma will help improve breathing            See “Chapter Eight: Supportive Care
               capacity so that surgery can be done.         for Symptoms of Lung Cancer and Its
               These drugs may improve lung func-            Treatments” for a more detailed discus-
               tion whether surgery is ultimately per-       sion of the side effects from treatment
               formed or not. Some centers and/or            and how they can be managed.
               s u rgeons prepare their patients for
               surgery by recommending participa-
               tion in a pulmonary rehabilitation pro-
               gram both before and after surgery.           Radiation
               This is especially important if you do
               not have a regular exercise program.          Many people with NSCLC will need
                                                             radiation therapy at some time during
               Side Effects from Surgery                     their illness, either as part of curative
               S u rgery causes a number of side             treatment or as a means of providing
               effects, some of which may disappear          symptom relief (palliation) when a cure
               within days or weeks. Others may last         is not possible. Cancer specialists,
               for longer periods of time. The side          called radiation oncologists, provide
               effects you experience are very depen-        this specialized treatment.
               dent on the type of surgery you have.
                                                             Radiation therapy consists of a beam of
               Incision pain is an expected side effect      high-energy rays directed at a tumor.
               immediately after surgery, and patients       By injuring cancer cells so that they
               are usually provided with eff e c t i v e     cannot continue to multiply, radiation
               medications. Many people who have             kills cells, slowing down or stoping
               lung surgery complain of lasting pain         tumor growth.
               at the incision sites, which is some-
               times difficult to eliminate. Women           The amount of radiation used varies,
               may have an especially difficult time as      based on the size and location of the
               the incision site is often at the brassiere   tumor and the sensitivity of the normal
               line. Many women find alternatives to         tissue surrounding the tumor. The tim-
               snug clothing such as brassieres to           ing and dosing of radiation (called frac-
               avoid this irritating and lasting pain.       tionation) in treating NSCLC is now
                                                             the subject of study in clinical trials.
               Another side effect is the stress of the      Radiation therapy can be used either
               surgery combined with the stresses of         alone or in combination with surgery or
               the anesthetic and other medications          chemotherapy. It is sometimes used
               used during surgery. These all tend to        before surgery to shrink a tumor. After
               reduce the ability of the immune sys-         surgery, radiation may be used to stop

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the growth of any cancer cells that          py. Amifostine is currently being stud-
remain.                                      ied in clinical trials. Amifostine is
                                             administered immediately prior to radi-
                                             ation therapy.

                                             Esophagitis. Many people experience
                                             difficulty swallowing due to esophagi-
                                             tis. This is due to the radiation to the
                                             center of the chest that also includes
                                             the esophagus. If this happens, it may
                                             be easier to drink a liquid diet or eat
                                             soft foods. Analgesics may be needed
                                             to relieve pain. If you have difficulty
                                             swallowing, be sure to tell you doctor.
                                             It could also be caused by some other
                                             factor.

                                             Fatigue. Most people begin feeling
                                             fatigued after two weeks of radiation
                                             treatment to the chest area or to the
 Demonstration of Radiation Therapy          brain. Fatigue may gradually increase
                                             as therapy continues, however, it does
                                             not necessarily mean that the cancer is
Side Effects from Radiation                  getting worse. Resting, such as nap-
Although the purpose of radiation is to      ping more during treatment is advised.
destroy cancer cells, it can also injure     The fatigue usually wears off within
normal cells. This can cause side            weeks after treatment is finished.
e ffects. Side effects from radiation
                                             Fibrosis. Fibrosis may develop in the
depend on the dose and the size of the
                                             treated lung tissue as well as in muscles
area being treated. New 3-dimensional                                                           fibrosis: formation
                                             that the radiation passes through. This            of fibrous tissue as a
technology can significantly reduce the
                                             may cause pain in breathing or when                reaction or as a repair
size of the area being treated.
                                             moving in certain ways. Exercising                 process; may occur
Administering radiation more frequent-                                                          due to treatment
                                             may help prevent the development of
ly (2 or 3 times a day versus once a day)
                                             fibrous tissue. Talk with a physical
appears to provide better outcomes.
                                             therapist or a pulmonary rehabilitation
                                             specialist to see what can be done to
Some research is focusing on ways to
                                             prevent fibrosis or to help relieve it if it
protect normal cells from the damage
                                             does occur.
that results in side effects such as
fatigue, sore throat, and skin irritation.
                                             Pneumonitis. About 10% of people
Amifostine (Ethyol ) is a product that
                     ®                       develop fever, cough, and shortness of
is believed to protect normal cells from     breath about 4 to 6 weeks after finish-
the damage caused by radiation thera-        ing radiation therapy. If this happens,

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                          contact your radiation doctor. These          Radiation therapy to the chest usually
                          symptoms may be the result of radia-          does not cause nausea, but if it does
                          tion lung injury (radiation pneumoni -        o c c u r, your physician can provide
                          tis), which occurs when the normal            antinausea medications.
      pneumonitis:        lung tissue surrounding the tumor is
inflammation of the       injured during radiation therapy. You         See “Chapter Eight: Supportive Care
             lungs        may be given corticosteroids (steroids)       for Symptoms of Lung Cancer and Its
                          to help lessen the loss of lung function      Treatments” for a detailed discussion
protocol: medical
    treatment plan
                          and to relieve symptoms.                      of the side effects from treatment with
                                                                        radiation and how they are managed.
                          Skin Irritations. Skin in the treatment
                          area may look and feel red, irritated,
                          sunburned, or tanned. Most lotions,           Chemotherapy
                          powders and deodorants should not be
                          used during radiation treatments              Chemotherapy drugs are taken by
                          because they may interfere with the           mouth or given through a vein (intra-
                          radiation so that it cannot produce the       venously) and travel throughout the
                          desired effect of killing the cancer cells.   body via the bloodstream (systemical-
                          Ask your doctor or nurse about lotions        ly). Some may soon be inhaled directly
                          to soothe the irritation that do not inter-   into the lungs. Chemotherapy drugs
                          fere with your treatment and other            kill cells that are dividing rapidly,
                          things you can do to care for your skin.      which includes cancer cells. They
                                                                        interfere with the cell division cycle so
                          Sore Throat. A dry or sore throat and         that cells cannot divide, or are dam-
                          difficulty in swallowing is generally a       aged and can’t repair themselves.
                          minor, temporary (usually only a week
                          or two) complication of radiation ther-       Chemotherapy drugs also affect normal
                          apy that may occur within a few days          cells of the body, such as blood cells,
                          to two weeks after treatment has              skin and hair cells, and the cells lining
                          begun. Because eating may be difficult,       the mouth and intestine.
                          a soft or liquid diet that includes milk-
                          shakes, soups, or prepared liquid sup-        Chemotherapy treatment programs are
                          plements may be helpful. Pain medica-         tailored to the needs of each person.
                          tions and topical anesthetics may be          Your doctor will develop a chemothera-
                          needed to minimize the discomfort in          py treatment plan (protocol) for you by
                          swallowing. Sometimes, supplemental           considering such things as the type of
                          nutrition or fluids are given intra-          lung cancer you have, how widespread
                          venously. Be sure to talk with your           it is, and your general state of health.
                          doctor about this symptom so other
                          causes for sore throat can be ruled out.      Chemotherapy can be used to:
                                                                        • achieve remission that is associated
                          Other Side Effects. Loss of hair in the          with prolonging life
                          treated area may occur, and it may or         • slow the cancer’s growth
                          may not grow back.                            • keep the cancer from spreading

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•   shrink the tumor to relieve disease-           develop because there are insufficient
    related symptoms and to prolong                red blood cells to carry oxygen to all
    life                                           the body’s cells. Anemia causes fatigue
                                                   and dyspnea.
Even if chemotherapy does not cure the
disease, studies have consistently shown           Amifostine (Ethyol®) appears to pro-
that it can help people with NSCLC live            tect normal cells from the adverse
longer and more comfortably.                       e ffects of therapy. For NSCLC
                                                   patients, amifostine has been approved
Side Effects from Chemotherapy                     by the FDA, especially to protect the
There are two levels of side effects from          kidneys when cisplatin, a chemothera-
c h e m o t h e r a p y. Some side effects, such   py drug, is given. Amifostine is given
as hair loss and nausea, are annoying,             just before the chemotherapy.
but don’t have severe consequences.                Additional clinical trials are underway.
Other side effects can be severe and               Side effects of amifostine include
even life-threatening. These are called            decreased blood pressure in some peo-
“dose-limiting” side effects. The dose-            ple for a short period of time(about 5 to
limiting side effects, if they occur, can          15 minutes) after administration. In
prevent you from receiving your                    some people, nausea and vomiting may
chemotherapy drugs as planned and in               be greater with amifostine than without           anemia: condition
the manner in which clinical trials have           for several days after administration of          caused by a reduction
                                                                                                     in the amount of red
proven them to be the most effective.              chemotherapy. Other side effects may
                                                                                                     blood cells that are
                                                   include flu-like symptoms.                        produced by the bone
The severity of side effects varies                                                                  marrow; anemia can
greatly from person to person. Not                 Some of the most common side eff e c t s          be a result of the can-
every person experiences every side                (listed alphabetically) that may occur dur-       cer itself or from the
                                                                                                     treatments; symp-
effect and some people have just one or            ing treatment with chemotherapy include:
                                                                                                     toms of anemia
two, or none at all. The dose and type             • blood clots                                     include fatigue and
of chemotherapy and how your body                  • confusion or loss of mental clarity             dyspnea
reacts will determine whether you will             • constipation
have side effects and their severity.              • diarrhea                                        neutropenia: low
                                                                                                     number of neu-
Each chemotherapeutic agent differs in             • fatigue
                                                                                                     trophils or white
the side effects it may cause.                     • hair loss                                       blood cells; may
                                                   • myelosuppression                                increase risk of infec-
Like radiation, chemotherapy also                       • anemia                                     tion, depending on
affects other rapidly dividing, normal                  • neutropenia                                how low the count is
                                                                                                     and for how long
cells of the body, such as blood cells,                 • thrombocytopenia
skin cells, cells of the hair follicles, and       • neuropathies                                    thrombocytopenia:
cells of the lining of the intestine.              • nausea/vomiting                                 low number of
Because the blood cells are affected                                                                 thrombocytes
and the immune system is suppressed,               See “Chapter Eight: Supportive Care for           (platelets) in the
                                                                                                     blood
neutropenia can develop and the risk of            Symptoms of Lung Cancer and Its
infection increases. Anemia may also               Treatments” for a detailed discussion of


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               the side effects from treatment with             approved by the FDA for the treatment
               chemotherapy and how they are managed.           of NSCLC. The trials are testing these
                                                                drugs in various combinations with
               Currently Used Chemotherapy Agents               each other and in combination with
               There are a variety of drugs used to             surgery and/or radiation. We have not
               treat NSCLC. Most chemotherapy                   listed older drugs if they have been
               drugs are used in combinations of two            shown to be less effective than those
               or three or more. Chemotherapy may               listed, although some of these are still
               require some trial and error before your         in use. These include drugs such
               doctor finds the drug, or combination            cyclophosphamide and mitomycin.
               of drugs, that will be effective against
               the stage of NSCLC you have. And,                Discuss the chemotherapy drugs you
               eventually, the cells that remain in a           are taking with your physician or phar-
               tumor may be resistant to your                   macist, or check the Physicians’ Desk
               chemotherapy agent or agents, so                 Reference for complete information
               another type of drug or drugs will most          about the drug(s). Remember, howev-
               likely be used.                                  er, your experience with your drugs
                                                                will be unique. You may experience
               You may respond better to some drugs             just a few or none of the side effects
               than to others, so your physician may            that are associated with a drug.
               try different chemotherapy drugs,
               either alone or in varying combina-              For many years, the two most com-
               tions, to achieve the best results with          monly used drugs for the treatment of
               the fewest side effects. The first choice        NSCLC have been the two platinum-
               of drugs should be based on studies              based drugs: carboplatinum and cis-
               that show an increase in survival time.          platin. Currently, treatment usually
                                                                includes one or more of the following
                                                                drugs, along with either carboplatinum
                   Discuss the chemotherapy drugs you           or cisplatin.
                   a re taking with your physician or
                   pharmacist, or check the Physicians’
                   Desk Reference for complete informa -        The generic name of a drug is its chem-
                   tion about the drug(s). Remember,            ical name. The brand name is the name
                   however, your experience with your           a manufacturer gives to its form of the
                   drugs will be unique. You may experi -
                   ence just a few or none of the side
                                                                same chemical. Your healthcare team
                   effects that are associated with a           may use these names interchangeably.
                   drug.                                        We have provided both names for your
                                                                easy reference. We also list those side
                                                                effects that occurred in clinical trials in
               The chemotherapy drugs currently                 more than 30% of patients who
               being used along with some of their              received the drug when it was given
               side effects are listed below. All of the        alone, if these data were available.
               drugs listed are available in clinical tri-      With some of the older drugs, these
               als, even though all but two have been           data were not always available.


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Remember, many of the side-effects        Brand name: Taxotere®
listed can be prevented or minimized.     The most common dose-limiting side
                                          effect of docetaxel includes bone mar-
Carboplatin (Generic Name)                row suppression (myelosuppression),
Brand name: Paraplatin ®                  which may increase the risk of infec-
The most common dose-limiting side        tion and/or anemia. Other side effects
effect of carboplatin is bone marrow      include:
suppression (myelosuppression), which     • fever
may increase the risk of infection        • nausea and vomiting
and/or anemia. Other side eff e c t s     • liver function changes
include:                                  • neurologic abnormalities
• nausea and vomiting
                                          • hypersensitivity
• electrolyte abnormalities
                                          • nail changes
• pain
                                          • inflammation of the mouth
• weakness
                                          • weakness
• hair loss
                                          • fluid retention
Special considerations: Patients aller-
                                          • flushing of the skin
gic to platinum-containing compounds
                                          • hair loss
should not take this drug.
                                          Special consideration: All patients
Cisplatin (Generic Name)                  should be premedicated with oral corti-
Brand name: Platinol®                     costeroids prior to initiation of doc-
The most common dose-limiting side        etaxel therapy to reduce fluid retention
effect of cisplatin includes bone mar-    and hypersensitivity reactions.
row suppression (myelosuppression),
which may increase the risk of infec-     Etoposide or VP-16 (Generic Name)
tion and/or anemia. Kidney damage is      Brand name: Etopophos ®, VePesid®,
a dose-limiting side effect in 33% of     The most common dose limiting side
people treated with cisplatin. Other      effects of etoposide include mucositis
side effects include:                     and bone marrow suppression which
• nausea and vomiting                     may increase the risk of infection
• kidney damage                           and/or anemia. Other side eff e c t s
• neurologic, including numbness,         include:
    ringing of the ears, etc.             • nausea and vomiting
• hearing loss                            • weakness
• electrolyte abnormalities               • hair loss
• pain                                    • hypersensitivity
• weakness                                Special considerations: Sucking on
• hair loss                               hard candy may be recommended
Special considerations: Patients aller-   while taking this medicine to lessen the
gic to platinum-containing compounds      metallic taste this drug may cause.
should not take this drug.
                                          Gemcitabine (Generic Name)
Docetaxel (Generic Name)                  Brand name: Gemzar ®


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               The most common dose-limiting side            which may increase the risk for infec-
               effect of gemcitabine is bone marrow          tion and anemia. Other side effects
               suppression(myelosuppression), which          include:
               may increase the risk of infection            • hypersensitivity
               and/or anemia. Other side eff e c t s         • numbness in hands, feet
               include:                                      • pain
               • nausea and vomiting                         • nausea and vomiting
               • liver function changes                      • hair loss
               • kidney function changes                     Special considerations: Steroids must
               • pain                                        be administered before paclitaxel is
               • rash                                        given; frequent vital sign monitoring is
               • fever                                       recommended during the first hour of
               Special consideration: women taking           paclitaxel infusion; during administra-
               gemcitabine are more likely to develop        tion, patients should report any signs of
               bone marrow suppression than men.             pain, burning, or any other symptoms.

               Irinotecan or CPT-11 (Generic Name)           Topotecan (Generic Name)
               Brand name: Camptosar ®                       Brand name: Hycamtin ®
               The most common dose-limiting side            The most common dose-limiting side
               effect of irinotecan is severe bone mar-      effect of topotecan is severe bone mar-
               row suppression (myelosuppression),           row suppression (myelosuppression),
               which may increase the risk for neu-          which may increase the risk for infec-
               tropenia and anemia. Another dose-            tion and anemia. Other side effects
               limiting side effect is gastrointestinal      include:
               problems including early and late onset       • nausea and vomiting
               of diarrhea. Other side effects include:      • shortness of breath
               • nausea and vomiting                         • hair loss
               • intestinal cramping                         • joint pain
               • weight loss                                 Special consideration: Topotecan
               • weakness                                    should not be administered to patients
               • fever                                       with severe bone marrow suppression.
               • hair loss                                   This drug has not been approved by the
               Special consideration: Diarrhea can be        FDA for treatment of NSCLC but is
               reduced with medications; increase            available in clinical trials.
               fluid intake if you experience diarrhea.
               This drug has not yet been approved by        Vinorelbine tartrate (Generic Name)
               the FDAbut is available in clinical trials.   Brand name: Navelbine ®
                                                             The most common dose-limiting side
               Paclitaxel (Generic Name)                     effect includes neutropenia. Other pos-
               Brand name: Taxol®                            sible side effects include:
               The most common dose-limiting side            • constipation
               effect of paclitaxel is severe bone mar-      • nausea
               row suppression (myelosuppression),           Special considerations:Vinorelbine tar-


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trate as a single agent drug has been       the usual approaches to treatment.
shown to be especially useful in older      There are many variations of existing
patients or in those who may not be         options and many new treatments
able to withstand combination therapy.      e m e rging that provide a variety of
Severe damage to surrounding tissues        treatment options.
can result if the drug escapes from the
blood vessel into the tissue; most nurs-
es are well-trained in administration; if   Stage 0 (Cancer in situ)
this problem occurs, the area should be
examined frequently and a plastic sur-      Unfortunately, very few people are
geon consult should be considered.          diagnosed at stage 0. Stage 0 lung can-
                                            cer is usually discovered by a tech-
                                            nique called ”sputum cytology. ”
TREATMENT OF                                Sputum cytology is a test of cells that
                                            are coughed up or have been collected
NONSMALL CELL LUNG
                                            from the lungs and viewed through a
CANCER BY STAGE                             microscope. These cells are present in
                                            sputum because they have loosened
The stage of a person’s cancer is the       from the place(s) in the lungs where
chief determinant of the treatment plan.    they first became cancerous. Most peo-
Other factors include general health        ple who are diagnosed with stage 0 are
and other medical conditions, such as       participating in a screening trial.
heart or circulatory disease, diabetes or
other chronic conditions. Another           Surgery
important factor is an individual’s         If the tumor’s location can be detected,
needs. Your oncologists will make rec-      surgery at this stage can result in a
ommendations; but, remember, this is        complete cure without recurrence of
your life and you have the right to         that cancer.
make the decisions about your treat-
ments. We recommend meeting with            Photodynamic Therapy
all of the specialists (thoracic surgeon,   Photodynamic therapy (also called PDT,
medical oncologist, radiation oncolo-       photoradiation therapy, phototherapy, or
gist, and/or others) involved in your       photochemotherapy) has been approved
care prior to treatment to learn about      by the FDA for treatment of a subset of
the available options.                      early-stage nonsmall cell lung cancer
                                            (microinvasive disease) when surg e r y
As we stated before, there is not one       and radiation therapy are not indicated.
standard treatment currently used by        Its most useful curative potential is in
everyone in the medical community to        stage 0 disease.
treat every type and every stage of
NSCLC. The following is a review of         In PDT, a photosensitizing drug is
the types of treatments used for the        injected into a vein. After a period of
stages of NSCLC. Keep in mind that          time during which the drug is absorbed
these are just general descriptions of      by all cells, it rapidly leaves most nor-

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                              mal cells but remains in cancer cells for     alone. However, you may want to meet
                              a longer period. The treated cancer cells     with a medical oncologist and a radia-
                              are then exposed to light from a laser        tion oncologist to discuss the possibili-
                              that activates the photosensitizing drug.     ty of radiation or chemotherapy in addi-
                              The photosensitizing drug in the treated      tion to surg e r y. Clinical trials are under-
                              cells absorbs the light, producing an         way to determine the effectiveness of
                              active form of oxygen that destroys sur-      adding these therapies to surgery for
                              rounding cancer cells. Light exposure         stage IA or IB patients.
                              must be timed carefully so that it occurs
                              when most of the photosensitizing drug        Some oncology professionals believe
                              has left healthy cells but is still present   that early-stage NSCLC should be treat-
  resection: surgical         in the cancerous cells.                       ed with chemotherapy, since many peo-
 removal of a portion                                                       ple diagnosed with stage I disease have
    or all of an organ                                                      a recurrence within two years. Clinical
                              Stage IA and IB                               trials are underway to see if systemic
lobectomy: surgical
 removal of one lobe                                                        treatment increases survival time.
            of a lung         Surgery
                                                                            Some studies in which radiation has
   pneumonectomy:             Patients diagnosed with stage IA or IB
                                                                            been used in addition to surgery in N0
  surgical removal of         NSCLC are usually treated with
                                                                            disease indicate that it might be detri-
             one lung         surgery, also called resection. The cur-
                                                                            mental to survival.
                              rent standard treatment is to remove a
systemic treatment:           whole section, or lobe, of the lung. This
treatment that reach-
  es cells all over the       s u rgery is called a lobectomy.
                              Lobectomies are considered to be supe-        Stage IIA and IIB
    body by traveling
   through the blood-         rior to wedge resection that only             Surgery
                stream        removes a small portion of a lobe.            The current standard of treatment for
                              Removal of an entire lung is called a         stage IIA and IIB disease is surgical
          neoadjuvant
    therapy: therapy          pneumonectomy.                                treatment is either a lobectomy, bi-
  given before the pri-                                                     l o b e c t o m y, or pneumonectomy if
     mary treatment to        A pneumonectomy might be done if              surgery is possible.
    improve the effec-        tumors are found in more than one lobe
tiveness of the prima-        or one side of the chest. When lung           Chemotherapy
  ry treatment; neoad-
juvant therapy can be         s u rgery is performed, a complete            While neoadjuvant (before surg e r y )
      chemotherapy or         examination of the lymph nodes in the         and adjuvant (after surgery) chemother-
      radiation therapy       chest cavity is done. Thoracic surgeons       apy are not standard treatments for stage
                              are trained to do these procedures and,       IIA or IIB NSCLC, clinical trials are
  adjuvant therapy:           if you have a choice, you should              underway to see if systemic treatments
  a treatment method
   used in addition to        always choose a board-certified tho-          increase survival time or help provide a
 the primary therapy;         racic surgeon.                                cure. If you are diagnosed with stage
      used to increase                                                      IIA or IIB NSCLC, we recommend that
      effectiveness of        Additional Therapy                            you meet with both a medical oncolo-
             treatment        If you are diagnosed with stage IAor IB       gist and a radiation oncologist to discuss
                              NSCLC, the standard of care is surg e r y     possible clinical trials.


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Radiation                                    receive two to three cycles of
Some radiation oncologists recom-            chemotherapy before surgery for stage
mend adjuvant radiation therapy for          IIIA NSCLC, and further cycles after
stage IIAor IIB of disease. Radiation is     s u rg e r y, survived up to six times as long
used after surgery to attempt to kill any    as those who received surgery alone.
remaining cancer cells remaining fol-        There is no standard postoperative
lowing surgery. The radiation is target-     treatment. Adjuvant chemotherapy,
ed at or around the area where the           r a d i o t h e r a p y, or both may be used.
tumor(s) was located. Controversy
exists around the effectiveness of radi-     Radiation
ation in stage II NSCLC. Some data           Radiation is often used in the treatment
indicate that it might be detrimental by     of stage IIIANSCLC to help reduce the
shortening survival time, especially for     size of the tumor(s). Radiation com-
those with N1 disease.                       bined with chemotherapy may be used
                                             instead of surgery to eliminate the
                                             tumor and is probably the most com-
Stage IIIA                                   mon form of therapy at this stage.

Surgery
S u rgery without chemotherapy may be        Stage IIIB
possible in some cases of stage IIIA
NSCLC. The more common approach              Stage IIIB NSCLC has usually invaded
when mediastinal lymph nodes are             surrounding organs, and possibly the
known to be involved, however, is to         lymph nodes outside the chest. Surgery
give chemotherapy prior to surg e r y        is generally not an option for people
(neoadjuvant chemotherapy) or radio-         diagnosed with stage IIIB NSCLC, but,
                                             in selected cases, it may be the treat-              induction
therapy to reduce the size of the tumor                                                           chemotherapy: drug
or tumors. This approach has been            ment of choice in combination with
                                                                                                  therapy given as the
shown to be successful in a number of        chemotherapy.                                        primary treatment for
clinical trials involving small numbers of                                                        people who have
                                             Chemotherapy                                         advanced cancer for
patients. The best treatment results for
                                             Chemotherapy is used in combination                  which no alternative
people with stage IIIA lung cancer have
                                             with radiotherapy to treat stage IIIB                treatment exists.
been with multimodality therapy — a
                                             NSCLC. Numerous clinical trials using
combination of chemotherapy, surg e r y,                                                          cycle: the time
                                             a number of new drugs with or without
and possibly radiation.                                                                           (from an hour or so
                                             older drugs can help to control stage                to several days) it
Chemotherapy                                 IIIB NSCLC. Some people live for a                   takes to deliver the
People diagnosed with stage IIIA             number of years receiving chemothera-                drug or drugs, plus
                                             py treatments that control and/or slow               the time until the
NSCLC may be considered for induc -                                                               next dose(s) is due
tion chemotherapy and/or radiothera-         the growth of the tumor(s).
py plus surgery.All of these options are
being studied in clinical trials.            People with stage IIIB lung cancer with
                                             pleural effusion should receive
A recent study found that people who         chemotherapy alone. If no pleural effu-


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               sion is present, radiation may be used           encroaching on the main bronchi, mak-
               in addition to chemotherapy.                     ing it difficult to breath, use of photody-
                                                                namic therapy could help open the air-
               Radiation                                        ways by reducing the size of the tumor.
               Radiation is a mainstay of treatment for
               stage IIIB NSCLC. The aim is to elimi-
               nate the tumor or at least to reduce its size.   IS THERAPY WORKING?

                                                                There are a number of ways to deter-
               Stage IV                                         mine if treatment is working. Most
                                                                physicians routinely use performance
               Stage IV lung cancer involves metasta-           status as an indication if therapy is
               sis to organs in addition to the lungs           working. If pain is lessened, breathing
               and nodes in the chest cavity. Surgery           is easier, and there is less cough, it can
               is not an option for people diagnosed            be assumed that treatment is helping.
               with stage IV NSCLC.
                                                                Your doctor will always perform a
               Chemotherapy                                     physical examination. Since lung can-
               Doctors often recommend palliative               cer affects all the organs of the body,
               chemotherapy for people who are oth-             this exam should be thorough. The
               erwise functioning well for symptom              examination helps your doctor deter-
               relief and to increase survival time.            mine what additional tests she or he
               Some people with stage IV disease                feels need to be done. For example,
               who receive chemotherapy live beyond             standard diagnostic procedures such as
               what is statistically expected. Just as          x-rays and CT scans can be used to
               with stage IIIB disease, some experi-            gauge whether tumor(s) have changed
               ence complete remissions, that is, the           in size or have disappeared. These tests
               disappearance of visible tumors, occur.          are usually done after three or more
               Others are maintained on specific treat-         “cycles” of therapy.
               ment regimens to keep the existing
               tumors in check. Supportive care is a            PET (positron emission tomography)
               definite option for people with stage IV         scans are being investigated as a
               disease.                                         method to determine the eff i c a c y
                                                                (effectiveness) of treatment. PET scans
               Radiation                                        are particularly useful because they
               Radiation may be used to relieve local           detect changes in the metabolism of
               symptoms and improve quality of life.            cells, rather than in anatomical struc-
                                                                ture or size of the tumor. As a result,
               Photodynamic Therapy                             PET scans can identify changes in can-
               Photodynamic therapy (PDT) is also               cer cell activity earlier in therapy than
               used for palliation in late-stage lung           can CT and x-rays, which can only
               cancer as a treatment for bronchial              detect changes in tumor size after sev-
               obstruction. For example, if a tumor is          eral cycles of therapy. This new


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approach offers the added advantage of      other tests ordered that your physician
not having to go through several cycles     feels are important, depending on your
of a therapy that may not be effective.     history with lung cancer.
PET scanning for this use is not
approved yet for reimbursement by all
insurance companies. In addition, PET       PALLIATIVE THERAPY
equipment is not available in every
community. This method of monitoring        Palliative therapy is any kind of treat-
treatment is currently being studied in a   ment that is given to control symptoms
number of clinical trials.                  and improve quality of life when a cure
                                            is not possible. Palliative therapy can
                                            include surg e r y, radiation, and
RECURRENCE                                  chemotherapy. Be sure to ask your
                                            physician about the purpose of any
The risk of recurrence, or reappearance,    treatment you receive. Make sure you
of lung cancer in the original site or as   understand the possible benefits as
a metastasis to another site is high.       well as the possible negative aspects of
When disease is advanced, the risk          any treatment you take.
increases. In addition, people who have
developed lung cancer once seem to          Palliative therapy also includes pain
have a greater chance of developing         management. Patients with recurrent
new primary lung cancer tumors. T h e       cancer may need aggressive pain man-
new primary tumor may be of the same        agement to maintain the highest quality
type (such as adenocarcinoma) or it         of life. Pain management is most eff e c-
may be a different type (such as squa-      tive when pain is treated as soon as it is
mous after a primary adenocarcinoma).       first experienced, before it becomes
For these reasons, it is very important     severe. Be sure to report any pain you
that people with lung cancer work           may experience to your physician to get
closely with their healthcare team to be    treatment for it immediately.
sure their condition is monitored on a
regular basis. For example, people with
lung cancer should see their physicians     NEW DIRECTIONS IN
every three months, at a minimum, for
the first two years; every six months for
                                            TREATMENT OF
two more years; and annually after that.    NONSMALL CELL
                                            LUNG CANCER
Many people continue to see their
physicians every three months so that       Combined modality (multimodality)
any recurrence can be detected as early     treatment is the approach that is the most
as possible. At these visits, your physi-   favored approach for treatment of
cian may order a CT or other scan.          NSCLC. It is being investigated in an
Your general health status will be mon-     attempt to provide the best therapeutic
itored, blood work probably done, and       results. However, medical science has


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               made many advances in recent years that          New Radiation Techniques
               may help you in your fight against lung
               c a n c e r. Many of the new drugs and tech-     Conformal 3-D radiation therapy is an
               niques mentioned here are still being test-      important new technique that allows
               ed, so their use may not be widespread.          the dose of radiation to be increased
               The following list does not include all          with a reduction in the exposure time.
               of the new therapies being studied.
               R a t h e r, it is a brief overview of some of   The use of primary radiation therapy in
               the major areas of discovery. Consider           combination with chemotherapy is
               talking with your physician about new            being examined and shows promise. A
               cancer treatment developments. Not all           method of treatment delivery called
               of the approaches described apply to             interdigitation, which involves manip-
               NSCLC. Nonetheless, you may be able              ulating the scheduling of chemothera-
               to benefit from one or more of these             py and radiation therapy, is an example
               e m e rging therapies now or in the future.      of this approach.

                                                                Fractionation is a general term that
               New Surgical Techniques                          refers to the practice of varying the
                                                                dose, duration, and time between radi-
               Surgery remains a standard treatment             ation treatments. For example, the
               for people with stage I and II NSCLC.            administration of smaller doses of radi-
               For people with marginal lung function           ation given more often is called accel-
               who cannot tolerate a major surgery, a           erated hyperfractionation. Accelerated
               less invasive surgical technique called          hyperfractionation may increase the
               video-assisted thoracoscopic surg e r y          effectiveness of radiation therapy for
               (VATS) may be helpful. VATS allows               some patients.
               for “keyhole” surgery. Resection and
               lobectomies are performed through a              Radiation modifiers can be used to
               small incision with the aid of a video           change the cellular response to radia-
               camera and television screen so the              tion. A generic drug called lonidamine
               surgeon can see enough detail to per-            (Tirapazamine®), for example, seems
               form the necessary surg e r y. VAT S             to inhibit cancer cells from repairing
               surgery may reduce surgical trauma               the damage caused by a radiation treat-
               and result in shorter hospital stays and         ment.
               quicker recovery. The drawback to this
               approach is that the surgeon cannot              Radiation sensitizers make cells more
               view the entire lung and may not be              sensitive to the effects of radiation. For
               able to obtain adequate samples of               example, substances called topoiso-
               lymph nodes to check for spread of the           merase I inhibitors have been used suc-
               cancer. This approach has not yet been           cessfully as radiation sensitizers.
               shown to improve results compared to             Gemcitabine® is an example of a drug
               standard techniques.                             that may act as a radiation sensitizer.



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Brachytherapy is a technique used to        Antiangiogenic Compounds
deliver high doses of radiation from
very short distances. This is accom-        There are a variety of products that are
plished by placing a radiation source in    capable of inhibiting the development
the airway next to a tumor.                 of blood vessels that help to feed tumor
                                            cells growing in a solid tumor. These
                                            products are called antiangiogenic
Investigational                             drugs or angiogenic inhibitors.
Chemotherapy Agents
                                            Matrix Metalloprotease Inhibitors
Promising new chemotherapeutic              Matrix metalloproteases (MMPs) are a
agents are being used now, either alone     group of enzymes that occur naturally
or in a variety of combinations. Timing     in the body. They help break down the
and dosing of chemotherapeutic agents       structure between cells in order to
is under study. Products that can           make room for new, healthy tissue to
enhance the effectiveness of the drugs,     grow. These enzymes are important in
or products that can protect normal         normal processes like new blood vessel
cells during chemotherapy are also          development, growth, and wound heal-
being studied.                              ing. Researchers now believe that
                                            MMPs can assist tumor cells in invad-
It is now possible to determine, in         ing surrounding healthy tissue and
advance of treatment, which chemo-          metastasizing to more distant parts of
therapeutic agent(s) will work best for     the body. It also appears that MMPs
a particular tumor. Tissue samples can      may play a role in helping new blood
be sent to companies that will ascertain    vessels grow and supply nutrition to
the sensitivity of a tumor to a range of    the tumor.
chemotherapy drugs. This service is
generally not covered by insurance          A drug that stops the MMP enzyme
companies because the effectiveness         from carrying out its function is called
has never been clearly established, so      an matrix metalloprotease inhibitor
patients must pay for this service out-     (MMPI). Clinical studies are underway
of-pocket. This technique is not widely     with a number of products to see if
used. There are some false-positive         MMPIs can help to slow the growth of
results (results that indicate a            lung cancer tumors.
chemotherapy will work, but in fact
does not). However, there are no false-     Shark Cartilage
negative results (results that indicate a   Extracts of shark cartilage or similar com-
chemotherapy will not work, but in fact     pounds developed in the laboratory are
does). So, these tests can certainly help   also thought to be antiangiogenic. Clinical
to rule out therapies that will not be      studies on the efficacy of shark cartilage
effective against the type of lung can-     extracts in treating lung cancer are under-
cer you have.                               way in the United States and Canada.



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                                Endostatin and Angiostatin                   ease to relieve bronchial obstruction.
                                Another type of product are proteins         Studies are underway to determine
                                that occur naturally in the body. Tw o       other ways it might be helpful.
                                such compounds have been found:
                                angiostatin and endostatin. Each is
                                believed to have a similar function: to      Biologics (Biological Response
                                prevent blood vessel formation in            Modifiers)
                                tumors, thus slowing growth of the
                                tumor or destroying it completely.           Cancer patients have been shown to
                                Clinical trials on these products proba-     have impaired immune systems.
                                bly will not begin for a number of years.    Biologics (also called biological
                                Thalidomide                                  response modifiers [BRMs]), are
                                Thalidomide is a drug made famous in         agents that change the body’s immune,
                                the 1950s because of the serious birth       or biological response, to tumor cells.
                                defects it caused when it was adminis-       For example, BRMs may be used to
                                tered to pregnant women. It has been         restore a person’s immune function or
                                known for years to have other proper-        prevent a tumor from metastasizing.
                                ties, although it was used initially to
                                reduce serious nausea in pregnancy. It,      This is a particularly interesting area of
                                too, appears to have anticancer proper-      development, since recent scientific
                                ties, working as an angiogenic               breakthroughs have shown that the
                                inhibitor. Clinical trials are currently     b o d y ’s immune system plays a key role in
                                underway.                                    determining whether a person will devel-
                                                                             op cancer. A few of the BRMs currently
                                                                             being used and under investigation are
                                                                             alpha interferon, interleukin-2, inter-
                                Photodynamic Therapy for
                                                                             leukin-4, and tumor necrosis factor. None
                                Advanced NSCLC                               of these agents have yet been proven to be
                                Photodynamic therapy (PDT) can be            e ffective in the treatment of lung cancer.
                                used palliatively to treat late-stage
                                NSCLC. When tumors block the
                                major airways, making it increasingly        Gene Therapy
                                difficult for the patient to breath, PDT
   debulk: to reduce
                                can be used to debulk the tumor(s).          Gene therapy for cancer uses genetic
the size of; for exam-          PTD for this purpose is used the same        material as a therapeutic agent. This
          ple, a tumor          way it is used very early-stage NSCLC.       approach works to treat human disease
                                After administration of a photosensitiz-     by inserting a gene that has been lost or
                                ing drug, a bronchoscope is inserted         altered, or by trying to block expres-
                                into the airway and a light is directed at   sion of a gene whose function is to pro-
                                the tumor cells that have absorbed the       mote uncontrolled cell growth. Gene
                                drug. The cells are then destroyed,          therapy also can be used to provide a
                                reducing the size of the tumor. PDT has      new function to cells, such as produc-
                                been approved for use in advanced dis-       ing new proteins.

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Half of all NSCLC patients have               Herceptin® is a monoclonal antibody
abnormalities in their p53 gene, which        now being used to target breast cancer
is the gene responsible for suppressing       cells. Studies are underway to deter-
tumors, whether it is this gene, or other     mine whether Herceptin could be used
genes involved with cancer, genetic           e ffectively with other solid tumors
therapy may hold real promise for pre-        such as lung cancer. Continued
venting and treating NSCLC. A variety         advances in this area of research are
of genetic approaches are being studied       likely to emerge in the near future.
in the hopes of modifying the immune
system so that it can effectively fight
cancer cells.                                 Vaccines

                                              The National Cancer Institute currently
Chemoprevention                               lists fifteen clinical trials that are eval-
                                              uating the use of vaccines to administer
Chemoprevention is designed to prevent        biological therapies. The use of vac-
the development of cancer in at-risk peo-     cines are being studied for both nons-
ple and to prevent a recurrence in patients   mall cell lung cancer and small cell
apparently cured of cancer. This              lung cancer. These include:
approach involves giving a drug before        • carcinoembryonic antigen peptide-
there are any signs of cancer. Retinoids          1 (CAP-1) contains a protein that
are known to be able to prevent some              may encourage an immune response
types of cancer. Inhaled retinoids have           to lung cancer tumors
been studied in lung cancer; however, the     • mutated (altered) ras genes have
side effect profile of the drug used was          been found to cause cancer; ras
severe. Other studies will be conducted           peptide protein is a protein frag-
with new formulations of the drug.                ment produced by the ras gene
Selenium has also been shown to have          • interleukin-2 is a biological
chemopreventive capabilities and is in            response modifier that may help the
clinical trials in people with NSCLC.             body fight disease by stimulating
                                                  the production of certain disease-
                                                  fighting blood cells
Monoclonal Antibodies

Monoclonal antibodies are antibodies          SUMMARY
that are cloned, or artificially repro-
duced, in a laboratory. They are highly       Treatment of NSCLC can take a vari-
specific for a single antigen, that is,       ety of forms according to the stage of
they bind only to a certain protein that      the disease at diagnosis, your health
is a ”match” for them. This means             and preferences, and many other fac-
monoclonal antibodies can be designed         tors. There is no standard approach that
to attack certain tumor cells and             can be used effectively to treat all cases
destroy only them. For example,               of NSCLC. The treatment you receive

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               may well involve a combination of
               therapies that may change over time in
               response to the type and stage of
               NSCLC you have and your personal
               circumstances.


                   Participation in a clinical trial may
                   also allow you to contribute to the
                   advancement of medical science.



               If it is possible for you to participate in
               one, a clinical trial may provide you an
               opportunity to receive the newest, most
               aggressive therapy available for
               NSCLC. Participation in a clinical trial
               may also allow you to contribute to the
               advancement of medical science.
               Whether you enroll in a clinical trial,
               choose an already approved treatment,
               or choose no treatment other than
               symptom management, be sure to ask
               questions before making your decision
               so that you fully understand and feel
               comfortable with your decisions.

               Exciting new advances in cancer treat-
               ment are emerging. We are living in an
               age of discovery in the understanding
               of cancer and cancer therapy. You may
               want to call ALCASE at 800-298-
               2436, NCI’s 800-4-CANCER hotline,
               or the Food and Drug Administration
               (FDA) Patient Liaison office at 301-
               827-4460 if you have questions or need
               information. The Internet also pro-
               vides many opportunities to stay
               abreast of new developments.




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                                                   Treatment of
                                        Small Cell Lung Cancer
                                               Table of Contents                                7
Introduction     . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.1
Learning the Language . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.1
Making Sense of the Numbers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.2
Preparing for Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.3
How Quickly Should Treatments Start? . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.3
Overview of Small Cell Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.4
Staging of Small Cell Lung Cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.4
Small Cell Lung Cancer: Treatments and Their Side Effects . . . . . . . . . . . . . 7.4
    Chemotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.5
        Side Effects from Chemotherapy . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.5
        Currently Used Chemotherapy Agents . . . . . . . . . . . . . . . . . . . . . . . 7.6
    Radiation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.10
        Side Effects from Radiation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.10
           Esophagitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.10
           Fatigue . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.11
           Fibrosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.11
           Pneumonitis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.11
           Skin Irritation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.11
           Sore Throat . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.11
           Other Side Effects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.11
Treatment of Small Cell Lung Cancer by Stage . . . . . . . . . . . . . . . . . . . . . 7.12
    Limited Stage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.12
    Extensive Stage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.12
Is Therapy Working? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.12
Recurrence       . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.13
Palliative Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.13
New Directions in Treatment of Small Cell Lung Cancer . . . . . . . . . . . . . . 7.14
    New Radiation Techniques . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.14
    Investigational Chemotherapeutic Agents . . . . . . . . . . . . . . . . . . . . . . . 7.15
    Antiangiogenic Compounds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.15
        Matrix Metalloprotease Inhibitors . . . . . . . . . . . . . . . . . . . . . . . . . . 7.15
        Shark Cartilage . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.15
        Endostatin and Angiostatin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.16
        Thalidomide . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.16
    Photodynamic Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.16
    Biologics (Biological Response Modifiers) . . . . . . . . . . . . . . . . . . . . . . 7.16
    Gene Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.16
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               Chemoprevention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.17
               Monoclonal Antibodies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.17
               Vaccines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.17
            Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7.17
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                                     Treatment of
                          Small Cell Lung Cancer                          7
INTRODUCTION                                 Get referrals to one or more oncology
                                             specialists. Since SCLC is not general-


I
     n this chapter, you will read about     ly treated with surg e r y, you will want to
     the terminology you will hear           talk first to a medical oncologist and
     when talking with your healthcare       probably a radiation oncologist. If
providers and others about lung cancer.      s u rgery is a possibility, be sure to meet
You will also read about lung cancer         with a qualified thoracic (lung) sur-
statistics and how they apply to you.        geon. Seek the most up-to-date, aggres-
You will get a brief overview of small       sive treatment available for your cancer.
cell lung cancer (SCLC) and how to
prepare for treatment. And, you will         Ask your doctor about clinical trials
read about the treatments for SCLC,          before you make a decision about your
what is currently being used and their       treatment. As we discussed in “Chapter
side effects, how SCLC is treated by         Five: Clinical Trials,” these studies off e r
stage, and what is on the horizon for        a chance at state-of-the-art treatment.
treating SCLC.
                                             In the “Medical Records Of …” pock-
                                             et at the back of this manual is an algo-
    Ask your doctor about clinical trials    rithm, or chart, that identifies the
    before you make a decision about
                                             sequence of events that occurs in man-
    your treatment. These studies offer
    state-of-the-art treatment and may       aging SCLC. This visual representation
    provide you the best chance for a cure   of the chain of events that will take
    or longer life.                          place may be helpful as you and your
                                             healthcare team make your treatment
                                             decisions.
Treatment for SCLC is evolving. Talk
with your oncology team, but especial-
ly with your medical oncologist              LEARNING THE
because chemotherapy is the mainstay         LANGUAGE
of treatment for SCLC. In the end,
though, the decisions that need to be        When you read about the success or
made regarding your treatment are            failure rates of various treatments, you
yours to make. Nobody is more quali-         will encounter a number of new words
fied than you to make decisions about        and phrases. And, you will want to
what you want for your quality of life       know how your cancer is responding to
and your future. Seek information and        treatment For instance, a “complete
advice, then do what is right for you.       response” means that the tumor(s)


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              appears to be completely gone as a
              result of therapy. A “partial response”         The effectiveness of treatment can be
              means that the tumor(s) decreased in            seen in the numbers. But, be wary of
                                                              the numbers, don’t let them rule your
              size by at least 50%. “No response”
                                                              life.
              means that the tumor(s) did not grow or
              shrink much. “Progressive disease”
              means that the tumor is growing in spite     Cancer survival statistics are based on
              of the treatment you receive. When the       five-year survival rates. Five-year sur-
              disease progresses in spite of therapy,      vival does happen for people with
              that therapy should be discontinued.         SCLC. You will remember from the
                                                           previous chapter on staging that SCLC
              Your doctors may use the words               is usually staged as “limited” or
              “apparently cancer-free” if your             “extensive.” You have the best odds
              tumor(s) disappears after treatment.         for survival if you are diagnosed with
                                                           limited-stage disease. As the disease
              “First-line therapy” means that treatment,   progresses, your chances for long-term
              such as a particular type of chemothera-     survival are reduced, but some people
              p y, is the first choice, and will be used   do live much longer than might have
              before other treatments are used.            been predicted. You may be one of the
              Multimodality or “combined modality”         people who beats the odds. We encour-
              therapy, which includes the use of a         age you to go for the gold. Be one of
              chemotherapy regimen with radiation,         the winners!
              is evolving as “first-line” therapy.
                                                           With treatment, the median survival
              “Palliative therapy” is given not to         time for patients with limited SCLC is
              cure, but to relieve symptoms, provide       14 to 30 months. From 10% to 25% of
              better quality of life, and, hopefully,      people diagnosed with limited-stage
              extend life when cure is not pre-            SCLC live five years.
              dictable.
                                                           With treatment, the median survival
                                                           time for patients with extensive disease
              MAKING SENSE OF THE                          is 8 to 14 months. Only 1% to 5% of
              NUMBERS                                      people diagnosed with extensive-stage
                                                           SCLC live five years or more.
              The effectiveness of treatment can be
              seen in the numbers. But, be wary of         While the statistics for SCLC are dis-
              the numbers, Don’t let them rule your        couraging, there are survivors! Try to
              life. Remember, individuals are not sta-     be among them. We encourage you to
              tistics, which are numbers based on the      go for 100% survival in your personal
              experiences of large populations of          battle with lung cancer.
              people. Your experience with lung can-
              cer will be unique and may vary great-
              ly from the statistics given below.


        7.2
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PREPARING FOR                                request treatment. Be sure to discuss
TREATMENT                                    your exercise program with your
                                             healthcare providers.
If you are currently smoking, it is best
for you to stop. Your treatment may be       It is also important to have any neces-
more successful if you do not smoke.         sary dental care completed before start-
Most surgeons will insist that you not       ing therapy. Let your dentist know that
be a current smoker. It also is helpful      you will be undergoing treatment for
for you to reduce your exposure to sec-      cancer.
ond-hand smoke. Your doctor or oncol-
ogy nurse should be able to provide
                                             HOW QUICKLY SHOULD
information about smoking cessation
programs to help you (or your family         TREATMENT START?
member) quit and help you find a pro-
gram or method that will work for you.       Your lung cancer has probably taken
                                             years to grow to its present size. So,
                                             unless your doctor tells you otherwise,
   Oncology nurses play an important         it may be in your best interest to take a
   role on the healthcare team. They are     few days to get information and addi-
   highly trained professionals who will     tional tests before starting treatment.
   be a significant factor in your life as   Use the time to learn more about your
   you go through treatment.
                                             disease and your treatment options, to
                                             talk to loved ones about your illness,
                                             and to plan for your future.
Nutrition can make a difference in your
ability to recover from the effects of       Be sure to talk with your doctor about
treatment. Consider meeting with a           treating any symptoms you may
nutritionist or dietitian prior to treat-    already have, such as shortness of
ment, whether surgery, radiation, or         breath and fatigue, as well as any
chemotherapy, to help insure that you        symptoms that may develop as a result
are getting the nutrients you need to        of your treatment regimen. Some dis-
heal successfully.                           ease symptoms can be managed before
                                             you begin therapy so that you may
Exercise is also important. If you           more easily tolerate the treatments.
already exercise regularly, maintain         Often, this can be done while you and
your schedule as much as possible            your healthcare team are developing
although you may find it necessary to        your treatment strategy.
modify your routine. Any type of exer-
cise is helpful. Walk as much as you
can. Keep light weights by your chair or         “Supportive care for all of your can -
bed and use them to exercise your arms.          cer-related symptoms will be impor -
                                                 tant in helping you get through the
If you are too tired to exercise, make
                                                 rigors of treatment.”
sure your doctor is following your                             — lung cancer patient
hemoglobin levels. If you are anemic,

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              Remember: the choice to receive any              an aggressive type of lung cancer,
              kind of treatment is yours to make.              although, with treatment, people with
              Discuss the purpose of treatments, their         limited-stage disease may have long-
              potential side effects, and their expect-        term survival. Most people diagnosed
              ed results with your healthcare team.            with SCLC will already have evidence
              Use these professionals as consultants           of metastasis in the lymph nodes in the
              to aid you in making your decisions, or,         chest or in other organs.
              if it feels more comfortable, ask them
              to make the decisions for you.                   Small cell lung cancer:
                                                               • usually starts in one of the larger
                                                                 bronchi
                 “The most important thing to remem -          • tends to grow rapidly
                 ber when planning your treatment is           • has commonly spread by the time
                 that the final decision about what to           of diagnosis and is considered a
                 do is yours. Ask a lot of questions             systemic disease at the time of
                 about side effects, survival times, and
                 quality of life; then do what fits your         diagnosis
                 life the best.”                               • is more responsive to chemothera-
                                 — lung cancer survivor          py and radiation than nonsmall cell
                                                                 carcinomas
                                                               • has a doubling time of every 30
                                                                 days, much faster than nonsmall
                                                                 cell lung cancer
              OVERVIEW OF SMALL
              CELL LUNG CANCER
                                                               STAGING OF SMALL CELL
              The differences between SCLC and                 LUNG CANCER
              nonsmall cell lung cancer (NSCLC)
              have to do with the specific points of           Staging of SCLC is critical. Treatment
              genetic mutation that caused the cells to        decisions will be based on the stage.
              become cancerous in the first place.             Limited stage SCLC typically includes
              They also involve the appearance of the          tumors that are on one side of the lung
              cells, how quickly each type spreads to          and any cancer spread is located within
              other parts of the body, and how each            the area that can be treated by radia-
              type responds to treatment. SCLC tends           tion. Tumors that have spread outside
              to spread throughout the body more               one lung to the other lung or other
              quickly than NSCLC. But SCLC is def-             areas of the body are considered exten-
              initely more responsive to chemothera-           sive stage.
              py and radiation than NSCLC.

              Small cell lung cancer is predominantly          SMALL CELL LUNG
              diagnosed in smokers or former smok-             CANCER: TREATMENTS
              ers. Only 3% of people diagnosed with            AND THEIR SIDE EFFECTS
              SCLC have no history of active smok-
              ing of tobacco. Small cell lung cancer is        For those with limited-stage SCLC, the

        7.4
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primary treatment is chemotherapy           Chemotherapy drugs also affect normal
combined with radiation to the chest. If    cells of the body, such as blood cells,
the cancer is localized and doesn’t         skin and hair cells, and the cells lining
appear to have spread outside the           the mouth and intestine.
lungs, surgery may also be an option,
either before or after chemotherapy.        Chemotherapy treatment programs are
                                            tailored to the needs of each person.
The recommendations you receive             Your doctor will develop a chemother-
from your oncology team and the final       apy treatment plan (protocol) for you           protocol: medical
                                                                                            treatment plan
decisions you make, together with your      by considering such things as the type
treatment team, will depend on the          of lung cancer you have, how wide-
stage of your disease, your age, and        spread it is, and your general state of
your general health status. There is no     health.
one treatment for SCLC that has been
proven effective for every person with      Chemotherapy can be used to:
SCLC. Your treatment will be as indi-       • achieve remission that is associated
vidual as you are.                             with prolonging life
                                            • slow the cancer’s growth
The following is a review of the types      • keep the cancer from spreading
of treatment currently in use, as well as   • shrink the tumor to relieve disease-
some new therapeutic options being             related symptoms and to prolong
studied now that may become available          life
in the future. There are older, less
effective treatments and strategies still   Even if chemotherapy does not cure the
in use, however.                            disease, studies have consistently shown
                                            that it can help people with SCLC live
                                            longer and more comfortably.
Chemotherapy
                                            Side Effects from Chemotherapy
Chemotherapy is the mainstay of treat-      There are two levels of side effects
ment for SCLC and will always be part       from chemotherapy. Some side effects,
of any treatment plan. Chemotherapy         such as hair loss and nausea, are
drugs are taken by mouth or given           annoying, but don’t have severe conse-
through a vein (intravenously) and          quences. Other side effects can be
travel throughout the body via the          severe and even life-threatening. These
bloodstream (systemically). Some            are called “dose-limiting” side effects.
may soon be inhaled directly into the       The dose-limiting side effects, if they
lungs. Chemotherapy drugs kill cells        occur, can prevent you from receiving
that are dividing rapidly, which            your chemotherapy drugs as planned
includes cancer cells. They interfere       and in the manner in which clinical tri-
with the cell division cycle so that        als have proven them to be the most
cells cannot divide, or are damaged         effective.
and can’t repair themselves.


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                              The severity of side effects varies            Some of the most common side effects
                              greatly from person to person. Not             (listed alphabetically) that may occur
                              every person experiences every side            during treatment with chemotherapy
                              effect and some people have just one or        include:
                              two, or none at all. The dose and type         • blood clots
                              of chemotherapy and how your body              • confusion or loss of mental clarity
neutropenia: low              reacts will determine whether you will         • constipation
number of neu-                have side effects and their severity.          • diarrhea
trophils or white             Each chemotherapeutic agent differs in         • fatigue
blood cells; may
                              the side effects it may cause.                 • hair loss
increase risk of infec-
tion, depending on                                                           • myelosuppression
how low the count is          Like radiation, chemotherapy also                  • anemia
and for how long              affects other rapidly dividing, normal             • neutropenia
                              cells of the body, such as blood cells,            • thrombocytopenia
anemia: condition
                              skin cells, cells of the hair follicles, and   • neuropathies
caused by a reduction
in the amount of red          cells of the lining of the intestine.          • nausea/vomiting
blood cells that are          Because the blood cells are affected
produced by the bone          and the immune system is suppressed,           See “Chapter Eight: Supportive Care for
marrow; anemia can            neutropenia can develop and the risk           Symptoms of Lung Cancer and Its
be a result of the can-                                                      Treatments” for a detailed discussion of
                              of infection increases. Anemia may
cer itself or from the                                                       the side effects from treatment with
treatments; symp-             also develop because there are insuffi-
toms of anemia                cient red blood cells to carry oxygen to       chemotherapy and how they are managed.
include fatigue and           all the body’s cells. Anemia causes
dyspnea                       fatigue and dyspnea.                           C u r rently Used Chemotherapy Agents
                                                                             There are a variety of drugs used to
thrombocytopenia:                                                            treat SCLC. Most chemotherapy drugs
low number of                 Amifostine (Ethyol®) appears to pro-
thrombocytes                  tect normal cells from the adverse             are used in combinations of two or
(platelets) in the            e ffects of therapy. For NSCLC                 three or more. The first choice of drugs
blood                         patients, amifostine has been approved         should be based on studies that show
                              by the FDA, especially to protect the          an increase in survival time. Treatment
                              kidneys when cisplatin, a chemothera-          for SCLC requires a good choice the
                              py drug, is given. Amifostine is given         first time, since second-line therapy
                              just before the chemotherapy.                  does not appear to be effective.
                              Additional clinical trials are underway.
                              Side effects of amifostine include                Discuss the chemotherapy drugs you
                              decreased blood pressure in some peo-             a re taking with your physician or
                              ple for a short period of time (5 to 15           pharmacist, or check the Physicians’
                              minutes) after administration. In some            Desk Reference for complete informa -
                              people, nausea and vomiting may be                tion about the drug(s). Remember,
                                                                                however, your experience with your
                              greater with amifostine than without              drugs will be unique. You may experi -
                              for several days after administration of          ence just a few or none of the side
                              chemotherapy. Other side effects may              effects that are associated with a
                              include flu-like symptoms.                        drug.



                      7.6
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The chemotherapy drugs currently               Cisplatin (Generic Name)
being used along with some of their            Brand name: Platinol ®
side effects are listed below.                 The most common dose-limiting side
                                               effect of cisplatin includes bone mar-
Discuss the chemotherapy drugs you             row suppression (myelosuppression),
are taking with your physician or phar-        which may increase the risk of infec-
macist, or check the Physicians’ Desk          tion and/or anemia. Kidney damage is
Reference for complete information             a dose-limiting side effect in 33% of
about the drug(s). Remember, howev-            people treated with cisplatin. Other
er, your experience with your drugs            side effects include:
will be unique. You may experience             • nausea and vomiting
just a few or none of the side effects         • kidney damage
that are associated with a drug.               • neurologic, including numbness,
                                                   ringing of the ears, etc.
The generic name of a drug is its chem-        • hearing loss
ical name. The brand name is the name          • electrolyte abnormalities
a manufacturer gives to its form of the        • pain
same chemical. Your healthcare team            • weakness
may use these names interchangeably.           • hair loss
We have provided both names for your           Special considerations: Patients aller-
easy reference. We also list those side        gic to platinum-containing compounds
e ffects that occurred in clinical trials in   should not take this drug.
more than 30% of patients who received
the drug when it was given alone.              Cyclophosphamide (Generic Name)
Remember, many of the side-eff e c t s         Brand name: Cytoxan ®
listed can be prevented or minimized.          The dose-limiting side effect is
                                               leukopenia (low white blood cell
Carboplatin (Generic Name)                     count). Other possible side effects
Brand name: Paraplatin ®                       include:
The most common dose-limiting side             • nausea and vomiting
effect of carboplatin is bone marrow           • cystitis/bladder fibrosis
suppression (myelosuppression), which          • kidney changes
may increase the risk of infection             • hair loss
and/or anemia. Other side eff e c t s          • reduced fertility
include:                                       Special considerations: A d m i n i s t r a t i o n
• nausea and vomiting                          of this drug should be done in the morn-
• electrolyte abnormalities                    ing. It is important that there is ample
• pain                                         fluid intake and that the bladder is
• weakness                                     emptied frequently, especially at bed-
• hair loss                                    time to reduce the effects of cystitis.
Special considerations: Patients aller-        This is an old drug and may have limit-
gic to platinum-containing compounds           ed usefulness.
should not take this drug.


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              Docetaxel (Generic Name)                     the sun and/or wear a good sun screen
              Brand name: Taxotere®                        (with an SPF of at least 15) while on
              The most common dose-limiting side           this treatment. This is an old drug and
              effect of docetaxel is bone marrow sup-      may have limited usefulness, especial-
              pression (myelosuppression), which           ly in limited-stage disease.
              may increase the risk of infection
              and/or anemia. Other side eff e c t s        Etoposide or VP-16 (Generic Name)
              include:                                     Brand name: Etopophos ®, VePesid®
              • fever                                      The most common dose limiting side
              • nausea and vomiting                        effects of etoposide include mucositis
              • liver function changes                     and bone marrow suppression which
              • neurologic                                 may increase the risk of infection
              • hypersensitivity                           and/or anemia. Other side eff e c t s
              • nail changes                               include:
              • inflammation of the mouth                  • nausea and vomiting
              • weakness                                   • weakness
              • fluid retention                            • hair loss
              • flushing of the skin                       • hypersensitivity
              • hair loss                                  Special considerations: Sucking on
              Special consideration: All patients          hard candy may be recommended
              should be premedicated with oral corti-      while taking this medicine to lessen the
              costeroids prior to initiation of doc-       metallic taste this drug may cause.
              etaxel therapy to reduce fluid retention
              and hypersensitivity reactions. This         Gemcitabine (Generic Name)
              drug is not yet approved for SCLC. It is     Brand name: Gemzar ®
              in clinical trials.                          The most common dose-limiting side
                                                           effect of gemcitabine is bone marrow
              Doxorubicin HCl (Generic Name                suppression      (myelosuppression),
              Brand name: Adriamycin®,                     which may increase the risk of infec-
              Dose-limiting side effects are myelo-        tion and/or anemia. Other side effects
              suppression and cardio- (heart) toxici-      include:
              ty. Other side effects include:              • nausea and vomiting
              • nausea and vomiting                        • liver function changes
              • problems at the injection site             • kidney function changes
              • hair loss                                  • pain
              • mucositis                                  • rash
              • red-colored urine                          • fever
              • fever and chills                           Special consideration: women taking
              Special consideration: During adminis-       gemcitabine are more likely to develop
              tration, patients should be asked to         bone marrow suppression than men.
              report any signs of pain or burning or
              any other symptoms. You may be more          Ifosfamide (Generic Name)
              sensitive to the effects of the sun, so it   Brand name: Ifex ®
              is recommended that you stay out of          The most common dose-limiting side

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effects of ifosfamide include kidney          • hypersensitivity
and bladder damage and bone marrow            • numbness in hands, feet
(myelo) suppression. Other side effects       • pain
include:                                      • nausea and vomiting
• nausea and vomiting                         • hair loss
• infertility                                 Special considerations: Steroids must
• hair loss                                   be administered before paclitaxel is
Special considerations: Hydration is          given; frequent vital sign monitoring is
important to reduce any kidney or blad-       recommended during the first hour of
der problems. You may be given IV             paclitaxel infusion; during administra-
fluids before and after treatment. Be         tion, patients should report any signs of
sure to drink plenty of fluids before and     pain, burning, or any other symptoms.
after treatment.                              This drug is in clinical trials for SCLC.

Irinotecan or CPT-11 (Generic Name)           Topotecan (Generic Name)
Brand name: Camptosar ®                       Brand name: Hycamtin ®
The most common dose-limiting side            The most common dose-limiting side
effect of irinotecan is severe bone mar-      effect of topotecan is severe bone mar-
row suppression (myelosuppression),           row suppression (myelosuppression),
which may increase the risk for neu-          which may increase the risk for infec-
tropenia and anemia. Another dose-            tion and anemia. Other side effects
limiting side effect is gastrointestinal      include:
problems including early and late onset       • nausea and vomiting
of diarrhea. Other side effects include:      • shortness of breath
• nausea and vomiting                         • hair loss
• intestinal cramping                         • joint pain
• weight loss                                 Special consideration: Topotecan
• weakness                                    should not be administered to patients
• fever                                       with severe bone marrow suppression.
• hair loss                                   Topotecan has been approved by the
Special consideration: Diarrhea can be        FDA for the treatment of small cell
reduced with medications; increase            lung cancer after failure of initial
fluid intake if you experience diarrhea.      chemotherapy.
This drug has not yet been approved by
the FDAbut is available in clinical trials.   Vincristine (Generic Name)
                                              Brand name: Oncovin ®
Paclitaxel (Generic Name)                     The dose-limiting side effect is kidney
Brand name: Taxol®                            damage and leukopenia. Other side
The most common dose-limiting side            effects include:
e ffect of paclitaxel is severe bone mar-     • flu-like symptoms
row suppression (myelosuppression),           • hair loss
which may increase the risk for infection     • hypersensitivity
and anemia. Other side effects include:       • constipation


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                              Special considerations: You may be
                              given laxatives or stool softeners before
                              treatment to prevent constipation.



                              Radiation

                              Many people with SCLC will need
                              radiation therapy at some time during
                              their illness, either as part of curative
                              treatment or as a means of providing
                              symptom relief (palliation) when a cure
                              is not possible. Cancer specialists,
                              called radiation oncologists, provide
                              this specialized treatment.

                              Radiation therapy consists of a beam of
                              high-energy rays directed at a tumor.
                              By injuring cancer cells so that they       Demonstration of Radiation Treatment
                              cannot continue to multiply, radiation
                              kills cells, slowing down or stopping
                              tumor growth.                               ly (2 or 3 times a day versus once a day)
                                                                          appears to provide better outcomes.
                              The amount of radiation used varies,
                              based on the size and location of the       Some research is focusing on ways to
                              tumor and the sensitivity of the normal     protect normal cells from the damage
                              tissue surrounding the tumor. The tim-      that results in side effects such as
                              ing and dosing of radiation (called frac-   fatigue, sore throat, and skin irritation.
                              tionation) in treating NSCLC is now
                              the subject of study in clinical trials.    Amifostine (Ethyol®) is believed to
                              Radiation therapy should be used in         protect normal cells from the damage
  fibrosis: formation                                                     caused     by     radiation    therapy.
 of fibrous tissue as a       combination with chemotherapy.
reaction or as a repair
                                                                          Amifostine is currently being studied
   process; may occur         Side Effects from Radiation                 in clinical trials. It is administered
      due to treatment
                              Although the purpose of radiation is to     immediately prior to radiation therapy.
                              destroy cancer cells, it can also injure
                              normal cells. This can cause side           Esophagitis. Many people experience
                              e ffects. Side effects from radiation       difficulty swallowing due to esophagi-
                              depend on the dose and the size of the      tis. This is due to the radiation to the
                              area being treated. New 3-dimensional       center of the chest that also includes
                              technology can significantly reduce the     the esophagus. If this happens, it may
                              size of the area being treated.             be easier to drink a liquid diet or eat
                              Administering radiation more frequent-      soft foods. Analgesics may be needed


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to relieve pain. If you have difficulty        sunburned, or tanned. Most lotions,
swallowing, be sure to tell you doctor.        powders and deodorants should not be
It could also be caused by some other          used during radiation treatments
factor.                                        because they may interfere with the
                                               radiation so that it cannot produce the
Fatigue. Most people begin feeling             desired effect of killing the cancer cells.
fatigued after two weeks of radiation          Ask your doctor or nurse about lotions            pneumonitis:
treatment to the chest area or to the          to soothe the irritation that do not inter-       inflammation of the
brain. Fatigue may gradually increase          fere with your treatment and other                lungs
as therapy continues, however, it does         things you can do to care for your skin
not necessarily mean that the cancer is
getting worse. Resting, such as nap-           Sore Throat. A dry or sore throat and
ping, more during treatment is advised.        difficulty in swallowing is generally a
The fatigue usually wears off within           minor, temporary (usually only a week
weeks after treatment is finished.             or two) complication of radiation ther-
                                               apy that may occur within a few days
Fibrosis. Fibrosis may develop in the          to two weeks after treatment has
treated lung tissue as well as in muscles      begun. Because eating may be difficult,
that the radiation passes through. This        a soft or liquid diet that includes milk-
may cause pain in breathing or when            shakes, soups, or prepared liquid sup-
moving in certain ways. Exercising             plements may be helpful. Pain medica-
may help prevent the development of            tions and topical anesthetics may be
fibrous tissue. Talk with a physical           needed to minimize the discomfort in
therapist or a pulmonary rehabilitation        swallowing. Sometimes, supplemental
specialist to see what can be done to          nutrition or fluids are given intra-
prevent fibrosis or to help relieve it if it   venously. Be sure to talk with your
does occur.                                    doctor about this symptom so that other
                                               causes of sore throat can be ruled out.
Pneumonitis. About 10% of people
develop fever, cough, and shortness of         Other Side Effects. Loss of hair in the
breath about 4 to 6 weeks after finish-        treated area may occur, and it may or
ing radiation therapy. If this happens,        may not grow back.
contact your radiation doctor. These
symptoms may be the result of radia-           Radiation therapy to the chest usually
tion lung injury (radiation pneumoni -         does not cause nausea, but if it does
tis), which occurs when the normal             o c c u r, your physician can provide
lung tissue surrounding the tumor is           antinausea medications.
injured during radiation therapy. You
may be given corticosteroids (steroids)        See “Chapter Eight: Supportive Care
to help lessen the loss of lung function       for Symptoms of Lung Cancer and Its
and to relieve symptoms.                       Treatments” for a detailed discussion
                                               of the side effects from treatment with
Skin Irritations. Skin in the treatment        radiation and how they are managed.
area may look and feel red, irritated,

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               TREATMENT OF SMALL                           Surgery may be used in some cases of
               CELL LUNG CANCER                             very early, limited stage when it
                                                            appears that the cancer has not spread
               BY STAGE
                                                            to any lymph nodes. If surgery is used,
                                                            it would always be in combination with
               Chemotherapy is the primary treatment
                                                            chemotherapy and may include radia-
               for SCLC. Radiation is also common-
                                                            tion therapy as well.
               ly used, especially to reduce some of
               the symptoms that may affect your
               ability to enjoy your life. For either
               stage of disease, you may find benefit       Extensive Stage
               from participation in clinical trials.
               Check out what is available before you       Treatment for extensive stage SCLC
               make treatment decisions.                    includes combination chemotherapy.
                                                            If the chemotherapy is successful in
               We have included in this manual an           reducing the size of the tumors in the
               algorithm, or chart, that can be found in    lungs, whole brain radiation may be
               the pocket just inside the back cover. It    used to prevent brain metastasis. If
               identifies the sequence of events that       brain metastasis is already present,
               occurs in managing SCLC. You may             radiation may be used to reduce the
               find it helpful to see this visual repre-    size of the tumor. Radiation to the
               sentation of the chain of events that will   lungs may also be used to reduce the
               take place as you and your healthcare        symptoms of SCLC.
               team make your treatment decisions.

                                                            IS THERAPY WORKING?
               Limited Stage
                                                            There are a number of ways to deter-
               Treatment for limited stage SCLC gen-        mine if treatment is working. Most
               erally includes combinations of              physicians routinely use performance
               chemotherapeutic drugs in combina-           status as an indication if therapy is
               tion with radiation.                         working. If pain is lessened, breathing
                                                            is easier, and there is less cough, it can
               Radiation therapy may be given either        be assumed that treatment is helping.
               along with or alternating with the
               chemotherapy. The timing and dose of         Your doctor will always perform a
               radiation, the target area, and how the      physical examination. Since lung can-
               radiation is administered are of major       cer affects all the organs of the body,
               importance. Talk with your radiation         this exam should be thorough. The
               oncologist about the value of thoracic       examination helps your doctor deter-
               or whole brain (cranial) radiation that      mine what additional tests she or he
               may be given to prevent any small            feels need to be done. For example,
               metastases from growing.                     standard diagnostic procedures such as
                                                            x-rays and CT scans can be used to


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gauge whether tumor(s) have changed         For these reasons, it is very important
in size or have disappeared. These tests    that people with lung cancer work
are usually done after three or more        closely with their healthcare team to be
“cycles” of therapy.                        sure their condition is monitored on a
                                            regular basis. For example, people with
PET (positron emission tomography)          lung cancer should see their physicians
scans are being investigated as a           every three months, at a minimum, for
method to determine the efficacy of         the first two years; every six months for
treatment. PET scans are particularly       two more years; and annually after that.
useful because they detect changes in       Many people continue to see their
the metabolism of cells, rather than in     physicians every three months so that
anatomical structure or size of the         any recurrence can be detected as early
tumor. As a result, PET scans can iden-     as possible. At these visits, your physi-
tify changes in cancer cell activity ear-   cian may order a CT or other scan.
lier in therapy than can CT and x-rays,     Your general health status will be mon-
which can only detect changes in tumor      itored, blood work probably done, and
size after several cycles of therapy.       other tests ordered that your physician
This new approach offers the added          feels are important, depending on your
advantage of not having to go through       history with lung cancer.
several cycles of a therapy that may not
be effective. PET scanning for this use
is not approved yet for reimbursement       PALLIATIVE THERAPY
by all insurance companies. In addi-
tion, PET equipment is not available in     Palliative therapy is any kind of treat-
every community. This method of             ment that is given to control symptoms
monitoring treatment is currently being     and improve quality of life when a cure
studied in a number of clinical trials.     is not possible. Palliative therapy can
                                            include surg e r y, radiation, and
                                            chemotherapy. Be sure to ask your
RECURRENCE                                  physician about the purpose of any
                                            treatment you receive. Make sure you
The risk of recurrence, or reappearance,    understand the possible benefits as
of lung cancer in the original site or as   well as the possible negative aspects of
a metastasis to another site is high.       any treatment you take.
When disease is advanced, the risk
increases. In addition, people who have     Palliative therapy also includes pain
developed lung cancer once seem to          management. Patients with recurrent
have a greater chance of developing         cancer may need aggressive pain man-
new primary lung cancer tumors. T h e       agement to maintain the highest quality
new primary tumor may be of the same        of life. Pain management is most eff e c-
type (such as adenocarcinoma) or it         tive when pain is treated as soon as it is
may be a different type (such as squa-      first experienced, before it becomes
mous after a primary adenocarcinoma).       severe. Be sure to report any pain you


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               may experience to your physician to get      e m e rging therapies now or in the
               treatment for it immediately.                future.

               Palliative therapy also includes pain
               management. Patients with recurrent          New Radiation Techniques
               cancer may need aggressive pain man-
               agement to maintain the highest quality      Conformal 3-D radiation therapy is an
               of life. Pain management is most eff e c-    important new technique that allows
               tive when pain is treated as soon as it is   the dose of radiation to be increased
               first experienced, before it becomes         with a reduction in the exposure time.
               severe. Be sure to report any pain you
               may experience to your physician to get      The use of primary radiation therapy in
               treatment for it immediately.                combination with chemotherapy is
                                                            being examined and shows promise. A
                                                            method of treatment delivery called
               NEW DIRECTIONS IN                            interdigitation, which involves manip-
                                                            ulating the scheduling of chemothera-
               TREATMENT OF SMALL
                                                            py and radiation therapy, is an example
               CELL LUNG CANCER                             of this approach.

               Chemotherapy in combination with             Fractionation is a general term that
               radiation therapy is considered to pro-      refers to the practice of varying the
               vide the best therapeutic results for        dose, duration, and time between radi-
               people with limited-stage SCLC. For          ation treatments. For example, the
               people with extensive-stage disease,         administration of smaller doses of radi-
               chemotherapy still offers the best           ation given more often is called accel-
               chance for extending survival.               erated hyperfractionation. Accelerated
               However, medical science has made            hyperfractionation may increase the
               many advances in recent years that           effectiveness of radiation therapy for
               may help you in your fight against lung      some patients.
               cancer. Many of the new drugs and
               techniques mentioned here are still          Radiation modifiers can be used to
               under investigation in clinical trials, so   change the cellular response to radia-
               their use is not widespread.                 tion. A generic drug called lonidamine
                                                            (Tirapazamine®), for example, seems
               The following list does not include all      to inhibit cancer cells from repairing
               of the new therapies being studied.          the damage caused by a radiation
               Rather, it is a brief overview of some of    treatment.
               the major areas of discovery. Consider
               talking with your physician about new        Radiation sensitizers make cells more
               cancer treatment developments. Not all       sensitive to the effects of radiation. For
               of the approaches described apply to         example, substances called topoiso-
               SCLC. Nonetheless, you may be able           merase I inhibitors have been used suc-
               to benefit from one or more of these         cessfully as radiation sensitizers.

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Gemcitabine® is an example of a drug         e ffective against the type of lung cancer
that may act as a radiation sensitizer.      you have.

Brachytherapy is a technique used to
deliver high doses of radiation from         Antiangiogenic Compounds
very short distances. This is accom-
plished by placing a radiation source in     There are a variety of products that are
the airway next to a tumor.                  capable of inhibiting the development
                                             of blood vessels that help to feed tumor
                                             cells growing in a solid tumor. These
Investigational                              products are called antiangiogenic
Chemotherapy Agents                          drugs or angiogenic inhibitors.

Promising new chemotherapeutic               Matrix Metalloprotease Inhibitors
agents are being used now, either alone      Matrix metalloproteases (MMPs) are a
or in a variety of combinations. Timing      group of enzymes that occur naturally
and dosing of chemotherapeutic agents        in the body. They help break down the
is under study. Products that can            structure between cells in order to
enhance the effectiveness (efficacy) of      make room for new, healthy tissue to
the drugs, or products that can protect      grow. These enzymes are important in
normal cells during chemotherapy are         normal processes like new blood vessel
also being studied.                          development, growth, and wound heal-
                                             ing. Researchers now believe that
It is now possible to determine, in          MMPs can assist tumor cells in invad-
advance of treatment, which chemother-       ing surrounding healthy tissue and
apeutic agent(s) will work best for a par-   metastasizing to more distant parts of
ticular tumor. Tissue samples can be         the body. It also appears that MMPs
sent to companies that will ascertain the    may play a role in helping new blood
sensitivity of a tumor to a range of         vessels grow and supply nutrition to
chemotherapy drugs. This service is          the tumor.
generally not covered by insurance
companies because the effectiveness has      A drug that stops the MMP enzyme
never been clearly established, so           from carrying out its function is called
patients must pay for this service out-of-   an matrix metalloprotease inhibitor
pocket. This technique is not widely         (MMPI). Clinical studies are underway
used. There are some false-positive          with a number of products to see if
results (results that indicate a             MMPIs can help to slow the growth of
chemotherapy will work, but in fact          lung cancer tumors.
does not). However, there are no false-
negative results (results that indicate a    Shark Cartilage
chemotherapy will not work, but in fact      Extracts of shark cartilage or similar
does). So, these tests can certainly help    compounds developed in the laboratory
to rule out therapies that will not be       are also thought to be antiangiogenic.


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                                Clinical studies on the efficacy of shark    drug. The cells are then destroyed,
                                cartilage extracts in treating lung cancer   reducing the size of the tumor.
                                are underway in the United States and
                                Canada.
                                                                             Biologics (Biological Response
                                Endostatin and Angiostatin                   Modifiers)
                                Another type of product are proteins
                                that occur naturally in the body. Tw o
                                                                             Cancer patients have been shown to
                                such compounds have been found:
                                                                             have impaired immune systems.
                                angiostatin and endostatin. Each is
                                                                             Biologics (also called biological
                                believed to have a similar function: to
                                                                             response modifiers [BRMs]), are
                                prevent blood vessel formation in
                                                                             agents that change the body’s immune,
                                tumors, thus slowing growth of the
                                                                             or biological response, to tumor cells.
                                tumor or destroying it completely.
                                                                             For example, BRMs may be used to
                                Clinical trials on these products proba-
                                                                             restore a person’s immune function or
                                bly will not begin for a number of years.
                                                                             prevent a tumor from metastasizing.
                                Thalidomide
                                                                             This is a particularly interesting area of
                                Thalidomide is a drug made famous in
                                                                             development, since recent scientific
                                the 1950s because of the serious birth
                                                                             breakthroughs have shown that the
                                defects it caused when it was adminis-
                                                                             body’s immune system plays a key role
                                tered to pregnant women. It has been
                                                                             in determining whether a person will
                                known for years to have other proper-
                                                                             develop cancer. A few of the BRMs
                                ties, although it was used initially to
                                                                             currently being used and under investi-
                                reduce serious nausea in pregnancy. It,
                                                                             gation are alpha interferon, interleukin-
                                too, appears to have anticancer proper-
                                                                             2, interleukin-4, and tumor necrosis
                                ties, working as an angiogenic
                                                                             factor. None of these agents have yet
                                inhibitor. Clinical trials are currently
                                                                             been proven to be effective in the treat-
                                underway.
                                                                             ment of lung cancer.


                                Photodynamic Therapy                         Gene Therapy

                                Photodynamic therapy (PDT) to open           Gene therapy for cancer uses genetic
                                the airways is being used in late-stage      material as a therapeutic agent. This
                                SCLC. When tumors block the major            approach works to treat human disease
                                airways, making it increasingly diffi-       by inserting a gene that has been lost or
   debulk: to reduce            cult for the patient to breath, PDT can      altered, or by trying to block expres-
the size of; for exam-          be used to debulk the tumor(s). After        sion of a gene whose function is to pro-
          ple, a tumor
                                administration of a photosensitizing         mote uncontrolled cell growth. Gene
                                drug, a bronchoscope is inserted into        therapy also can be used to provide a
                                the airway and a light is directed at the    new function to cells, such as produc-
                                tumor cells that have absorbed the           ing new proteins.

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Approximately 90% of SCLC patients            destroy only them. For example,
have abnormalities in their p53 gene,         Herceptin® is a monoclonal antibody
which is the gene responsible for sup-        now being used to target breast cancer
pressing tumors, whether it is this gene,     cells. Studies are underway to deter-
or other genes involved with cancer,          mine whether Herceptin could be used
genetic therapy may hold real promise         e ffectively with other solid tumors
for preventing and treating SCLC. A           such as lung cancer. Continued
variety of genetic approaches are being       advances in this area of research are
studied in the hopes of modifying the         likely to emerge in the near future.
immune system so that it can effective-
ly fight cancer cells.
                                              Vaccines

Chemoprevention                               The National Cancer Institute currently
                                              lists fifteen clinical trials that are eval-
Chemoprevention is designed to pre-           uating the use of vaccines to administer
vent the development of cancer in at-         biological therapies. The use of vac-
risk people and to prevent a recurrence       cines are being studied for both nons-
in patients apparently cured of cancer.       mall cell lung cancer and small cell
This approach involves giving a drug          lung cancer. These include:
before there are any signs of cancer.         • BEC-2 is a genetically engineered
Retinoids are known to be able to pre-             molecule designed to mimic the
vent some types of cancer. Inhaled                 shape of a structural tumor antigen;
retinoids have been studied in lung                the new antigen, called GD3, is
cancer; however, the side effect profile           overly expressed on a many tumors
of the drug used was severe. Other                 including small cell lung cancer;
studies will be conducted with new for-            phase III clinical studies are now
mulations of the drug. Selenium has                underway
also been shown to have chemopreven-          • carcinoembryonic antigen peptide-
tive capabilities and is in clinical trials       1 (CAP-1) contains a protein that
in people with NSCLC.                             may encourage an immune response
                                                  to lung cancer tumors
                                              • mutated (altered) ras genes have
Monoclonal Antibodies                             been found to cause cancer; ras
                                                  peptide protein is a protein frag-
Monoclonal antibodies are antibodies              ment produced by the ras gene
that are cloned, or artificially repro-       • interleukin-2 is a biological
duced, in a laboratory. They are highly           response modifier that may help the
specific for a single antigen, that is,           body fight disease by stimulating
they bind only to a certain protein that          the production of certain disease-
is a ”match” for them. This means                 fighting blood cells
monoclonal antibodies can be designed
to attack certain tumor cells and


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               SUMMARY                                          New advances in cancer treatment are
                                                                emerging. We are living in an age of
               Treatment of SCLC can take a variety             discovery in the understanding of can-
               of forms according to the stage of the           cer and cancer therapy. You may want
               disease at diagnosis, your health and            to call ALCASE at 800-298-2436,
               preferences, and many other factors.             NCI’s 800-4-CANCER hotline, or the
               There is no standard approach that can           Food and Drug Administration (FDA)
               be used effectively to treat all cases of        Patient Liaison office at 301-827-4460
               SCLC. The treatment you receive may              if you have questions or need informa-
               well involve a combination of thera-             tion. The Internet also provides many
               pies that may change over time in                opportunities to stay abreast of new
               response to the stage of SCLC you                developments.
               have and your personal circumstances.


                  Whether you enroll in a clinical trial,
                  choose an already approved treat -
                  ment, or choose no treatment other
                  than symptom management, be sure to
                  ask questions before making your
                  decision so that you fully understand
                  and feel comfortable with your deci -
                  sions.



               Clinical trials provide you with an
               opportunity to receive the newest, most
               aggressive therapy available for SCLC.
               They also allow you to contribute to
               the advancement of medical science.
               Remember to ask questions before
               enrolling in a clinical trial so that you
               feel comfortable with your treatment
               decision.

               Participation in a clinical trial may also
               allow you to contribute to the advance-
               ment of medical science. Whether you
               enroll in a clinical trial, choose an
               already approved treatment, or choose
               no treatment other than symptom man-
               agement, be sure to ask questions
               before making your decision so that
               you fully understand and feel comfort-
               able with your decisions.

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                    Supportive Care for Symptoms of
                      Lung Cancer and its Treatment
                                               Table of Contents                                 8
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.1
Disease-Related Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.2
    Anemia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.2
    Anorexia and Weight Loss . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.3
    Blood Clots . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.5
    Bloody Cough . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.6
    Confusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.6
    Constipation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.6
    Cough . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.6
    Depression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.7
    Dyspnea . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.7
    Fatigue . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.9
    Pain . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.12
    Paraneoplastic Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.13
    Pneumonia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.14
    Swelling of Neck or Face . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.14
    Weakness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.14
Treatment-Related Side Effects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.14
    Confusion or Loss of Mental Clarity . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.14
    Constipation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.15
    Hair Loss (Alopecia) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.15
    Mouth Sores and Other Oral Problems . . . . . . . . . . . . . . . . . . . . . . . . . . 8.16
    Myelosuppression . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.17
        Anemia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.17
        Leukopenia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.18
        Thrombocytopenia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.19
    Nausea and Vomiting . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.19
    Numbness (Peripheral Neuropathy) . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.20
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8.21
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       Supportive Care for Symptoms of
         Lung Cancer and its Treatment                                           8
INTRODUCTION                                        hensive plan tailored to you for treating
                                                    these symptoms.


B
         oth the symptoms of lung can-
         cer and the side effects from              Because lung cancer affects the lungs,
         treatments can cause a reduc-              which are vital organs, disruptive
tion in quality of life, making it diff i c u l t   symptoms like fatigue, cough, and
to do the things that bring joy and hap-            shortness of breath often appear before
piness and make life worth living. T h e y          the diagnosis is made, or soon there-
can also hinder or prevent healing. So,             after. Cancer may also cause a loss of
it is very important to begin treating              appetite and/or weight loss, as well as
symptoms as soon as they appear in                  pain. Be assertive in seeking care for
order to preserve the body’s ability to             your symptoms. There is much that can
carry out normal functions and to main-             be done to help you effectively cope
tain a reasonable quality of life.                  with these symptoms.

Supportive care is the care provided for
managing symptoms of the disease and                    Because lung cancer affects a vital
                                                        organ, symptoms such as fatigue, dys -
side effects of treatments. Many sup-
                                                        pnea, cough, and pain may be present
portive care options are available                      from the time of diagnosis. Untreated
today, with more options emerging all                   symptoms can interfere with treatment
the time.                                               and lead to a poorer quality of life.
                                                        Supportive care should begin at the
                                                        time of diagnosis.
    S u p p o rtive care for lung cancer
    patients includes symptom manage -
    ment, health-promotion activities, and          You may never experience some of
    rehabilitation. Supportive care is
    designed to provide maximum comfort
                                                    these symptoms and there may be other
    and to pre s e rve function through every       side effects or symptoms that you may
    phase of the lung cancer experience.            experience that are not described.
                                                    Either way, it’s important to recognize
                                                    and accept that how you feel is impor-
Each person living with lung cancer                 tant. Discuss your concerns with your
experiences an array of individual                  d o c t o r. This is the only way he or she
symptoms caused by the disease or its               will be able to help you find the best
treatments. Because you are unique, it              methods for managing these symptoms.
is best to work in partnership with your
healthcare team to develop a compre-


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                                DISEASE-RELATED                            enough of them immediately aff e c t s
                                SYMPTOMS                                   the body. An insufficient amount of
                                                                           red blood cells can have a profound
                                Many people living with lung cancer        e ffect on quality of life. Lung cancer
                                experience multiple symptoms by the        makes it difficult for the lungs to take
                                time of diagnosis and throughout the       in oxygen. So, it is very important,
                                course of their disease. In the exams      both for quality of life and for healing,
                                conducted by your oncology team,           to get regular complete blood counts to
                                signs of disease may also be found. The    ensure that the number of red blood
                                most commonly reported disease-relat-      cells are in the normal range. Tests will
                                ed signs and symptoms (in alphabetical     be conducted to measure hematocrit
                                order) are:                                and hemoglobin levels. A normal
                                • anemia                                   hematocrit for healthy men is between
                                • anorexia and weight loss                 42% and 52%. For healthy women,
                                • blood clots                              “normal” has always been assumed to
  anemia: condition
                                • bloody cough (hemoptysis)                be lower, between 36% and 46%.
caused by a reduction
 in the amount of red           • confusion                                Normal hemoglobin concentration val-
   blood cells that are         • constipation                             ues for healthy men are between 14.0
produced by the bone            • cough                                    g/dL and 18 g/dL, and for women
 marrow; anemia can                                                        between 12.0 g/dL (hematocrit below
be a result of the can-         • depression
                                • dyspnea                                  36%) and 16 g/dL. Studies have
 cer itself or from the
    treatments; symp-           • fatigue                                  shown that people with a hemoglobin
       toms of anemia           • pain                                     of less than 12 g/dL (hematocrit below
  include fatigue and           • paraneoplastic syndrome                  36%) have a reduced quality of life.
                dyspnea                                                    Many people with lung cancer have
                                • pneumonia
                                • swelling of neck or face                 red blood cell counts that are below
    anorexia: dimin-
 ished appetite and/or          • weakness                                 normal.
     aversion to food

 dyspnea: shortness                                                           An insufficient amount of red blood
  of breath with dis-           Anemia                                        cells can have a profound effect on
comfort, “air hunger”                                                         quality of life.
                                Cancer and cancer treatments can cause
                                the number of red blood cells produced
                                by the bone marrow to drop below nor-      Anemia can be treated in a variety of
                                mal. This condition is called anemia.      ways. For example, eating more foods
                                Anemia can cause fatigue (extraordi-       that contain iron may help if the ane-
                                nary tiredness), shortness of breath,      mia is due to iron deficiency. Or, the
                                dizziness, cold hands and feet, depres-    physician may prescribe erythropoietin
                                sion, rapid heart beat, and inability to   (Procrit® and Epogen®), a natural hor-
                                concentrate, among other symptoms.         mone now man-made and commercial-
                                                                           ly available that stimulates your bone
                                Because red blood cells carry oxygen       marrow to produce more red blood
                                to all of the body’s cells, not having     cells. Blood transfusions, which can


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provide temporary relief, are also com-    •       need to add salt or sugar to everything
monly used.                                •       new dislike for foods previously
                                                   enjoyed
Be sure to ask about anemia and about      •       nausea resulting from the scent of
your red blood cell count each time you            cooking foods, especially meat
visit your healthcare provider. Keep       •       general hypersensitivity to the
tabs on your red blood cell count                  smell of foods
throughout the course of treatment.
But, your body will also tell you when     Eating foods cooled to room tempera-
your red cell counts are low because       ture may be helpful if you experience
you will feel tired and short of breath.   an increased sensitivity to odors. Try to
Maintaining a normal red blood cell        eat foods you have never tried before.
count can have a positive effect on
your quality of life and healing.
                                                                   Tips for Boosting Calories

Anorexia and Weight Loss                       If you have trouble eating enough to keep your weight up, try
                                               adding the following high-calorie foods to your diet (unless
                                               nausea and vomiting are a problem). Consider also adding
Anorexia is the loss of normal appetite.       high-calorie snacks such as nuts, cheese, and crackers.
It is a common side effect of cancer
and cancer treatment. If it is left            •      Butter/margarine: Melt a teaspoon of butter or margarine
untreated, it can lead to muscle wast-                on hot foods such as soups, vegetables, mashed potatoes,
ing, a serious problem for people fac-                cooked cereal, rice, and soft-boiled eggs.
ing life-threatening illnesses such as         •      Cream: Use cream or whipped cream as a topping for hot
lung cancer.                                          chocolate, pudding, pie, gelatin, and other desserts.

Lung cancer and lung cancer treat-             •      Ice cream: Add ice cream to milk shakes and fruit
ments can create a number of reasons                  desserts. Keep a variety of flavors in the freezer for
                                                      snacks.
for a normal appetite to disappear,
including depression, tumor growth,            •      Mayonnaise: Use mayonnaise in green salads, meat sal-
difficulty in swallowing, pain, feeling               ads, and deviled eggs. Combine with chopped meat,
full, and taste and smell changes.                    fish, chicken or eggs for sandwich spreads.

                                               •      Peanut butter: Spread peanut butter on banana or apple
                                                      slices, stuff celery with it, use it in sandwiches. If it’s too
   Anorexia left untreated can become                 dry, mix with mayonnaise or sour cream.
   serious. Talk with your doctor or
   nurse about any eating problems you         •      Sour cream: Serve sour cream on baked potatoes, mix
   may have.                                          into vegetables, use to make gravy and salad dressing.
                                                      Mix with brown sugar and add to fruit for dessert.

Common taste and smell changes                 •      Milk: Use whole milk, evaporated milk, and half-and-
include:                                              half (half cream, half milk) in preparing cereals, cocoa,
                                                      canned soups, and puddings.
• foods taste metallic or medicinal
• foods taste sweet

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                                                                           Eating well is good supportive care
              Tips forAdding Protein to Your Diet                          you can do for yourself.

    If your appetite is poor, meats and other protein food may
    taste peculiar to you. The following high-protein foods
                                                                       Other things you can do to help man-
    and food preparation tips can increase the protein content
    of your diet while adding very little to the actual quantity       age anorexia include:
    of food consumed.
                                                                       •   Eat a big breakfast. You may be
    •   Fish/meat: Dice or grind beef, fish, and poultry and               more hungry at breakfast than at
        add to soups and casseroles.
                                                                           other times of the day.
    •   Cheese: Add grated cheese (or small chunks) to
        sauces, casseroles, soups, or vegetables. Try melting          •   Let other people fix your meals.
        sliced cheese over hot apple pie. Combine cottage                  This will conserve your energy and
        cheese or cream cheese with fruit. Use cream cheese                keep you away from cooking
        on bread or rolls.
                                                                           odors.
    •   Eggs: Blend finely chopped hard-boiled eggs into
        sauces, gravies, and salad dressings. You will hardly          •   Snack throughout the day. Eat fre-
        notice it. Make beverages and desserts containing                  quent small amounts.
        eggs, such as custard, eggnog, and angel-food cake.
                                                                       •   Eat calorie-packed foods. Add pro-
    •   Skim milk powder: Add skim milk powder to fluid
        whole milk and chill well. Add to hot cereals, cold                tein powders to beverages for extra
        cereals, scrambled eggs, soups, ground meat (for ham-              calories and protein.
        burgers, meatballs, or meatloaf), casseroles, sauces
        and gravies, cream sauces (for creamed meat, fish, or          •   D o n ’t drink beverages during your
        poultry), and to the ingredients for cakes and pies.
                                                                           meals. Beverages contribute to feel-
        Use in preparing cereals, cocoa, canned soups, and
        puddings.                                                          ings of fullness. But be sure to drink
                                                                           plenty of fluids between meals
    •   Ice cream: Add extra ice cream to milk shakes.                     because it is very important to keep
                                                                           you body well hydrated, especially
    •   Soy products: Tofu, soy powder or other forms of soy
                                                                           if you are receiving therapy.
        are excellent sources of protein and can be added to
        nearly all foods without changing their flavor or tex-
        ture.                                                          •   Sometimes alcohol can relax you
                                                                           and stimulate your appetite. You
                                                                           may want to try a glass of wine or
                     If you find something you like and can                beer shortly before eating.
                     eat without problems, eat it. Eat as
                     much as you want to. Eat what tastes              •   Try some light exercise, such as a
                     good to you. See below for “Tips on                   short walk, about an hour before
                     Boosting Calories” and “Tips for                      you eat.
                     Adding Protein to Your Diet.”
                                                                       •   Food supplements like Ensure ®,
                                                                           Isocal®, and Sustacal® can help you
                          Good food is good medicine. Be sure
                          to eat well during your treatments.
                                                                           get the nutrients and calories you
                                                                           need when you really can’t eat.

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Anorexia can lead to cachexia, which            or more of their body weight. Be sure
can be a serious problem for a person           to discuss your anorexia and cachexia
with lung cancer. Cachexia is the               with your doctor.
breakdown of the body’s muscle mass
during chronic illness. Symptoms of
cachexia are muscle wasting, fatigue,           Blood Clots
loss of concentration, and weight loss.
The exact cause of cachexia has not             People with lung cancer may be more
been identified.                                prone to developing blood clots.
                                                However, they occur much less fre-
There are several medications avail-            quently in people with squamous cell
able to counteract the muscle wasting           or small cell lung cancer than in those
that results from anemia and/or anorex-         with adenocarcinoma or large cell can-
ia. These include:                              c e r. Blood clots form in the legs.
• megestrol acetate (Megace®); appe-            Swelling in the legs or feet may indi-
    tite stimulant                              cate that a clot has developed.
• oxymetholone (Anadrol®-50); ana-
    bolic steroid for building muscle           Blood clots can be a serious problem.
• oxandrolone (Oxandrin ®); anabolic            They can move through the blood-                cachexia: breakdown
    steroid for building muscle                 stream to the lungs, causing pul -              of muscle mass
• testosterone (Depo-Te s t o s t e r o n e®,   monary embolism; or to the brain,               resulting from rapid
    Delatestryl®); primary androgenic                                                           weight loss
                                                causing stroke. Sometimes, pulmonary
    (male) hormone that controls                embolism can lead to heart attack. All          pulmonary
    development of male musculature;            of these conditions are serious prob-           embolism: closure
    may induce male traits in women             lems that can be fatal.                         of the pulmonary
• human            growth       hormone                                                         (lung) artery or one
    (Serostim  ®); hormone that promotes                                                        of its branches by a
                                                Blood clots can be treated medically            blood clot
    weight gain                                 with heparin, followed by products
                                                such as coumadin. Coumadin causes a
Call your doctor if:                            thinning of the blood, reducing the
• you lose five pounds or more                  chance for clots to form. However,
• it is painful to eat                          treatment requires careful manage-
• you cannot eat for more than a day            ment. If your doctor decides that it will
                                                be helpful for you to begin treatment
Weight loss is both a symptom of lung           for blood clots, you will need regular
cancer and a side effect of treatment. It       blood tests to ensure you are receiving
is very common and usually manage-              the correct amount of drug.
able. However, weight loss can be seri-
ous if left unchecked.

Studies have shown that people with
cancer suffer adverse effects in their
ability to function when they lose 5%


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                          Bloody Cough                                  exercise that can be done at any time,
                                                                        and at no expense. Abdominal breath-
                          People with lung cancer often have            ing that exercises the muscles of the
                          “bloody cough” (hemoptysis). This is          abdominal area may also help. A yoga-
hemoptysis blood in
sputum produced by        due to tumor growth in the lungs and          type exercise that can help relieve con-
             cough        happen when small blood vessels are           stipation involves getting on hands and
                          broken by the action of the cough.            knees in a crawling position, on the
                          Cough suppressants may be helpful in          floor or on a bed, and doing abdominal
                                                                        breathing (see page 8 for instructions
                          controlling the cough.
                                                                        on abdominal breathing). Doing this
                                                                        exercise a number of times a day can
                                                                        often help speed up bowel activity.
                          Confusion                                     Your doctor or oncology nurse can also
                                                                        recommend medications that may help.
                          Confusion, when it occurs, is common-
                          ly a result of stress, but may also be the
                          result of metastatic disease. Metastasis
                                                                        Cough
                          to the brain frequently results in peri-
                          ods of confusion, but metastasis to
                                                                        A nagging cough is very often the
                          o rgans such as the liver can also
                                                                        symptom of lung cancer that prompts a
                          change the body’s chemistry enough
                                                                        person to seek medical help. Coughing
                          that it can also cause a confused mental
                                                                        is the body’s mechanism for clearing
                          state.
                                                                        and protecting the breathing tubes and
                                                                        lungs from mucous, dust, irritants, and
                          If you are experiencing confusion, talk
                                                                        foreign bodies. Receptors in the breath-
                          with your doctor or oncology nurse
                                                                        ing tubes, sensitive to irritants, cause
                          about it. You may need to have help in
                                                                        the urge to cough.
                          keeping track of the various medica-
                          tions you are taking in order not to
                                                                        Coughing, especially a change in the
                          make errors. Errors in medications can
                                                                        pattern of the cough, is an important
                          cause serious problems. Your nurse or a
                                                                        warning sign, and the underlying
                          family member might develop a simple
                                                                        cause(s) of coughing may change dur-
                          check-off list of the medications you
                                                                        ing the course of your illness. Pay
                          take for you to use.
                                                                        attention to your cough and tell your
                                                                        physician about any changes. Your
                                                                        physician will most likely ask you for a
                          Constipation                                  detailed history of your cough and then
                                                                        carry out diagnostic tests to determine
                          Constipation that is not treatment relat-     the specific cause or causes.
                          ed is usually the result of inactivity
                          and, of course, inactivity is probably        Some of the underlying causes of
                          the result of fatigue. It is important that   cough are:
                          anyone with lung cancer try to move as        • asthma
                          much as possible. Walk; it’s a great          • blood clots in the lungs

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•   chronic bronchitis                      fluid in the lungs may be causing the
•   fluid in and/or around the lungs        problem, morphine may be used. Many
•   left ventricular heart failure          lung cancer patients have benefited
•   postnasal discharge                     from using a nebulizer to deliver mor-
•   reflux of stomach acids into the        phine directly to the tissues that can
    esophagus                               benefit. A nebulizer eliminates the
•   smoking                                 whole-body symptoms associated with
•   tumor in the airway                     opiates taken by pill or injection.
•   upper or lower respiratory infection
•   vocal cord dysfunction
                                            Depression
There are a number of options for treat-
ing cough. It’s important, however, to      Depression is a common occurrence
identify the cause of the cough for the     for people with lung cancer. If you are
treatment to be fully effective. Treating   feeling depressed over a period of a
your cough has the potential to signifi-    few weeks, talk with your doctor. If it
cantly improve your quality of life.        is determined that you are clinically
                                            depressed, there are numerous medica-
When specific, treatable causes are not     tions to help control depression,
found, cough suppressants such as dex-      including fluoxetine hydrochloride
tromethorphan hydrobromide can be           (Prozac®), sertraline hydrochloride
very helpful, especially in early-stage     (Zoloft®), and bupropion hydrochloride
disease.                                    (Wellbutrin®), among others. For mild
                                            depression that does not require med-
Antibiotics are sometimes prescribed        ication, regular exercise and being
for a cough. Be aware, however, that        socially active can often help.
using antibiotics long-term to treat a
cough may lead to problems such as          The members of the Association of
resistance to the drugs and distur-         Oncology Social Workers (AOSW) are
bances of the gastrointestinal tract.       specially trained in working with and
                                            counseling people who have cancer.
                                            Check your local hospital or the yellow
    Coughing was my biggest problem.        pages of your telephone directory for
    No amount of the usual cough sup -
    pressants or even narcotics helped.
                                            certified oncology social workers in
    Then my doctor recommended that I       your area.
    use a nebulizer with morphine drops a
    few times a day. This helped more
    than anything. I could carry on a
    conversation and eat a meal. What an
                                            Dyspnea
    improvement!
                  — lung cancer survivor    Dyspnea, a common symptom of lung
                                            cancer, is air hunger that causes diffi-
                                            culty in breathing. It is triggered by the
For late-stage disease, when tumors or      feedback mechanism discussed in

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              Chapter One. When the cells in your                  it is moisturized, otherwise it can
              body need more oxygen to function,                   dry out your airways and cause
              you automatically breathe faster.                    coughing and other problems.

              Sensations of dyspnea may include a              •   Ask your physician about the pos-
              feeling of tightness in the chest, fast              sibility that you may be anemic.
              breathing, and shortness of breath.                  Anemia can cause shortness of
              Dyspnea can be caused by a number of                 breath because there are too few
              things, including airway obstruction by a            red blood cells to deliver oxygen to
              tumor, fluid in the lungs, anemia, and               cells in the body.
              muscle weakness. It can also be caused
              by other medical conditions such as              •   Practice controlled breathing.
              asthma, chronic obstructive pulmonary                Controlled breathing will help you
              disease (COPD), emphysema, or heart                  feel as if you are getting enough air.
              disease. Shortness of breath can also                Start by taking a normal breath,
              cause anxiety, which makes the problem               counting the seconds it takes you to
              worse. The feeling of shortness of breath            inhale through your nose. Exhale
              and the impact of too little oxygen can              through pursed lips for twice as
              seriously affect your quality of life.               long as you inhale. Don’t force the
                                                                   air out, just breathe out in a con-
                                                                   trolled manner.
                  Dyspnea can be treated in a variety of
                  ways, but the underlying cause must          •   Practice abdominal breathing.
                  be determined.
                                                                   People with lung cancer say that
                                                                   mastering this technique makes an
                                                                   enormous difference in their ability
              Determining the cause of dyspnea is                  to fight shortness of breath.
              extremely important. Be sure to seek                 Abdominal breathing allows you to
              care from an expert in lung diseases,                use all of the lung tissue that you
              such as a pulmonologist, to identify the             have. Most of us use only the top 10
              source of dyspnea. This will allow more              to 20 percent of our lungs. To learn
              e ffective treatment to be identified.               to do abdominal breathing, lie down
                                                                   and place a pillow under your
              Try some of the following tips to help               knees. Put one hand on your upper
              you manage the discomfort of dyspnea:                chest and the other on your
                                                                   abdomen at the base of your breast-
              •   Inform your healthcare provider if               bone. Exhale slowly through pursed
                  you experience dyspnea. He or she                lips, squeezing your abdominal
                  may suggest the use of supplemen-                muscles upward and inward. Yo u r
                  tal oxygen or medications such as                abdomen will press down toward
                  bronchodilators and steroids to                  the floor. As you inhale through
                  ease your breathlessness. If you use             your nose, your abdomen will rise
                  supplemental oxygen, be sure that                as your diaphragm lowers. Babies


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    naturally breathe this way. Wi t h      Fatigue
    practice, it can become effortless
    and it will greatly increase your       Fatigue is considered by most lung
    ability to take in necessary oxygen.    cancer survivors to be the most debili-
                                            tating symptom associated with the
•   Relax. Tense muscles use more           disease and with its treatment. Fatigue
    oxygen. Try using relaxation tech-      associated with lung cancer is different
    niques, visualization, and other        from everyday tiredness. It is an over-
    means to deeply relax. Use these        whelming, sustained sense of exhaus-
    techniques throughout the day. Yo u     tion and decreased capacity for physi-
    may be tense and not even realize it.   cal and mental work. It has a profound
                                            impact on a person’s ability to carry on
•   Change your position. Sit in a chair    normal life activities.
    with your feet spread shoulder
    width apart. Lean forward and
    place your elbows on your knees.            While you are on treatment, treat -
    Think about relaxing your arms              ment-related fatigue is added to the
    and shoulders. Sit down in a chair          disease-related fatigue, and that can
                                                mean that your lifestyle during treat -
    near a low table. Place a few pil-          ment may have to change. For some,
    lows on the table. Fold your arms,          this may simply mean taking a nap
    place them on the pillows and relax         and/or cutting back on some activi -
    into the pillows. Concentrate on            ties, while for others it may require
    relaxing your shoulders and arms.           very significant reductions in their
                                                activities.
    Stay in this position until you feel
    comfortable. If you feel short of
    breath when you are walking, lean
                                            The fatigue you feel may or may not
    your back against a wall or tree
                                            improve for several reasons. Lung can-
    with your feet about shoulder width
                                            cer physically affects your ability to
    apart. Slump your shoulders for-
                                            breathe. You may have lost lung tissue
    ward and relax your arms.
                                            because of surgery. If your lung cancer
                                            could not be treated surg i c a l l y, the
•   Consider the use of nutritional sup-
                                            tumor(s) in your lungs reduce your
    plements.
                                            breathing capacity. Both of these situa-
                                            tions can result in fatigue because not
•   Ask about transfusions or treatment
                                            as much oxygen is taken in and not as
    with erythropoietin.
                                            much carbon dioxide is exhaled.
                                            Fatigue may be due to the disease or
•   If a tumor is obstructing your air
                                            treatment, but it can also be due to ane-
    passages, ask your physician if it
                                            mia. It’s important that your doctor try
    can be removed or reduced in size
                                            to determine why you are experiencing
    with surgery, chemotherapy, radia-
                                            fatigue. Most people who have fatigue
    tion, or photodynamic therapy.
                                            caused by their treatment for cancer
                                            report that it declines over time.

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                                     Suggestions for Energy Conservation
                   Advanced Activities of Daily Living:     •   line ovens and burner drip pans
                                                                with foil
                   Housekeeping                             •   sit while preparing food
                   • spread tasks out over the week         •   rest elbows on the table or
                   • do a little bit each day                   counter
                   • delegate heavy work                    •   let dishes soak instead of scrub-
                   • hire help                                  bing
                   • use a wheeled cart, carryall, or       •   use a dishwasher
                      carpenter’s apron to carry sup-       •   let dishes air dry
                      plies                                 •   use a jar opener
                   • do whatever you can do sitting         •   use a rubber mat or wet towel
                   • use long-handled dusters, mops,            under mixing bowls to help
                      etc.                                      steady them while stirring or mix-
                   • use a long-handled dust pan                ing
                                                            •   don’t lift heavy pans off the stove
                   Shopping                                 •   ladle the food out at the stove
                   • make a list first                      •   use mitten pot holders to take
                   • organize list by store aisle               advantage of the entire hand to
                   • combine errands to reduce the              lift
                      number of trips                       •   use placemats instead of table-
                   • use a power scooter if the store           cloths. They are easier to place
                      has one                                   on the table and easier to clean.
                   • request store assistance with          •   use lightweight utensils
                      shopping and getting packages to      •   prepare double portions and
                      the car                                   freeze half for later
                   • shop at less busy times; it will       •   leave heavy containers where
                      take less time                            they can be used without lifting
                   • shop with a friend                         (countertops, etc.)
                   • delegate shopping                      •   drag garbage bags instead of lift-
                                                                ing (or use a wheeled can)
                   Meal Preparation
                   • assemble all ingredients before        Laundry
                      you start                             • use a laundry cart with wheels
                   • use mixes or prepackaged food          • use an automatic washer and
                   • use cookware you can serve from           dryer
                   • use smaller appliances (mixer,         • sit to transfer clothes to the dryer
                      toaster oven, microwave                  if possible
                   • use electric knife and can opener      • use commercial prewash instead
                   • use ergonomically designed uten-          of scrubbing
                      sils                                  • wash bras and socks in a lingerie
                   • transport items on a rolling cart         bag to avoid tangling
                   • store frequently used items at         • drain hand-washables and press
                      chest level to avoid bending and         water out instead of wringing
                      stretching



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                        Suggestions for Energy Conservation

    •   sit to iron, and adjust board         •   delegate some childcare responsi-
        height                                    bilities if possible
    •   use a lightweight iron with a         •   take advantage of programs like
        spray attachment                          Mother’s Day Out
    •   slide iron onto an asbestos pad       •   Teach small children to climb
        between uses to minimize lifting          onto your lap rather than picking
    •   hang clothes on doorknob instead          them up
        of the top of the door                •   teach children to make a game of
    •   wear clothes that do not need             some household chores
        ironing
                                              Workplace
    Childcare                                 • plan workload around your per-
    • plan activities around the table or        sonal best times of the day
        in the living room to allow sitting   • arrange workplace ergonomically
    • instead of going to the zoo, go         • sit if you can
        somewhere you can sit or lie          • take periodic rest breaks
        down

                  Hints for Taking Advantage of Offers of Help

    •   Put someone else in charge or             would need to leave.”
        organizing the job list, assigning    •   Have your job coordinator make
        jobs, and supervising the work.           maps or preprinted instructions
    •   Identify errands, recreation, and         for things like giving you a ride
        chores — remember that help is            to appointments or preparing
        not limited to meals and rides!           meals so that people don’t have
        (Walk the dog, pick up the dry            to get back in touch with you.
        cleaning, take the kids to the zoo,   •   Develop a system for keeping
        weed the garden, do the mending,          track of essential jobs like trans-
        take out the garbage every week,          portation to medical appoint-
        etc.).                                    ments, picking up prescriptions,
    •   Remember that help should not             meals, etc.
        generate work for you — you           •   When you can’t thank everyone
        don’t need to talk to, feed, or           individually, you and your family
        entertain the helpers.                    may want to put a “thank you” in
    •   Get comfortable with the idea of          the local paper or the church bul-
        telling people that you may not           letin.
        be able to tell if you’ll feel like   •   Your job coordinator can keep
        accepting an invitation. Saying           track of things that were the
        something like “I’d like to go to         most helpful — and you can pass
        the movies with you if I feel like        these ideas along or use them to
        it on Saturday. I can let you             help others when you are feeling
        know 30 minutes before we                 better.




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               The following are some tips to help              relaxation techniques or activities
               you manage disease- and/or treatment-            such as listening to music, reading,
               related fatigue:                                 or bird watching.

               •   Conserve energy. Please note the         •   Eat a balanced diet and have small
                   table entitled ”Suggestions for              meals throughout the day. Consult
                   E n e rgy Conservation,” which               with a dietitian to determine
                   offers simple suggestions to make            whether the food you eat is provid-
                   life a little easier when you are            ing you with the nutrients and calo-
                   experiencing fatigue.                        ries you need. Be aware that your
                                                                nutritional needs may change dur-
               •   Minimize unnecessary bedrest.                ing the course of your illness.
                   Bedrest can rob you of energy and
                   cause your muscles to waste away.        •   Manipulate cancer treatment cycles
                   The less you do, the less you feel           so that you are not continually
                   like doing.                                  overwhelmed by fatigue.

               •   Exercise daily. Inactivity leads to      •   Because cancer-related anemia can
                   muscle loss; muscle loss leads to            cause fatigue, it should be treated
                   fatigue. If you exercised before             appropriately (see above under
                   your diagnosis, keep up with it,             “Anemia”).
                   although you may have to reduce
                   the time and/or the intensity of your    Let your friends, family, and healthcare
                   activities. If you did not exercise,     team know about your feelings of
                   begin a program. Start walking or        fatigue. Describe how tired you are in
                   lifting light weights. Do whatever       terms of how difficult it is for you to do
                   you can to maintain your muscle          tasks of daily living, such as washing
                   tone. Be sure to discuss your activ-     your face or climbing up on the exam
                   ities and exercise plan with your        table.
                   doctor.
                                                            If your fatigue is due to anemia, your
               •   Ensure that you have uninterrupted       doctor will provide medical manage-
                   quiet and rest periods. This will        ment for this.
                   help conserve energy for the things
                   you need and want to do.

               •   Minimize       emotional       drains.   Pain
                   Identify the stresses in your life and
                   work to reduce them. Participate in      Be sure to tell your doctor about any
                   enjoyable activities. Focus on the       pain you may be experiencing.
                   important things in your life. Join      Because cancer pain changes over
                   a support group.                         time, controlling it requires continuous
                                                            vigilance and most likely will involve a
               •   Reduce mental fatigue through            number of kinds of treatments. The

        8.12
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types and amounts of drugs used to          but rather should receive strong pain
control pain should be individualized       medication immediately. It is also
to maximize relief and minimize side        important to note that analgesic therapy
effects. Remember, pain can be well         (including acetaminophen, which caus-
controlled. It is one of the symptoms of    es fewer problems than aspirin) is used
cancer that has been well researched,       along with the stronger pain control
and healthcare providers are trained in     agents. The level of analgesics needed
the both the assessment and the treat-      to prevent the pain from “breaking
ment of pain.                               through” must be maintained.

                                            Pain control has become a sophisticat-
   Pain control has become a sophisti -     ed science. Be sure you take advantage
   cated science. Be sure you take          of advances in pain control techniques.
   advantage of advances in pain control
   techniques.
                                            There are many pain control medica-
                                            tions in many forms (tablets, liquid,
                                            patch, injection) available. Let your
                                            healthcare team know about any pain
The World Health Org a n i z a t i o n      you have on a regular basis and ask for
(WHO) has developed a three-step lad-       treatment. Some hospitals have pain
der for the treatment of cancer pain.       centers dedicated specifically to man-
                                            aging patients’ pain.

                                            Pain can rob you of your quality of life
                                            and your ability to function. Work with
                                            your healthcare providers to stay on top
                                            of it and keep it under control.
                                            Controlling pain in the long run is
                                            much easier if it is kept to a minimum
                                            at the beginning.

                                            Paraneoplastic Syndrome

                                            As tumors grow, they may cause symp-
WHO Cancer Pain Treatment A p p r o a c h   toms in other parts of the body. This is
                                            called paraneoplastic syndrome. This is
                                            because the tumors may invade or
                                            obstruct other body structures or
The WHO approach advises healthcare         o rgans. Lung cancer is associated with
providers to match the intensity of pain    paraneoplastic syndrome more than any
reported by the patient with the potency    other type of cancer. For example, the
of the drug. It is important to note that   tumor may press on nerves or invade
people reporting severe pain should not     the heart, causing neurologic or cardiac
be started at the bottom of the ladder,     problems. Some tumors actually pro-

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               duce certain hormones that may cause        swelling in the neck or face. Radiation
               problems such as Cushing’s syndrome,        or photodynamic therapy (PDT) to the
               hypercalcemia, hyperthyroidism, or          tumors may help to reduce the swelling.
               kidney disease. Lesions may also
               appear on the skin.
                                                           Weakness (Asthenia)
               Your doctor will keep track of many
               different body functions through the
               physical examination and blood tests        Weakness is a common symptom of
               that are routinely done. Talk with your     disease as well as treatment for lung
               doctor about any symptoms you may           cancer. Even mild exercise can help to
               be having. There may be treatments          rebuild lost muscle tone and increase
               that can help.                              strength. However, fatigue may pre-
                                                           vent you from exercising. Talk with
                                                           your doctor about supportive manage-
                                                           ment and consult with a pulmonary
               Pneumonia                                   rehabilitation specialist who may be
                                                           able to provide necessary support.
               Pneumonia is common among people
               with lung cancer. When fluids build up
               in the lungs, infection can set in.         TREATMENT-RELATED
               Pneumonia that is caused by bacteria,       SIDE EFFECTS
               which the common type of pneumonia
               among people with lung cancer, can be
                                                           In addition to the symptoms caused by
               treated with antibiotics.
                                                           the disease, the treatment of lung can-
                                                           cer may cause side effects such as:
               Each time you visit your doctor, she or
                                                           • confusion and loss of mental
               he will listen to your lungs to check for
                                                               clarity
               the presence of pneumonia. Since a
                                                           • constipation
               bacterial infection generally causes a
                                                           • hair loss (alopecia)
               fever, it you begin to run a temperature
                                                           • mouth sores and other oral
               that is above normal, you should call
                                                               problems
               your doctor immediately so treatment
                                                           • myelosuppression
               with antibiotics can be started if you
                                                               • anemia
               have bacterial pneumonia. Some other
                                                               • leukocytopenia
               types of pneumonia can also occur and
                                                               • (neutropenia/
               your doctor will probably want to get a
                                                                   granulocytopenia)
               sample of your sputum for testing.
                                                               • thrombocytopenia
                                                           • nausea and vomiting
                                                           • numbness (peripheral neuropathy)
               Swelling of Neck and Face

               Tumor growth in the lungs and lymph
               nodes in the chest may produce

        8.14
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Confusion and Loss of                      cancer treatment. Although not life-
Mental Clarity                             threatening, it is a constant visual
                                           reminder of what they are going
Mental clarity becomes a problem for       through. Because hair cells, like cancer
some people when they are receiving        cells, are rapidly dividing, chemothera-
chemotherapy. This phenomenon has          py targets and kills them as well as can-
been termed the “chemofuzzies” by          cer cells. Radiation to the head may
people receiving chemotherapy. It can      also cause hair thinning or loss.
also be caused by radiation to the brain
used to control brain metastasis. Some
                                               Hair that is lost as a result of
people find it hard to concentrate or          chemotherapy treatment almost
read, and may find their memory to be          always grow back.
somewhat impaired. These effects usu-
ally diminish after chemotherapy ends,
although some people find it takes a       Hair loss can occur in varying degrees
year or so before they feel completely     and at various places on the body. Hair
“normal” again.                            loss can occur on the entire body or just
                                           in certain areas. Hair loss can be com-
                                           plete or hair may just become thinner.
Constipation                               If hair loss occurs, it usually begins
                                           about 1 to 4 weeks after treatment
Constipation may be a problem. Drink       starts.
lots of fluids to help prevent or reduce
constipation. Eat a diet high in fiber
with plenty of fresh fruits and vegeta-        Your doctor or oncology nurse can
bles. Tell your doctor or nurse about          tell you whether hair loss is likely
                                               with the treatment you will receive.
this problem so that they can provide
medicine if necessary. Don’t forget nat-
ural remedies for constipation, includ-
                                           Before your cancer treatment begins,
ing prunes or prune juice, bran, and
                                           you may want to go to your hairdresser
applesauce. Eat plenty of whole fruits
                                           or barber, a professional wig or hair-
and vegetables to get the fiber you
                                           piece consultant, or a wig bank to match
need. You may want to avoid foods
                                           your color and style ahead of time.
such as cheese and other milk products
                                           Some local offices of the American
that can cause constipation.
                                           Cancer Society have wigs to loan.
                                           Coping Magazine provides a list of
                                           stores that carry wigs. You may want to
Hair Loss (Alopecia)                       purchase some soft hats or bandannas.

For some people, hair loss (alopecia) as
a result of cancer treatment can be one        I knew I would lose my hair, so I
of the most traumatic side effects of          shaved my head — after I had gotten



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                               a wig and some great hats.               these organisms from becoming prob-
                                           — lung cancer survivor       lems. However, someone with neu-
                                                                        tropenia (reduced white blood cells)
                                                                        c a n ’t effectively fight these org a n i s m s .
                            Hair that is lost as a result of            Thrush is a condition caused by over-
                            chemotherapy treatment almost always        growth of the yeast, Candida, in the
                            grows back, sometimes even during           mouth. It can be a major problem for
                            treatment, although it may not return       people with neutropenia. The yeast
                            until after treatment ends. Your new        begins to grow rapidly, causing a white
                            hair may be a different color and tex-      coating on the tongue and/or gums. It is
                            ture. Hair loss due to radiation treat-     often accompanied by fever and gas-
                            ment may not always grow back.              trointestinal irritation, and may spread
                                                                        to other parts of the body. Eating yogurt
                            For more information about alopecia and     or rinsing the mouth with a dilute vine-
                            wigs, contact the American Hair Loss        gar or hydrogen peroxide solution may
                            Council (214) 561-1107, the National        help to control the growth and spread of
                            Alopecia Areata Foundation (415) 456-       thrush.
                            4644, or the American Cancer Society’s
                            Look Good, Feel Better Program for
                                                                        Mouth ulcers or canker sores can also
                            Women (800) A C S - 2 3 4 5 .
                                                                        be a problem. These are caused by
                                                                        either a bacteria or a virus. If these
                                                                        mouth sores become too severe, tests to
                            Mouth Sores and Other                       find the cause will likely be recom-
                            Oral Problems                               mended. Treatment may include an
                                                                        antibiotic or antiviral medication.
                            Treatments for lung cancer can cause
                            increased problems with the mouth,
                            gums, and teeth. You may experience:            Make sure you see a dentist and take
                            • bleeding                                      care of any potential dental problems
                            • changes in the amount of saliva in            before you begin therapy. Talk with
                                                                            your dentist about necessary, periodic
                               your mouth
                                                                            checkups.
    thrush: a yeast         • changes in the color of your mouth
infection of the oral          and tongue
     (mouth) cavity
                            • difficulty in keeping your teeth
                                                                        Any necessary dental treatment should
                               clean
                                                                        be done before you start treatment to help
                            • difficulty swallowing
                                                                        prevent problems. Maintaining good oral
                            • pain in your mouth from ulcers,
                                                                        and dental health is important even when
                               thrush or other types of oral
                                                                        you are not in active treatment.
                               infections
                            • severe dry mouth
                                                                        If you are having mouth or dental prob-
                            We all harbor bacteria, yeasts, and fungi   lems, talk with your doctor or nurse.
                            on and in our bodies. Under normal          There are thing you can do to help such
                            conditions, our immune systems keep         as:

                    8.16
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•   using glycerin swabs and/or syn-        blood components. However, changes
    thetic saliva sprays, solutions, or     in the doses of radiation received may
    gum to stimulate saliva                 be required.
•   avoiding hot foods
•   drinking lots of water                  Myelosuppression that results from
•   flossing your teeth daily               chemotherapy is considered “dose-lim-
•   staying away from spicy or              iting,” that is, the dosing of the
    acidic foods                            chemotherapy may need to be adjusted.
•   trying a toothpaste that contains       If you experience myelosuppression,
    sodium bicarbonate or simply use        your doctor may choose to reduce the
    baking soda as a tooth powder to        dose of chemotherapy you are receiv-
    reduce the acid in your mouth           ing; increase the time between your
•   trying a water-based lubricant such     treatments; or stop treatment altogether.
    as K-Y jelly on your tongue and         O r, your doctor may recommend the
    on the inside of your mouth             use of a biological response modifiers
•   using a moisturizer such as             (BMRs) that can stimulate the bone
    Vaseline® on your lips                  marrow to produce more of any of the
•   using a soft toothbrush                 three blood components. This allows
•   maintaining a correct set of            the prescribed timing and dosing of the
    dentures                                chemotherapy to be maintained. How
                                            your chemotherapy is adjusted will
                                            depend on how serious the myelosup-
Myelosuppression                            pression is. Myelosuppression usually           myelosuppression:
                                            occurs about 7 to 14 days after treat-          suppression of blood
Myelosuppression can be a very seri-        ment. Your doctor will tell you when            cell production
ous side effect of cancer treatments and    you will need to have blood tests done
can be caused by either radiation or        to monitor your blood counts.
chemotherapy. Myelosuppression, at
its worst, can be life threatening.         The three types of myelosuppression
Myelosuppression is the result of dam-      (anemia, leukopenia, and thrombocy-
age to one or more of the components        topenia are discussed below.
of the blood (red blood cells, white
blood cells, and platelets) that are pro-
duced in the bone marrow, as well as        Anemia
those that are circulating in the blood     Anemia occurs when the number of red
stream. The result is lower counts of       blood cells in the blood are reduced to
both red and white blood cells and of       below normal. As we discussed earlier,
platelets.                                  anemia may be disease related. Anemia
                                            can be caused by chemotherapy. It
Myelosuppression caused by radiation        occurs because the treatment damages
treatment for lung cancer is usually        red blood cells and keeps new red
mild because the bones that are in the      blood cells from developing in the
usual line of the radiation produce         bone marrow. The discussion of ane-
only a small percentage of the body’s       mia under disease-related symptoms

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                                  earlier in this chapter describes symp-            Granulocytes also help to fight infec-
                                  toms and treatments for anemia. If you             tion. Both types of white blood cells are
                                  are anemic, it should be treated, how-             important in the immune response.
                                  ever, in order for you to be able to
                                  maintain a reasonable quality of life. If          Infection may be the most serious side
                                  your hemoglobin is 12 or below, you                effect of chemotherapy. Some types of
                                  will experience significant fatigue that           chemotherapy can lower the number of
                                  will prevent you from carrying out nor-            these infection-fighting white blood
                                  mal activities.                                    cells, which makes the body more
                                                                                     prone to infection.
                                  The standard choice of treatment for
                                  treatment-related anemia is either ery-            Be sure to ask your doctor or nurse
                                  thropoietin (Procrit®, Epogen ®) or                about signs of infection that you should
                                  blood transfusion. Blood or packed red             be aware of. Call your doctor if you
                                  blood cell transfusions create an imme-            develop a fever or any signs of redness
                                  diate benefit by providing the patient             or inflammation, especially near the
                                  with additional red blood cells to carry           injection sites for chemotherapy.
                                  oxygen. However, the lifespan of red
                                  blood cells is short so the benefit disap-
     leukopenia: low
                                  pears within a few days. Erythropoietin               Call your doctor or go to an emer -
                                  is a biological response modifier                     gency room if you begin to run a fever
number of leukocytes                                                                    or show other signs of infection.,
 or WBCs; decreases               (BRM) that stimulates the bone marrow
  a person’s ability to           to produce more red blood cells and has
   fight infection/dis-           been approved by the FDA for cancer
                  ease
                                  treatment-related anemia. While it                 There several options available for
                                  takes longer for the patient to see a              managing leukopenia if, and when, it
  neutrophil: type of
                                  change, the result lasts longer                    occurs. Just as with chemotherapy-
    white blood cell;
 same as granulocyte                                                                 related anemia, chemotherapy can be
                                                                                     postponed for a period of time or the
  neutropenia: low                    If you are anemic, it should be treated,       dosage can be reduced.
      number of neu-                  however, in order for you to be able to
     trophils or white                maintain a reasonable quality of life.
     blood cells; may
increase risk of infec-                                                                 Colony-stimulating factors can
                   tion                                                                 reverse neutropenia or granulocy -
                                  Leukopenia                                            topenia much faster than the body can
granulocyte: type of              Leukopenia is the reduction of the num-               by itself.
 blood cell that fights           ber of white cells in the blood.
    bacterial infection
                                  Neutrophils are a type of white blood
   granulocytopenia:              cell that are very important in the body’s         A colony-stimulating factor, also called
 low number of gran-              e fforts to fight infection. A reduction in        G-CSF (Neupogen ®), can reverse neu-
 ulocytes, which may              neutrophils to below normal is called              tropenia or granulocytopenia much
  reduce the ability of           neutropenia. Granulocytopenia occurs               faster than the body can by itself. G-
   the immune system
                                  when there is a reduction in granulo -             CSF is part of a new group of agents
      to fight infection
                                  cytes, another type of white blood cell.           called biological response modifiers


                           8.18
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(BRMs). While these growth factors         If you experience any symptoms of
don’t directly affect tumor cells, they    infection, contact your doctor immedi-
increase white blood cell production at    ately. Symptoms of infection include:
a faster rate. The increase in numbers     • fever greater than 100º F
of white cells helps the immune system     • chills, sweats
to prevent or manage infection and         • cough or sore throat
enhance the antitumor activity of          • redness or swelling around skin
chemotherapy. G-CSF may be pre-                sores
scribed so that the scheduled treatment    • loose bowels or diarrhea
plan can be maintained.                    • burning sensation during urination
                                           • unusual vaginal discharge or
As stated above, myelosuppression is           itching
the reduction in the counts for all red    • just not feeling “right”
and white blood cells and platelets.
The use of a BRM, such as G-CSF, to        Thrombocytopenia
stimulate white blood cell production,     Thrombocytopenia is the reduction in               thrombocytopenia:
may reduce the number of red blood         the number of platelets in the blood.              low number ofthrom-
cells or platelets produced by the bone    Platelets enable the blood to clot.                bocytes (platelets) in
                                           Certain treatments can cause a reduc-              the blood
marrow. It is, therefore, best to use G-
CSF in combination with other BRMs         tion in platelet count. If you experi-
to stimulate the bone marrow to pro-       ence thrombocytopenia and your
duce both red and white blood cells.       platelet counts go down, you may be
                                           given transfusions of platelets.
                                           Oprelvekin (Neumega®) is a growth
If your white blood cell counts are
                                           factor similar to G-CSF and erythro-
lower than normal because of treat-
                                           poietin, and is available to treat throm-
ment, there are things that you should
                                           bocytopenia.
do to support your immune system and
help prevent infection:
• avoid crowds and people with the         Nausea and Vomiting
    flu or colds during the time your
    white counts are at their lowest       It is a common belief that chemothera-
    point; ask your doctor or nurse        py means automatically feeling nau-
    when this is most likely to occur      seous and being sick. In fact, not all
    based on your treatment                chemotherapy drugs cause nausea and
• wash your hands frequently, espe-        vomiting and there are effective drugs
    cially before eating                   you can take to prevent these side
• eat cooked foods, and peel fruits        effects.
    and vegetables
• use the hottest water cycle in your
    dishwasher                                 Because it is much easier to pre v e n t
• use only your own bath towels,               nausea and vomiting than it is to get
    don’t share towels, drinking glass-        it under control once it starts, you
    es, etc. with others                       should seriously consider taking



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                   antinausea medication even if you                Anyone who is being treated with these
                   have not felt sick from the                      or any other products that cause
                   chemotherapy.
                                                                    delayed nausea should be placed on a
                                                                    regimen of antinausea treatment for 3
                                                                    days beginning the day chemotherapy
               There are a number of medications on
                                                                    is administered. As stated earlier, it is
               the market today that can effectively
                                                                    much easier to prevent nausea than it is
               treat nausea. Your doctor can usually pre-
               scribe one or a combination of these med-            to control it.
               ications, depending on the c h e m o t h e r a p y
               you are receiving. Drugs such as                     Other things you can do to help prevent
               prochlorperazine (Compazine®) and                    feeling sick include:
               metoclopramide (Reglan®) are com-                    • maintaining a liquid diet for 12
               monly used to control mild nausea.                       hours before you receive
               Drugs such as dolasetron (Anzemet®),                     chemotherapy
               granisetron (Kytril®) and ondansetron                • keeping your house full of fresh
               (Zofran®) are used to control more                       air, with no strong cooking odors
               severe nausea.                                       • eating small quantities of foods at
                                                                        room temperature
                                                                    • eating slowly
                   Nausea and vomiting due to tre a t -
                   ment for lung cancer can be well                 Most importantly, keep your healthcare
                   c o n t rolled. Talk with your doctor or         provider informed of your nausea and
                   oncology nurse about these symp -
                   toms and get medications to help
                                                                    vomiting and take advantage of options
                   c o n t rol them.                                for relief.


               Because it is much easier to prevent                 Numbness (Peripheral
               nausea and vomiting than it is to get it             Neuropathy)
               under control once it starts, you should
               seriously consider taking antinausea                 Chemotherapy can affect the nervous
               medication even if you have not felt                 system, causing tingling and/or numb-
               sick from the chemotherapy. If you are               ness in the hands, feet, or both. This is
               taking antinausea medication and are                 called peripheral neuropathy. Peripheral
               still experiencing nausea, tell your doc-            neuropathy can cause clumsiness with
               tor or nurse. They can usually pre-                  feet and hands. This may make it diff i-
               scribe another type of drug that may                 cult to pick your feet up or to walk in a
               work better for you.                                 normal way. Buttoning clothes or open-
                                                                    ing jars may present problems.
               While many chemotherapy drugs cause
               nausea the day chemotherapy is admin-                If you experience numbness in your
               istered, others such as the platinum-                hands and/or feet take extra care to pre-
               based drugs (carboplatinum and cis-                  vent injuries. Also, exercise your aff e c t-
               platinum) cause a delayed response.                  ed limb(s) a few times a day by alter-


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nately flexing and stretching the mus-        you, or your family members, will be
cles for a few minutes. Most important-       forced to appeal to your insurance
l y, be sure to inform your doctor imme-      provider for coverage. Alternatively,
diately if you experience this symptom.       you may decide to pay for this support-
If the symptom is severe, the drug caus-      ive care yourself.
ing it may be discontinued.
                                              New options for treating the side
                                              effects of cancer and cancer therapy are
   Be sure to inform your doctor imme -
   diately if you experience numbness in      emerging every day. Our hope is that
   your hands or feet. If the symptom is      you can benefit from these advances
   severe, the drug causing it may be dis -   and enjoy your life as symptom-free as
   continued.                                 possible.


Peripheral neuropathy usually disap-
pears after chemotherapy is discontin-
ued or the chemotherapy is changed.
Sometimes, however, it does not go
away. If this happens, your doctor may
recommend that you work with a phys-
ical therapist.


SUMMARY

As you can see, there are many symp-
toms and side effects associated with
living with lung cancer. We want to
emphasize that supportive care for
these and other symptoms can have a
very positive impact on your quality of
life while living with lung cancer.
Treatment options are available. Ask
for help in controlling your symptoms
and side effects as soon as they appear.

Unfortunately, in today’s healthcare
environment, you may find that the
decision to provide supportive care is
based on cost. Although some insur-
ance companies do cover good sup-
portive care, many consider these ser-
vices to be “extras.” You may find that


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                                     Complementary and
                            Alternative Medicine (CAM)
                                              Table of Contents                                 9
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.1
The Basic Philosophy Behind the CAM Approach . . . . . . . . . . . . . . . . . . . . . 9.2
    The Mind/Body Connection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.4
       Visual/Guided Imagery . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.4
       Prayer and Intentionality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.4
       Meditation and Self-Hypnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.4
       Biofeedback . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.4
       Support Groups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.5
    Nutrition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.5
       Vitamins and Minerals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.6
            Antioxidants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.7
       Other Important Nutrients . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.8
       Special Diets . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.9
       Soybeans and Soybean Products . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.9
    Herbs and Botanicals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.10
    Traditional Chinese Medicine . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.11
       Chinese Herbs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.11
       Acupuncture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.11
    Metabolic Therapies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.11
    Immune System Enhancement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.12
    Other Biopharmaceutical Therapies . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.12
       Oxygen Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.12
       714X Therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.13
    Biomagnetics (Magnetic Field Therapy) . . . . . . . . . . . . . . . . . . . . . . . . . 9.13
Complementary and Alternative Therapies — Things to Consider . . . . . . . . 9.13
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9.14
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                      Complementary and
             Alternative Medicine (CAM)                                  9
INTRODUCTION                                tive” when it is used instead of conven-
                                            tional treatment. However, both terms
                                            are often used interchangeably. Most

M
          ore and more people diag-
          nosed with cancer and other       people with lung cancer who use some
          diseases are exploring com-       form of a complementary medicine use
plementary and alternative medicine         it in combination with their conven-
(CAM) such as herbal therapy, medita-       tional treatments. Nevertheless, some
tion, visualization, and acupuncture.       people have chosen to use alternative
Every day, interest in these approaches     methods alone, or after conventional
continues to grow, especially as more       treatments have failed.
well-designed studies are carried out to
determine their effectiveness.
                                                Talk with your doctor before begin -
                                                ning any complementary or alterna -
   Those living with lung cancer, and           tive therapy. Your doctor can give you
   their families, deserve accurate             the best care only if he or she has
   information and sound clinical               complete information about the thera -
   advice on complementary and alter -          pies you choose to take.
   native therapies.

                                            Before starting any complementary or
ALCASE takes no position on the valid-      alternative therapy, discuss it with your
ity or effectiveness of these treatments.   healthcare provider. Sometimes com-
They are presented here because we are      plementary and alternative therapies
frequently asked about them. What fol-      can affect how your conventional treat-
lows is a brief review of many of the       ments used by professionals trained in
issues that are currently being explored    Western medicine are given or how
by the medical community.                   they work. For example, certain drugs,
                                            foods, and vitamins may increase the
Complementary and alternative medi-         side effects of more conventional med-
cine includes a broad range of healing      ical therapy or even decrease its effec-
philosophies, approaches, and thera-        tiveness. Only if your primary health-
pies. A therapy is generally called         care provider has complete information
“complementary” when it is used in          about all of the therapies you choose to
addition to rather than in place of con-    take, will he or she be able to give you
ventional treatment. This is called an      the best care possible.
“integrative approach” to treatment. A
therapy is sometimes called “alterna-       Most complementary and alternative

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              therapies have never been studied in             mentary or alternative therapy.
              well-controlled medical settings.
              Reports about their effectiveness are            ALCASE does not endorse any therapy
              anecdotal only, that is, someone told            described below.
              someone else that the treatment was
              helpful. Because these therapies have
              not been approved by the FDA for                 THE BASIC PHILOSOPHY
              treatment of lung cancer, they are not
              usually covered by insurance.
                                                               BEHIND THE CAM
                                                               APPROACH

                 NIH’s Office of Alternative Medicine          Advocates for complementary and
                 (OAM) supports fair, scientific evalu -       alternative medicine generally view
                 ation of alternative and complemen -          cancer as a reflection of the overall
                 tary therapies. OAM can be reached
                                                               health of the body. That is, the underly-
                 by phone at 888-644-6226 or through
                 the Internet at their Web page                ing reason for developing cancer is an
                 address: http://altmed.od.nih.gov/            unhealthy body with an immune sys-
                                                               tem that’s unable to stop the growth of
                                                               the cancer. Therefore, the primary goal
              Fortunately, more research is underway           of many of these therapies is to restore
              on complementary and alternative ther-           or boost the immune system.
              apies. In 1992, Congress established
              the Office of Alternative Medicine               The most commonly used and accepted
              (OAM) within the Office of the                   practice, one that is encouraged by
              Director, National Institutes of Health          conventional or western-trained health
              (NIH). The OAM supports the fair,                professionals as well as CAM profes-
              scientific evaluation of alternative and         sionals, is fostering and maintaining a
              complementary therapies that could               positive attitude. The old adage of the
              improve people’s health and well-                “power of positive thinking” appears to
              being. The OAM is a helpful resource             be especially true for those living with
              for anyone considering complementary             cancer. The ability to maintain a posi-
              and alternative therapies. The OAM               tive attitude is derived from many
              Clearinghouse phone number is 888-               sources, such as: support from family,
              644-6226 and the Web site address is             friends, and coworkers; participation in
              http://altmed.od.nih.gov/.                       a support group; spiritual or religious
                                                               practices; and meditation, among many
              The purpose of this chapter is to help           others. Studies have shown our mental
              you to be the best-informed lung can-            state has an effect on our immune sys-
              cer survivor possible. If you are inter-         tem. Regardless of other alternative or
              ested in complementary and/or alterna-           complementary approaches you may
              tive therapies, we encourage you to              consider, we encourage you to main-
              seek further information, but be sure to         tain a positive attitude.
              talk with your healthcare provider
              before you begin using any comple-               There are conflicting opinions about

        9.2
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the use of immune enhancers during             Many of these therapies strive to bol-
active treatment. On one side, it is           ster self-healing capabilities, while
thought that enhancing the ability of          reducing or avoiding the toxic side
the immune system to fight disease             effects that can accompany many con-
helps the body fight the cancer and pro-       ventional treatments. The first step into
tects the other systems in the body. On        these therapies may involve a change
the other side is the idea that boosting       in diet, exercise, and attitude. These
the immune system during therapy can           strategies are thought to rejuvenate the
actually lessen the effect that conven-        whole person. They may also offer an
tional treatment has on cancer cells.          improved quality of life and a sense of
Until controlled randomized clinical           control.
trials are conducted, we won’t know
the answer.
                                                   Your oncology nurse may be a good
Many complementary and/or alterna-                 source of information on complemen -
tive cancer treatments are based on                tary therapies.
nutrition and diet, “detoxification” of
the body, emotional well-being, and
enhanced energy. They include a wide           If you are interested in pursuing any of
range of options depending on an indi-         the topics discussed below, check your
vidual’s needs.                                local library, bookstore, or log onto the
                                               Internet for more information. Your
All of the therapies are based on a com-       oncology nurse may be a good source of
mon philosophy that includes the fol-          information on complementary approach-
lowing elements:                               es. You may also want to talk to health
• a focus on empowering the individ-           professionals in your community who
    ual to accept responsibility for at        o ffer such treatments. These might
    least part of his or her recovery and      include a naturopathic or homeopathic
    health maintenance in the future           physician, professionals in oriental
• an emphasis on the importance of             (Eastern) medicine or acupuncture, mas-
    nutrition as an essential require-         sage or physical therapies, nutritionists or
    ment for good health                       others licensed by your state to practice
• a prerequisite of a balanced                 their form of medicine. Relatively few of
    lifestyle including proper exercise,       the treatments mentioned have been stud-
    nutrition, sleep, relaxation, and          ied in clinical trials, so there is no solid
    emotional tranquillity to achieve          evidence that they are effective. In those
    optimum health                             cases in which clinical trials have been
• an attempt to ensure the eff i c i e n c y   done or are underway, we have noted this
    of the body’s organs and organ sys-        fact. Remember to discuss any treatment
    tems through whole-body approaches         decisions with your regular physician(s).
    to healing
• a commitment to treat the whole p e r-
    son rather than just the symptoms


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              The Mind/Body Connection                    draw the personal changes they have
                                                          felt since their diagnosis. Others have
              Many health professionals now believe       drawn something that represents the
              that treating an individual’s mental and    losses they have felt since their diagno-
              emotional health is as important as         sis, or the new joys they have found.
              treating the cancer. Studies of biofeed-    Both art and music can be powerful
              back, meditation, yoga, guided              stimuli to uncovering negative feelings.
              imagery, hypnosis and other relaxation
              techniques all suggest that the mind        Prayer and Intentionality
              can enhance and bolster the immune          Studies have shown the power of
              system as it works to control the can-      prayer, or intentionality, to be helpful.
              cer. The primary components of the          Well-controlled investigations show
              immune system include the spleen,           that when others think positive
              thymus, and bone marrow in which the        thoughts toward and about individuals
              white blood cells are produced for cir-     who are ill, a shift towards healing can
              culation in the bloodstream to carry out    be detected in the ill people. Working
              their immune functions. Specific white      with support groups, religious organi-
              cells such as “killer” cells work to con-   zations, family and friends can produce
              trol cancer, as well as infection, in the   benefit from the power of prayer or
              body.                                       intentionality.

              Visual/Guided Imagery                       Meditation and Self-Hypnosis
              Relaxation and guided imagery have          Many doctors are now recommending
              been shown to help many people with         meditation or self-hypnosis techniques
              lung cancer find relief from pain, nau-     for their patients to help them deal with
              sea, depression, and stress associated      some of the more uncomfortable
              with disease. Relaxation encourages a       aspects of lung cancer and its treat-
              state of relaxed awareness. By selec-       ments. These techniques can help to
              tively and sequentially relaxing one        control pain and ease some of the stress
              body part at a time, it is possible to      associated with cancer. They have been
              attain a calm state of being. This is       proven to slow the uptake of oxygen
              helpful, even if it is only possible to     and increase the production of alpha
              maintain this relaxed state for a short     waves, which brings about a feeling of
              period of time. Many people find            well-being and peacefulness.
              audiotapes with verbal suggestions and
              music very helpful.
                                                             “I feel that meditation and visualiza -
                                                             tion helped me get through chemo and
              Music and art therapy can also be used         radiation therapy. They kept me
              as conduits for guided imagery. Many           grounded and centered.”
              audiotapes and videotapes and CDs are                        — lung cancer survivor
              available. Some prefer “live” music.
              Using art as a guide, some people visu-
              alize and then draw their cancers being     Biofeedback
              attacked by their immune systems or         Biofeedback is designed to develop a

        9.4
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person’s ability to control involuntary     ments by helping to strengthen your
functions like heart rate, blood pressure   immune system.
and skin temperature, or to relax cer-
tain muscles. Some people use biofeed-      There is no one diet that will fit all peo-
back to help control symptoms, espe-        ple. As a starting point, you will proba-
cially pain and nausea.                     bly want to follow a low-fat, high-fiber
                                            diet, with plenty of grains, legumes and
Support Groups                              fresh fruits and vegetables. The recent
Joining a support group for people with     guidelines established by the National
cancer or specifically for those with       Cancer Institute show a food pyramid
lung cancer may be especially helpful.      that emphasizes five food groups. At
Clinical studies including people with      the base of the pyramid are whole
other types of cancer have shown that       grains and breads, followed by fruits
participation in a support group not        and vegetables, milk products, protein
only enhances quality of life but may       — preferably from soy protein, lean
also increase the quantity of life.         meat, poultry or fish, plus a limited
People who have the benefit of a sup-       amount of fat. The best fat comes from
port group tend to live longer than         vegetable rather than animal fats. Olive
those without good psychosocial sup-        oil is especially good.
port. If there is not a support group for
you in your community, you might            Water, of course, is an essential com-
consider starting one. To find out about    ponent of any nutritional plan. It is
support groups call your local hospi-       important to drink at least 8 eight-
tal(s), ALCASE (800-298-2436), or the       ounce glasses each day. This is espe-
American Cancer Society. Or you can         cially true for people living with can-
get the name of a “Phone Buddy” from        cer, particularly during treatment when
ALCASE.                                     there may be significant amounts of
                                            waste products from dying tumors and
                                            other cells that need to be flushed out
   “My support group has been so            of the body through the urine. In addi-
   i m p o rtant. It has given me new       tion, drinking lots of water helps to
   strength and fresh hope.”
                                            flush the drugs out of the kidneys and
                  — lung cancer survivor
                                            bladder, helping to prevent long-term
                                            damage to these organs. Tap water can
                                            contain many impurities and microor-
                                            ganisms. Chlorine is routinely used in
Nutrition                                   the United States to disinfect the water
                                            supply. Chlorine is a known carcino-
Diet and nutrition constitute a front-      gen. Filters can remove many of the
line approach in complementary thera-       contaminants from tap water. Distilling
pies. Research shows that nutrients can     water removes even more. Or, you may
directly affect tumor growth and            choose to drink bottled water.
metastases. A good nutritional plan can
complement conventional cancer treat-

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                                                     NCI Food Pyramid

                                                                   make the decisions about what is
                  However you choose the foods you                 appropriate for you.
                  eat, be sure to talk to a licensed nutri -
                  tionist or your doctor to be sure you
                                                                   Vitamins and Minerals
                  are getting all the calories, vitamins,
                  and minerals you need.                           Research has shown that diet alone is
                                                                   usually not sufficient to supply the
                                                                   nutrients you need for your overall
              Many people make the decision after a                health. This may be due to lack of
              cancer diagnosis to modify their nutri-              appetite; loss of nutrients in cooking;
              tional intake. Some people choose to                 lack of knowledge, motivation, or
              eat only organic foods, others stop eat-             energy to prepare balanced meals; and
              ing any animal products, while others                depletion of key nutrients caused by
              follow a specific diet. There is concern             stress and certain medications.
              by some that a totally vegetarian diet               Nutritional supplements may play a
              may not provide sufficient calories for              vital role in filling the nutrient gap.
              people, especially those living with
              late-stage disease.                                  Before starting any supplementation,
                                                                   h o w e v e r, check with your doctor
              However you choose the foods you eat,                and/or a specialist in nutrition. High
              be sure to talk to a licensed nutritionist           doses of certain vitamins and minerals
              or your doctor to be sure you are get-               can be extremely toxic, react adversely
              ting all the calories, vitamins, and min-            with conventional treatment drugs, and
              erals you need. You, in collaboration                throw your body’s metabolism danger-
              with your healthcare providers, must                 ously out of balance. Your specific

        9.6
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needs will dictate which nutrients and      carotene can enhance the activity of
combinations of nutrients and in what       natural killer cells and other immune
doses will help you the most.               cells against tumors. Carrots, sweet
                                            potatoes, spinach, and most leafy green
Antioxidants. Vitamins and minerals         vegetables are rich in beta carotene.
help regulate the conversion of food to
energy. A by-product of this process,       It should be noted, however, that beta
called metabolism, are unstable mole-       carotene is controversial because it
cules called free radicals. Free radicals   may carry health risks for people with
steal electrons from other molecules        lung cancer. In 1996, three widely pub-
(called oxidation), and then begin to       licized studies reported on the results
damage and break down healthy cells.        of using beta carotene as a cancer-pre-
Free radicals are normal products of        vention agent in high risk groups. In
metabolism, but uncontrolled produc-        the two studies that involved smokers,
tion of them encourages cell damage         researchers reported that beta carotene
and gene mutation. Free radicals            supplementation led to slightly
appear to play a significant role in the    increased lung cancer deaths, and an
development of many degenerative            increase in the rate of new cancers. In
diseases, including cancer, heart dis-      the third study, involving low-risk indi-
ease, and aging.                            viduals, beta carotene appeared to have
                                            no effect on either the incidence of dis-
An antioxidant is a natural biochemical     ease or rate of death.
substance that protects living cells
against damage from free radicals, and      Vitamin B complex is a group of vita-
can help your body fight cancer.            mins that includes B 1, B 2, B3, B6, folic
Antioxidants are reported to be most        acid, and pantothenic acid. Deficiencies
effective when they’re taken in various     of any one or more of the B vitamins
combinations, rather than when used         can inhibit the immune system’s ability
individually.                               to fight cancer. People with cancer are
                                            frequently deficient in folic acid. B
Some believe that antioxidants should       complex vitamins reinforce the eff e c t s
not be taken while undergoing treat-        of B vitamins taken individually.
ment because they may protect tumor
cells from the effects of therapy. Talk     Vitamin B 3 (niacin) may increase the
to your doctor before adding antioxi-       effectiveness of cancer treatments. In
dants to your diet. Antioxidants            mice, it has shown to increase the abil-
include:                                    ity of radiation to kill tumor cells.
                                            Some believe it protects against the
Beta carotene is a plant pigment found      toxic effects of chemotherapy. Vitamin
in many fruits and vegetables. Beta         B3 is found in brewers yeast, fish,
carotene is converted to vitamin A in       asparagus, and whole grains.
concert with the body’s own needs for
the vitamin. As a key antioxidant, beta     Vitamin B 6 plays an important role in


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              maintaining the immune system and           boost the effectiveness of chemothera-
              the nervous system. It also helps main-     py, and to help protect against the toxic
              tain the health of the mucous mem-          effects of radiation therapy. Vitamin E
              branes, which line the respiratory tract.   is found in dark green vegetables, eggs,
              Vitamin B 6 is found in bananas, leafy      wheat germ, liver, unrefined vegetable
              green vegetables, carrots, apples, organ    oils, and some herbs.
              meats and sweet potatoes.
                                                          Selenium is an essential trace mineral
              Vitamin C helps maintain a healthy          that is often deficient in people with
              immune system. Certain natural killer       cancer. It is said to have numerous anti-
              cells, which are heavily involved in        cancer effects including enhancing the
              fighting cancer, appear to be active        immune system. Selenium appears to
              only if they contain a certain amount of    work synergistically with vitamin E,
              vitamin C. Some believe that vitamin        that is, the effects of one nutrient great-
              C enhances the anticancer activity of       ly enhance the effects of the other. It is
              some chemotherapy drugs, including          found naturally in fruits and vegeta-
              adriamycin. It may also enhance the         bles. Selenium has been studied in the
              e ffects of radiation treatment while       clinical trial setting and has been
              protecting healthy tissues like skin and    shown to be an effective cancer-pre-
              bone marrow. Vitamin C is found in          ventive agent. Currently, studies are
              citrus fruits, broccoli, green peppers,     underway in people with lung cancer
              and many other fruits and vegetables.       who were diagnosed with early stage
                                                          disease, treated with surgery and/or
              Vitamin D may inhibit cancer cell           other therapies, and thought to be can-
              growth and enhance the immune sys-          cer free. The goal of these studies is to
              tem. Some preliminary research indi-        determine whether or not selenium will
              cates it may increase the number of vit-    slow recurrence of lung cancer.
              amin A receptors on cells, inhibit the      Contact the National Cancer Institute
              formation of new tumor blood vessels,       (1-800-4-CANCER) for the most up-
              and induce “cell suicide” in cancer         to-date information and recommenda-
              cells. However, vitamin D should gen-       tions for the use of selenium.
              erally be reserved for people with low
              vitamin D levels, under careful moni-       Bioflavonoids help in blood vessel
              toring. Vitamin D is found in milk,         repair and help prevent bruising. The
              tuna, sardines, and cod liver oil. One of   better known bioflavonoids include cit-
              the best ways to get vitamin D is expo-     rin, hesperidin, rutin, quercetin, and
              sure to the sun; sun exposure causes the    pycnogenol. Many bioflavonoids rein-
              body to naturally produce vitamin D.        force the cancer fighting activities of
                                                          vitamin C.
              Vitamin E is thought by some to pro-
              tect cell membranes and help the            Other I m p o rtant Nutrients
              immune system fight cancer and infec-       Essential fatty acids are unsaturated
              tion. Vitamin E is also believed to         fats that are required in the diet. These


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are nutrients that cannot be manufac-       food philosophy roughly based on
tured by the body. They include linole-     Chinese medicine. It emphasizes bal-
ic acid (an omega-6 oil) found in corn      ancing the energy qualities of fresh,
and beans, and alpha linolenic acid (an     whole foods to maximize their delivery
omega-3 oil), found in fish, flaxseeds,     of qi or chi (pronounced “chee”), the
and walnuts.                                vital life force that flows in the body.
                                            The staples of the diet are cooked
Zinc is a metal that is essential to        whole grains, such as brown rice,
growth and development, and for             beans, soybean products, vegetables,
wound healing. It is also essential for a   fruits, nuts, seeds, small amounts of
properly functioning immune system,         saltwater fish, seaweeds, and shitake
and a deficiency appears to make            mushrooms. As stated before, there is
humans more vulnerable to cancer. It is     concern that a totally vegetarian diet
found in whole grains, most seafoods,       may not be appropriate for people with
sunflower seeds, soybeans and onions.       cancer, especially those with late-stage
                                            disease. If you are contemplating a
Calcium is a mineral that is vital for      macrobiotic diet or any other special
the formation of bones and teeth as         diet, be sure to talk with your doctor
well as for blood clotting and cell         first.
metabolism. People living with lung
cancer may need to take a calcium sup-      Soybeans and Soybean Products
plement, particularly if they are suffer-   Soybeans and soy products are
ing from bone metastases that are caus-     believed to be especially beneficial in
ing bone-calcium loss. Calcium is           fighting cancer. They contain high con-
found in dark green vegetables, most        centrations of an enzyme called genis-
nuts and seeds, milk products, sardines,    tein, which is believed to slow down
and salmon.                                 the growth of the cancer. Soy products
                                            such as tofu and soy milk are also
Magnesium protects against cancer in        excellent sources of protein.
general and is necessary to maintain
the pH balance of blood and tissue. It      Haelin 851 is a special liquid soybean
also assists in the body’s uptake of cal-   concentrate heavy in zinc; selenium;
cium and potassium. Magnesium is            vitamins A, B, B2, B12, C, D, E, and K;
found in most nuts, fish, green vegeta-     and a variety of amino acids. Chinese
bles, whole grains, and brown rice.         researchers conducted a clinical study
                                            of haelin 851 in combination with other
Special Diets                               treatments on 239 people who had been
There are many “special” cancer diets       diagnosed with various cancers,
and proponents of each. One of the          including cancer of the lung, stomach,
most commonly adopted is the macro-         esophagus, intestines, and lymphatic
biotic diet although it was not original-   system. The researchers reported that
ly developed as a “cancer” diet.            haelin 851 greatly improved the
Macrobiotics is a specialized diet and      patients’physical functioning and qual-


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               ity of life, helped restore vital energy    The formula was originally obtained
               deficiencies, strengthened the immune       from a Native American tribe in
               system, and improved appetite.              Canada. Studies of some of the main
                                                           components of essiac tea, which
                                                           include burdock, Indian rhubarb, sheep
               Herbs and Botanicals                        sorrel, and slippery elm, have shown
                                                           that each demonstrated a significant
               Herbal medicine is the use of plants to     amount of anticancer activity. Essiac
               treat an illness or to restore health.      tea is believed to strengthen the
               Herbs are a major part of Chinese           immune system, reduce the toxic side
               (Eastern) medicine. An herb can be the      effects of many drugs, increase energy
               whole plant, or any part of it such as      levels and reduce inflammation. It may
               the leaves, stem, flower, or root. The      also contribute to feelings of well-
               following are some of the more com-         being, which can improve the patient’s
               mon herbs used.                             quality of life.

                                                           Garlic is used to help the immune sys-
               Astragalus is frequently prescribed in
                                                           tem ward off colds and as a cancer
               Eastern medicine. It appears to reduce
                                                           inhibitor. Animal studies have shown
               the toxic effects of conventional cancer
                                                           that aged garlic extract appears to stop
               treatments and stimulate the immune
                                                           the growth of cancers of the breast,
               system. It also appears to protect the
                                                           bladder, skin and colon and the initial
               liver against the harmful effects of
                                                           development of tumors of the lungs,
               chemotherapy. Physicians trained in
                                                           esophagus, and stomach.
               Eastern medicine frequently combine
               astragalus with another herb called         Green tea contains a substance that is
               ligustrum.                                  said to inhibit the growth of cancers
                                                           and lower cholesterol. This substance
               Cat’s claw is a rain forest herb tradi-
                                                           is one of a number of chemical com-
               tionally used to fight cancer, arthritis,
                                                           pounds known as “polyphenolic cate-
               and other diseases. Recent studies sug-
                                                           cheins,” which are many times stronger
               gest that the plant has antioxidant com-
                                                           than vitamin E in defending the body
               pounds, and helps enhance the immune
                                                           against free radicals. The catecheins
               and digestive systems.
                                                           found in green tea apparently help sup-
               Echinacea is a herb commonly used as        port the immune system, and have
               an immune enhancer. It is believed to       demonstrated powerful anticancer
               provide protection against infection, a     properties. In one animal study, green
               common and dangerous complication           tea was found to inhibit lung cancer in
               in advanced-stage cancer.                   rats. A clinical trial is currently under-
                                                           way in humans. Contact the National
               Essiac was introduced as a nontoxic         Cancer Institute for the most up-to-date
               herbal tea in the 1920’s by a Canadian      information and recommendations.
               nurse named Rene Caisse (The name
               essiac is Caisse spelled backwards).


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Traditional Chinese Medicine               Acupuncture meridians are specific
                                           pathways in the body for the flow of
Traditional Chinese Medicine (TCM)         life force or energy known as qi or chi.
has been practiced in Asia for thou-       In most cases, these energy pathways
sands of years. TCM combines the use       run up and down both sides of the
of complex herbal formulas with            b o d y, and correspond to individual
acupuncture, nutrition, massage, and       organs or organ systems, including the
therapeutic exercise to regenerate the     lungs, small intestine, and heart. It is
body’s organ functions. It is believed     believed that any disturbance of these
that health is restored by bringing the    energy channels can cause the organ to
bodily functions into balance, and acti-   dysfunction, and the immune system to
vating and increasing the body’s natur-    weaken.
al immune system.
                                           The acupuncturist “reads” the patient’s
Research has shown than TCM can            pulse at the wrist and determines which
e ffectively complement conventional       e n e rgy pathways are out of balance. He
medicine when the two are used             or she then places acupuncture needles
together. TCM may have the ability to      at selected points on the body to correct
reduce or minimize the side effects of     the imbalance. For the person with lung
chemotherapy and radiation treat-          c a n c e r, acupuncture can be used to
ments.                                     improve energy levels and strengthen
                                           the immune system to create a sense of
Chinese Herbs                              well-being. It is also used to treat the
More than 5,000 Chinese herbs have         side effects of radiation and chemother-
been categorized and classified accord-    a p y, and to reduce pain.
ing to the various properties they con-
tain. The formulas are specific and
complex combinations of herbs, most        Metabolic Therapies
of them developed over a thousand
years ago. Some studies have shown         Metabolism is defined as the sum total
that survival rates are improved for       of all the biochemical processes going
people with lung, breast, throat and       on inside the body. There are two kinds
nasopharyngeal cancers who used            or phases of metabolism: anabolism is
Chinese herbs in combination with          the constructive, building-up phase dur-
chemotherapy or radiation, compared        ing which energy is stored and org a n i c
with conventional treatment alone.         substances such as enzymes and hor-
                                           mones are produced. Catabolism is the
Acupuncture                                destructive phase during which sub-
Acupuncture is a 2,000-year- o l d         stances are broken down and energy is
Chinese technique used to relieve pain,    used.
and treat or cure disease by inserting
fine needles into designated points on     The goal of metabolic therapies is to
the body known as meridians.               rebuild, revitalize, and balance all these


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               life-sustaining functions so normal        alone and in combination with
               cells can thrive and cancer cells will     chemotherapy and radiation, and has
               die. This is accomplished by:              shown some promise in a variety of
               • detoxifying body tissues to help         cancers. A multicenter clinical study of
                   free up the immune system              TVZ-7 is currently being carried out in
               • stimulating organs and glands with       the United States. Call the National
                   nutrition to rebuild tissues           Cancer Institute (1-800-4-CANCER)
               • supplying the body with needed           for more information.
                   chemicals that the body is not ade-
                   quately producing on its own
                                                          Other Biopharmaceutical
               Metabolic therapy can consist of dietary   Therapies
               changes, nutritional supplements, regu-
               lar exercise, therapeutic massage, and     There are many new anticancer sub-
               other supportive therapies.                stances being developed and used. It is
                                                          important to remember that some of
                                                          them have never been studied in a con-
               Immune System Enhancement                  trolled clinical setting, and in most
                                                          cases there is no long-term conclusive
               It is believed that the body’s own         data or evidence to support their effec-
               immune system can be enlisted to help      tiveness.
               fight cancer. Specialized white blood      Oxygen Therapy
               cells known as T lymphocytes, or T         The underlying rationale of oxygen
               cells, natural killer cells, and           therapy is that cancer cells grow best in
               macrophages seek out and destroy can-      the absence of oxygen. It is thought that
               cer cells. Some lymphocytes also pro-      oxygenation with ozone or hydrogen
               duce various anticancer chemicals          peroxide (H2O2) enriches the oxygen
               known as cytokines, which include          content of the blood or tissues, which
               interleukin and interferon. One theory     kills the cancerous tumor with too
               is that cancer emerges when the            much oxygen. The new oxygen-rich
               immune system breaks down and can’t        conditions are said to favor immune
               remove the abnormal cells fast enough.     cell activity instead. Some people
               Immunotherapy is designed to support,      report a heightened sense of well-being,
               enhance or restore the body’s optimal      including increased mental clarity and
               immune function. There are many vari-      e n e rgy levels. This may be because
               ations of immunotherapy, including         pure oxygen is saturating all the body
               immune stimulating vaccines. One           cells and tissues, including those of the
               such therapy, called TVZ-7 lympho-         brain. Ozone is also believed to stimu-
               cyte treatment, involves extracting a      late the activity of cytokines, which are
               mixture of cytokines and other             natural cancer-killing proteins.
               immune-activating chemicals, cultur-
               ing them, and intravenously adminis-       No controlled clinical trials that would
               tering them back into the patient over a   support the effectiveness of oxygen
               two-week period. TVZ-7 has been used       therapy have been published.
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714X Therapy                                Currently, magnets and electromagnet-
714X, also called Immunostim, is a          ic therapy devices are used to relieve
substance composed of nitrogen-rich         pain, help mend broken bones, allevi-
camphor and organic salts. The              ate stress, help with sleeping problems,
premise of 714X therapy is that cancer      and reduce the side effects of
cells need a large quantity of nitrogen,    chemotherapy. It is suggested that,
which they derive by attacking healthy      when cancer is subjected to a negative
cells in the body. Proponents of this       magnetic field, it may start to reverse.
therapy say that in order for the cancer    The theory is that magnetic fields can
cells to get nitrogen from healthy cells,   stimulate metabolism, increase the
they release a toxic compound that          amount of oxygen going to cells, and
inhibits the body’s immune system.          reduce acidity that causes an environ-
When 714X is injected into the patient,     ment unfavorable to cancer.
cancer cells are reportedly attracted to
it because of its nitrogen-rich charac-     No results for controlled clinical stud-
teristics. Presumably, the cancer cells     ies in people with cancer have been
no longer need to excrete their toxic       published.
compounds because they are now
receiving their nitrogen from 714X.
This allows the immune system to            COMPLEMENTARY AND
remobilize. 714X is also thought to         ALTERNATIVE THERAPIES
unclog the lymph system, which is
                                            — THINGS TO CONSIDER
responsible for removing toxins from
the body.
                                            Much is yet to be learned about com-
                                            plementary and alternative therapies.
No results of controlled clinical studies
                                            The following are a few things to keep
to determine the effectiveness of 714X
                                            in mind if you choose to explore the
in people with cancer have been pub-
                                            world of complementary and alterna-
lished.
                                            tive medicine.

                                            •   Obtain as much information as pos-
Biomagnetics (Magnetic Field                    sible, preferably objective informa-
Therapy)                                        tion, about the treatment you are
                                                considering. Talk with people who
The use of magnets and electrical               have gone through the regimen.
devices has many medical applications.          Ask about the downsides, side
The body produces its own internal              effects, risks, and satisfaction with
magnetic fields caused by the chemical          the results.
reactions within the cells and currents
in the nervous system. Some scientists      •   Make sure to discuss your consider-
believe that external magnetic fields           ations or choices with your health-
can affect the body’s functioning in            care provider. He or she needs to
both positive and negative ways.                have a complete picture of your


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                   treatment plan in order to provide     SUMMARY
                   you with the best care possible. If
                   you are uncomfortable discussing       You will be making many decisions on
                   these topics with your physician,      your journey with lung cancer. As with
                   ask yourself why. If you really want   all decisions, make sure you have as
                   answers to your questions, consider    much information as possible. The
                   finding a new physician with whom      more information you have, the more
                   you can comfortably discuss issues     likely it will be that you will get good
                   such as complementary or alterna-      information.
                   tive medicine.
                                                          Remember that the clinical trial system
               •   Find out about the CAM provider’s      was developed to ensure that treat-
                   expertise. How much experience         ments that are available are safe and
                   do they have? What sort of training    effective. Treatments that do not show
                   have they received? Have they          a positive effect in trials should be
                   been certified or licensed to prac-    approached cautiously and considered
                   tice in their field? Call your local   very carefully. Those therapies for
                   Better Business Bureau to check        which no trials have been done also
                   for complaints against the practi-     need to be considered very carefully. In
                   tioner or business.                    the end, however, only you can make
                                                          the decisions about what is right for
               •   How much will the therapy cost?        you.
                   Will your insurance reimburse
                   you? Does the therapy make sense       As stated previously, ALCASE is pro-
                   for you when you consider its effi-    viding information on complementary
                   cacy and your economic picture?        and alternative therapies in response to
                                                          requests we receive. This information
               Some things to consider when contem-
                                                          in no way constitutes an endorsement
               plating complementary and alternative
                                                          by ALCASE of the effectiveness or
               therapies include:
                                                          i n e ffectiveness of any therapy or
               • what benefits can be expected
                                                          approach listed.
               • what the risks are
               • what the cost is
               • whether the benefits outweigh the
                   risks
               • if the therapy is in clinical trial
               • what the side effects are
               • the potential for interference with
                   conventional therapy
               • if your insurance will cover the
                   therapy




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                            Living with Lung Cancer
                                   Table of Contents                                            10
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.1
Coping With the Diagnosis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.1
Some Helpful Coping Styles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.3
Telling Your Loved Ones You Have Cancer . . . . . . . . . . . . . . . . . . . . . . . . . 10.4
    Telling Your Partner . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.4
    Telling Your Children or Parents . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.5
    Telling Your Friends and Others . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.5
Enriching Your Life With Hope . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.6
Taking Action . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.6
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10.7
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                        Living with Lung Cancer                              10
INTRODUCTION                                  key element of coping with cancer.



A
          cancer diagnosis brings about       Be sure to read the callout boxes sprin-
          any number of emotional             kled throughout this chapter. We
          responses: fear, anger, grief,      believe you will find these brief
guilt, loneliness, or denial. All of these,   excerpts taken from books on cancer
as well as other powerful emotions, are       survivorship and healing helpful. The
normal responses to hearing you have a        wisdom expressed comes from many
life-threatening disease. This chapter is     years of experience of many people
about dealing with these feelings. The        dealing successfully with cancer and
information that follows may help you         other serious illnesses.
to develop a coping style that both suits
you and contributes to your sense of          We hope this chapter will inspire you
hope, your general well-being, and            to find support; develop coping skills
your healing.                                 that work for you; and maintain an
                                              open, hopeful attitude about your
                                              future. We hope you will feel inspired
    There is no single right way to cope      to try some new enriching things in this
    with the diagnosis of lung cancer.
    Each person chooses his or her own
                                              new stage of your life. And, most
    coping strategy and changes it, over      importantly, we hope you can maintain
    time, as necessary. Coping is as indi -   or find your hope.
    vidual as the individual.


                                              COPING WITH THE
The definition of coping is very broad
and yet very specific for each individ-       DIAGNOSIS
ual. Coping can mean struggling under         For most people, the first days and
extreme circumstances to make it              weeks after a diagnosis of lung cancer
through a difficult situation. It can         is often a very difficult time. You may
mean choosing fresh solutions to prob-        experience a wide range of strong emo-
lems. Coping can also mean getting the        tions such as denial, disbelief, grief, a
most out of any situation. It can be a        sense of profound loss, fear of the
positive and creative process.                unknown, and worry about the future.
Your ability to cope can affect the qual-
ity of your life and, studies show, your
                                                  In his book, “The Wellness Community
life expectancy. Learning to identify,            Guide to Fighting for Recovery fro m
accept, and express your feelings is a            C a n c e r,” Harold H. Benjamin, Ph.D.

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                  encourages patients to eliminate the           The Alliance for Lung Cancer A d v o c a c y,
                  following common myths about can -             Support, and Education (ALCASE) can
                  cer: (1) Cancer is always invincible
                  and (2) Life ends with cancer. Dr.
                                                                 be especially helpful to you as you cope
                  Benjamin states: “They’re all myths!           with the news that you have lung cancer.
                  You don’t need them! They get in the           Your own community or hospital may
                  way! Get rid of them!”                         also have resources to which you turn
                                                                 for help.

               Remember that all of these feelings are
               normal, acceptable, and justifiable.                  Call ALCASE at 800-298-2436 to find
               You can handle them. Information can                  out more about programs to help you
               help. To get a handle on your diagno-                 live with lung cancer.
               sis, ask your doctor questions such as:
               • Can you refer me to a support
                    group just for lung cancer sur-              ALCASE offers a number of services,
                    vivors?                                      all of which are free of charge, that you
               • Can you give me the name of a                   and your loved ones might find helpful
                    counselor with expertise in work-            as you learn to live with lung cancer.
                    ing with lung cancer survivors?              You can get information and support
               • What should I tell my loved ones                by calling ALCASE’s toll-free number,
                    about my diagnosis?                          800-298-2436. You and your family
               • Would you be willing to talk with               members can ask to be matched with a
                    my family and friends if they have           lung cancer Phone Buddy through a
                    questions?                                   p e e r-to-peer support program spon-
               • What can I do if I wake up at night             sored by ALCASE. You can receive a
                    or can’t go to sleep because I am            quarterly newsletter called Spirit and
                    worried about having cancer?                 Breath, which includes articles that are
               • Can you put me in touch with                    meaningful to lung cancer survivors,
                    someone who has been treated for             caregivers, and healthcare profession-
                    and survived lung cancer?                    als. You can also get information on-
                                                                 line at http://www.alcase.org.
               Be sure to find someone to talk with
               about your emotions. Look to others               There may also be a support group for
               for guidance and support. It is especial-         lung cancer survivors or for people liv-
               ly helpful to talk to a well-adjusted per-        ing with cancer in your community. A
               son who does not pass judgment or                 support system, including a support
               become too emotionally involved.                  group, can provide opportunities to talk
                                                                 with others who are in circumstances
                                                                 similar to yours about your concerns,
                   “Think positively. It’s good for heal -       get tips, and share information and
                   ing your body and soul.”                      resources.
                                — lung cancer survivor




        10.2
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SOME HELPFUL                                  •   keep focused on what needs to be
COPING STYLES                                     done here and now
                                              •   find things to look forward to
Taking care of your health, your well-        •   promote a positive, respectful rela-
being, and your comfort must be at the            tionship with your body
top of your list of things to do each day.    •   listen to the messages you give
How you choose to do this is, of                  yourself and make sure they are
course, up to you. Some people choose             positive
to listen to music to relax; others may       •   identify causes of anxiety and con-
choose to take long baths. Yo u r                 cern; address them
approach is as individual as you are.         •   change any harmful coping behav-
                                                  iors you may have now
                                              •   keep a journal just for you
    Andrew Weil, MD based the following       •   p l a y, and engage in enjoyable
    seven coping strategies for anyone            activities
    who is sick and struggling with diffi -   •   be assertive and advocate for your
    cult decisions on his work with               needs when necessary
    patients and on extensive research.
    (“Spontaneous Healing,” Fawcett
                                              •   use visualization and imagery to
    Columbine, 1995).                             promote wellness
                                              •   avoid catastrophic thinking
    1.   Do not take “no” for an answer       •   avoid self-blame, self-criticism,
         from your healthcare providers           and feelings of resignation
         and others.
    2.   Actively search for help.
                                              •   avoid all-or-nothing, black-and-
    3.   Seek out others who have been            white thinking
         healed.                              •   focus on what you have, what you
    4.   Form constructive partnerships           love, and what makes you happy
         with health professionals.
    5.   Do not hesitate to make radical
         life changes.
    6.   Regard illness as a gift.                A coping program should be tailored
    7.   Cultivate self-acceptance.               to your personal style and needs. The
                                                  following list is adapted from “The
                                                  Alpha Book on Cancer and Living”
                                                  (The Alpha Institute, 1993).
Some general guidelines about coping
styles that other people dealing with             Learning to Cope: 15 Good Ideas
serious illness have found include:               1. Obtain information.
                                                  2. Create a positive attitude.
• focus on the things that you can                3. Recognize the power of humor.
    influence                                     4. Develop good communication.
• accept your feelings, no matter                 5. Take one step at a time.
    what they are                                 6. Develop a problem-solving
• stay involved in life                               process.
                                                  7. Manage your time well.
• maintain an attitude of realistic               8. Reach out for help and compan -
    optimism                                          ionship.
• simplify life wherever possible                 9. Resolve strained relationships.



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                  10. Identify a support team and use          d i fficult time.
                      it.
                  11. Recognize the potential benefit of
                      counseling.
                                                               Open communication from the very
                  12. Be aware that compromise may             start is very important in coping with
                      be necessary in your coping pro -        cancer, for both you and your loved
                      gram.                                    ones. Be sure to talk honestly about
                  13. Try new things.                          your feelings and about the informa-
                  14. Set small goals.
                  15. Don’t forget pleasure.
                                                               tion you have learned from your
                                                               healthcare providers. Encourage truth
                                                               and clarity in your communication.


               TELLING YOUR LOVED
                                                               Telling Your Partner
               ONES YOU HAVE CANCER
                                                               Finding out that a spouse or partner has
               Your loved ones most likely will be             been diagnosed with cancer can be
               deeply affected by your diagnosis of            very difficult. How you tell your part-
               lung cancer. They may need to express           ner of the diagnosis will depend on
               their strong emotions, too. This is a           your specific relationship. Your partner
               natural, and healthy, response.                 may experience many of the same feel-
                                                               ings you experience: anger, fear,
               Telling your partner may be particular-         denial, sadness. Spouses and partners
               ly difficult. He or she will most likely        often provide a lot of emotional and
               be facing deeply disturbing fears and           practical support, even though they
               concerns about your diagnosis, while            themselves are experiencing intense
               taking on the new responsibility of             feelings and many demands on their
               being one of your key supporters in             time and energy. You may find your
               your fight against lung cancer. This can        partner to be your main source of sup-
               be overwhelming in the beginning.               port throughout the cancer experience.

                                                               How you and your spouse or partner
                  Open communication from the very
                  start is very important in coping with       handle the lung cancer experience will
                  cancer, for both you and your loved          be, in large part, a reflection of your
                  ones.                                        combined values and priorities. If
                                                               togetherness is very important to both
                                                               of you, your partner may assume a sig-
               Telling your parents, children, or              nificant role in the process. On the
               other close family members, friends,            other hand, if you both tend to be more
               or coworkers also can be hard. T h e y,         independent, you may choose to do
               too, may be very frightened and wor-            things on your own. There is no right
               ried about your future. They may feel           or wrong approach. It is useful,
               a sense of helplessness because they            though, to keep a balance in which
               do not know how to assist you in this           your partner recognizes your right to


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make the final decisions, while offer-         If you face more difficult situations
ing ongoing support.                           with parents or children, you might
                                               consider seeking counseling. Yo u r
Your partner and other loved ones may          physician, oncology social worker, or
need to find their own source of sup-          clergy are often good sources for refer-
port to deal with their emotional needs.       rals to mental health professionals and
                                               support groups. If you need help, be
                                               sure to seek it as early as you can.
Telling Your Children
or Parents
                                               Telling Your Friends
Children, young and adult, and parents         and Others
have an uncanny way of knowing when
something important is occurring that          Your friends can be an excellent source
will affect their lives. Therefore, it is      of support. Keeping them informed and
best to provide them with an age-              aware of your situation will enable
appropriate, simple, straight-forward          them to be the most helpful.
explanation of the situation.
                                               Some of your friends will be a gratify-
Explain your diagnosis in a way that           ing source of support, and you may
will keep your children or your parents        find yourself enjoying a deeper sense
from imagining an even worse situa-            of relationship with them. Others may
tion. Do not be surprised if they some-        be frightened by your diagnosis and
how feel responsible for your illness.         disappear from your life. Most of your
Open communication about emotions              friends will want to help, but will need
such as fear and sadness will do much          to know from you how to do that. You
to deepen relationships and provide            may need to take the initiative to ask
comfort to all concerned.                      for a visit or help with errands.

Children or parents may resent losing          Telling others beyond your close circle
your attention and having less time with       of friends about your diagnosis is a
you while you are preoccupied with             very personal decision. No one is enti-
treatments and other cancer-related            tled to have information you do not
issues. It may be helpful if a family friend   choose to give them. You may want to
or close relative helps with some of the       give this some thought and consider
family routines and events. Children and       whether or not the person you are
parents may also experience a sense of         thinking about telling has something
profound loss and sadness upon learning        positive to offer. It is your choice
of your illness. You may find that spend-      whom to include or exclude in your
ing some time with them may be very            battle against lung cancer.
helpful for both you and them.




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               ENRICHING YOUR LIFE
               WITH HOPE                                           What you hope for will change over
                                                                   time. But, hope is always important
                                                                   and always healing at some level.
               Hope has great power and can take
               many forms. To hope means to focus
               on the positive aspects of life and on           Hope can mean bringing life to a posi-
               the deep meaning of life and its pur-            tive conclusion by mending relation-
               pose. Some people find hope comes                ships. It can mean learning to see the
               naturally in a wide variety of circum-           true beauty of life because of the close-
               stances. Others have to work at devel-           ness of its end. It can mean dying in a
               oping feelings of hope.                          way that teaches others how to live
                                                                more fully. You may hope for a pain-
               You may be able to foster feelings of            free death.
               hope by doing things such as gathering
               information, setting priorities, nurtur-         Hope is as individual as you are. Each
               ing your spirituality, gaining control of        phase of life has reason for hope. We
               circumstances, or paying attention to            encourage you to interpret the defini-
               what gives meaning to your life.                 tion of hope broadly so that you can see
                                                                that opportunities for hope are always
                                                                present.
                   Hope means different things to dif -
                   f e rent people at different stages of
                   the cancer experience. There are                You may find that taking action to
                   always reasons for people living with           help others prevent lung cancer or
                   lung cancer to have a sense of hope,            advocating for a cure for lung cancer
                   no matter what the diagnosis and                may help you feel genuinely helpful,
                   p rognosis.                                     personally empowered, and hopeful.



               Hope can take many forms. If you                 Because there is always something to
               have early-stage disease, you will cer-          hope for, you and your healthcare team
               tainly hope for cure. If you have late-          need to work together to determine
               stage disease, your hope may focus on            what is reasonable for you.
               finding the best in your situation,
               while accepting the realities. Hope
               may mean trying to reach specific                TAKING ACTION
               milestones in your life: a child’s birth-
               day or graduation, your parents’ g o l d-        It is not your fault that you have lung
               en wedding anniversary, your own                 cancer. If you have unresolved feelings
               golden wedding anniversary. Hope can             of guilt, talk about them with your sup-
               mean continuing to experience the gift           porters or seek counseling. Unresolved
               of life, even when you are fearing what          feelings of guilt will not assist you in
               lies ahead or feeling the side eff e c t s       your healing. Take steps to rid yourself
               from treatments.                                 of these feelings of guilt.


        10.6
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You may find that taking action to help      how they respond will largely depend
others prevent lung cancer or advocat-       on your existing relationships. Open
ing for a cure for lung cancer may help      communication and recognizing the
you feel genuinely helpful, personally       needs of your loved ones, while accept-
empowered, and hopeful.                      ing their love and support are important
                                             components of living with lung cancer.
For information about opportunities for
personal advocacy about lung cancer          Hope is an essential part of coping.
issues, call ALCASE (800-298-2436).          Hope has the power to change and
Encourage other organizations, such as       enrich. Hope can take many forms.
your local chapter of the American           What you hope for is truly unique to
Cancer Society or American Lung              you. Take good care of your body,
Association to develop programs about        mind, and spirit and look for the rea-
lung cancer in your area.                    sons to experience the positive power
                                             of hope in every day.

SUMMARY                                      Our hope is that you have found infor-
                                             mation here that will help you to live
There are many ways to help you cope         successfully with lung cancer, regard-
with the diagnosis of lung cancer.           less of your diagnosis or prognosis. We
Understanding your feelings is a key         encourage you to live fully and find
element in coping with cancer. Ask           ways to appreciate your life.
your doctor for help in finding the sup-
port you need to cope with this illness.
Call ALCASE to take advantage of the
many programs offered to lung cancer
survivors.


   “I find that the simple things in life
   are the things that help me cope with
   my lung cancer—listening to music,
   enjoying the sunshine, playing with
   my cat, talking to my family, praying.
   You will find things that work for you.
   Pay attention to what really brings
   you joy.”
                 — lung cancer survivor


Your loved ones — your partner or
spouse, your children, your parents,
your friends and coworkers — will all
be affected by your diagnosis of cancer.
How you tell them of the diagnosis and


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                  Navigating the Healthcare System
                         and Other Practical Issues
                                               Table of Contents                               11
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.1
Navigating the Healthcare System . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.1
    Being An Informed Consumer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.2
    Personal Empowerment and Advocacy . . . . . . . . . . . . . . . . . . . . . . . . . . 11.3
        American Hospital Association’s Patient’s Bill of Rights . . . . . . . . . 11.3
        Informed Consent . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.4
    The Treatment Team . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.5
        Choosing Your Doctors and Other Healthcare Providers . . . . . . . . . . 11.6
            Questions to Ask Potential Healthcare Providers . . . . . . . . . . . . . 11.7
            Questions to Ask Yourself . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.8
        The Doctor/Patient Relationship . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.8
            Communicating Effectively with Your Doctors . . . . . . . . . . . . . . 11.9
            Tips for Talking With Your Doctors . . . . . . . . . . . . . . . . . . . . . 11.10
            Working Out Communication Difficulties . . . . . . . . . . . . . . . . . 11.11
    Choosing a Treatment Facility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.12
        The Hospital . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.13
            Tips for Managing Your Hospital Experience . . . . . . . . . . . . . . 11.14
        Local Hospitals, Cancer Care Centers, and Teaching Hospitals . . . . 11.15
    Your Role in Treatment: Gathering Information . . . . . . . . . . . . . . . . . . 11.15
        Getting Information From Your Healthcare Providers . . . . . . . . . . . 11.16
        Support Groups: An Information Source . . . . . . . . . . . . . . . . . . . . . 11.16
        Other Sources of Information . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.17
        Some Basic Medical Questions to Ask . . . . . . . . . . . . . . . . . . . . . . 11.17
Other Practical Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.19
    Maintaining Your Medical Records . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.19
    Filing Insurance Claims and Appealing Rejections . . . . . . . . . . . . . . . . 11.20
        Keeping Accurate Records of Charges . . . . . . . . . . . . . . . . . . . . . . 11.21
    Health Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.22
        Types of Health Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.22
            Individual Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.22
            Group Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.23
            Health Maintenance Organizations . . . . . . . . . . . . . . . . . . . . . . 11.24
            Other Health Insurance Options . . . . . . . . . . . . . . . . . . . . . . . . 11.24
                Indemnity Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.24
                High-Risk Pools . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.24
                Medicare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.25
                Medicaid . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.25
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                          Catastrophic Policies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.26
                          Military Insurance and Clinical Studies . . . . . . . . . . . . . . . . 11.26
                          Military Veterans’ Benefits . . . . . . . . . . . . . . . . . . . . . . . . . 11.27
                  Health Insurance and Job Changes . . . . . . . . . . . . . . . . . . . . . . . . . 11.27
               Other Types of Insurance and Financial Options . . . . . . . . . . . . . . . . . . 11.28
                  Disability Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.28
                  Life Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.28
               Work-Related Issues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.29
                  Discrimination on the Job . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.30
                  The Americans with Disabilities Act (ADA) . . . . . . . . . . . . . . . . . . 11.31
                  Vocational Rehabilitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.31
               Managing Your Finances . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.31
                  Durable Power of Attorney for Financial Decisions . . . . . . . . . . . . 11.32
                  Obtaining Needed Cash . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.32
                      Reverse Mortgages . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.32
                      Viatical Settlements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.33
                  Other Financial Assistance Options . . . . . . . . . . . . . . . . . . . . . . . . . 11.34
                      Patient Assistance Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.34
                      Transportation and Lodging . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.34
                      Community Service Organizations . . . . . . . . . . . . . . . . . . . . . . 11.34
                      Governmental Agencies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.35
               Supplemental Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.35
                  Home Health Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.35
                  At-Home Recovery Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.35
                  Hospice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.35
                  Eldercare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.35
                  Meals on Wheels . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.35
                  Assisted Living Facilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.36
                  Adult Daycare . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.36
            Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11.36
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    Navigating the Healthcare System
           and Other Practical Issues                                     11
INTRODUCTION                               •   tips for communicating effectively
                                               with your doctors
                                           •   suggestions for managing a hospi-

T
       he previous chapters provided
       information on lung cancer              tal stay
       and the types of treatment cur-
rently available. This chapter pro-
vides some basic information to help           The healthcare system can be confus -
                                               ing for anyone. As a person being
you to ask informed questions, to              treated for lung cancer, you will be
seek further input, to make informed           meeting new people, speaking a new
decisions, and to explore your                 language, and in many cases, living
options. This information can pro-             by new rules. It will be important for
vide a solid foundation for your con-          you to learn to navigate this new envi -
                                               ronment to be sure you receive the
tinued learning.                               very best care.

We divided this chapter into two major
sections. The first, “Navigating the       The healthcare system can be confus-
Healthcare System,” focuses on you         ing for anyone. As a person being treat-
and your experiences as a patient in the   ed for lung cancer, you will be meeting
healthcare system. The second, “Other      new people, speaking a new language,
Practical Issues,” focuses on broader      and in many cases, living by new rules.
issues, such as record-keeping, work       It may help you to learn about your
issues, and financial management.          new surroundings, including the mem-
                                           bers of your new healthcare team, the
                                           places you will go to receive treatment,
NAVIGATING THE                             and the medical terms you will begin to
HEALTHCARE SYSTEM                          hear and speak.

This section will give you:                People newly diagnosed with lung can-
• tips for being an informed health-       cer are often amazed at the knowledge
   care consumer                           of some of their fellow patients and the
• an overview of the types of health-      ease with which they talk with their
   care providers who may be on your       caregivers. Most likely, you will find
   treatment team                          that, after a surprisingly short period of
• guidance on choosing a physician         time, you will be doing the same.
   and a treatment facility
• a list of medical questions you may
   want to ask your healthcare providers

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               Being An Informed Consumer                        the information and do the “navigat-
                                                                 ing.” How you approach the business of
               Being an informed consumer and                    decision-making is your business.
               knowing your rights are particularly
               important when you are looking for                Knowing your own personal limita-
               healthcare that is not only good but              tions and what you consider to be an
               also fits your personal needs.                    acceptable quality of life — two things
                                                                 that only you know best — will help in
                                                                 your decision-making. On the other
                   One of the first steps in ensuring that       hand, you may be amazed at your own
                   you are getting the best possible care        strength and resilience.
                   is to educate yourself.
                                                                 ALCASE has a great deal of informa-
                                                                 tion on lung cancer that is available to
               The day before your diagnosis, you                anyone who requests it. Obviously,
               were probably able to say what you                this manual is a major information
               hoped to be doing in a year. The day              source. In addition, ALCASE can con-
               after, you may have felt as if suddenly           duct specific information searches
               someone else was in control of where              upon request. ALCASE also has other
               you would be in a year. The process of            educational resources designed specifi-
               regaining control begins with learning            cally for lung cancer survivors and for
               everything possible about the disease             their family members and friends.
               and the treatment options.
                                                                 Another good source of information on
                                                                 lung cancer is the Physician Data
                   “Don’t be afraid to be an active con -
                                                                 Query (PDQ), a computer database that
                   sumer of health care. Ask both your
                   doctor and the insurance carr i e r           contains cancer information statements
                   about treatments and what they cost           on all types of cancer, listings of
                   and what is covered. Ask hard ques -          research studies (clinical trials), and
                   tions if necessary.”                          directories of physicians and organiza-
                                 — lung cancer survivor
                                                                 tions involved in cancer care. The PDQ
                                                                 was developed by the National Cancer
                                                                 Institute (NCI) with the help of cancer
               Making life-changing decisions comes              experts from across the nation.
               with the territory of having lung cancer.
               How we make decisions is unique to                There are a number of ways that people
               each of us. Some people want to know              can obtain information from PDQ over
               everything there is to know about the             the Internet. Many hospitals, university
               disease and want to make all their own            libraries, and large public libraries
               treatment decisions. Others prefer to             have PDQ Internet access.
               have their doctors make treatment deci-
               sions based on their knowledge and                Information from PDQ is also avail-
               expertise. Still others will prefer to have       able through several NCI-sponsored
               a friend or family member sort through            services such as the Information

        11.2
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Associates Program, CancerFax, and          to receive the best treatment you can.
CancerNet. The National Cancer
Institute’s (NCI) Cancer Information
Service (CIS) at 1-800-4-CANCER                 Regardless of whether you have insur -
can provide PDQ treatment, preven-              ance or not, you have the right to
                                                advocate for yourself in order to
tion, and screening information, as             receive the best treatment you can.
well as clinical trial searches. The PDQ
Search Service also conducts PDQ
searches for physicians and other           For people living with lung cancer, per-
health professionals (800-345-3300).        sonal empowerment and advocacy are
                                            critical components to improving treat-
The Cancer Information Service (CIS)        ment outcomes. Historically, lung can-
is a nationwide network of 19 regional      cer patients have had limited treatment
o ffices supported by the National          options and have had little opportunity
Cancer Institute. Through its toll-free     to participate in the decision making
phone service, CIS provides accurate,       regarding their healthcare. More and
up-to-date information on cancer            more healthcare providers are now
patients and their families, health pro-    interested in changing this legacy.
fessionals, and the general public.
Through their outreach program, CIS
serves as a resource for state and          American Hospital Association’s
regional organizations by providing         Patient’s Bill of Rights
printed materials and technical assis-      A movement toward patient empower-
tance for education on all types of can-    ment was started in the early 1970’s,
cer, media campaigns, and community         when     the     American    Hospital
programs. CIS offices are located at        Association developed the following
NCI-designated cancer centers and           Patient’s Bill of Rights. This Bill of
other healthcare institutions.              Rights has become the standard for the
                                            healthcare industry. You may find it
                                            helpful to keep these rights in mind
Personal Empowerment and                    throughout your experience with can-
Advocacy                                    cer and cancer treatment.

Healthcare management is changing           1. The patient has a right to consider-
rapidly, especially for people with can-       ate and respectful care.
cer. Significant issues, including insur-   2. The patient has a right to obtain
ance coverage, payment for treatments,         from his or her physician complete
among others, will require new policies        current information about his or her
and mandates. Whether you are on               diagnosis.
Medicare, are a member of an HMO,           3. The patient has a right to obtain
subscribe to an indemnity insurance            from his or her physician informa-
plan, or are uninsured, you have the           tion necessary to give informed
right to advocate for yourself in order        consent prior to the start of any pro-


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                   cedure and/or treatment.                 Informed Consent
               4. The patient has the right to refuse       It is your doctor’s responsibility to pro-
                   treatment to the extent permitted by     vide you with enough information
                   law.                                     about your treatment options for you to
               5. The patient has a right to every          make an informed decision. Your doc-
                   consideration of his or her privacy      tor must have a consent form signed by
                   concerning his or her own medical        you that reflects that this process has
                   care program.                            occurred before performing any non-
               6. The patient has a right to expect         emergency procedure. Your right to
                   that all communications and              the informed consent process continues
                   records pertaining to his or her care    throughout your illness.
                   should be treated as confidential.
               7. The patient has a right to expect         The requirement for informed consent
                   that, within its capacity, a hospital    has several purposes. It outlines the
                   must make a reasonable response          doctor’s responsibility for explaining
                   to the request for patient services.     exactly:
               8. The patient has the right to obtain       • what treatment will be given
                   information as to any relationship       • what the effects are likely to be
                   of his or her hospital to other          • why the treatment is being given or
                   healthcare and educational institu-         the procedure is being done
                   tions insofar as his or her care is      • the expected outcome with or with-
                   concerned.                                  out the treatment or the procedure
               9. The patient has a right to be             • your alternatives to receiving the
                   advised if the hospital proposes to         treatment or having the procedure
                   engage in human experimentation
                   affecting his or her care and the
                   right to refuse to participate in such       Your right to the informed consent
                   research projects.                           p rocess continues throughout your
               10. The patient has the right to expect          illness.
                   reasonable continuity of care.
               11. The patient has the right to examine
                   and receive an explanation of his or     By signing the consent form, you are
                   her bill regardless of the source of     saying that you understand the reasons
                   payment.                                 for the proposed treatment and that you
               12. The patient has the right to know        give your consent to proceed with the
                   what hospital rules and regulations      treatment. Take the time to read the
                   apply to his or her conduct as a         form carefully. If there is anything you
                   patient.                                 do not understand or do not agree with,
                                                            ask questions until you understand
               In response to the negative impact of        everything completely.
               managed health care in the United States,
               there is a move at the federal level to      If you don’t agree with something on
               adopt a “Patient’s Bill of Rights.”          the form, discuss the changes you wish


        11.4
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to make with your doctor. Along with         •   Oncology nurse: nursing profes-
your other rights, you always have the           sional specially trained and certi-
right to refuse treatment.                       fied in the care of and administra-
                                                 tion of treatments to cancer
                                                 patients; there may be one or more
The Treatment Team                               oncology nurses on a treatment
                                                 team
During the course of your treatment,
your treatment team will include many        •   Oncology pharmacist: pharmacist
d i fferent health professionals from            specially trained in preparing and
many different disciplines. Together,            dispensing medications for cancer
you and these professionals will deter-          patients
mine the type of treatment you need
and will receive. Your treatment team        •   Pathologist: physician specially
may include many or all of the follow-           trained in diagnosing diseases
ing, depending upon your course of               through analyzing body fluids and
action (note: the professionals are list-        tissues
ed alphabetically, not in the order you
might meet or work with them).               •   Primary care provider: medical
                                                 professional generally responsible
                                                 for an individual’s overall care;
                                                 may be a family physician,
    Treating lung cancer takes a team of
    dedicated, expert professionals. Each        internist, gynecologist, or nurse
    member of your healthcare team will          practitioner
    play a critical role in your treatment
    and care.                                •   P u l m o n a ry rehabilitation specialist:
                                                 pulmonologist who specializes in
                                                 rehabilitation of people with lung
•   Dosimetrist: professional respon-            diseases, including lung cancer
    sible for calculating, with the use of
    computers, the number of radiation       •   Pulmonologist: physician trained
    treatments needed and how long               in diagnosing and treating disor-
    each treatment should last                   ders of the lungs (except lung can-
                                                 cer); may be first referral from pri-
•   Medical oncologist: physician spe-           mary care physician; may diagnose
    cially trained in the use of drugs           lung cancer
    (chemotherapy) to treat cancer;
    usually the head of the treatment        •   Radiation oncologist: physician
    and supportive care team                     specially trained in using radiation
                                                 (radiation therapy) to treat cancer
•   Nutritionist/dietitian: specialist
    trained to assist in determining         •   Radiation physicist: professional
    needed and appropriate nutrition             specially trained in the clinical


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                   application of radiation therapy and              can before embarking on your treat -
                   who makes sure that the equipment                 ment journey.”
                                                                                  — lung cancer survivor
                   is working properly and delivering
                   the correct dose

               •   Radiation therapist/technologist:              Choosing Your Doctors and Other
                   technician who prepares and posi-              Healthcare Providers
                   tions an individual for radiation              You have a right to choose your health-
                   therapy and runs the equipment                 care providers. You are a consumer of
                   that delivers the radiation                    the services your healthcare team is
                                                                  providing. It is important that you feel
               •   Radiation therapy nurse: radiation             confident about the quality of care they
                   nurse who provides nursing care                provide, as they will be helping you
                   and information about treatment,               make decisions that greatly affect your
                   including how to manage side                   life.
                   effects from radiation
                                                                     It’s important for you to choose care
               •   Radiologist: physician trained in
                                                                     providers who treat you the way you
                   scanning techniques; usually the                  prefer to be treated. Remember, you
                   person who reads the diagnosing                   are hiring your doctors to work with
                   scan or x-ray and will continue to                you, not the other way around.
                   do treatment and post-treatment
                   follow-up
                                                                  Be aware of how potential healthcare
               •   Social worker: professional trained            providers talk with you and choose
                   to help people deal with the emo-              those who treat you the way you prefer
                   tional aspects of having a disease             to be treated. Remember, you are hir-
                   and to help them access needed ser-            ing your doctors to work with you, not
                   vices — medical, emotional, and                the other way around.
                   financial; there are specially trained
                   oncology social workers who work               Choosing a healthcare provider to han-
                   only with people with cancer                   dle your lung cancer care may begin
                                                                  with a referral from your primary
               •   S u rg e o n : physician specially             healthcare provider. There are many
                   trained in surgery                             things to investigate before you decide
                                                                  whether an individual can provide the
               •   Thoracic surgeon: surgeon spe-                 care and services that best meet your
                   cially trained in lung surgery                 treatment needs.

                                                                  The most important thing to remember
                   “Finding the doctors and healthcare
                   facility that suit you and your needs is       is that you will want the people most
                   an important endeavor. Take care to            skilled in the treatment of lung cancer
                   find out as much information as you            on your team. Take time to check out


        11.6
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the person’s credentials. Many public         stances, this may also raise a red flag.
libraries have guides, such as the            Keep in mind that your insurance cov-
American       Medical     Dire c t o ry,     erage may limit your choices. If you
Directory of Medical Specialists, and         belong to an HMO or other managed
Top Doctors of America that may be            care organization, you will probably
good sources of information.                  have a list of providers you must
                                              choose from. Before you see a special-
                                              ist, check with your insurance compa-
   You may want to ask other lung can -       ny. You will probably need a referral
   cer survivors and healthcare profes -      from your primary care provider. Ask
   sionals for referrals to medical oncol -
   ogists, surgeons, radiation oncolo -
                                              specifically for a referral to a physician
   gists, and other members of your           or team of physicians whose stated pri-
   healthcare team. You will particularly     mary interest is lung cancer.
   want to have people on your team
   who specialize in lung cancer.
                                              Questions to Ask Potential Health-
                                              c a re Pro v i d e r s. You may want to con-
You may want to ask other cancer sur-         sider asking some very direct questions
vivors (especially lung cancer sur-           before you decide on who will provide
vivors) and healthcare professionals          your cancer care. If you feel strongly
for referrals to medical oncologists,         about such issues as pain management, a
s u rgeons, radiation oncologists, and        “do not resuscitate” (DNR) order, or
other members of your healthcare              physician-assisted suicide, the initial
team. Cancer survivors can be very            interview may be a good time to discuss
helpful in this process because they          these issues. It will be more difficult later
have been in similar situations. Other        on — although certainly not impossible
healthcare professionals can also pro-        — to change physicians if you find out
vide useful information based on their        that you and your care provider disagree
knowledge of the healthcare providers         on issues such as these.
in your area. You may want to call the
American Medical Association or your          Questions you might consider asking
local American Cancer Society to get          potential providers include:
information on potential providers.
                                              •   Are you board certified in your spe-
Be aware that some healthcare profes-             cialty?
sionals may not feel comfortable criti-
cizing another healthcare professional.       •   How much experience have you
You may have to “read between the                 had with lung cancer and how fre-
lines.” If they seem uncomfortable,               quently do you treat it?
vague, or unenthusiastic about another
professional, this may suggest an             •   Is lung cancer your primary interest?
unspoken concern. Or, if they refer all
their patients to one specific person         •   How do you stay up-to-date on
without consideration of circum-                  treatments?

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               •   Do you have patients who partici-      •   Did this person treat my questions
                   pate in clinical trials?                   with respect and answer them will-
                                                              ingly and completely?
               •   Which specialists, hospitals, and/or
                   treatment centers do you work          •   Did we agree on issues about which
                   with?                                      I hold strong opinions?

               •   Are you comfortable with me seek-      •   Does this person understand lung
                   ing additional opinions?                   cancer staging? Did he or she
                                                              explain it to me?
               •   Do you accept my insurance?
                                                          While some people with lung cancer
               •   Will you return my calls in a time-    live for many years, others have limit-
                   ly manner? Specifically, how soon      ed survival time. The physician you
                   will you or someone in your office     choose to be your cancer-care provider
                   return my calls?                       will most likely follow your case to the
                                                          end of your life. Think about whether
               •   If I decide to investigate or use      you would want the healthcare
                   complementary therapies, will you      providers you talk with to provide your
                   work cooperatively with nontradi-      health care throughout the entire dis-
                   tional practitioners such as natur-    ease process.
                   opaths, herbalists, acupuncturists,
                   and Chinese medicine specialists?      The Doctor/Patient Relationship
                                                          Your doctor, or team of doctors, will be
               •   If you are having surgery: How         making recommendations and deci-
                   frequently do you perform the pro-     sions about your health care that will
                   cedure I will undergo? (Studies        have lasting effects on your life. How
                   have shown that the more frequent-     you relate to your healthcare team is an
                   ly a surgeon performs a particular     important factor in achieving the max-
                   procedure, the better the outcome      imum success in your treatment and
                   for the survivor, both in short- and   ongoing care.
                   long-term effects from surgery.)
                                                          It is important, whether you have a
               Questions to Ask Yourself. After you       doctor who specializes in oncology
               have met with a potential healthcare       (cancer care) or not, to decide on the
               provider, ask yourself:                    kind of doctor/patient relationship that
                                                          will work best for you. Asking yourself
               •   Was I comfortable with this indi-      the following questions may help you
                   vidual?                                decide:

               •   Did I feel this person took enough     •   Do I want to have an equal role in
                   time to answer my questions?               reviewing information and making
                                                              decisions? Or, do I want my doctor


        11.8
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    to tell me what to do and what           more in control again. On the other
    treatments I should receive?             hand, you may find it less stressful to
                                             turn the decisions over to your doctors,
•   Do I want a doctor who only uses         and spend as little time as possible think-
    standard treatments or one who is        ing about the illness or its treatment.
    more likely to suggest experimen-        Only you know what is right for you.
    tal, complementary or alternative
    approaches as well?                      Communicating Effectively with
                                             Your Doctors. You and your doctor
•   Do I want facts only, without my         must communicate clearly and openly
    doctor’s opinions, so that I can         if you are to receive the best care.
    come to my own conclusions? Or,          Consider asking yourself the following:
    do I want my doctor to give me
    advice about what to do?                 •   Can I be open with my doctor about
                                                 any topic that might come up?
•   Do I care about the doctor’s per-
    sonality? If so, what personal qual-     •   Can I tell my doctor if I don’t
    ities are important to me?                   understand something he or she
                                                 said?
Even if you respect your doctor’s
knowledge, you may not feel comfort-         •   Can I be honest with my doctor
able talking to her or him about how             about things I do that he or she
having lung cancer affects you emo-              should know about, but think he or
tionally. If this is the case, you may           she might not approve of?
want to speak with a social worker on            (Examples include such things as
your treatment team or get a referral to         using complementary and/or alter-
a mental health professional.                    native medical treatments, using
                                                 alcohol or drugs, and smoking. It’s
                                                 important your doctor know about
    You may find that helping to choose          these things, because some of them
    the course of your treatment will help       could affect the treatments your
    you feel more in control again.              doctor recommends.)

                                             •   Do I want to learn about a clinical
There are some advantages to working             trial?
with your doctor as an equal partner.
People with cancer often feel they have      •   Am I comfortable taking up my
lost control over their lives. Sitting           doctor’s time to answer questions?
back and waiting for the doctor to “fix”         How long does it take to reach my
what’s wrong with them makes some                doctor when I have questions?
people feel even less in control. It also
puts all the responsibility on the doctor.   •   Does my doctor listen carefully and
You may find that in helping to choose           treat my concerns with respect?
the course of your treatment you feel            Can I understand the answers my

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                    doctor gives me?                                 your life, such as changes or
                                                                     problems in your family life or
                •   Does my doctor know the best                     job
                    treatment options? Will they be              •   how much you know about
                    offered to me regardless of cost?                lung cancer and how much you
                                                                     want to learn
                If you answered “no” to any of these             •   any fears or experiences you
                questions, try to figure out why. For                have had about cancer, hospi-
                example, if you find it difficult to speak           tals, or specific treatments
                up to your doctor, maybe you feel that           •   your views about taking pain
                you are bothering him or her. On the                 medication
                other hand, your doctor may be acting            •   how and when you want infor-
                in ways that make it hard for you to                 mation presented to you
                speak up.
                                                             All of this information is helpful to
                The following suggestions may help           your doctors. There is no one right
                you work effectively with your doctors:      approach to treatment and knowing
                                                             your ideas and feelings can help your
                •   Let your doctor know if you don’t        doctor pick the treatments that best
                    understand, or have concerns             match your needs. Be sure to tell your
                    about, something that was said. It’s     healthcare team what information you
                    important that you understand your       want them to keep private, and what
                    doctor correctly. It may be helpful      they can tell family members and
                    to repeat back what you heard so         friends about your condition and treat-
                    that your doctor can correct any-        ment. It may be helpful to identify
                    thing that may have been misun-          someone you trust for your doctor to
                    derstood. Take whatever time you         speak to, if needed.
                    need to make sure you understand
                    the answers.                             Tips For Talking With Your Doctors.
                                                             Try to have any important conversa-
                •   Let your doctor get to know you;         tions with your doctors in a private,
                    talk about:                              quiet place. If you are in a noisy or
                    • whether you are a cautious per-        public setting, suggest moving to
                        son or a risk-taker                  someplace more private before contin-
                    • your approach to health, includ-       uing your conversation. Write out the
                        ing how much you want to par-        things you want to talk about before
                        ticipate in decisions about treat-   you talk with your doctor.
                        ment
                    • any concerns you have about            You might have to ask questions more
                        specific types of treatments         than once, but keep asking them until
                    • how much physical work your            they are answered. If doctor or nurse
                        job or other duties require          c a n ’t answer your questions, ask them to
                    • anything significant going on in       refer you to someone who can. Be sure


        11.10
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to let your doctor know if you would               when it is best to call. This should
like him or her to use simpler terms.              help you come to an agreement that
                                                   will work for both of you.
There are some things to keep in mind
when dealing with your doctors that            •   When you call, ask if it is a good
will make your relationships go                    time to talk and say how long you
smoother:                                          think the call will take. If your doc-
                                                   tor cannot take the call, ask when
•   D o n ’t take it personally if your doc-       you can call back.
    tor seems more distracted or less
    friendly one day than another. It          Working Out Communication Diff i c u l t i e s .
    may not have anything to do with           If you are not feeling satisfied with the
    you. Remember, your doctor is a            care you are getting from your doctor, or if
    human being too, with diff e r e n t       you are bothered by something in the rela-
    moods, energy levels, and outside          tionship, ask to talk with him or her in per-
    concerns. Doctors have to protect          son. If your doctor doesn’t have time to
    themselves from becoming emo-              answer all of your questions during a reg-
    tionally drained so that they can          ularly scheduled appointment, make an
    provide care for all of their patients.    appointment just for this purpose. Be sure
    Treat your doctor with the same            to say how much time you will need and
    consideration and respect with             that you will need your doctor’s undivided
    which you would like to be treated.        attention.

•   If you’re angry with your doctor,          Prepare for the meeting by writing out
    try not to ask attacking questions or      your questions and concerns ahead of
    make attacking statements. Instead,        time. Be specific about what you are
    express your intense feelings to           dissatisfied with, and what changes
    someone in your support circle, a          you would like to see. You might:
    family member, or friend, or mem-          • describe the specific behaviors that
    ber of your support group. Then                bother you and how they may you
    approach your doctor with specific,            feel
    clear statements and requests.             • describe specific incidents as accu-
                                                   rately as possible
•   If you are aware of any extra              • d o n ’t use negative words to
    e fforts your doctor or nurse has              describe the doctor or his or her
    made for you, express your                     attitude
    appreciation. Tell your doctor if          • admit any part you may have in the
    there are any things about his or              problem
    her style of working with you
    that are particularly helpful.             If you can’t or don’t want to have an in-
                                               person meeting, present your concerns
•   Talk with your doctor about what           in writing, such as in a letter. This
    are good reasons for you to call and       approach can be useful because it gives


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                your doctor time to think about con-        Choosing a Treatment Facility
                cerns before getting back to you. Either
                way, ask for your doctor’s ideas about      Choosing a treatment facility is similar
                ways of resolving the problem.              to choosing a healthcare provider. You
                                                            may be referred to a facility because
                It always important to try to work          your physician or oncologist practices
                through any difficulties you might have     or has privileges there. If you are in a
                with your doctor. However, if it            managed care program, your choices
                appears that it is just not a good match,   may be limited by the program. If you
                you may want to consider working            live in a rural community, there may be
                with a different doctor. This is one of     only one hospital within a reasonable
                your rights as a patient. Your doctor       distance.
                should be willing to give you a referral
                to another physician if you request it.
                You can also get referrals from other           “Your treatment facility should pro -
                healthcare professionals or other sur-          vide you with respectful, caring ser -
                                                                vice. Their attitude toward you and
                vivors. You may need to go to your              lung cancer matters a lot, just as their
                insurance provider. Keep in mind that           technical skill matters a lot.”
                changing doctors does not mean that                            — lung cancer survivor
                there is anything wrong with either you
                or your doctor.
                                                            Cancer care may be provided at your
                If you are generally satisfied with your    local hospital or cancer center, or at a
                doctor, but just not with a particular      teaching hospital in your area. You
                decision or recommendation he or she        may also receive much of your treat-
                has made, you may want to get a sec-        ment as an outpatient at an oncology
                ond opinion on that particular issue.       clinic. If you live in a large city, you
                Your doctor can give you the names of       may be near a Comprehensive Cancer
                other doctors who can provide second        Center (CCC) or a Community Clinical
                opinions, or you can get these names        Oncology Program (CCOP). These
                from your primary healthcare provider,      facilities have been reviewed and
                the National Cancer Institute’s             approved by the National Cancer
                Physician Data Query (800-4-CAN-            Institute and each offers not only com-
                CER), the American Cancer Society           plete care for all people with lung can-
                (800-ACS-2345), or the Alliance for         cer, but are also able to offer clinical
                Lung Cancer Advocacy, Support, and          trials and educational programs. They
                Education (ALCASE) (800-298-2436).          are likely to be up-to-date on the most
                                                            current treatments. Call ALCASE
                Under some managed care plans, you          (800-298-2436) or the National Cancer
                may be told you have to pay for a sec-      Institute (800-4-CANCER) to get the
                ond opinion, however, many people find      name of the Center nearest you.
                that these decisions can be appealed.
                and payment eventually is made.             When choosing a treatment facility, one
                                                            of the first things to do is find out if it is

        11.12
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accredited. You can get accreditation          leave you feeling alone or treated like
information about hospitals and other          an object. Healthcare professionals
healthcare institutions at your local pub-     may focus on your medical needs,
lic library. Ask the librarian for help in     rather than respond to your feelings, as
locating this information. The Joint           a way of protecting themselves from
Commission on Accreditation of                 being emotionally drained.
Healthcare Organizations (JCAHO) is a
group whose healthcare experts conduct         Added to this, hospitals have routines
surveys of healthcare institutions. You        they must follow in order to function
can call JCAHO at 630-916-5600 for             smoothly, and patients are expected to
information.                                   fit into these routines. As a result,
                                               sometimes patients feel like “cogs” in
The American College of Surg e o n s           the hospital machinery. And there may
(ACOS) Commission on Cancer can                be times when hospital personnel refer
also provide information about ACOS-           to you by your disorder rather than
approved cancer treatment centers and          your name, such as “that lung cancer in
ACOS members in your area. They can            room 912.” This may leave you feeling
be reached at 312-664-4050.                    “not seen” as a person.

The Hospital                                   All of these things can be very trying
Just about everyone who has lung can-          and make you feel somewhat helpless.
cer becomes familiar with one or more          So, if you have to visit or stay in the
hospitals. A hospital is like a separate       hospital, it is important for you to do
little world, with its own customs and         what you can to feel empowered as a
language. In this world, the medical           patient. It may help you to visit the
s t a ff are the natives, at ease and famil-   hospital ahead of time to become more
i a r, and you are the foreigner. For          familiar with it.
them, the hospital is just their every-
                                               Many hospitals have Patient Services
day workplace. But, for you, it is like-
                                               Departments with social workers on
ly to be full of strange objects, words,
                                               staff who can direct you to a variety of
and routines. Feeling nervous can
                                               resources. Many hospitals also have
make it even harder to understand and
                                               case managers (frequently nurses) who
remember what you are told when you
                                               coordinate your care with the various
are hospitalized.
                                               departments that will be involved in
                                               your treatment. You may want to meet
                                               with one of these professionals to ask
    A hospital is like a separate little
    world, with its own customs and lan -      any questions you may have before you
    guage.                                     are admitted for treatment. In addition,
                                               most hospitals now have patient educa-
                                               tion centers. Visit your local center and
Many people have positive hospital             use their services.
experiences. On the other hand, some
aspects of the hospital experience can         Every hospital patient deserves high-

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                quality care. At the same time, hospital         to follow up on any concerns you
                staff are almost always very busy. As a          may have.
                hospital patient, it is important to bal-
                ance these two realities. Speak up if        •   Build positive relationships with
                you have needs that are not being met.           hospital staff. Express appreciation
                Try to be reasonable in what you ask of          for the things they do for you.
                the staff, and to be courteous in how            Along with creating a positive
                you interact with them.                          atmosphere for both you and them,
                                                                 this helps balance out the times you
                If something does not seem right to              may need to voice a complaint.
                you, let the staff members know about
                it. Use an assertive manner — polite,        •   Speak up and ask questions. If
                but firm. Assertiveness is not the same          something is upsetting or confusing
                as aggressiveness. An aggressive man-            to you, ask that it be fixed or
                ner is rude, demanding, and disrespect-          explained clearly. It helps to
                ful of others. Your goal is to get your          approach problems in a friendly
                questions answered and your needs                way. In general, hospital staff will
                met. If you treat the hospital staff with        go out of their way to be helpful. If
                respect and consideration, they are              they don’t, remember that it is your
                more likely to respond positively and            right to continue speaking up until
                do what they can to accommodate your             your concerns are answered, even
                requests in return. If your concerns or          if you must inconvenience the hos-
                problems aren’t handled to your satis-           pital staff to do so. You can also ask
                faction, you can discuss them with               family or friends to follow up on
                someone in the Patient Services                  your concerns or questions. At
                Department.                                      times, what is best for you and
                                                                 what is convenient to the hospital
                Tips for Managing Your Hospital                  may not be the same thing.
                Experience.
                • Be sure you understand ahead of            •   Friendly humor can help to reduce
                   time which doctor is in charge of             tension and build positive connec-
                   your care. Find out how you can               tions with others in the hospital,
                   reach this person before and during           including staff.
                   your visit or stay in the hospital.
                   Ask who else will be involved             •   Many of the suggestions for relat-
                   (other doctors, residents, etc.). Find        ing to your doctor can also be
                   out if a particular nurse will be in          applied to your healthcare team and
                   charge of your care.                          other hospital staff.

                •   Ask one or more of the people in         Before you leave the hospital, ask your
                    your support network to visit regu-      doctor questions such as:
                    larly if you are staying in the hospi-
                    tal, to look out for your welfare, and   •   Will I need help at home? If so,


        11.14
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    with what tasks, activities, and         Clinical Oncology Centers (CCOPs).
    movements, and for how long?
                                             Call the Cancer Information Service
•   How quickly can I expect to be able      (800-4-CANCER) to find the location
    to return to my former duties and        of the CCC or CCOP closest to you. If
    activities?                              it is not practical for you to receive
                                             treatment at a CCC or CCOP, you may
Local Hospitals, Cancer Care                 want to go to a CCC or CCOP to plan
Centers, and Teaching Hospitals              your cancer treatment, which can then
Local hospitals offer many benefits for      be carried out by your local providers.
people undergoing treatment for can-         You can check with the Cancer
cer. These include familiar surround-        Information Service to determine
ings; the support of family and friends;     which institution(s) in your community
and less time, energy, and money spent       are part of their network.
on travel. However, you may want to          Teaching hospitals are associated with
consider participating in a clinical trial   universities that have medical schools.
or receiving treatment at an NCI-desig-      They are another option for people
nated Comprehensive Cancer Center            interested in the newest treatment
(CCC), which may involve traveling           approaches. While the treatment they
further in order to receive treatment.       provide is often excellent, you may be
                                             subject to more tests, have more people
                                             observing your treatments, and have
    NCI-funded clinical trials are con -
                                             less privacy.
    ducted at NCI-designated CCCs as
    well as other cancer centers, medical
                                             Other issues to consider include the
    centers, and community hospitals.
    There are a number of CCCs across        institution’s hours of operation, your
    the nation and more are added on an      insurance coverage, the attitude of the
    on-going basis.                          staff, and the general “feel” of the
                                             place. It’s a good idea to visit any cen-
                                             ter you may be considering.
The PDQ provides summaries of all
NCI-funded clinical trials and some
studies conducted by independent             Your Role in Treatment:
investigators. Most of the trials in the     Gathering Information
PDQ are designed to evaluate new can-
cer treatments. NCI-funded clinical tri-     You can take an active role in getting
als are conducted at NCI-designated          good healthcare by seeking informa-
CCCs as well as other cancer centers,        tion and educating yourself. Ask your
medical centers, and community hospi-        healthcare team to direct you to sources
tals. There are a number of CCCs             of information. Your healthcare team
across the country and more are added        may have patient education materials
on an on-going basis. There are also a       available about the medications you
number of other cancer treatment sites       will be taking, their side effects, and
designated by the NCI as Community           how to manage them.

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                If you feel comfortable with technical          Look over your list to see if any ques-
                information, you may find value in              tions can be answered by other
                journal articles that discuss your type         providers. If your doctor doesn’t have
                of lung cancer and its treatment. Ask a         time to answer your remaining ques-
                member of your healthcare team if they          tions, or if you feel uncomfortable ask-
                know of any journal articles that might         ing your doctor these questions, you
                be helpful. If your healthcare team             might ask your nurse instead.
                can’t provide you with the materials
                you need, they will be able to help you         Your oncology nurse can often answer
                find them. The hospital librarian may           questions about treatment and care.
                also help you locate relevant material.         Oncology nurses are wonderful sources
                                                                of information, and they are generally
                Getting Information from Your                   easy to approach. Most oncology nurs-
                Healthcare Providers                            es will go out of their way to make sure
                Gathering information takes time and            that you get the information you need
                effort. However, it is important for you        as quickly as possible.
                to get the answers you need. If you
                have questions for your doctor, it’s a          If you have questions about medica-
                good idea to organize your thoughts             tions you are taking, your pharmacist
                ahead of time, since his or her time will       can also answer questions. You may
                most likely be limited. It will be most         find the pharmacist is more accessible
                helpful to both of you if you write the         than members of your healthcare team.
                questions out. This helps you organize          Be sure to mention all medications you
                your thoughts and prioritize your ques-         are taking.
                tions. Then give the list to your doctor
                ahead of time, if possible, so she or he        If you can’t get all of your questions
                can be prepared.                                answered in one visit, you may want to
                                                                set a consultation visit with your physi-
                                                                cian just to have time to talk.
                   You can take an active role in getting
                   good healthcare by seeking informa -
                   tion and educating yourself.                 Support Groups:
                                                                An Information Source
                                                                Support groups are also excellent
                Before meeting with your doctor, write          sources of information. Talking to oth-
                out the two or three questions that seem        ers who have been through treatment
                the most urgent. Be sure to ask your            can help you to get a better understand-
                doctor to read them all, however,               ing of what to expect before you begin.
                because he or she may see other ques-           If you would like to find out if there is
                tions on the list that are more important       an ALCASE Living with Lung Cancer
                than you realize. For example, you              Support Group in your area, or are
                might have a question about a symp-             interested in starting a group, contact
                tom that indicates a problem that your          ALCASE.
                doctor needs to know about.

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                                                ular treatment options, then taking
   Talking to others who have been              part in making decisions, may help
   through treatment can help you to get        you to sort out your own priorities.
   a better understanding of what to
   expect before you begin.
                                            The following is a list of commonly
                                            asked questions that you might consid-
Other Sources of Information                er asking your doctor or nurse. You
ALCASE also has the Phone Buddies           also may have many questions of your
program. Phone Buddies is a peer- t o -     own. Remember: there is no such thing
peer support program through which          as a stupid question. If you want to
newly diagnosed patients are matched        know, ask.
with a Phone Buddy, someone who has
already lived through diagnosis and         •   In nonmedical terms, what is
treatment for the disease. Phone                wrong with me?
Buddies are able to provide support and
education for people beginning the          •   Is it certain, without any doubt, that
journey through lung cancer and for             I have lung cancer?
their families. ALCASE also has a toll-
free information line, 800-298-2436.        •   What is the specific form of lung
                                                cancer I have?
The National Cancer Institute also has
                                            •   What is the stage of my disease?
an information line: 800-4-CANCER.
The radio show “The Group Room,”
                                            •   What type of treatment do you rec-
which airs on Sundays in Los Angeles            ommend?
and elsewhere in the country, frequent-
ly addresses lung cancer and accepts        •   What are the best treatment options
“call-ins” from the public during the           for my stage of disease?
program. In addition, CancerCare in
New York offers periodic one-hour           •   What medications are you prescrib-
telephone lectures on lung cancer. Call         ing and why?
them for information at 212-302-2400.
                                            •   What is the goal of my treatment?
Some Basic Questions to Ask                     (Some treatments are for attempt-
The more you know about your dis-               ing cure, others slow down the
ease, the less confused and anxious you         progress of the cancer or reduce
will be over your treatment. Under-             pain.)
standing the reasons for particular
treatment options, then taking part in      •   How long will this treatment last?
making decisions, may help you to sort
out your own priorities.                    •   What are the names and dosages of
                                                the drugs you are recommending?

   Understanding the reasons for partic -   •   What should I do if I miss a dose?

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                •   How long and how often will I          •   Are there foods or liquids I should
                    need to have treatment?                    plan to take or avoid?

                •   Specifically, how will the treatment   •   How long do I need to rest after a
                    affect the disease?                        treatment session before I can
                                                               return to work or other activities?
                •   How will you know if the treatment
                    is working?                            •   Can I drive myself home?

                •   What are the benefits of the treat-    •   Approximately how long will treat-
                    ment you are recommending?                 ment last?

                •   What will happen if I don’t take       •   How can I expect my life to change
                    treatment?                                 during treatment and how should I
                                                               plan ahead for this?
                •   What are the possible risks and side
                                                           •   Should I rearrange work, child-
                    effects of the treatment?
                                                               care, travel, financial, or other
                                                               commitments?
                •   Are there other treatment options?
                                                           •   What costs will I have from this
                •   What are the benefits of the other
                                                               treatment?
                    treatments, and what are their pos-
                    sible risks and side effects?          •   Once I am in remission, how often
                                                               will I need follow-up visits, and
                •   Are there treatments for my condi-         what will these consist of?
                    tion that are popular, but not
                    approved? If so, why aren’t they       •   Is there any way to predict whether
                    approved? What do you think of             the cancer is likely to return? If so,
                    them? (You may also want to ask            when and how is this prediction
                    about this if you hear about treat-        made?
                    ments your physician hasn’t men-
                    tioned.)                               •   If it does return, what would the
                                                               signs be? How could I distinguish
                •   How can I schedule my treatment            these signs from symptoms that
                    to meet my needs, such as work,            come from other causes?
                    special dates, or other needs?
                                                           •   If other specialists will be taking
                •   What should I expect during treat-         part in my care, who will coordi-
                    ment?                                      nate my overall treatment? Who
                                                               should I contact about which kinds
                •   What actually happens?                     of questions?

                •   Are there any type of clothes I        •   Would an institution that special-
                    should wear or avoid wearing?              izes in cancer treatment, such as a


        11.18
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    cancer center or medical school,           insurance records. As mentioned in
    o ffer more kinds of treatment?            earlier chapters, we have provided a
    Would I get better care? Would it          pocket in the back of this manual for
    cost more, and if so, how much?            that purpose. You can create your own
                                               medical records file by contacting the
•   Is it better to be treated at a facility   medical records department of the hos-
    that deals with large numbers of           pitals or clinics where you received or
    lung cancer patients, or one that          are receiving treatment. Frequently,
    specializes in the kind of treatment       your request will need to be in writing.
    you have recommended?
                                                   “Get a business card from every clin -
•   How close is the nearest treatment             ic you go to for care. This will make
    center? Would you work with me                 it easier to keep track of your medical
    there, or work together with their             history.”
    staff?                                                        — lung cancer survivor


Remember, your healthcare team is
there to work with and for you. This           If possible, get copies of all treatment
includes giving you answers to your            records and tests, including x-rays and
questions.                                     lab reports. These items will be helpful
                                               in many situations, but most important-
                                               ly, they will provide you with an easily
                                               accessible historical record of your
OTHER PRACTICAL                                experience with the disease, its treat-
ISSUES                                         ments and the side effects of those
                                               treatments, as well as a history of med-
There are many, many practical issues          ications you are taking.
anyone living with lung cancer must
deal with. We’ve attempted to cover            Whenever reasonable, make notes
the major ones here. Of course, you            about your experience directly on the
may have concerns that we have not             records or on a sheet of paper that you
addressed. The information that is             staple to the record. For example, if
included is intended to provide you            you went in for a diagnostic test and
with a starting point in your informa-         found it to be very unpleasant, or felt
tion gathering. Remember, there are            that it was not useful, you can let your
options; you just need to look for them.       doctor know about it regardless of how
                                               long ago it was done. Making notes
                                               will be particularly useful as the num-
Maintaining Your Medical                       ber of tests you undergo increase, mak-
                                               ing it more difficult to remember
Records
                                               details about each one.

It is always recommended that you              Keeping a log of your reactions to
keep your own set of medical and               medications can be helpful in deter-


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                mining which therapies may or may              diagnostic tests than there have been in
                not be beneficial. Your doctor will            the past. Many of these have not been
                have a reference for making recom-             officially approved for lung cancer but
                mendations and you will have a record          are used and accepted as standard med-
                of your reactions to specific drugs.           ical practice.


                Filing Insurance Claims and                       There may be a number of reasons
                                                                  why your insurance company does not
                Appealing Rejections                              cover what your physician considers
                                                                  the best available treatment. If cover -
                People often do not get the most from             age is denied, appeal the decision.
                their insurance because they don’t real-          Don’t be afraid to appeal all the way
                                                                  to the top of the organization.
                ize what is covered, or because they are
                overwhelmed by the paperwork
                involved. However, it is important to
                file all claims. Hospitals and many med-       If a claim is denied that you and/or
                ical offices will file claims to your insur-   your doctor feel should be covered, it
                ance company. If you are filing claims         may help to have your doctor write an
                yourself and you are not sure something        explanation of how your treatment is
                is covered, file the claim anyway. It may      consistent with standard practice. It
                be covered, but if not, the cost may pos-      also may help to attach copies of sup-
                sibly be applied to your deductible.           porting medical articles.
                There is no harm in trying.
                                                               If the care provider’s fee is challenged
                There may be a number of reasons why           as being above what is customary,
                your insurance company does not                check with other local providers to find
                cover what your physician considers            out if their fees for that procedure are
                the best available treatment. The insur-       similar to what you were charged. If
                ance company may not be up to date on          you need assistance, someone at your
                the latest treatments, or, they may not        doctor’s office who is responsible for
                share your doctors views of the differ-        billing should be able to help with mat-
                ence between standard and experimen-           ters of this type.
                tal treatments.
                                                               You may be able to file an appeal if
                Sometimes, insurance companies try to          your claim is denied. Find out who in
                keep the costs of treatment down by            the insurance company made the deci-
                only covering older, less expensive            sion to reject your claim and ask to
                treatments. They may also refuse to            speak to someone higher up in the
                pay for treatments that have not been          organization to request coverage. If
                approved by the FDA. These issues are          you believe your claim is being denied
                of particular concern to people with           unfairly, go to the top of the organiza-
                lung cancer because there are now              tion, if necessary. You may also contact
                many more therapeutic options and              the insurance company to find out


        11.20
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about their appeals process.                   Also, keep track of expenses and
                                               claims, including such things as
                                               mileage to and from all medically relat-
    Documenting everything and submit -        ed appointments. You may be able to
    ting requests via written correspon -      deduct a portion of your medical
    dence will be extremely helpful if you
    are ever in the situation of having to
                                               expenses from your federal and state
    appeal a rejected claim.                   tax debt. The Internal Revenue Service
                                               can help you to determine which
                                               expenses are tax deductible.
Documenting everything and submit-
ting requests in writing will be extreme-      When you receive your statement from
ly helpful if you are ever in the situation    your insurance company, review it to
of having to appeal a rejected claim.          make sure that everything that is sup-
                                               posed to be included is included. Call
Keep copies of all correspondence              the insurance company immediately if
you have with insurance companies,             you find a mistake and ask them to cor-
Social Security offices, and disability        rect it and send you a new statement.
o ffices. Document any and all conver-         Review the new statement to make sure
sations with insurance companies and           that all changes have been made and
billing agencies. Make sure to record          you are satisfied with the total.
the date, time, and the name of the
person to whom you spoke by tele-              The insurance company will instruct
phone or in person. Keep a record of           you to pay the healthcare provider
what you discussed. If possible, con-          whatever amount is not covered by
sider keeping a notebook by the tele-          insurance. The insurance company nor-
phone for easy note taking during tele-        mally sends the healthcare provider a
phone conversations.                           reimbursement check along with a
                                               statement similar or identical to the one
These records will be especially use-          you receive. Normally, your healthcare
ful if you need to file an insurance           provider will send you an invoice for
appeal. Your state insurance commis-           any remainder that is due. As most peo-
s i o n e r’s office can be of assistance in   ple with cancer know, medical bills can
this situation.                                pile up very quickly and become over-
                                               whelming. If you are unable to pay the
Keeping Accurate Records                       full amount or if paying the full amount
of Charges                                     will cause you personal hardship, call
It is important to track charges from          your doctor and request to make
both the doctor and the insurance com-         installment payments. Most healthcare
pany. Ask your doctor’s office for a           providers are aware of the financial
receipt each time you go for an                burden of healthcare and are usually
appointment. Before leaving the office,        very willing to work out a reasonable
review the bill to make sure everything        payment schedule.
is correct.


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                Managing your treatment records and            policy. Read it over carefully, especial-
                filing insurance claims can take a lot of      ly the fine print. Insurance policies can
                time and energy. To help, many sur-            be lengthy so you may want to consid-
                vivors choose to turn this responsibili-       er enlisting the help of one or more
                ty over to someone else. Family mem-           trusted individuals to help you by each
                bers and trusted friends are good peo-         taking a piece to review. It is better to
                ple to ask for assistance. Often, they         ask for help than to be overwhelmed
                too, may feel a sense of helplessness          and miss something important that will
                because of your illness and may wel-           affect the quality of your care.
                come the opportunity to assist you. In
                addition, a social worker, private com-        You will need to know if your policy
                panies, or community service organiza-         covers x-rays, lab costs, mental health
                tions may be able to help. Some private        professionals, and home health care.
                companies check bills, file claims,            You will also need to know the amount
                track deductibles, and advocate for            of your deductible, and whether it is
                their clients. You can also check with         for all types of care, or if it changes for
                local cancer organizations for addition-       the various types of medical care you
                al sources of help.                            may need.

                                                               Types of Health Insurance
                Health Insurance                               The following is a brief overview of
                                                               the types of insurance you may have or
                                                               that may be available to you.
                   It is important to understand exactly
                   what your health insurance covers
                   and what you will be expected to pay.           It is very important at this time to
                                                                   maintain your healthcare coverage.


                Even with good health insurance cov-
                erage, cancer and its treatment can be a       Individual Policies. It is very impor-
                financial burden. You need to under-           tant at this time to maintain your
                stand exactly what your health insur-          healthcare coverage. If you have an
                ance covers and what you will be               individual policy for health insurance
                expected to pay. When it comes to              and you receive a lung cancer diagno-
                health insurance, don’t assume any-            sis, the costs of your premiums may
                thing. Every policy and healthcare plan        increase, your benefits may change
                is different, and liability for costs can      (decrease), or you may even have your
                vary widely. Adding to the confusion           health insurance policy canceled. If
                is the constantly changing healthcare          you drop your coverage, or are
                industry. You will want to thoroughly          dropped, it will be more difficult to
                understand your coverage before                reestablish it later. Do what you can to
                agreeing to any kind of treatment.             maintain your coverage.

                Be sure to get a copy of your insurance        Many policies, whether individual or

        11.22
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group, contain per-illness caps and life-   you are diagnosed with lung cancer
time caps. In the insurance business,       before joining a plan or you change to
this is called “capitation.” A policy       a new plan, you are considered to have
may have a per-illness cap of $50,000,      a pre-existing condition. If this is the
$100,000, or $500,000. The cap is the       case, you may have to pay your own
total amount the insurance company          premiums or, more likely, wait for a
will pay for a certain condition. This      period of months or even years before
may not provide enough coverage for         any cancer-related claims will be cov-
someone with lung cancer and can            ered.
cause major problems. Check your
existing policy to see if you have caps.    Many companies, especially larger cor-
                                            porations, have agreements with their
If you are shopping for an individual       insurance carriers for open enrollment.
policy, an independent insurance agent      Open enrollment periods usually occur
can do some of the shopping for you         once a year and allow employees to
and explain the pros and cons of vari-      change insurance programs. Preexisting
ous policies. Make sure the agent and       conditions are often waived during open
the agency you choose are licensed by       enrollment periods. These open enroll-
your state to sell insurance and that you   ments may provide excellent opportu-
have full confidence in them.               nities to change or obtain health insur-
                                            ance coverage, especially for those
Try to purchase a policy that is guaran-    with cancer.
teed renewable. These policies guaran-
tee your right to renew the policy if you   Before making any decision about
pay your premiums. Also, with a guar-       changing or joining a health plan,
anteed renewable policy your premi-         review all the options available. It may
ums will not increase unless there is an    be advantageous to join or change to a
across-the-board premium increase for       plan that has a higher copayment, but
all policy holders. Many insurance          has a much higher per-illness or life-
companies will not renew a policy after     time cap. Or, you may decide that a
someone has been diagnosed with can-        lower paying job at a different compa-
cer or other serious illnesses.             ny with much better and immediately
                                            accessible benefits would be a better
Group Policies. One of the best insur-      match for your situation.
ance options is a group health policy.
Group policies may be offered through       Having a group health insurance policy
fraternal, political, and professional      through a small company employer
o rganizations, as well as through          may present problems for both you and
employers.                                  your employer. Consider asking if they
                                            will match the premium paid for other
Group policies often offer more bene-       employees health insurance toward the
fits than do individual policies. They      premiums of a high-risk pool. This
are also less likely to be canceled or      could allow you to have reasonable-to-
have their rates increased. However, if     good health coverage with a very

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                reduced cost to you while allowing              As a member of an HMO, it is espe-
                your employer to maintain its lower             cially important to understand all
                group rates and secure employment               aspects of your disease and treatment
                and benefits for all other employees.           options so that you may advocate on
                High-risk pools are discussed later in          your own behalf.
                this section.
                                                                Other Health Insurance Options. You
                If you change employment, take                  may feel that once you receive a diag-
                advantage of the COBRA plan through             nosis of lung cancer that you will never
                your previous employer. Always make             be able to find health insurance again.
                sure to pay your premiums on time.              This is not necessarily the case.
                                                                Remember, there are always options.
                Health Maintenance Organizations. A
                health maintenance organization, or             Indemnity Policies. Some individual
                HMO, is a type of managed healthcare            plans and a few employers still opt for
                plan in which members (patients) pay a          indemnity insurance, but the cost is
                set fee to an organization. The HMO             making it quite prohibitive. This type
                then provides healthcare through their          of insurance plan allows the insuree
                approved doctors and other providers.           greater freedom in choosing healthcare
                In HMOs, a certain amount of money              providers. Coverage is usually more
                is allocated for members’ treatment. If         liberal than that from managed care
                the money isn’t spent, the doctor and           plans. Some indemnity plans have a list
                the organization keep it. If your doctor        of “preferred” providers whose cover-
                spends that money on treatments for             age is greater if the insuree uses these
                patients, it is, essentially, money out of      professionals.
                the doctors’ and the org a n i z a t i o n ’s
                pockets. Some believe this is an effec-         High-Risk Pools. Currently, just over
                tive way to hold down spiraling med-            half of the states in the United States
                ical costs by removing the incentives           have high-risk pools set up to sell
                for unnecessary tests and treatments,           health insurance to residents who are
                and focusing on prevention instead.             considered high risk because of a seri-
                Others see it as a conflict of interest for     ous illness. The rates may be high and
                the doctors.                                    the coverage may not be as good as
                                                                other policies, though many states do
                One of the benefits of a managed care           offer competitive rates and benefits.
                program is that you do not have to file         Some high-risk pools only require that
                claims, and out-of-pocket expenses are          you provide proof of uninsurability,
                kept to a minimum. However, these               that is, a letter from a insurance com-
                plans can be restrictive and you may            pany refusing to insure you because of
                find yourself limited to a select list of       your health status.
                hospitals and doctors who may not
                have expertise in a particular treatment        Residency requirements and conditions
                or procedure that you may want.                 for eligibility vary from state to state.


        11.24
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You may be placed on a waiting list, so              hospital services, durable medical
it is advisable to check into the pro-               equipment, and a number of other
gram in your state before you think you              medical services and supplies that
will need it.                                        are not covered by Part A. Part B
                                                     has monthly premiums, deductibles,
States may also open windows of time                 and coinsurance amounts that must
when all major insurance providers                   be covered by another insurance
must accept all uninsured people, pro-               plan. Premium, deductible, and
vided they can pay the premiums. Yo u                coinsurance amounts are set each
can get more information about these                 year based on formulas established
and other issues related to insurance by             by law.
contacting your state insurance commis-
s i o n e r’s office. Check your local tele-     Medicare provides basic protection
phone listings under State Government.           against the cost of healthcare, but it
                                                 will not pay all of your medical
M e d i c a r e. The Medicare program is a       expenses. For example, Medicare will
federal health insurance program for             not pay for self-administered medica-
people 65 years of age or older and cer-         tions like pills or most long-term care
tain disabled people. It is run by the           expenses. Medicare pays if you receive
Healthcare Financing Administration              the medication, such as an injection, in
( H C FA) of the United States Department        your doctor’s office. In addition,
of Health and Human Services.                    Medicare pays for many services cov-
                                                 ered by hospice.
There are two parts to the Medicare
program:                                         The federal Medicare program is cur-
                                                 rently experimenting with managed
•   Hospital Insurance (Part A) helps            care. If you are enrolled in Part A and
    pay for inpatient hospital care, inpa-       Part B, you are eligible to enroll in a
    tient care in a skilled nursing facility,    Medicare-contracted HMO, if there is
    home healthcare, and hospice care.           one in your area. Medicare HMOs
    You are automatically covered under          often provide more comprehensive
    Part A when you enroll for Social            coverage, sometimes at the same
    S e c u r i t y. Part A has a large annual   monthly fees as traditional medical
    deductible and coinsurance amounts           care.
    that you must pay yourself or
    through coverage by another insur-           If you disagree with a decision on the
    ance plan. Premium, deductible, and          amount Medicare will pay on a claim,
    coinsurance amounts are set each             or whether they will cover the service
    year based on formulas established           at all, you have the right to appeal the
    by law.                                      decision.

•   Medical Insurance (Part B) helps             Medicaid. You may also be eligible for
    pay for doctors’services, outpatient         Medicaid benefits. Medicaid provides


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                health insurance for low-income and         Military Insurance and Clinical Studies.
                indigent people, individuals who are        All military personnel and their depen-
                disabled or blind, and certain groups of    dents are covered through an insurance
                children. Services are operated by state    program called CHAMPUS.
                governments under federal guidelines,
                and the benefits and conditions vary        The Department of Defense (DOD)
                widely from state to state. To apply for    and the National Cancer Institute (NCI)
                eligibility, contact your state or local    have signed an Interagency Agreement
                department of social services. You’ll       that offers TRICARE/CHAMPUS-eli-
                need to provide information about your      gible patients access to NCI-sponsored
                income and assets. If you plan to use       clinical trials of new cancer treatments.
                Medicaid, it may be helpful to make a       TRICARE/CHAMPUS patients who
                list of doctors and hospitals that accept   enroll in any NCI-sponsored Phase II
                Medicaid ahead of time. Some doctors        or Phase III treatment clinical study,
                and hospitals may refuse to treat you       nationwide, will have their medical
                because they are paid less by Medicaid      care costs covered by CHAMPUS.
                than by other insurers.                     This agreement represents an expan-
                                                            sion of an earlier project launched in
                Catastrophic Policies. Catastrophic         1994 that authorized CHAMPUS to
                policies are another possibility for cov-   pay for CHAMPUS-eligible breast
                erage. Also known as “excess major          cancer patients participating in certain
                medical,” these policies are especially     NCI Phase III clinical studies.
                helpful if your health insurance plan
                has low lifetime caps. Catastrophic         Under the project, all standard TRI-
                policies usually have very high             CARE/CHAMPUS rules, costs shares,
                deductibles ($10,000 to $50,000), but       and deductibles apply to patients seeking
                the premiums tend to be low.                care. TRICARE/CHAMPUS patients
                                                            considering participation in an NCI-
                The policies usually cover 100 percent      sponsored treatment must first have their
                of expenses after the deductible has        physician confirm with PGBA CHAM-
                been met. If you are shopping for a         PUS (DOD contractor designated as the
                catastrophic policy, look for a policy      national contact for physicians and
                that will apply expenses paid by your       patients) that the study meets the criteria
                other health insurance plans toward         of the demonstration project and must
                your deductible for the catastrophic        receive preauthorization for evaluation
                plan. These policies are not always         of the patient. Physicians at that treat-
                easy to find for cancer survivors. Many     ment institution will determine whether
                companies will not sell this kind of pol-   you are eligible for the study.
                icy to a cancer survivor until five years
                after the last cancer treatment. They are   For more information, call the NCI
                also likely to include a waiting period     Cancer Information Service (CIS) at
                of two or more years.                       8 0 0-4-CANCER (800-4 2 2-6237) or
                                                            PGBA CHAMPUS at 800-779-3060.


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Military Veterans’ Benefits. If you are               COBRA entitles you to 18 months of
a military veteran and are diagnosed                  coverage with the same health insur-
with lung cancer, you may be eligible                 ance benefits that are offered to other
to receive medical disability payments.               employees. (If you lose your job due to
You will need to file a claim with the                disability and are eligible for Social
Department of Veterans Affairs to see                 Security benefits, you are entitled to
if your diagnosis is service-related.                 coverage for 29 months.) Dependents
                                                      covered under the plan are entitled to
If you served in Vietnam, your diagno-                36 months of coverage. While the
sis may be connected to the use of A g e n t          employer must offer you the opportuni-
Orange, the chemical defoliant widely                 ty to continue coverage, you are
used to clear jungle areas in Vi e t n a m .          responsible for paying the premiums.
Under government policy, all 2.6 mil-                 COBRA coverage may be a short-term
lion veterans who served in Vietnam                   option, but it is only a stop-gap mea-
and adjacent waters are assumed to have               sure to buy you time to find other
been exposed to the herbicide.                        long-term health insurance.
I n t e r e s t i n g l y, no regulations have been   In 1996, President Clinton signed into
established regarding the tobacco link                the law the Health Insurance
to lung cancer in military veterans.                  Portability and Accountability Act. The
Cigarettes were provided free or at low               act addresses a number of issues that
cost to military personnel and ciga-                  may be of interest to people affected by
rette breaks were both encouraged and                 lung cancer. For example, the Act:
supported.                                            • provides for increased portability
                                                          through limitation on preexisting
For questions about Veterans’ benefits                    condition exclusions
call the Department of Veterans Affairs               • prohibits discrimination against
at 800-827-1000.                                          individual participants and benefi-
                                                          ciaries based on health status, both
Health Insurance and Job Changes                          in eligibility to enroll and in premi-
The Consolidated Omnibus Budget                           um contributions
Reconciliation Act (COBRA), a feder-                  • provides for guaranteed renewabil-
al law, requires that employers who                       ity in group health plans which are
o ffer health insurance benefits and                      multiple employer plans or multi-
employ 20 or more people must contin-                     ple employer welfare arrangements
ue to allow employees and their depen-
dents to maintain their health, dental,               Ask your oncology social worker if he
and vision insurance through the com-                 or she has information on this legisla-
pany’s group policy after the employee                tion or contact the office of your feder-
leaves the company. This also applies                 al senator or representative. You can
to employees whose hours are reduced                  also review the bill via the
to the point that they are no longer eli-             Internet (the Internet address is
gible for insurance benefits.                         http://thomas.loc.gov). Search by bill


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                number HR3103 under Bills enacted           disability coverage is required by the
                into law by the 104th Congress. Be          state and premiums are deducted from
                sure to review all aspects of the law       your wages. Some employers provide
                provisions and exclusions before mak-       disability coverage along with health
                ing any decisions.                          insurance benefits at no charge to
                                                            employees. Other companies may offer
                If you do decide to leave a job or          health and disability insurance, but
                change to a new job, exercise the           require employees to pay the premiums
                option to continue your life insurance      through payroll deductions.
                coverage if that option is available to
                you. You may wish to viaticate the pol-     If you have disability coverage and are
                icy later if you need additional income.    unable to continue working, it is
                We discuss viatical settlements later in    important to notify the insurance
                this section.                               provider soon after diagnosis to deter-
                                                            mine your status and to begin applying
                Some policies can be converted from a       for benefits. During the time you are
                group plan to an individual plan when       considered to be disabled, your premi-
                an employee leaves a company. You           ums for disability and life insurance
                can check with your employer about          policies may be waived. Check your
                this. These policies are usually more       policy to find out if this applies. If it is
                expensive, and frequently offer less        not written into the policy, you can
                coverage than group policies. If you        contact the policy provider and ask
                are considering this option, check for      about this.
                maximum coverage limits (lifetime
                and per illness) and exclusions for         Life Insurance
                pre-existing conditions or for particular   Getting life insurance after a diagnosis
                diseases.                                   of lung cancer can be challenging, at
                                                            best. However, people with cancer are
                                                            not the only ones being scrutinized
                Other Types of Insurance and                when applying for life insurance.
                Financial Options                           Everyone who applies for life insur-
                                                            ance will have their medical history
                There are a number of other types of        reviewed in fine detail. It is standard
                insurance, and new financial options        practice to ask if the applicant has been
                that have developed especially for peo-     treated for cancer or any other serious
                ple with chronic, possibly life-threaten-   illness in the past 1 to 5 years and if he
                ing disease.                                or she has been denied coverage. These
                                                            questions must be answered honestly
                Disability Insurance                        or there is a risk that the insurance
                If you are unable to work, disability       company will not pay on the grounds
                insurance may provide you with              of fraud.
                income. These policiess usually have a
                waiting period of at least one month.       Even if your health history is not good,
                In most states, if you are employed,        there are legitimate ways you can get

        11.28
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life insurance. Some options for             option for you. Guaranteed life insur-
obtaining life insurance are:                ance policies ask no health questions
                                             and no physical examination is required.
•   Try to find a group plan. Employers      H o w e v e r, they are costly and there is a
    and other organizations often offer      specified time for survival, usually 1 to
    group life insurance in much the         5 years, in order for your beneficiaries
    same way that they offer group           to collect the face value of the policy.
    health insurance. Many companies,
    especially larger corporations, offer
    graded options for purchasing            Work-Related Issues
    insurance. For example, you may
    be able to purchase life insurance in    Work is an important aspect of many
    amounts ranging from $10,000 to          peoples’lives. Work meets many phys-
    $50,000 without being asked any          ical, psychological, and social needs, in
    medical questions. Conversely, any       addition to providing financial security.
    amount over $50,000 would                Many people with cancer continue to
    require a medical inquiry. You sim-      work during treatment, or return to
    ply choose the option with premi-        work after undergoing treatment.
    ums you can afford to pay, if
    required, that would provide you
                                                 Getting support from others in the
    with the most benefit without the            workplace can make a big difference
    risk of a medical inquiry.                   in easing your return to work.

•   If you can’t find a traditional policy
    with full death benefits, consider a     Unfortunately, an estimated 25% of all
    policy with limited benefits, known      cancer survivors experience some type
    as a graded policy. The death ben-       of job discrimination. Even if you do
    efits from a graded policy start         not experience discrimination, it can be
    small and increase incrementally         helpful to consider how you would
    over two years until the full amount     handle work-related issues that might
    is reached at the end of the second      come up.
    year.
                                             The disruption caused by a diagnosis of
Life insurance can be very important if      lung cancer may lead you to re-evalu-
you have children, especially if they are    ate, and possibly change, some of your
still living at home; a spouse or partner;   values and goals. This may be a time to
or a parent who depends on your              reconsider what kinds of work you
income for survival. If you don’t have       want to do, and are able to do.
any of these obligations, you may want       Vocational evaluation and training is
to consider other forms of investment.       available for people considering career
If you do have these obligations, but are    changes.
unable to get any form of insurance,
guaranteed life insurance may be an          If you are currently employed, it can be


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                helpful to seek out resources that deal       experience various kinds of discrimina-
                specifically with employment issues           tion. Discrimination can include being
                for cancer survivors. For example, it is      passed over for new jobs or promo-
                useful to know that, when seeking a           tions; being fired or laid off; being
                job, you do not have to disclose that         transferred or demoted; having hours
                you are a cancer survivor, unless it          cut, resulting in ineligibility for bene-
                directly affects your ability to do the       fits; employer’s unwillingness to
                job. However, you should not lie or           accommodate needs (for example,
                conceal the truth if asked about your         treatment schedules); or being excluded
                health history on job or insurance            by coworkers.
                applications.
                                                              If you feel that you have been discrim-
                                                              inated against because of your cancer
                    Many people with cancer continue to       diagnosis, there are a number of things
                    work during treatment, or return to       you can do including:
                    work after undergoing treatment.          • keeping written records of all job
                                                                  actions, including performance
                                                                  evaluations, promotions or demo-
                Getting support from others in the                tions, and any comments, conversa-
                workplace can make a big difference in            tions, memos, or other exchanges
                easing your return to work. Some of               that you think reflect discrimina-
                the issues you may face upon returning            tion, including who was involved in
                to work include what to tell your                 each
                coworkers about the disease, its treat-       • asking your physician to write a let-
                ment, and your current health status.             ter to your employer discussing the
                You will also have to deal with your              type of cancer you have, explaining
                colleagues’ reactions. These reactions            how this does/does not affect your
                might include simply avoiding the                 job performance
                topic of lung cancer, telling you cancer      • discussing options, such as flextime
                stories, or asking uncomfortable or               and job sharing with your employer
                inappropriate questions. You may find         • discussing your feelings with your
                it helpful to plan ahead for any aspects          s u p e r v i s o r, letting him or her know
                of returning to work that you think               you are aware of your rights and
                might be difficult.                               would rather work out a solution
                                                                  without resorting to legal procedures
                Discrimination on the Job                     • asking coworkers to support you in
                Cancer is not a contagious disease like           claiming your rights
                a cold, the flu, or chicken pox. No one
                can catch cancer by being around some-        The Americans with Disabilities Act
                one who has it. Yet, a cancer survivor        (ADA)
                may face discrimination, obvious or           The Americans with Disabilities Act
                subtle, due to false beliefs about cancer.    (ADA) is an important civil rights law
                Some people don’t experience any dis-         that directly benefits people with lung
                crimination at work, while others may         cancer. Under the Act, anyone who has

        11.30
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or has had cancer is considered dis-              Society (ACS) and request their booklet,
abled. Caregivers and/or family mem-              Americans With Disabilities Act: Legal
bers of someone who has or has had                P rotection For Cancer Patients A g a i n s t
cancer may also be covered.                       Employment Discrimination. Their
                                                  t o l l-free number is 800-A C S-2 3 4 5 .
The law applies to all private employers
of 15 or more employees. The A D Aa l s o         Vocational Rehabilitation
applies to state and local government             Public and private agencies can provide
agencies, employment agencies, labor              vocational rehabilitation. Each state has
o rganizations, joint labor-m a n a g e m e n t   a vocational rehabilitation agency that
committees, religious bodies that are             provides services to those diagnosed
also employers, and Congress. United              with cancer. Agency services may
States federal government employees               include job evaluation, training and
are covered under a different law.                counseling, financial assistance (which
                                                  may include school/college costs), job
The law covers a variety of subjects.             placement services, and providing spe-
It’s useful to know that:                         cial equipment or recommendations
• an employer cannot refuse to hire               about job accommodations.
     or not to continue to employ a per-
     son with a disability, as long as that
     person is otherwise able and quali-          Managing Your Finances
     fied to do the job
• an employee cannot be demoted or                Depending on your financial status and
     fired because of a disability. The           holdings, you may want to consider
     law also states that an employee             seeking the advice of a professional
     cannot be fired because the employ-          financial planner. If you do decide to
     er thinks there is or will be a dis-         utilize a financial planner, you will
     ability                                      need to know as much as possible
• an employer cannot refuse insur-                about your complete financial status.
     ance or other benefits to an employ-         Otherwise, you will not be able to eval-
     ee with a disability, when the same          uate whether a financial planner’s rec-
     insurance or other benefits are pro-         ommendations are right for you.
     vided to other employees
• an employer must provide reason-
     able accommodations, which would                 A good financial planner will review
     include retraining; special devices,             your financial situation and make rec -
     such as a knob to help turn a wheel;             ommendations based on what will
                                                      p rovide you with the most benefit
     a change in some other part of the               based on your unique situation.
     job, for example, a more flexible
     schedule
                                                  A good financial planner will review
For more information about the A D A              your financial situation and make rec-
you may contact the American Cancer               ommendations based on what will pro-

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                vide you with the most benefit based        If you wish to maintain control of your
                on your unique situation.                   affairs for as long as possible, it is a
                                                            good idea to specify that the power of
                When hiring a financial planner, or any     attorney only becomes effective once
                professional, it is a good idea to check    your physician certifies that you have
                their background and credentials. If        become incapacitated.
                possible, speak with clients of any
                financial planner you are considering.      Talk to your physician about this ahead
                                                            of time to clearly identify what will
                Not all individuals who call themselves     constitute incapacity. You will want to
                financial planners have taken special-      make sure that your physician knows
                ized courses in all aspects of financial    you well enough to be able to make a
                planning. Many states do not regulate       reasonable decision about whether you
                their financial planning industry. Keep     really are or are not able to handle your
                in mind that many financial planners        own affairs. To give this power to a
                make all or a portion of their income on    physician or an attorney who does not
                commissions. While many financial           know you well may cause unforeseen
                planners are professional, some are not.    difficulties.
                If you feel you are being pushed to buy
                a lot of financial products, your advisor   Obtaining Needed Cash
                may be serving someone else’s inter-        Several new options for obtaining cash
                ests rather than yours.                     for treatment have developed in the
                                                            past few years. None is without cost to
                Durable Power of Attorney for               you and your beneficiaries. Two are
                Financial Decisions                         reviewed here, both of which may be
                A durable power of attorney for             helpful if your finances or your health
                finances is a simple, inexpensive, and      insurance is limited.
                reliable way to give someone the legal
                authority to make financial decisions       Reverse Mortgages. Reverse mort-
                on your behalf should you be unable to      gages are very different from tradition-
                do so. The person who has this author-      al mortgages. It is important that you
                ity is called your attorney-in-fact or,     understand all the limitations and ram-
                sometimes, your agent. This person          ifications of such a loan. This is even
                does not have to be an attorney-at-law.     more crucial because this type of loan
                Most commonly this person is a family       is not common, which means that there
                member or trusted friend.                   are fewer people who are available to
                                                            give you expert advice.
                Durable powers of attorney can be
                designed to give as little or as much       In brief, a reverse mortgage allows you
                authority and decision-making power         to borrow the equity in your home.
                as you want. It is important to clearly     Reverse mortgages are often paid in one
                understand when the power of attorney       lump sum, but may be paid as a regular
                becomes effective.                          monthly cash advance or as a credit line.


        11.32
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Reverse mortgages are available to         proceeds received after December 31,
people 62 years of age or older.           1996. The tax-free provision applies
Borrowers must occupy the home as a        only to people whose purchasing com-
primary residence. Mobile homes and        pany is licensed by the state in which
cooperatives have historically been        they live. Proceeds should be used for
excluded from this type of loan.           costs incurred by the payee for quali-
                                           fied long-term care services provided
Since you will continue to own your        for the insured for such period.
home, you will still be responsible for
all taxes and related expenses. There      Prior to pursuing a viatical settlement,
are many reverse mortgage products to      review all of your options to make sure
choose from so the amount of cash you      you have not overlooked another possi-
receive and the amount of cash your        ble source of income. For example, are
heirs would receive at your death will     there any government-sponsored finan-
depend on the product you select. If a     cial aid programs that you may qualify
reverse mortgage is an option you          for? Does your life insurance policy
would like to consider, contact a few of   contain a provision that allows you to
your local banks to see if this type of    discontinue making premiums while
loan is available.                         continuing coverage in full force?
                                           Some policies allow you to use funds
Viatical Settlements. Over the last        you have accumulated for other uses,
several years, a new industry, called      including paying premiums.
viaticals, has developed. Viatical com-
panies purchase life insurance policies    Some basic guidelines if you are con-
from people who have a limited life        sidering a viatical settlement include:
expectancy.                                • talking to your healthcare providers
                                               about your life expectancy
Since the first viatical settlement was    • getting at least five bids from com-
made almost a decade ago, the govern-          peting viatical companies
ment has provided some regulation for      • seeking professional, legal, and
the industry.                                  financial advice from a tax attorney
There are several viatical companies           or an accountant; know the tax con-
from which to choose. Be sure to               sequences as well as how payments
investigate thoroughly any company             affect your eligibility for any other
you choose to do business with. The            entitlement programs such as
Health Insurance Portability and               Medicaid
Accountability Act of 1996 contains a      • weighing the immediate need for
provision that will allow people diag-         maintaining your standard of living
nosed with a terminal illness to get an        and quality of life against the future
accelerated death benefit, or a viatical       needs of your dependents or bene-
settlement, on their insurance policies        ficiaries
without having to pay income tax on        • asking your insurance company if
the proceeds. The new rules apply to           you can sell only part of your policy


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                Other Financial Assistance Options                  that arrange free or reduced-cost air
                As we mentioned in the introduction to              transportation for cancer patients going
                this chapter, we want to underscore the             to and from treatment. Talk with a med-
                fact that there are many options avail-             ical social worker or contact the
                able to you, from treatment to financial            Corporate Angel Network Program at
                assistance. The following is a brief                9 1 4-3 2 8-1313 or the National Patient
                review of some of the financial aid                 Air Transport Hotline at 800-2 9 6-1 2 1 7 .
                options that you may find interesting               There are also organizations that provide
                and useful. This information may                    lodging for patients and families receiv-
                encourage you to identify other options             ing care away from home. Contact your
                for assistance available in your com-               treatment facility or the National
                munity.                                             Association of Hospital Hospitality
                                                                    Houses, Inc. at 800-5 4 2-9 7 3 0 .
                Patient Assistance Programs. Patient
                assistance programs, also known as                  Community Service Organizations.There
                compassionate plea programs, are                    are many agencies and volunteer orga-
                designed to help patients obtain drugs              nizations such as the Salvation Army,
                that are unavailable to them in other               Lutheran Social Services, Jewish
                ways. They are offered by some phar-                Social Services, Catholic Charities,
                maceutical manufacturers. Some pro-                 and the Lions Club to name a few, that
                grams offer drugs that are in clinical              may offer financial help. Check your
                trials, but not yet approved and avail-             local phone directory. Some churches
                able to the public, to people who have              and synagogues may also provide
                no other therapeutic options and are not            financial help and/or services to their
                acceptable candidates for the clinical              members. And, in some communities,
                trial. Other programs offer products                the American Cancer Society or other
                that are not available to particular                c a n c e r-specific, nonprofit org a n i z a-
                patients due to the of lack of insurance,           tions offer modest financial aid for
                money, or other reasons. In both of                 expenses such as transportation to doc-
                these cases, the physician must apply               tors offices, home or childcare or other
                to the company directly and will need               such out-of-pocket expenses.
                to provide the company with informa-
                tion about the patient and the intended             Governmental Agencies. Your state or
                treatment. Talk to your doctor about                city may have other programs that are
                these programs. He/she may be willing               designed to assist in relieving the
                to ask for more details. Manufacturers’             financial burden of individuals with
                telephone numbers can be found in the               serious illness. Some treatment centers
                Physician’s Desk Reference, a b o o k               offer lodging assistance to families of
                that can be found in every physician’s              those receiving treatment. It doesn’t
                office.                                             hurt to ask questions such as, “Do you
                                                                    know of any other financial assistance
                Tr a n s p o rtation and Lodging. There             programs that I might qualify for?”
                are a number of nonprofit org a n i z a t i o n s


        11.34
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Supplemental Care                          on the timing of and the number of vis-
                                           its among others. For more informa-
Supplemental aid is aid that supple-       tion, contact the AARP member ser-
ments, or adds to, your insurance poli-    vices center at 800-424-3410.
cies. This type of aid is designed to
help you have a lifestyle close to what    Hospice
you had before your diagnosis of lung      Hospice care may be either in your
cancer.                                    home or at a hospice facility. To
                                           receive hospice care, you will have to
Home Health Care                           make the decision not to use any addi-
Home health care is an option that         tional, potentially curative treatments.
more and more cancer patients are          Hospice services are discussed further
choosing. If you live alone or live with   in “Chapter Twelve: End-of-Life
someone who is unable to meet the          Issues.”
additional needs brought on by your
disease, this option can help to main-     Eldercare
tain much of your original routine.        Eldercare is usually only available to
Keeping things as close to normal may      people over 60 years of age. However,
help with your mental outlook, as well     exceptions are made. If eldercare looks
as your physical condition. Home           like a good match for you and your
health care is an option when you are      needs, call facilities in your area to find
experiencing any disease or treat-         out what services they offer, how much
ment-related condition. Home health        they cost, and what their criteria are for
aides can be hired as independent con-     entering.
tractors or through a home health
agency. Check the yellow pages in          “Meals On Wheels”
your local phone book. A cancer orga-      Most communities have options for
nization may also be able to provide       providing meals for those who want
referrals. Your oncology nurse may be      to stay in their homes but can’t pre-
able to provide referrals.                 pare their own meals. Ask your
                                           social worker or physician for infor-
At-Home Recovery Care                      mation about this program in your
If you are over the age of 55, AARP        c o m m u n i t y.
offers several supplemental insurance
policies to cover items not covered by     Assisted Living Facilities
private health insurance or Medicare.      Assisted living facilities may be an
Several of these supplemental policies     alternative for older adults who want to
(Plans D, G, I , and J) include an at-     remain as independent as possible for
home recovery care benefit. This bene-     as long as possible, but who do not
fit covers homecare visits that are cer-   have an extensive support system to
tified by your physician as necessary to   assist them with many of their daily
a condition that includes a homecare       tasks.
plan of treatment. There are limitations


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                Assisted living facilities come in all         as well as physical, occupational, and
                sizes and offer a variety of services.         speech therapies. Other specially
                They may have less than one dozen              designed programs may also be avail-
                residents or several hundred residents.        able.
                Often, you may be able to customize
                the number and type of services you            If you feel an adult daycare facility is a
                need to fit your particular situation.         possible option for you, your social
                Services vary from facility to facility,       worker will be able to assist you in
                but usually include:                           finding an adult daycare facility that
                • basic housing                                meets your needs.
                • meals
                • 24-hour emergency monitoring
                • supervision and dispensing of med-
                    ications                                   SUMMARY
                • socialization with peers
                • assistance with bathing, dressing,           The healthcare system can be confus-
                    grooming, eating, and/or trans-            ing. You will meet new people, hear
                    portation                                  and use a new language, and very
                                                               often, live by new rules. Information is
                Adult Daycare                                  probably the most important tool you
                Adult daycare centers are usually              have for finding your way through the
                designed for older adults, age 60 and          maze and getting the best care you can,
                o l d e r, who are no longer able to utilize   the care you deserve. Despite the
                the services of traditional senior centers     increased demands on your time and
                because of frailty and/or health prob-         energy to get information, you may be
                lems. However, exceptions are some-            surprised at your own strength.
                times made for younger individuals.
                                                               There is much you can do to advocate
                Many services are provided at adult            for your own rights and needs as a
                daycare facilities. Services vary from         patient and as a person. Be assertive
                facility to facility. Services that may be     about your needs with your current
                provided include:                              healthcare providers and when choos-
                • door-to-door transportation                  ing new providers. Look for treatment
                • nutritious meals                             facilities that meet your needs. Ask
                • recreational activities:                     about new treatments, and about clini-
                    • exercise classes                         cal trials. Analyze your insurance cov-
                    • crafts                                   erage and other financial concerns;
                    • music and singing groups                 there are options. Consider your need
                    • discussion groups                        for supplemental care for the day it
                                                               may be needed.
                In addition, many facilities offer nurs-
                ing supervision and medical monitor-           We hope the information in this chapter
                ing with supplemental medical services         will contribute to your health and well-


        11.36
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being. We hope your journey through
the healthcare system is smooth and
that practical matters do not occupy all
of your waking time and thoughts. We
believe that the information presented
here will free you up to spend time on
other important things, such as every-
day living and loving.

Remember, there are always options
available to you. Look for them.




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                                           End-Of-Life Issues
                                            Table of Contents                                    12
Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.1
Getting Your Affairs in Order . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.1
    Estate Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.2
    Wills . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.2
    Living Will/Advance Directives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.2
    Medical Power of Attorney . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.3
    Trusts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.3
    For the Family . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.4
Creating a Personal Legacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.5
Making Difficult Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.6
    Resuscitation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.6
       If You Choose to be Resuscitated . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.7
       If You Choose Not to be Resuscitated . . . . . . . . . . . . . . . . . . . . . . . . 12.7
    End-of-Life Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.8
       Hospital or Other Healthcare Facility . . . . . . . . . . . . . . . . . . . . . . . . 12.8
       At Home . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.8
       Hospice Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.8
    Funeral Planning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.9
       Memorial Societies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.9
       Before the Funeral . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.10
Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12.10
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                                  End-Of-Life Issues                       12
INTRODUCTION
                                                “You can always have hope, it’s just
                                                that at the end of your life, hope


D
         ying is the inevitable result of       changes to a wish for dignity, comfort,
         our being born, a transition we        relief from the suffering.”
         must all experience, but rarely                      — lung cancer survivor
think about. Being diagnosed with can-
cer, however, makes the inevitability of
death a very clear and present reality.     You may find that this is a good time to
                                            ask yourself about the things you have
                                            been wanting to do, but have been
   “It may seem strange, but when I         postponing. There is time.
   learned I was going to die of my can -                                                      palliative care: care
   cer, I realized that my journey with     Remember, you can make many choic-                 designed to reduce
   lung cancer is one of the most impor -
                                            es and plans now that will have far-               the symptoms of a
   tant parts of my life.”
                                            reaching consequences for others. We               disease rather than to
                  — lung cancer survivor                                                       cure it
                                            encourage you to use the information
                                            provided here to find the best path for
                                            you on your journey.
Unlike people who die unexpectedly,
people with cancer often feel that they
have been given a warning and the time          With good care and good symptom
to get things in order and do those             management, many people find a
things they want or need to do prior to         sense of profound hope in their last
their deaths.                                   months or weeks of life. They find
                                                that their lives have had significant
                                                meaning and purpose — that there is
Perhaps you have learned that your              a scheme of things.
cancer cannot be cured or controlled
and that your remaining time is limited.
Your treatment goals may now have
changed from cure to comfort, that is,
for palliative care. A major motivation     GETTING YOUR A F FA I R S
in developing this manual is to con-        IN ORDER
tribute to well being and sense of con-
trol in lives of everyone living with       A diagnosis of cancer leads many to
lung cancer, regardless of how much         consciously acknowledge that life has
time is left.                               an end. Even though this is true for
                                            everyone, very few of us take the time
                                            to think about or plan for the end of our

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               lives. By making the appropriate legal      Wills
               and financial arrangements now, you
               may spare yourself and/or your family       Having a will is important at any time
               a lot of stress in the future.              in life. A basic will explains how you
                                                           want your property divided, who will
               Just as it is important that you consult    have guardianship of any minor chil-
               with oncology professionals for the         dren, and who the executor is to be,
               management of your medical care, it is      among other things. Without a will, the
               also important that you consult with        courts decide these things. If you do
               legal, financial, and other such profes-    prepare a will, keep it in a safe place
               sionals for assistance with the practical   with your other important documents.
               concerns addressed here.
                                                           Your community may accept a generic
               It will be very helpful to ask one if not   will. Generic documents are often legal
               two people you absolutely trust to take     without the use of an attorney.You may
               on the responsibility of carrying out       wish to complete the document your-
               your wishes. Let these people know          self and then consult an attorney to
               exactly where you keep all of your          make sure you have considered every-
               financial records, who your insurance       thing that may be applicable. Or, you
               agent is, who your lawyer is, and what      may prefer to have an attorney draw up
               your final wishes are. If your family       your will.
               members need help, the person or per-
               sons you have asked to help can step in     If you have a spouse who will survive
               and assist with financial matters, now      you, it is very important that he or she
               and after your death.                       has a will, as well. This is especially
                                                           important if there are children or other
                                                           dependents involved.
               Estate Planning
               Reviewing your assets and liabilities,      Living Will/Advance Directives
               wills, and other financial matters with
               your family is an important step in         A living will, sometimes known as an
               estate planning. It’s a good idea to        advance directive, allows you to state
               organize your records and documents         in advance your wishes regarding the
               and put them in a safe deposit box, fire-   use of life-prolonging medical care if
               proof safe, or other secure place. It may   you become unable to communicate. If
               be helpful to contact a professional        you have strong feelings about
               estate planner or lawyer to work with       l a t e-stage treatment choices, it is
               to help you handle some of these            important for you to put them into writ-
               issues.                                     ing. Before writing a living will or an
                                                           advance directive, talk to your doctor
                                                           to identify the issues and define the
                                                           terms that might be important in deci-


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sions about your future care. We            power of attorney provides you with
strongly recommend that you consult         the opportunity to set specific guide-
an attorney.                                lines on how you would like your care
                                            to be handled by this individual when it
                                            becomes effective.
   A living will, sometimes known as an
   advance directive, allows you to state   Although you can appoint a family
   in advance your wishes regarding the
   use of life-prolonging medical care if
                                            member as your medical power of
   you become unable to communicate.        a t t o r n e y, it may be difficult for them to
                                            carry out your wishes. This is especial-
                                            ly true if your wishes are at odds with
A living will is different from a med-      their beliefs. To reduce the stress that
ical power of attorney in that it is        carrying out your wishes may place on
applicable only to terminal illness and     a family member, it may be preferable
does not appoint an agent. However, it      to appoint someone you trust who is not
does make your wishes known and             as emotionally involved with you as a
helps to ensure that they are carried       family member might be. A trusted
out. It is a good idea to have a copy of    friend might be a practical alternative.
your living will with your medical          It is a good idea to give several people,
records. Give a copy of the document        including your healthcare provider,
to your physician(s) and others who         copies of your advance directive (living
might be involved in making these           will) and power of attorney. The Cancer
decisions.                                  Information Service (800-4-C A N C E R )
                                            has more information on this topic.
You can get a copy of the legal form for
a living will used in your state from
your local library. If you have recently    Trusts
moved from one state to another, you
will probably need to complete a new        A trust is both a financial and a legal
form, because many states have their        arrangement. Trusts can be complicat-
own acceptable formats. These docu-         ed, and there are several different types
ments usually require the signature of      of trusts. Because of their complicated
two witnesses.                              legal nature, we recommend that you
                                            contact a lawyer to help you.

Medical Power of Attorney                   Some survivors have set up trusts in
                                            which they give their money to a close
A power of attorney for healthcare          friend so that they can qualify for
decisions or medical power of attorney      Medicaid. In return, the friend agrees
allows you to formally appoint some-        to use the money for the survivor’s
one to make healthcare decisions on         care. Sometimes trustees are appointed
your behalf in case you are ever unable     to help with financial planning after a
to make your wishes known. A medical        death. A financial planner or lawyer

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               can provide you with more information            transferred to them prior to your
               on trusts.                                       death. If you have significant
                                                                assets, consider speaking with a
                                                                CPA or tax attorney to help deter-
               For the Family                                   mine what would be the most
                                                                advantageous course for you to
               There are a number of things that your           take. If you are currently using a
               family should be aware of before your            financial planner, this individual
               death that will make things much easi-           should be able to assist you.
               er on them:
                                                            •   Create a detailed list of your assets,
               •   If your will is in a safety deposit          debts, lawyers, insurance agents,
                   box, it may be locked immediately            banks, and other such items. Tell
                   following your death and possibly            your family member(s) or close
                   stay locked until your family can            friend(s) where the list is located so
                   schedule an appointment with the             that they will be able to access it
                   appropriate authorities. Find out            quickly.
                   what the laws are in your state and
                   discuss with your family the steps       •   If a formal will is in existence, it is
                   they will need to take ahead of              important that it be processed as
                   time. Prior to your death, you or            soon as possible after your death. If
                   your family may want to remove               you have an attorney, instruct your
                   certain documents so that they will          family to inform him or her imme-
                   be accessible.                               diately after your death so that the
                                                                probate process can begin. Probate
               •   If you have a joint checking                 is the legal procedure to ensure that
                   account, half of it may be frozen            a will is genuine.
                   after your death. It is important to
                   know the laws in your state con-         •   It is also a good idea for your fam-
                   cerning this. If the account will be         ily to contact the insurance compa-
                   frozen, consider opening up a sepa-          nies — health, disability, and life
                   rate account in your spouse’s name.          — as soon as possible. Your insur-
                   Prior to your death, instruct your           ance agent can provide your family
                   spouse to transfer enough money              with all the information they will
                   into the account to allow sufficient         need on how to proceed.
                   funds to live comfortably for at
                   least two weeks to one month. Do         •   Contact Social Security right away
                   not close out the old checking               if benefits were received or a fami-
                   account. It may be needed for                ly member becomes eligible to
                   incoming deposits.                           receive benefits. Any Social
                                                                Security checks made out to you
               •   Your family may be able to avoid             that are dated after death should not
                   gift taxes if legal title to assets is       be cashed. They must be returned


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    to the Social Security office.           •   changing the name on credit cards
                                                 or canceling credit cards
•   Contact your county health depart-       •   requesting prorated refunds for
    ment or a similar agency to find out         memberships and subscriptions
    what must be done after a death.
    Many communities have common             It is important that you keep accurate
    procedures. These may or may not         records, including all receipts or can-
    include:                                 celed checks for all assets coming into
    • placing an obituary in one or          the estate and all debts paid out. T h e
        more local periodicals               executor will need these for verifying
    • filing a Notice to Creditors to        disbursements from the estate. In
        allow creditors to collect debts     addition, a final tax return will need to
        prior to distribution of inheri-     be filed.
        tances
    • filing estate inventories
    • establishing a checking account
                                             CREATING A PERSONAL
        for the estate
                                             LEGACY
Other things that may need to be done
include:                                     Many people feel that, once their fami-
• calling or writing each of the insur-      ly has been provided for, they want to
    ance companies (auto, homeown-           create and leave a personal legacy.
    ers, life, etc.) to inform them of the   Personal legacies come in all shapes
    death and to change the name on          and sizes. There is no wrong way to
    policies; ask if there are refunds       create one. The only prerequisite is that
    due or if there are additional           it comes from your heart.
    changes that need to be made to the
    policy                                   You may want to keep a journal of your
• continuing medical coverage for            experiences with lung cancer with
    surviving dependents; do not             notes of how your family and friends
    assume this will happen automati-        have helped you. This may help them
    cally                                    work through their grief, especially if
• contacting a former employer to            they begin to ask questions of them-
    see if there are:                        selves, such as, could I have done
    • survivor benefits                      more? Providing them with a copy of
    • retirement benefits                    your journal may help them to see,
    • group life insurance                   through your own words, how much
    • payments for unused vacation           their love and caring meant to you.
        or sick leave                        This can also be done using video,
    • dividends from profit sharing          audio recordings, or personal letters.
        plans                                Or, you may wish to use your journal
• continuing to pay bills or make            as a personal testimonial that can be
    payments until arrangements can          provided to an organization who can,
    be made for them to be paid              in turn, make it available to others to

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               help ease their journeys with cancer.          MAKING DIFFICULT
                                                              DECISIONS
               It is becoming more and more common
               for people, especially those who have a        Whether we die of lung cancer or from
               terminal illness such as cancer, to            some other cause, most of us will have
               request that, upon their deaths, people        to make difficult decisions as we face
               donate to a charity or organization that       the ends of our lives. Many people say
               has been helpful to them or their fami-        that there is often a sense of freedom
               lies during their illness rather than          and peace that comes from making
               sending flowers. If you would like peo-        these decisions. We trust you, too, will
               ple to contribute to a charity or organi-      find this peace and freedom.
               zation that has helped you or an anoth-
               er organization that you feel needs sup-
               port, talk with your family and decide         Resuscitation
               together how to do this.
                                                              As the end of life approaches, certain
                                                              body functions may begin to fail and
                   Personal legacies come in all shapes
                   and sizes. There is no wrong way to        the heart may, in turn, fail. When this
                   create one. The only prerequisite is       happens, death results unless the heart
                   that it comes from the heart.              is started again. The process of bring-
                                                              ing someone back to consciousness
                                                              after the heart stops is called resuscita-
               If you have significant financial assets,      tion. The decision whether or not to be
               you may wish to work with an org a n i z a-    resuscitated if your heart stops during a
               tion, a hospital, or some other institution    medical crisis is a very important and
               that has assisted you with your disease        difficult one to make. You may want to
               to create a program to help others who         talk with your family before making
               have or will have the same illness that        the decision. A clergy member or spiri-
               you have. Or, you may wish to create a         tual advisor may be able to help you
               foundation bearing your name that is           sort through your feelings. Whatever
               designed to provide financial assistance       your decision, it very important that
               to a cause in which you believe. Family        you make sure your wishes are known
               members often carry on the work of the         to as many people as possible.
               foundation by acting as trustees of the
               foundation. You can work closely with a        All of your family members should also
               consultant or attorney who can help you        clearly understand your wishes. In a
               to define the exact parameters of the          crisis, it is often difficult for family
               foundation so that it will continue after      members to let go. They may try to
               your death to accomplish the things that       contradict your wishes. Talk with them
               you want it to.                                well ahead of time about your desires.




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If You Choose to be Resuscitated            DNR, healthcare workers are legally
If you are in the hospital and want to be   obligated to continue CPR and utilize
resuscitated, let your family members       any life-saving equipment at their dis-
and physicians(s) know your wishes.         posal for a reasonable amount of time.
No forms have to be filled out in this      In some states, if there is continued
case, since resuscitation is the normal     brain activity, use of life-saving mea-
procedure if you are in a hospital. If      sures, such as a respirator, must contin-
you are at home and want to be resus-       ue until there is no sign of brain activi-
citated, your family members should         ty for a specified amount of time.
know that they are to call an ambulance
with emergency medical technical            Some people believe very strongly in
(EMT) support available, so that resus-     their right to not be resuscitated. Some
citation can begin immediately on their     individuals have gone to great lengths
arrival.                                    to make sure their wishes are followed,
                                            such as wearing a DNR bracelet or
If You Choose Not to be Resuscitated        even a DNR tattoo. Most people can
If you do not want to be resuscitated, it   make sure their wishes are carried out
is important that all your caregivers are   by simply carrying a copy of their
prepared to honor your wishes. If you       signed DNR in their wallet and having
sign a “do not resuscitate” (DNR)           a copy on file at their physician’s office
order, you are instructing a physician      and at the local hospitals and emer-
not to use cardiopulmonary resuscita-       gency rooms. If you have designated
tion (CPR) in the event your heart stops    someone to have medical power of
or you stop breathing. Physicians are       attorney, this person should also have a
legally bound to perform CPR on any         copy of your DNR.
individual who does not have a signed
DNR order on record. You should be
sure that, in an emergency, those who           If you choose not to be resuscitated in
are caring for you do not call for an           the event that your heart stops or you
                                                stop breathing, those caring for you
ambulance with medical technical sup-           need to know that they should not call
port because these ambulance person-            for an ambulance with medical tech -
nel are obligated, if called, to adminis-       nical support because the emergency
ter resuscitation procedures.                   technicians are obligated, if called, to
                                                administer resuscitation procedures.
Many people with advanced cancer,
and other terminal diseases, choose to
sign DNRs if they feel that cardiopul-      If you choose not to be resuscitated,
monary resuscitation (CPR) will do          your family members should be told
more harm than good. For example, it        that, in an emergency, they should not
is very possible that, due to the           call an ambulance. If an ambulance is
advanced stage of disease, CPR may          called, the personnel are duty-bound to
cause the ribcage to collapse, causing      resuscitate, as is the hospital to which
severe pain and serious damage to           you will be taken. Your wishes must be
internal organs. If there is no signed      made very clear in advance in order to

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               avoid complicating circumstances that        Hospice care can also be provided at
               are not in accordance with your per-         home (see below).
               sonal wishes.
                                                            Hospice Care
                                                            A third, and perhaps most important,
               End-of-Life Care                             option is hospice care. Most medium-
                                                            to-large universities have one or more
               Another important decision is how and        hospice options and most communities,
               where you want die. The three most           even small ones, have hospice care.
               common choices are at home, in a hos-
               pital or other healthcare facility, or       If you are told by your healthcare team
               under hospice care. Most people who          that all treatment options have been
               die from lung cancer live for a period       tried and have failed, or that your dis-
               of days or weeks during which time           ease has progressed too far to be con-
               their health and physical status begin to    trolled, or you have decided you don’t
               fail rapidly. It is helpful if your deci-    want to undergo any more treatment,
               sions are made before this occurs.           you may want to consider hospice care.
                                                            Hospice care focuses on comfort rather
               Hospital or Other                            than cure. The hospice philosophy is
               Healthcare Facility                          inclusive and holistic — it ensures that
               If you want to die in a hospital or other    your family’s physical, emotional, and
               healthcare facility, your caregivers         spiritual needs are addressed, as well as
               need to know this. However, if you are       yours. Hospice care is provided while
               in a hospital receiving treatment for an     respecting the culture, beliefs, values,
               acute problem, you will not want to be       and choices of the patient and his or her
               sent home if death seems imminent.           loved ones.

               At Home                                      Hospice care is usually available to
               If you want to die at home, your fami-       people who have less than six months
               ly or caregivers need to agree so that, if   to live. However, since no one can give
               a crisis occurs and death is imminent,       an actual estimate of the time left for
               your family does not respond by call-        any individual, this is only a guideline.
               ing an ambulance. Dying at home              If you want to have hospice care, your
               requires, in many instances, family          physician will probably have to docu-
               members or friends who are capable of        ment that, in his or her belief, you are
               providing care during the last days or       in end-stage disease and probably have
               weeks of life. Assistance is available       less than six months to live. Most hos-
               through home healthcare agencies.            pices prefer to begin working with
               Private duty nurses are also available.      families months before a death occurs,
               The costs for home care are generally        rather than in the last weeks or days.
               lower than for hospital care, but not all    They are able to give better total care if
               insurance plans cover home care ade-         they are contacted early.
               quately, so, in the long run, it may be
               more expensive than hospital care.           To get hospice care, you and your doc-

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tor will have to make the decision not      out warning and with no time to plan,
to try any additional treatments aimed      you have the opportunity to make deci-
at curing your cancer. Hospice services     sions about a funeral and/or memorial
will provide pain control and other         service. While planning a funeral is not
symptom management and will focus           a task that many people care to do, it is
on maintaining your quality of life.        important to address this issue. By
This may or may not include                 doing so now, you can make sure your
chemotherapy or radiation that could        wishes are carried out and also relieve
be used to help control symptoms such       some of the stress your family will be
as pain.                                    experiencing.

Hospice care may take place either in       It is often said that funeral services are
the home or at a hospice facility. In       for the family and friends of the
some areas of the country, you may          deceased. This is true to a degree, but a
contact a hospice yourself to inquire       funeral and/or memorial service is not
about care; in other areas, your doctor     required. If you do not wish to have a
will need to contact hospice on your        funeral or memorial service, you have
behalf.                                     that right. However, if you do want a
                                            funeral and/or memorial service, this
Hospice workers can be an excellent         can be a way for you to provide mem-
resource for locating local services that   ories to leave with your family and
can be of assistance to you. Ask your       friends. You might write your own
doctor or nurse, or contact the hospital    obituary, choose the music and read-
where you receive care for information      ings for your memorial service, and
about hospice care in your area. Call       make other plans for your passing.
the national hospice office (800-338-       Ultimately, of course, the final decision
8619) for a listing of national hospice     is yours.
services. The local chapter of the
American Cancer Society listed in your      Memorial Societies
local telephone book also is a good         The Funeral and Memorial Societies of
source of information about hospice         America (FAMSA) is a network of
services.                                   member societies that helps individuals
                                            and families have access to discounted
Most oncologists work closely with          funeral rates. The program offers, for a
local hospices. If you or a loved one is    minimal membership fee, a network of
living with late-stage lung cancer, you     f u n e r a l-related service org a n i z a t i o n s
might talk with your oncologist about       that have agreed to offer discounted
hospice care and begin to meet with         rates to FAMSA members. The rates
local hospice staff.                        include discounted packages for buri-
                                            als, cremation, and related services. To
                                            receive the discounted rates, you must
Funeral Planning                            use one of the specified vendors.
                                            Contact the national headquarters and
Unlike people who die suddenly, with-       they will put you in contact with your

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                local or state organization. For infor-         SUMMARY
                mation, call 800-765-0107.
                                                                We all face death as a part of our being
                Before the Funeral                              born. For most people, death is in
                Assuming that all of the decisions dis-         some far-distant time and hardly seems
                cussed above have been made, the                real. Being diagnosed with lung cancer
                actual planning of the funeral services         brings death into stark reality. With
                is all that remains.                            that reality, however, also comes the
                                                                knowledge of how much time is left to
                Most funeral homes or mortuaries offer          accomplish the things in life that make
                a wide variety of services. These may           it worthwhile, things that most of us
                include:                                        put off until sometime in the future.
                • removal from the place of death               Though your time may be shorter than
                • preparation of death certificate              someone else’s, there is still time, and
                • completion of required permits and            you can make it work for you.
                    paying fees
                • delivery to crematory or local                There are lots of very practical things
                    cemetery                                    to do now: many will be to make your
                • arrangement of church or chapel               remaining time as comfortable as pos-
                    memorial service                            sible, and many will be to make your
                                                                passing easier for those you will leave
                You may want to learn about the laws            behind. While necessary and ultimate-
                in your state regarding such things as          ly useful, these tasks will take your
                whether embalming is required prior to          energy and commitment at a time when
                cremation. In addition, there may be            you are already being taxed by illness
                specific religious practices you will           and treatment. Ask for help. Those who
                want to be aware of.                            love you want to give you the help you
                                                                need and often are waiting for a signal
                Request that several copies of the death        that you need them.
                certificate be made available to your
                family. The funeral home or mortuary            Consider what you can leave behind. It
                should be able to provide as many               can be as simple and as personal as a
                copies as requested. A death certificate        letter to your family or as encompass-
                will be needed for each asset you leave,        ing as funding a foundation. How you
                including properties, insurance poli-           want to be remembered is as individual
                cies, bank accounts, CDs, stocks or             as you are.
                bonds, cars, etc.
                                                                We hope the information provided here
                Planning your funeral may be the most           will help to give you peace of mind and
                d i fficult thing you will face at this stage   that it will help you find ways to
                of life. You may find, though, that plan-       relieve as much pain, anxiety, and fam-
                ning a funeral with the family allows           ily stress as possible. Most importantly,
                them to talk about things you and they          we hope it contributes to your success-
                were reluctant to talk about before.            ful journey through the end of life.

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                                                           Glossary


3-dimensional view: computer gener-                 algorithm: step-by-step method of
ated display of a tumor which includes              solving a problem, for example, mak-
the depth, width and height of the                  ing a diagnosis
tumor
                                                    alkaloids: class of drugs used in
                                                    chemotherapy; some vinca alkaloids
A                                                   can kill cancer cells; also called aky-
                                                    lating agents

acute: sudden onset (of symptoms or                 alopecia: loss of hair that can include
disease)                                            all body hair; may be a side effect of
                                                    cancer treatment
adenocarcinoma: one of three major
subtypes of nonsmall cell lung cancer;              alveolar cell cancer: slow-growing
involves the cells lining the lungs                 type of adenocarcinoma or nonsmall
                                                    cell lung cancer
adenovirus: a group of viruses that
cause respiratory tract and eye infec-              alveoli: tiny air sacs found at the end
tions; adenoviruses used in gene thera-             of the smallest branches of the
py are altered to carry a specific                  bronchial tree; oxygen passes into the
tumor-fighting gene                                 bloodstream and carbon dioxide pass-
                                                    es into the lungs to be exhaled through
adjuvant chemotherapy: the use of                   the alveoli
anticancer drugs after surgery for
patients whose cancer is likely to recur            analgesic: drug that relieves pain

adjuvant therapy: a treatment                       analogue: product that closely resem-
method used in addition to the primary              bles another in its primary chemical
therapy; used to increase eff e c t i v e n e s s   structure
of treatment
                                                    anemia: condition caused by a reduc-
adverse reaction: the body’s nega-                  tion in the amount of red blood cells
tive response to treatment (such as                 that are produced by the bone marrow;
lowered blood counts)                               anemia can be a result of the cancer
                                                    itself or from the treatments; symp-
agonist: drug that triggers an action               toms of anemia include fatigue and
from a cell or a drug                               dyspnea


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              anesthetic: drug used to abolish the         asymptomatic: without obvious signs
              sensation of pain                            or symptoms of disease

              anorexia: diminished appetite and/or         atypical: abnormal or not usual
              aversion to food
                                                           axillary node: lymph node found in
              antibiotic: drug that kills or reduces       the armpit (axilla)
              the growth of bacteria

              antiangiogenesis: prevention of              B
              growth of new blood vessels (to a
              tumor); naturally occurring com-
              pounds in the body carry out both pro-       benign: not cancerous, does not
              duction of and prevention of develop-        invade nearby tissue or spread to other
              ment of blood vessels; a number of           parts of the body
              antiangiogenic compounds are in clin-
              ical trial and may become a means for        benign tumor: growth that is abnor-
              stabilizing or inhibiting tumor growth       mal but does not spread the way that
                                                           cancerous growths do
              antibody therapy: treatment with an
              antibody, a substance that can directly      biological response modifier: treat-
              kill specific tumor cells or stimulate       ment agent used to stimulate, restore,
              the immune system to kill tumor cells        or modify the immune system

              antibody: protein formed by the body         biologic(al) therapy: cancer treat-
              that helps to fight infection                ment that uses biological response
                                                           modifiers to fight cancer
              anti-CEA antibody: antibody devel-
              oped against carcinoembryonic anti-          biomarkers: substances sometimes
              gen (CEA), a protein present on cer-         found in an increased amount in the
              tain types of cancer cells                   blood, other body fluids, or tissues
                                                           and which can be used to indicate the
              antiemetic: drug that reduces or pre-        presence of some types of cancer; bio-
              vents nausea and vomiting                    markers include CA 125 (ovarian can-
                                                           cer), CA 15-3 (breast cancer), CEA
              antigen: substance that promotes the         (ovarian, lung, breast, pancreas, and
              production of antibodies                     GI tract cancers), and PSA (prostate
                                                           cancer).
              arterial blood gas value: a measure-
              ment used to determine the effective-        biopsy: surgical removal of a seg-
              ness of respiration                          ment of tissue for analysis by a
                                                           pathologist
              arterioles: tiny arteries


        G.2
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blood cell: general term describing          bronchi: plural of bronchus;
the three cellular components of the         bronchial tubes
blood (white blood cells, red blood
cells, and platelets), all of which are      bronchiole: very small tube(s) with-
made in the bone marrow                      out cartilage that is the last part of the
                                             bronchus before it leads into the
blood count: routine test that deter-        alveolus
mines the amount of white blood
cells, red blood cells, and platelets in a   bronchoscope: thin viewing instrument
sample of blood                              which may be inserted into the throat
                                             and larger breathing passages to exam-
bolus: single dose of drug                   ine them for the presence of cancer

bolus infusion: introduction of a sin-       bronchoscopy: examination of breath-
gle dose of fluid into a vein or artery      ing passages with a bronchoscope
bone marrow: spongy material that
produces blood cells; found inside the       bronchus: either of the two main
bones                                        breathing tubes branching off from the
                                             windpipe; one bronchus leads to each
bone metastases: tumor cells that            lung
have spread from the original (prima-
ry) tumor and are growing in the bone
                                             C
bone scan: procedure by which an
image of the bones is produced by
                                             cachexia: breakdown of muscle mass
injection of a radioisotope; used to
                                             resulting from rapid weight loss
determine if the cancer has spread to
the bones
                                             cancer: group of over 100 diseases
                                             characterized by the uncontrolled
brachytherapy: in radiotherapy,
                                             growth and spread of malignant cells
treatment with ionizing radiation the
source of which is applied directly to
                                             cancer cell: cell that divides and
the surface of the body or is located a
                                             reproduces abnormally
short distance from the area of the
body being treated
                                             c a rcinoma in situ: early-stage cancer
                                             in which the disease is confined to the
brain scan: test used to determine if
                                             original cells or tissue in which it started
cancer has spread to the brain
                                             carcinogen: substance that causes
brief pain inventory: questionnaire
                                             cancer
used to measure pain
                                             carcinogenesis: process of tumor
bronchial carcinoma: lung cancer
                                             development

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              carcinogenic: inciting or producing        healthy tissue from the toxic effects of
              cancer                                     chemotherapy drugs

              carcinoma: form of cancer that devel-      chemosensitizer: drug which makes
              ops in tissues covering the external or    tumor cells more sensitive to the
              internal surfaces such as the lung         effects of chemotherapy

              capillaries: tiny blood vessels            chemosensitivity assay: laboratory
                                                         test to determine the most beneficial
              catastrophic insurance policy: poli-       chemotherapy treatment by analyzing
              cy designed to cover the costs of seri-    the responsiveness of tumor cells to a
              ous illness; generally has very high       panel of drugs
              deductible and low premium
                                                         chemotherapy: drug or combination
              catheter: flexible tube inserted into      of drugs used to fight cancer
              the body to transport fluids into or out
              of the body                                chromosome: strand of DNA and
                                                         related proteins that carries the genes
              cell: basic building block of all living   and transmits hereditary information
              tissues; comprised of a nucleus (the
              “brain” of the cell), the cytoplasm sur-   chronic: lasting for a long period of
              rounding the nucleus, and a cell wall      time or marked by frequent recurrence
              enveloping the cytoplasm
                                                         cilia: tiny hair-like projections locat-
              central nervous system (CNS): con-         ed on the surface of the bronchi that
              trol center for the body; includes the     continually sweep mucus up and out
              spinal cord and brain                      of lungs, helping to cleanse them

              central venous catheter: special           clinical trial: evaluation of possible
              catheter placed in a large vein;           new treatments carried out with
              remains as long as necessary to deliv-     human subjects under strictly con-
              er/withdraw fluids                         trolled conditions

              c-erbB—2: gene that controls cell          colony-stimulating factor: treatment
              growth by making the human epider-         used to stimulate the production of
              mal growth factor receptor 2; also         certain white cells in bone marrow
              known as HER2/neu
                                                         combination chemotherapy: treat-
              chemoprevention: term used to              ment using two or more anticancer
              describe attempts at prevention of dis-    medications
              ease using chemicals, vitamins, and/or
              minerals                                   combined modality therapy: two or
                                                         more types of treatment; may include
              chemoprotective: agents that protect       combinations of radiation, chemother-

        G.4
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apy, surgery, or others                    evaluated quickly; clinical trials of
                                           new cancer treatments require many
complementary therapy: techniques          more patients than a single physician
or approaches often used in addition       or hospital can care for
to standard treatment (for example,
meditation or diet)                        counselor: general term for someone
                                           who provides professional help in
complete blood count (CBC): analy-         coping with life issues such as emo-
sis to determine quantities of various     tional and relationship difficulties;
components of the blood; see blood         sometimes used interchangeably with
count                                      “therapist”

complete response: indicates that          cure: term used when there is no sign
tumors have disappeared as a result of     of disease present in the body and
therapy                                    adequate time has passed so that the
                                           chances of recurrence of the disease
complications: unexpected symptoms         are small
or problems resulting from medical
treatment such as from surgery or          CT scan or CAT scan (computed
chemotherapy                               axial tomography): diagnostic test
                                           that uses a combination of x-ray and
congestive heart failure: weakness         computers to create three-dimensional
of the heart muscle that causes a          internal views of the body
buildup of fluid in body tissues, usual-
ly due to heart disease but may be due     cytology: study of cells, their origin,
to other conditions such as cancer         structure, function, and pathology
treatment

consent form: form that advises            D
patients about all potential risks and
benefits of any treatment they are to      denial: process of automatically
receive; a standard procedure in all       blocking out awareness of painful real-
hospitals and clinics                      ities, thoughts, or feelings in order to
                                           protect oneself from emotional distress
continuous infusion: slow introduc-
tion of a fluid into a vein or artery      DNA (deoxyribonucleic acid): part
over a period of time                      of the cell that contains and controls
                                           all genetic information
cooperative group: group of physi-
cians and/or hospitals formed to treat     detection: discovery of an abnormali-
a large number of patients in the same     ty in an asymptomatic or symptomatic
way so that new treatment can be           person



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              diagnosis: process of identifying a        dysplasia: abnormal changes in the way
              disease by its characteristic signs,       tissue cells look under a microscope
              symptoms, and lab findings
                                                         dyspnea: shortness of breath or “air
              diagnostic procedure: method used          hunger”
              to identify a disease

              diaphragm: muscular membrane that          E
              separates the chest from the abdomi-
              nal cavity; a major muscle that helps
                                                         edema: swelling of a body part
              intake of breath
                                                         caused by an abnormal build-up of
                                                         fluids
              distant cancer: refers to cancer that
              has spread to distant organs or distant
                                                         emotional support: expressions of
              lymph nodes
                                                         caring and concern that focus on a
                                                         person’s feelings; may include listen-
              dose rate: strength of a treatment
                                                         ing, talking, and/or touch
              given over a period of time
                                                         empathy: understanding another per-
              dosimetrist: person who plans and
                                                         son’s feelings by remembering or
              calculates the proper dose of radiation
                                                         imagining being in a similar situation
              for treatment
                                                         empowerment: feeling of having the
              double-blinded trial: clinical trial in
                                                         right to make one’s own choices, and
              which neither the medical staff nor the
                                                         of having the ability to act on them
              patient knows if the patient is receiv-
              ing the investigational drug, another
                                                         epidemiology: study of the causes,
              drug, or a placebo
                                                         distribution, and control of disease in
                                                         populations
              doubling time: time taken for a cell
              to complete the cell cycle
                                                         epidermoid carcinoma: one of the
                                                         subtypes of nonsmall cell lung cancer;
              drug resistance: failure of (cancer)
                                                         also called squamous carcinoma
              cells to respond to chemotherapy
                                                         epithelium: covering or lining; can-
              durable power of attorney: legal
                                                         cers of the epithelium are called carci-
              designation of the person responsible
                                                         nomas
              for managing another person’s affairs
              if he/she becomes unable to do so;
                                                         erythema: redness of the skin
              may be for all decisions or only for
              healthcare decisions (healthcare proxy
                                                         erythrocyte: red blood cell that car-
              or medical power of attorney)
                                                         ries oxygen to the cells and carries
                                                         carbon dioxide away from them
              dysphagia: difficulty with swallowing

        G.6
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erythropoietin: hormone that stimu-          observing the internal structure of
lates peripheral stem cells in the bone      opaque organs in the body by means of
marrow to produce red blood cells            x-ray

esophagus: “swallowing tube”                 fluoroscopy: x-ray examination using
                                             a fluoroscope
evaluable disease: extent of disease
that cannot be measured directly by          Food and Drug Administration:
size of the tumor but can be evaluated       (FDA) the governmental agency that
by other methods specific to a particu-      reviews and approves all clinical trials
lar clinical trial                           for drugs and other procedures that
                                             might prevent or treat cancer as well
excision: removal, by surgery                as other diseases

expectorant: medicine that helps a           fraction: dose of radiation for a single
person cough up secretions from the          treatment
lungs
                                             fractionation: dividing the total dose
extensive-stage small cell lung              of radiation therapy into several small-
cancer: small cell lung cancer that has      er, equal doses delivered over a period
spread outside of the lung to other tis-     of several days
sues in the chest or to other parts of the
body
                                             G
F                                            gamma rays: powerful radiation
                                             beams from a radioactive material;
fatigue: constant and extreme tired-         used for radiotherapy
ness that does not resolve with a good
night’s sleep                                gene: part of DNA that is responsible
                                             for determining a person’s characteris-
fiberoptic bronchoscope: instrument          tics, and that carries information from
consisting of a flexible bundle of glass     old cells to new cells
fibers that transmit light throughout
their length; allows a better view of        gene therapy: use of genes to treat
breathing passages than a convention-        cancer and other diseases
al bronchoscope
                                             genome: complete genetic informa-
fibrosis: formation of fibrous tissue as     tion of a species
a reaction or as a repair process; may
occur due to treatment and/or disease        granulocyte: type of white blood cell
                                             that fights bacterial infection
fluoroscope: instrument used for

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              granulocytopenia: low number of            inserted into a large vein near the
              granulocytes which may reduce the          heart; used for delivery of medications
              ability of your immune system to fight     and transfusions
              infection
                                                         high risk: when the chance of devel-
              growth factor: protein that promotes       oping cancer is greater than normally
              cell production                            seen in a population

              growth-factor receptor: protein            hilus (hilum): depression on the sur-
              found on the surface of a cell that        face of the lung where the bronchus,
              binds to a growth factor                   blood vessels and nerves enter the lung

                                                         HMO (health maintenance organi-
              H                                          zation): type of healthcare plan in
                                                         which members pay a set fee to an
                                                         organization, which then provides
              hematocrit: number of red blood
                                                         health care through their approved
              cells within a sample of blood
                                                         doctors and other providers
              hematologist: physician who special-
                                                         homeopathic remedies: small doses
              izes in diseases of the blood
                                                         of medicines and herbs that are
                                                         believed to stimulate the immune sys-
              hematology: study of blood, blood-
                                                         tem by causing the same symptoms in
              producing organs, and blood disorders
                                                         healthy people as those of the disease
                                                         being treated
              hemoglobin: iron-protein component
              in the red blood cells that carries oxy-
                                                         hospice: program dedicated to caring
              gen to body tissues
                                                         for terminally ill patients and their
                                                         families
              hemotysis: blood in the sputum or
              fluid/phlegm that can be coughed up
                                                         hydrocortisone: drug used to relieve
              or obtained from the lungs
                                                         the symptoms of certain hormone
                                                         shortages, and to suppress an immune
              heredity: transmission of information
                                                         response
              from parent to offspring through
              genetically coded information
                                                         hyperalimentation: nutritional sup-
                                                         port given through a vein
              HER2/neu: gene that controls cell
              growth by making the human epider-
                                                         hypercalcemia: abnormally high
              mal growth factor receptor 2; also
                                                         concentrations of calcium in the blood
              known as c-erbB-2; the protein pro-
              duced is called the HER2/neu antigen
                                                         hyperfractionated radiation: divi-
                                                         sion of the total daily dose of radiation
              Hickman catheter: catheter that is


        G.8
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into smaller doses that are given more   incidence: number of new cases of a
than once a day                          specific disease which occur during a
                                         specific period of time

I                                        incision: cut, usually used in refer-
                                         ence to a surgical incision
imagery: technique where the patient
                                         in situ: in place, localized and con-
focuses on positive images to help the
                                         fined to one area; a very early stage of
body fight cancer and to feel better
                                         cancer
imaging: procedures that produce
                                         infection: invasion and multiplication
pictures of areas inside the body
                                         of disease-producing organisms in the
                                         body
imaging procedures: methods of
producing pictures of areas inside the
                                         informed consent: legally required
body; includes x-ray, CT scan, and
                                         procedure to ensure that a patient knows
MRI
                                         about the potential risks and benefits of
                                         a treatment before it is started
immune function: production of
cells that fight disease or infection
                                         infusion: administration of fluids or
                                         medications into the blood through the
immune response: activity of the
                                         veins
immune system against foreign sub-
stances (antigens)
                                         injection: use of a syringe and needle to
                                         deliver medications to the body; a shot
immune system: system within the
body that recognizes and fights for-
                                         interpersonal: referring to interactions
eign cells and disease
                                         between people
immunology: study of the body’s
                                         intravenous: within, or administered
natural defense mechanisms against
                                         into, a vein
disease
                                         invasive cancer: cancer that has
immunotherapy: treatment of dis-
                                         spread beyond its site of origin and is
ease by inducing, enhancing, or sup-
                                         growing into surrounding, healthy tis-
pressing an immune response (see bio-
                                         sues; also called infiltrating cancer
logic response modifier)
                                         in vitro: in the laboratory (outside the
induction chemotherapy: drug ther-
                                         body); the opposite of in vivo (in the
apy given as the primary treatment for
                                         body)
people who have advanced cancer for
which no alternative treatment exists
                                         in vivo: in the body


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               L                                            localized cancer: cancer still con-
                                                            fined to the site of origin
               large cell carcinoma: subtype of
                                                            locally advanced cancer: cancer that
               nonsmall cell lung cancer; cells are
                                                            has spread only to nearby tissues or
               large and do not resemble cells of skin
                                                            lymph nodes
               or glands
                                                            lung metastases: tumor cells that
               larynx: voice box, located above the
                                                            have spread from the original (prima-
               windpipe
                                                            ry) tumor to the lung
               lead shield: metal plate through which
                                                            lumbar puncture: also called a
               x-rays cannot pass; used to protect nor-
                                                            spinal tap; involves removing cere-
               mal tissues from radiation damage
                                                            brospinal fluid for examination
               lesion: nonspecific term for an abnor-
                                                            lymph: an almost colorless fluid that
               mal area
                                                            travels through the lymphatic system
                                                            to help fight infection/disease
               leukocyte: also known as white blood
               cell (wbc)
                                                            lymph node: small bean-shaped
                                                            organ that acts as a filter to collect
               leukopenia: low number of leuko-
                                                            bacteria and other foreign substances
               cytes or wbc’s; decreases a person’s
                                                            processed by the immune system;
               ability to fight infection/disease
                                                            lymph nodes are connected by lym-
                                                            phatic vessels throughout the body
               limited-stage small cell lung cancer:
               cancer is found only in one lung and
                                                            lymphatic (lymph) system: network
               in nearby lymph nodes
                                                            including the lymph nodes, lymph
                                                            vessels, and lymph fluid; can also be
               living will: legal document spelling
                                                            an avenue of spread for cancer cells
               out a person’s desires regarding life-
               sustaining equipment and treatments
                                                            lymphocyte: type of white blood cell
                                                            that fights virus and other foreign sub-
               lobe: division of a body organ, such
                                                            stances
               as the lung, marked by a fissure on the
               surface; there are usually two lobes in
               the left lung and three lobes in the
               right lung                                   M
               lobectomy: surgical removal of one           macrophage: type of white blood
               lobe of a lung                               cell that fights inflammation

               local treatment: treatment that              magnetic resonance imaging (MRI):
               affects a tumor and the area close to it     test that uses a magnetic field to create


        G.10
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three-dimensional images of the body;      range of numbers with half of the
similar to a CAT scan but uses mag-        numbers above and half below
nets instead of x-rays
                                           medical oncologist: doctor who spe-
maintenance therapy: treatment that        cializes in using chemotherapy to treat
is used to prevent a recurrence in         cancer
patients who are in remission
                                           mediastinoscopy: surgical procedure
malabsorption syndrome: group of           for examining the lymph nodes under
symptoms, including weight loss,           the breastbone for presence of cancer
weakness, and immune suppression,          or other disease
that result from the body’s inability to
absorb nutrients from food                 mediastinum: area of the chest
                                           behind the breastbone
malignant: cancerous; with a tendency
to spread                                  Medicaid: government-run health
                                           insurance program for those without
malignant mesothelioma: malignant          healthcare insurance
tumor that starts from the lining of the
lungs; mesothelioma looks like broad       medical durable power of attorney
sheets of cells; this type of lung can-    (or healthcare proxy): legal designa-
cer has been linked to exposure to         tion of the person appointed to man-
asbestos                                   age medical affairs and decisions for
                                           another person who is unable to do so
mass: tumor that may or may not be         for him/herself
malignant
                                           Medicare: federal medical insurance
matrix metalloproteinase inhibitors        program for senior citizens and the
(MMPI): a naturally occurring class        disabled
of protein inhibitors which may be
useful in cancer treatment; MMPI’s         meditation: structured practice, often
may inhibit the development of blood       involving a specific physical posture
vessels which feed the tumor, thereby      and breathing pattern, that can help
causing tumor shrinkage and ultimate-      reduce stress and increase awareness
ly tumor death; these agents are cur-
rently being studied in clinical trials    mental health pro f e s s i o n a l: someone
                                           who is trained to help individuals with
measurable disease: accurate mea-          mental, emotional, or interpersonal dif-
surement of a tumor’s size; changes in     ficulties; may be a psychiatrist, psy-
measurable disease indicate a response     chologist, counselor, or social worker
(or lack of response) to treatment
                                           metaplasia: change in cells from nor-
median: number in the middle of a          mal to abnormal


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               metastasis: spread of cancer cells            myelosuppression: suppression of
               from the original site to other parts of      blood cell production
               the body

               metastatic cancer: cancer that has            N
               spread from one part of the body to
               another
                                                             National Cancer Institute: (NCI)
                                                             governmental agency that is part of
               microscope: instrument that gives an
                                                             the National Institutes of Health
               enlarged view of an object
                                                             (NIH), that conducts research on can-
                                                             cer and helps to set national policy
               microscopic: too small to be seen
                                                             regarding cancer
               without a microscope
                                                             nausea: symptom indicating the incli-
               mitosis: method by which a dividing
                                                             nation to vomit
               cell provides all of its chromosomes to
               the resulting offspring cells
                                                             nebulizer: drug delivery system in
                                                             which medication is reduced to a fine
               modality: type or kind of treatment
                                                             spray and inhaled through the nebulizer
               (surgery, for example)
                                                             needle aspiration biopsy: withdraw-
               monoclonal antibody: artificially
                                                             al of fluid from a part of the body for
               made antibody used against one spe-
                                                             study
               cific antigen
                                                             needle biopsy: hollow needle is used
               mucositis: inflammation of the
                                                             to obtain a core of tissue for study
               mucous membranes (for example, the
               mouth) that causes pain, soreness,
                                                             neoadjuvant therapy: therapy given
               and/or excessive mucus production
                                                             before the primary treatment to
                                                             improve the effectiveness of the prima-
               multidrug re s i s t a n c e: adaptation of
                                                             ry treatment; neoadjuvant therapy can
               cancer cells to chemotherapy; if mul-
                                                             be chemotherapy or radiation therapy
               tidrug resistance develops a patient will
               no longer respond to chemotherapy
                                                             neoplasm: malignant growth
               multimodality therapy: therapy that
                                                             neurologic(al): involving the nerves
               combines more than one method of
                                                             or nervous system
               treatment such as chemotherapy and
               radiation
                                                             neuropathy: malfunction of the
                                                             nerves which may be caused by
               mutation: alteration in a gene that
                                                             chemotherapy; numbness and weak-
               may cause disease or abnormal func-
                                                             ness are common symptoms
               tioning of the body


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neutropenia: low number of neu-           P
trophils or wbc’s; may increase risk of
infection, depending on how low the
                                          p53 gene: tumor-suppressor gene that
count is and for how long
                                          has been found to have mutated in
                                          many people with lung cancer
neutrophil: type of white blood cell;
same as granulocyte
                                          palliative treatment: treatment
                                          designed to reduce the symptoms of a
neurotoxicity: tendency of some
                                          disease rather than to cure it
treatments to cause damage to the ner-
vous system
                                          Pancoast tumor: also called a pul-
                                          monary sulcus tumor; this type of
nodule: small solid mass
                                          nonsmall cell lung cancer begins in
                                          the upper portion of the lung and com-
nonsmall cell lung cancer: one of the
                                          monly spreads to the ribs and spine
two main categories of lung cancer;
includes three major subtypes of ade-
                                          partial response: indicates that
nocarcinoma, squamous or epidermoid
                                          tumors have shrunk, but not complete-
carcinoma, and large cell carcinoma
                                          ly disappeared as a result of therapy
nonverbal messages: messages con-
                                          pathologic fracture: broken bone
veyed without, or in addition to,
                                          often caused by metastases to the bone
words; examples include facial
                                          or other disease-related problems
expressions, tone of voice, body pos-
ture, gestures, and actions
                                          pathology: study of the nature of dis-
                                          ease and its causes, processes, devel-
                                          opment, and consequences
O
                                          pathologist: doctor who specializes
oat cell carcinoma: another name for      in the nature, structure, and identifica-
small cell lung cancer                    tion of disease

observation: watching the patient         peer support: structured relationship
and offering treatment only when          in which people meet in order to pro-
symptoms increase or change               vide or exchange emotional support
                                          with others facing similar challenges;
oncologist: physician who specializes     often involves one-on-one contact,
in the study, diagnosis, and treatment    rather than group contact
of cancer
                                          pericardial effusions: fluid inside the
oncology: study of the development,       membrane that surrounds the heart
diagnosis, treatment, and prevention
of cancer                                 peripheral neuropathy: inflamma-

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               tion, injury, or degeneration of the               photosensitizer: light-sensitizing
               peripheral nerve fibers; this condition            drugs use in photodynamic therapy
               may be caused by disease or treatment
                                                                  pilot study: experimental use of a
               personal advocate: someone who                     treatment in a small group of patients
               speaks on another’s behalf, particular-            to learn if it will be effective and safe
               ly when that person is not well enough             on a broad scale
               to speak for him/herself
                                                                  placebo: inert substance, i.e. a sugar
               phase I trial: phase of clinical trials            pill; may be used in clinical trials to
               in which the safety and dosage levels              compare treatments
               are evaluated; because many treat-
               ments are new there may be risks to                plasma: liquid part of the blood,
               participants, therefore these trials are           lymph, and intracellular fluid in which
               only open to a small number of partic-             cells are suspended
               ipants who have advanced disease
                                                                  plasma cell: antibody-producing cell
               phase II trial: these trials focus on              found in lymphoid tissue
               tumor response and side effects that
               may not have been seen in phase I tri-             platelet: blood cell that helps to con-
               als; phase II trials are open to a larger          trol bleeding by causing clotting; also
               number of participants                             called thrombocyte

               phase III trial: After a treatment has             platelet count: measurement of the
               been evaluated through phase I and II              number of platelets
               trials and shown to be effective and the
               potential benefit outweighs any risks              platinum-based therapy: some
               of known side effects, it is compared              chemotherapy drugs contain this metal
               to standard treatment, in a phase III
               trial; evaluates safety, eff i c a c y, dosing     pleura: two thin membranes, separat-
               and side effects in a large group of               ed by fluid, that cover the lungs and
               patients                                           line the chest cavity

               phase IV trial: this type of trial occurs          pleural effusion: fluid that collects
               once the treatment has been approved               between lungs and the lining of the
               by the Food and Drug A d m i n i s t r a t i o n   chest wall; also called pleural fluid
               (FDA) and is being marketed; phase IV
               trials are designed to study side eff e c t s      pleurodesis: elimination of the space
               that may have become apparent after                between the tissues in the chest cavity
               the phase III study                                and the pleura thereby helping to prevent
                                                                  the build-up of fluid within that space
               photodynamic therapy: use of a
               laser and a light-sensitizing drug as              pneumonectomy: surgical removal
               treatment for cancer                               of one lung

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port: well-defined area mapped out          pulmonologist: doctor specializing in
for radiation                               the treatment of lung diseases

PET scan (positron emission tomog-
raphy): a scanning mechanism that           Q
produces detailed images of the inside
of the human body and its metabolic
                                            quality of life: relates to the general
functions
                                            ability to enjoy life
practical support: expressions of
caring and concern that focus on get-
ting a task accomplished (for example,      R
transportation to and from treatment)
                                            rad (radiation absorbed dose): mea-
premalignant: early cellular changes        surement of the amount of radiation
that may develop into cancer                absorbed by tissues

prevention: reduction of cancer risk        radiation: energy carried by waves
by eliminating or reducing contact          or a stream of particles
with carcinogenic agents
                                            radiation oncologist: physician who
p r i m a ry tumor: tumor at the original   specializes in radiation therapy for
cancer site                                 treatment of cancer

prognosis: prediction of the probable       radiation physicist: person who
course and outcome of a disease,            ensures that the radiation machine
based on averages calculated from a         delivers the right amount of radiation
large population
                                            radiation surgery: also known as
progression: process of spreading or        radiosurgery and stereotactic external
become more severe; said of diseases        beam irradiation; a type of therapy
and symptoms                                that delivers a single high dose of
                                            radiation directly to the tumor, sparing
prophylactic: guarding against or           the healthy tissue from the effects of
preventing disease                          the radiation

protocol: medical treatment plan            radiation therapy: x-ray treatment
                                            that damages or kills cancer cells
psychosocial support: support
designed to meet psychological and          radioactive iodine: often used in
social needs                                diagnosis and as a treatment for some
                                            forms of cancer; radioactive iodine is a
pulmonary: relating to the lungs            radioactive form of the element iodine


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               radioimmunotherapy: new type of            regimen: the plan that outlines the
               therapy involving the injection of a       dosage, schedule and duration of treat-
               radioactive antibody into the body         ment

               radiologist: a physician with training     regional involvement: the spread of
               in reading diagnostic x-rays and per-      cancer from its original site to nearby
               forming specialized x-ray procedures       surrounding areas

               radiosensitization: drugs which            regression: reduction in symptoms or
               make tumor cells more sensitive to the     disease process
               effects of radiation therapy
                                                          relapse: reappearance of disease after
               randomized clinical trial: clinical        it has disappeared
               trial that uses chance to sort partici-
               pants into groups; randomizing pro-        relative risk of cancer: likelihood
               vides a mechanism based on numbers         that a person exposed to a cancer-
               whereby the groups will have similar       causing agent will develop cancer
               characteristics and comparisons
               between treatments will be valid           remission: complete disappearance of
                                                          cancer cells and symptoms; does not
               radon: colorless, odorless gas; expo-      always mean the individual has been
               sure to radon may increase risk for        cured
               developing lung cancer
                                                          repress: to unconsciously block
               recurrence: reappearance of a disease      awareness of one’s own distressing
               and its symptoms after a remission         thought(s) or feeling(s)

               recurrent cancer: cancer that has          resectable: able to removed surgically
               come back after treatment; recurrent
               cancer may occur in the original site      research protocol: a general treat-
               or it may return elsewhere in the body     ment plan that several hospitals use
                                                          for one type of cancer
               red blood cell (RBC): blood cell that
               carries oxygen to the cells of the body    respiration: the exchange of oxygen
               and removes carbon dioxide                 and carbon dioxide between the
                                                          atmosphere and the cells of the body
               red blood cell count: measurement
               of the number of red blood cells           risk factor: any factor that may
                                                          increase a person’s chances of devel-
               refractory cancer: cancer that does        oping cancer (for example, smoking)
               not respond or stops responding to
               treatment                                  risk re d u c t i o n: techniques used to
                                                          reduce the chances of developing cancer


        G.16
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S                                           sputum: mucus coughed up from the
                                            bronchial tubes
screening: checking for disease when
                                            sputum cytology: examination of
there are no symptoms
                                            cells in sputum, usually used to look
                                            for presence of cancer cells
secondary tumor: a tumor that
develops as a result of metastases or
                                            squamous carcinoma: one of the
spread beyond the original cancer
                                            subtypes of nonsmall cell lung cancer;
                                            also called epidermoid carcinoma
segmental resection: refers to the
surgical removal of a segment or
                                            stable disease: cancer that is not
wedge of lung tissue
                                            growing or shrinking
self-esteem: positive feelings about
                                            stage: a determination of the extent
oneself; sense of self-respect
                                            of a newly diagnosed cancer
sequential: following one treatment
                                            stage I nonsmall cell lung cancer:
after another
                                            cancer that is only in one lung and has
                                            not spread; stage I lung cancer is fur-
side effect: secondary effect caused
                                            ther divided into stage Ia and Ib and is
by cancer treatment
                                            usually resectable
simulation: process involving special x-
                                            stage II nonsmall cell lung cancer:
ray pictures that are used to plan radia-
                                            cancer that has spread to nearby
tion treatment
                                            lymph nodes; stage II lung cancer is
                                            further divided into stage IIa and IIb
single-blinded trial: clinical trial in
                                            and is usually resectable
which the participants do not know
the type of treatment they are receiv-
                                            stage III nonsmall cell lung cancer:
ing, but the physician or person
                                            cancer that has spread to surrounding
administering the treatment does know
                                            structures and to the lymph nodes;
                                            stage III is further divided into stage
small cell lung cancer: one of the
                                            IIIa (usually can be resected) and IIIb
two main categories of lung cancer;
                                            (cannot be resected)
may also be called oat cell lung cancer
                                            stage IV nonsmall cell lung cancer:
solid tumor: cancer of the body tis-
                                            cancer that has spread to other parts of
sues other than blood, bone marrow or
                                            the body; cannot be resected
lymphatic system; lung cancer is clas-
sified as a solid tumor
                                            staging: a method for determining
                                            how far and to where a cancer has
sporadic: disease that is apparently
                                            spread
not hereditary

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               standard treatment: treatment that          supraclavicular lymph nodes:
               has been proven effective and is com-       lymph nodes above the clavicle
               monly used
                                                           surgeon: a physician who treats dis-
               sterility: inability to conceive or pro-    ease and injury by performing an
               duce a child                                operation

               s t e roid therapy: treatment with corti-   surgery: an operation
               costeriod drugs to reduce symptoms of
               inflammation such as swelling and pain      surgical biopsy: surgical removal of
                                                           a segment of tissue for analysis
               stomatitis: inflammation of the mouth
                                                           surgical resection: removing tissue
               stress: any experience that taxes an        from the body through a surgical pro-
               individual’s energy or well-being;          cedure
               stress may be physical, mental, or
               emotional                                   surveillance: regular checks for signs
                                                           of cancer
               strontium-89: a radioactive com-
               pound absorbed by the bone; it is           survivorship: living with a history of
               given by injection and used to relieve      cancer, from the time of diagnosis on,
               cancer pain                                 regardless of treatment outcome

               subcutaneous: beneath the skin              symptom: something that indicates
                                                           the presence of an abnormality in rela-
               subcutaneous port: a catheter in a          tion to the body and/or its functions
               vein for delivery of medication and
               fluids that will be administered repeat-    systemic: affecting the whole body
               edly, or over a period of time
                                                           systemic disease: disease that affects
               supplementation: adding nutrients           the whole body rather than only an org a n
               such as vitamins to the diet
                                                           systemic treatment: treatment that
               support group: group of individuals         reaches cells all over the body by trav-
               who meet on a regular basis to              eling through the bloodstream
               exchange mutual support, often focus-
               ing on a shared area of difficulty
                                                           T
               support network: an individual’s full
               range of support resources
                                                           taste alteration: temporary change in
                                                           taste that may be a side effect of
               supraclavicular: above the clavicle
                                                           chemotherapy, cancer, or radiation
               or collarbone


        G.18
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terminal: describes an advanced           tissue culture: the technique or
stage of the disease with limited life    process of keeping tissue alive and
expectancy                                growing in a culture medium

therapy: treatment                        tolerance: ability to endure the
                                          effects of a drug without exhibiting
thoracentesis: removal of fluid, by       the usually unfavorable effects
needle, from the space between the
lungs and chest wall                      topoisomerase inhibitors: a class of
                                          drugs that have chemotherapeutic
thoracic: relating to the thorax          activity

thoracic surgeon: a physician who         total parenteral nutrition (TPN):
performs surgery on disease and           the procedure in which nutrients are
injury in the thoracic area               supplied directly to the bloodstream

thoracoscope: instrument fitted with      toxicity: the state of being poisonous
a lighting system and telescopic
attachment, designed for examining        tracer: a substance, frequently a
the chest cavity                          radioisotope, used in imaging proce-
                                          dures to diagnose disease or to evalu-
thoracotomy: surgical procedure in        ate response to treatment
which an incision is made through the
chest wall to examine structures in the   trachea: windpipe; leads from the
chest for the presence of cancer or       larynx to the bronchial tubes
other disease
                                          tranquilizer: drug that reduces feel-
thorax: the upper part of the trunk       ings of anxiety, worry, or fear
between the neck and the abdomen
                                          transfusion: infusion of whole blood
thrombocyte: blood cell that helps to     or blood components into the blood-
control bleeding by causing clotting;     stream
also called platelet
                                          treatment port or field: the place on
thrombocytopenia: low number of           the body at which the radiation beam
thrombocytes (platelets) in the blood     is aimed

thrush: a yeast infection of the oral     tumor: abnormal growth of tissue
(mouth) cavity                            that may be benign or malignant

tissue: group of similar cells that       tumor board: group of specialists
works together to perform a specific      who meet regularly to discuss manage-
function                                  ment of individuals who have cancer


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               tumor burden: amount of cancer            body to stimulate an immune response
               cells that are present in the body        to a tumor or specific disease

               tumor-derived: taken from a patient’s     vein: blood vessel that carries blood
               own tumor-tissue; may be used to          to the heart
               develop a vaccine for enhancing the
               b o d y ’s immune response to the tumor   venipuncture: process in which the
                                                         vein is punctured in order to draw a
               tumor marker: proteins and other          blood sample, give a medication, or
               substances found in the blood that sig-   start an intravenous drip
               nify the presence of cancer some-
               where in the body                         video-assisted thoracoscopic
                                                         surgery: surgery using a video cam-
               tumor suppressor genes: genes that        era to project and enlarge the image of
               act to inhibit or suppress cancerous      the tumor on a television screen
               tumor growth; when mutations occur
               in tumor suppressor genes, cancerous      vinca alkaloids: a class of anticancer
               growths are then able to form             drug

                                                         virus: infectious agent that can cause
               U                                         many illnesses, including the common
                                                         cold; in cancer therapy, sometimes
                                                         made into vaccines
               ultrasound: medical test that uses
               sound waves to create an image of the
                                                         visceral pleura: the part of the pleural
               inside of the body
                                                         membrane which surrounds and sepa-
                                                         rates the different lobes of the lung
               ultraviolet radiation: a form of high-
               energy radiation used in the treatment
                                                         visualization: technique that involves
               of cancer
                                                         focusing on imagined mental pictures,
                                                         used for problem-solving, self-healing,
               undifferentiated cell: cell that lacks
                                                         or stress-reduction
               a specialized structure and function

               unresectable: unable to be surgically
               removed                                   W
                                                         watchful waiting: close monitoring
               V                                         of a patient’s condition without actual
                                                         treatment until symptoms appear
               vaccination: treatment with a vaccine
                                                         white blood cell (WBC): term for a
                                                         variety of cells that are part of the
               vaccine: a substance injected into the
                                                         immune system and fight infection,


        G.20
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produce antibodies, and attack and
destroy cancer cells in the body

white blood cell count: measurement
of the total number of white blood cells


X
x-ray: high-energy electromagnetic
radiation that is used in low doses to
diagnose disease and in high doses to
treat cancer




                                                                   G.21
ALCASE 1-800-298-2436
    Alliance for Lung Cancer Advocacy, Support, and Education


    ALCASE
             The Alliance for
Lung Cancer Advocacy, Support and Education
           1601 Lincoln Avenue
           Vancouver, WA 98660

          800.298.2436 360.696.2436
                fax 360.699.1944
                 info@alcase.org
              http://www.alcase.org




       The ALCASE Lung Cancer Manual
   has been funded through educational grants
from ALZA Pharmaceuticals and Lilly Oncology

				
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