FSAC Lung Cancer Booklet by badi100

VIEWS: 24 PAGES: 130

									                                            5th edition




                  Lung Cancer



People with cancer who actively participate in thei
care along with their health care team will improve
quality of their lives and may enhance the possibili
recovery. People with cancer who actively participa
their care along with their health care team will im
the quality of their lives and may enhance the poss
People with cancer who actively participate in thei
care along with their health care team will improve
quality of their lives and may enhance the possibili
recovery. People with cancer who actively participa
in their care along with their health care team will
improve the quality of their lives and may enhance
possibility of recovery. People with cancer who acti
participate in their care along with their health car
team will improve the quality of their lives and ma
enhance the possibility of recovery. People with ca
who actively participate in their care along with the
health care team will improve the quality of their li
and may enhance the possibility of recovery. Peopl
with cancer who actively participate in their care a
Dedicated to all the people affected by lung cancer who shared their
stories, experiences, and wisdom to make this guide possible, as
well as health professionals who provided the most recent medical
information about lung cancer diagnosis and treatment.
Table of Contents
           C H A P T E R 1 / E M P O W E R Y O U R S E L F .................................................................... 1
           	    Gain	control		......................................................................................................................1
           	    You	are	not	alone		..............................................................................................................2
           	    Ten	ways	to	become	empowered	and	Patient	Active		.......................................................3
           	    Patient	Active	communication		.........................................................................................5


           C H A P T E R 2 / U N D E R S TA N D Y O U R L U N G C A N C E R ........................................ 7
           	    Non-Small	Cell	Lung	Cancer	(NSCLC)		. ............................................................................9	
           	    Small	Cell	Lung	Cancer	(SCLC)		. .....................................................................................10
           	    Risk	factors	......................................................................................................................10	
           	    Screening		........................................................................................................................11	
           	    Diagnosis	and	staging		. ....................................................................................................11
           	    Finding	a	lung	cancer	specialist		.....................................................................................14
           	    Understanding	your	health	care	team		. ...........................................................................15
           	    Seeking	a	second	opinion		. ..............................................................................................17
C H A P T E R 3 / M A k i N G T R E AT M E N T D E C i S i O N S .......................................... 19
	   Learning	the	language		....................................................................................................20	
	   Learning	about	potential	side	effects		.............................................................................21
	   Preparing	for	treatment		..................................................................................................22
	   Treatment	decision-making	worksheet		. .........................................................................23
	   Understanding	treatment	for	lung	cancer		. .....................................................................25
	                      .
    Standard	therapies		 .........................................................................................................25
	   Newer	therapies		. .............................................................................................................27
	                   .
    Palliative	care		 .................................................................................................................31
	                   .
    Clinical	trials		 ................................................................................................................. 	31



CHAPTER 4 / UNDERSTANDiNG NSCLC AND i TS TREATMENT ..................... 33
	   Staging	of	NSCLC		. ...........................................................................................................34
	   Treatment	of	NSCLC	by	stage		. ....................................................................................... 	36
	   Treatment	of	recurrent	NSCLC		. ......................................................................................38


C H A P T E R 5 / U N D E R S TA N D i N G S C L C A N D i T S T R E AT M E N T .............. 41
	   Staging	of	SCLC	...............................................................................................................42
	   Treatment	of	SCLC	by	stage		. ...........................................................................................42
	   Treatment	of	recurrent	SCLC		.........................................................................................43
	
C H A P T E R 6 / M A N A G i N G S i D E E F F E C T S ........................................................ 45
	   Side	effects		. .....................................................................................................................46
	   	     Fatigue		......................................................................................................................46
	   	     Difficulty	breathing		..................................................................................................48
	   	     Managing	low	blood	counts		.....................................................................................48
	   	     Anemia		.....................................................................................................................50
	   	     Bleeding	....................................................................................................................50
	   	     Gastro-intestinal	system	changes		............................................................................51
	   	     Changes	in	appearance		............................................................................................55
	   	     Pain	and	discomfort		.................................................................................................56
	   	     Pain	from	nervous	system	changes		..........................................................................57
	   	     Hypertension		. ...........................................................................................................58
	   	     Changes	in	sexual	functioning	and	fertility		.............................................................59
	   The	importance	of	physical	activity		...............................................................................60
	   “Chemobrain”	–	cognitive	dysfunction		..........................................................................61
	   Complementary,	integrative,	or	alternative	medicine		...................................................62
	   Mind-body	connection		. ..................................................................................................63
C H A P T E R 7 / Q U A L i T Y O F L i F E ........................................................................... 65
	    Distress	and	the	emotional	impact	of	lung	cancer		. ........................................................65
	    Anger		...............................................................................................................................67
	    Depression	and	anxiety		..................................................................................................68
	    Stress	and	the	immune	system		.......................................................................................69
	                        .
     Dealing	with	stress		 .........................................................................................................70
	    Getting	the	support	you	need		. ........................................................................................71
	    Relationships		..................................................................................................................75
	    Talking	with	children		......................................................................................................75
	    Intimacy		. .........................................................................................................................77
	    Spirituality		......................................................................................................................78
	    Caregivers		.......................................................................................................................79


C H A P T E R 8 / P R A C T i C A L C O N C E R N S ............................................................... 81
	   Employment	issues		..........................................................................................................81
	   Insurance	and	financial	concerns		...................................................................................82
	   Legal	issues		......................................................................................................................83
	   Practical	end-of-life	plans		...............................................................................................84
	   Keeping	a	hopeful	attitude		..............................................................................................85


C H A P T E R 9 / R E S O U R C E S & G L O S S A R Y .......................................................... 87
	   Resources		. ........................................................................................................................87
	   Glossary		...........................................................................................................................92
PROLOGUE


You	are	not	alone.	A	diagnosis	of	cancer	is	          For	the	Fifth	Edition,	Cancer	Support	              As	you	read	this	booklet,	you	become	part	of	
stressful,	with	the	three	biggest	stressors	          Community	(CSC)	and	Lung	Cancer	Alliance	           a	global	cancer	support	community	and	you	
being	loss	of	control,	loss	of	hope,	and	             (LCA)	have	joined	together	to	update	this	          will	find	you	are	not	alone—there is a whole
unwanted	aloneness.	Learning	that	you	or	             booklet	with	helpful	information	for	people	        community behind you.
someone	you	love	has	lung	cancer	can	be	              with	lung	cancer	and	their	caregivers.	It	is	our	
frightening.	You	may	ask	yourself:	“Now	              hope	that	it	offers	insight	into	managing	a	
what?”	It	is	important	to	know	you	can	               diagnosis	of	lung	cancer,	making	treatment	
become	an	active	participant	in	your	                 decisions,	and	coping	with	the	emotional	and	
recovery.	By	becoming	more	informed	and	              practical	challenges	people	with	cancer	face.	
learning	skills	to	help	you	regain	control	and	
maintain	hope,	we	believe	that	you	and	your	
loved	ones	will	be	empowered	to	get	the	best	
medical	care	possible	and	to	enjoy	more	of	
life’s	precious	moments.	




i     f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
PA R T N E R S




Cancer Support Community (CSC)                      Lung Cancer Alliance
www.cancersupportcommunity.org                      www.lungcanceralliance.org

Backed by evidence that the best cancer             Lung Cancer Alliance (LCA) is the only national
care includes emotional and social support,         non-profit organization dedicated solely to
the Cancer Support Community offers these           providing support and advocacy for people living
services to all people affected by cancer. Likely   with or at risk for lung cancer. LCA’s Community
the largest professionally-led network of cancer    and Support Services include a range of services
support worldwide, the organization delivers        available free of charge including: A toll free
a comprehensive menu of personalized and            Information Line, a Phone Buddy Program, an
essential services. Because no cancer care          online support community, lung cancer-specific
plan is complete without emotional and social       support group information, and links to other
support, the Cancer Support Community has           resources as needed. LCA’s advocacy efforts
a vibrant network of community-based centers        include educating federal & state policy leaders
and online services run by trained and licensed     on the need for greater resources for lung
professionals. For more information, visit          cancer research including prevention, early
www.cancersupportcommunity.org.                     detection, and treatment. Information about
                                                    all LCA services can be found online at
In July 2009, The Wellness Community and            www.lungcanceralliance.org or by phone at
Gilda’s Club joined forces to become the            1-800-298-2436.
Cancer Support Community. The combined
organization provides high-quality psychological
and social support through a network of nearly
50 local affiliates, more than 100 satellite
locations and online.




                                                                                                       PRologuE   ii
“People with cancer who actively participate in their care along with
 their healthcare team will improve the quality of their lives and may
 enhance the possibility of recovery.”

            —Dr. Harold Benjamin, Founder of The Wellness Community
          “For about a year, I was having this




                                                 Chapter one / eMpoWer YoUrSeLF
           pain in my chest. Several doctors
           told me that it was not cause for
           concern, but I was determined
           to find out what was causing the
           pain. Eventually, I was diagnosed
           with lung cancer, and the tumor
           was right behind my sternum
           where I was feeling pain. We
           caught the cancer early, and my
           doctors were able to treat it with
           surgery alone, no chemo. I feel
           really lucky – I’m the reason for
           early detection.

                                    — Marilyn




Empower Yourself
Chapter one / eMpoWer YoUrSeLF




                                 C h a p t e r 1 / e M p o W e r Y o U r S e L F ....................................................................1
                                 	   Gain	control	. .......................................................................................................................1

                                 	   You	are	not	alone	................................................................................................................2

                                 	   Ten	ways	to	become	empowered	and	Patient	Active	.........................................................3

                                 	   Patient	Active	communication	...........................................................................................5
Empower Yourself
                                            Empowering	patients	to	gain	the	knowledge	and	coping	skills	to	find	the	best	
Empowerment refers to increasing the
knowledge, spirituality, and social or      treatment	and	support	is	one	approach	that	has	been	effective	for	thousands	
economic strength of individuals and        of	lung	cancer	survivors.	Cancer	Support	Community’s	empowerment	
communities. It often involves developing
confidence in one’s own capacities.
                                            approach,	embraced	by	LCA	for	this	booklet,	is	called	the	Patient	Active	
                                            Concept©:	

                                                             People with cancer who actively participate in their care along
                                                             with their health care team will improve the quality of their
                                                             lives and may enhance the possibility of recovery.


                                            GAiN CONTROL

                                            This	booklet,	based	on	the	Patient	Active	Concept,	is	designed	to	empower	readers	to	become	
                                            educated	and	ask	informed	questions	about	lung	cancer	care	and	treatment.	Being	Patient	
                                            Active	is	about	feeling	and	acting	empowered.	Your	active	participation	in	the	choices	you	
                                            make	with	your	health	care	team	can	make	a	big	difference	in	your	cancer	experience	and	the	
                                            quality	of	your	life.	Choosing	to	be	Patient	Active	is	not	about	making	monumental	decisions;	it	
                                            is	a	process	of	taking	small	steps	that	can	help	you	regain	a	sense	of	control	over	your	treatment	
                                            and	your	life	with	cancer.




                                                                                            CHAPTER 1 / EMPoWER youRsElf                     1
YOU ARE NOT ALONE


It	is	common	for	people	diagnosed	with	               Lung cancer-specific challenges                        S
                                                                                                         •		 	 ociety challenges:	Society	sees	lung	
lung	cancer	to	feel	alone	at	first	and	even	                                                                cancer	as	a	disease	of	smokers—people	
                                                      A	diagnosis	of	lung	cancer	can	bring	
isolated.	Many	people	say	they	feel	like	no	                                                                who	willfully	brought	their	disease	on	
                                                      additional	challenges	because	of	how	this	
one	understands	what	they	are	now	going	                                                                    themselves.	Lung	cancer	patients	who	
                                                      cancer	diagnosis	is	perceived.	Often,	there	is	
through.	It	is	also	common	to	be	scared,	                                                                   never	smoked	are	often	assumed	to	have	
                                                      a	sense	of	guilt,	anger,	and	even	blame	that	is	
confused,	and	even	angry.	This	is	a	whole	                                                                  been	smokers	and	can	be	particularly	
                                                      associated	with	a	lung	cancer	diagnosis.	The	
“new	normal”	and	navigating	lung	cancer	                                                                    upset	about	being	included	in	this	group.	
                                                      burden	of	these	emotions	can	hinder	your	
can	be	complicated.	However,	by	learning	as	
                                                      recovery.		Being	Patient	Active	can	help	you	      The	fact	is,	60%	of	people	newly	diagnosed	
much	as	you	can	about	your	lung	cancer,	you	
                                                      understand	and	cope	with	these	challenges	         with	lung	cancer	either	quit	smoking	many	
can	begin	to	take	back	control.	You	will	feel	
                                                      and	misperceptions.                                years	ago	or	never	smoked.	It	is	important	to	
more	confident	about	your	next	steps	if	you	
                                                                                                         remember	that	lung	cancer	is	a	disease;	it	is	
become	an	active	partner	with	your	health	
                                                         I
                                                      •	 	 ndividual challenges: The	person	with	        not	tobacco	addiction.	Everyone	diagnosed,	
care	team,	ensure	that	you	have	a	network	of	
                                                         lung	cancer	who	smoked	may	feel	guilty	         regardless	of	smoking	status,	is	entitled	to	
support,	and	learn	how	to	reduce	stress	and	
                                                         and	accept	the	blame	of	societal	and	           compassion	and	the	best	available	treatment.		
regain	hope.	Experiencing	a	renewed	sense	
                                                         family	reproaches.	Unfortunately,	some	         For	more	information	on	the	emotional	
of	hope,	no	matter	what	stage	of	cancer	you	
                                                         people	find	this	challenge	so	stressful	that	   impact	of	a	lung	cancer	diagnosis,	please	
have,	is	invaluable.
                                                         they	consider	not	pursuing	appropriate	         refer	to	Chapter	7	on	Quality	of	Life.
                                                         treatment	due	to	self-blame.	
                                                                                                         People	with	lung	cancer	and	their	caregivers	
                                                      •		 Family challenges:	Family	members	
                                                                                                         can	take	control	back	by	learning	to	cope	and	
                                                         of	people	with	a	history	of	smoking		
                                                                                                         live	with	lung	cancer.	There	are	steps	you	can	
                                                         may	blame	the	patient	for	developing	lung	
                                                                                                         take,	and	we	will	help	you.
                                                         cancer.




2     f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Ten Ways to Become Empowered                       or	going	to	the	movies	to	take	a	break.	           5. Seek relaxation.	“Relaxation”	refers	to	
and Patient Active                                 Take	someone	with	you	to	medical	                     a	calm,	controlled	physical	state	that	will	
                                                   appointments	to	take	notes	and	help	you	              enhance	your	well-being.	Take	relaxing	
Be informed.                                       remember	important	information.                       breaks	in	your	daily	routine:	listen	to	
Take action.                                                                                             music	that	makes	you	happy,	read	a	book,	
                                                3. Acknowledge and express your
Connect with others.                                                                                     or	take	a	walk.	Take	time	to	enjoy	the	
                                                   feelings.	Take	time	just	to	listen	to	your	
                                                                                                         moment.	Consider	joining	a	yoga,	tai-chi,	
                                                   body	and	to	the	things	you	are	saying	
                                                                                                         or	meditation	class.	Perhaps	watching	
You	can	become	a	proactive	participant	            to	yourself.	Once	you	are	more	aware	of	
                                                                                                         your	favorite	TV	show	can	put	you	in	a	
in	managing	your	lung	cancer.	These	ten	           your	feelings,	express	them	by	talking,	
                                                                                                         relaxed	state.	Relaxation	is	something		
tips	can	strengthen	your	sense	of	control,	        writing,	physical	activity,	or	other	creative	
                                                                                                         that	you	might	have	to	learn,	but	it	is	easy	
boost	your	feelings	of	hope,	and	enhance	          pursuits.	Consider	joining	a	professionally	
                                                                                                         to	do.
the	quality	of	your	life.	Ways	to	implement	       facilitated	cancer	support	group	in	your	
these	suggestions	into	your	life	are	found	        area,	or	online,	to	address	your	feelings	in	      6. Retain as much control of your life as
throughout	this	publication.                       a	community	with	others	who	understand	               is reasonable.	If	you	feel	that	you	have	
                                                   the	stressors	of	lung	cancer.                         lost	control	to	health	professionals,	loved	
1. Stay in the moment.	Try	to	focus	on	                                                                  ones,	or	even	the	disease	itself,	decide	
                                                4. Do what you enjoy.	Continue	activities	
   resolving	only	today’s	problems—take	a	                                                               what	you	can	realistically	take	back	
                                                   that	you	enjoy	and	can	do	comfortably.	
   deep	breath,	and	take	one	step	at	a	time.                                                             (probably	most	things!).	Identify	the	areas	
                                                   Find	new	activities	if	you	feel	tired	or	have	
                                                                                                         in	your	life	in	which	you	could	benefit	
2. Ask for support.	Help	others	understand	        other	limitations.	Ask	friends	to	join	you,	
                                                                                                         from	assistance,	and	choose	what	help	
   what	you	need.	Be	as	open	as	you	can	           or	give	yourself	permission	to	be	alone	
                                                                                                         you	want.	Even	the	simplest	things	can	
   with	your	family	and	friends	about	             when	you	need	to	be.
                                                                                                         help	enhance	your	sense	of	control.
   how	they	can	support	you.	Offer	them	
   specific	examples,	such	as	driving	you	to	
   appointments,	helping	with	babysitting,	


                                                                                                    CHAPTER 1 / EMPoWER youRsElf                        3
7. Communicate with your health care                      Cancer	support	organizations,	such	as	         “The Patient Active Concept:
    team.	Prepare	a	list	of	questions	for	each	           Cancer	Support	Community	and	Lung	             Combining the will of the patient
    appointment.	Ask	for	clarification	of	                Cancer	Alliance,	can	help	you	connect	         with the skill of the physician—
    terms	you	do	not	understand.	Ask	for	a	               with	other	lung	cancer	survivors.
                                                                                                         a powerful combination.”
    copy	of	your	medical	records,	including	
                                                           H
                                                       10.		 ope for many things. Hope	is	desirable	
    the	pathology	reports	that	confirmed	                                                                                 Harold Benjamin, Ph.D.
                                                          and	reasonable.	There	are	millions	of	
    your	lung	cancer.	You	might	want	to	see	                                                                   Founder, The Wellness Community
                                                          people	in	the	world	today	for	whom	
    abnormal	x-rays	or	scans	to	get	a	better	
                                                          cancer	is	just	a	memory.	Even	if	your	own	
    understanding	of	your	status.	
                                                          cancer	recovery	does	not	seem	possible,	
8. Develop a plan.	This	plan	should	                      you	can	set	small	goals	and	enjoy	daily	
    coordinate	medical	and	emotional	care;	               pleasures.	Get	tickets	to	a	concert.	
    support	you	in	managing	your	illness;	link	           Participate	in	a	religious	study	class.	
    you	with	needed	psychosocial	services;	               Attend	a	birthday,	anniversary,	or	other	
    and	identify	support	organizations	that	              event	for	someone	you	love.	Redefine	
    can	assist	you	with	specific	needs.	Your	             how	you	perceive	hope.	People	who	find	
    doctors	and	caregivers	can	help.	You	                 things	that	give	them	hope	are	often	better	
    may	choose	to	consider	seeking	a	second	              equipped	to	handle	whatever	challenges	
    opinion	on	your	diagnosis	and	treatment	              lie	ahead.	Talk	about	what	gives	you	hope	
    plan	to	best	understand	your	options.	                and	what	you	hope	for	—	now	and	in	
                                                          the	future.	Share	these	hopes	with	your	
9. Spend time with other cancer
                                                          family,	friends,	and	the	members	of	your	
    survivors.	People	with	cancer	often	find	
                                                          health	care	team.
    a	sense	of	comfort	in	communicating	
    with	others	who	share	their	experiences—
    either	in	person,	online,	or	by	phone.	


4      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
PAT i E N T A C T i v E C O M M U N i C AT i O N


Learning	that	you	have	cancer	is	often	               B
                                                  •		 	 ring	a	friend	or	family	member	to	help	
frightening	and	overwhelming.	Talking	(and	          take	notes,	ask	questions,	and	provide	         QuEsTions To Ask youR HEAlTH
                                                                                                     CARE TEAM AbouT youR diAgnosis:
listening)	to	your	health	care	team	and	family	      support.	You	can	also	ask	if	you	may	
can	be	hard	sometimes.		Studies	show	that	           record	the	conversation.	                       •   What type of lung cancer do I have?

clear	communication	can	help	you	regain	                                                             •   What stage is my lung cancer, and has
                                                      A
                                                  •		 	 sk	to	see	x-rays	or	scans,	or	have	the	
a	sense	of	control,	feel	better	about	your	                                                              it spread to other parts of my body?
                                                     doctor	draw	a	diagram	if	you	think	
choices,	and	may	even	improve	the	quality	of	
                                                     pictures	will	help	you	understand	              •   What symptoms of lung cancer might
your	care.	
                                                     something	better.	                                  I experience?

Communicating	with	your	health	care	team	            W
                                                  •	 	 rite	down	questions	you	may	have	as	          •   What other types of tests will I need?
is	a	critical	part	of	your	treatment	and	your	       they	come	up.	Take	these	questions		
                                                                                                     •   Where can I find more information
fight	for	recovery.		One	of	the	most	important	      with	you	to	your	appointments.	Many	                about lung cancer?
things	you	can	do	is	ask	questions!		There	          people	have	found	keeping	a	notebook	
are	several	other	things	you	can	do	to	make	         with	these	questions	and	the	answers	is		
communicating	with	your	health	care	team	            a	helpful	tool.
easier:	

    M
•		 	 ake	sure	you	understand	what	is	being	      Cancer Support Community’s new program, Frankly Speaking About Cancer:
   discussed.	If	you	do	not	understand,	
                                                  Coping with the Cost of Care, addresses financial concerns about issues such
   ask	for	more	detail	or	a	non-technical	
                                                  as employment, insurance, and creditors. This national publication helps to shed
   explanation.	If	something	seems	
   confusing,	try	repeating	it	back	to	
                                                  light on the psychological impact of incurring debt, sometimes for the first time,
   your	doctor.	For	example,	“You	mean	I	         while coping with cancer.
   should…”	




                                                                                                  CHAPTER 1 / EMPoWER youRsElf                    5
    QuEsTions To Ask youR HEAlTH CARE TEAM                                QuEsTions To Ask AbouT youR doCToR
    AbouT youR TREATMEnT:                                                 And THE CliniC oR HosPiTAl:
    •   What are my goals for treatment (is it to cure the cancer,        •   How much experience do you have in treating my specific type
        control the cancer, or relieve symptoms)?                             of lung cancer?

    •   What treatment options are available for me?                      •   Are you board certified as an oncologist, thoracic surgeon,
                                                                              or are you certified in another specialty?
    •   Which treatment do you recommend, and why?
                                                                          •   How do you stay up-to-date on the latest lung cancer
    •   Where can I get a second opinion?
                                                                              treatments?
    •   What are the risks and benefits of each treatment option?
                                                                          •   Are you associated with a major medical center, medical
    •   What side effects might I experience, and how can they be             school, or comprehensive cancer center?
        managed or prevented?
                                                                          •   Do you and the hospital accept my type of insurance?
    •   Where will I go to receive my treatment?
                                                                          •   Will I be able to receive all treatments at this facility?
    •   When can I start my treatment, and how long will it last?
                                                                          •   Are cancer clinical trials offered at this facility?
    •   Are there treatment options I should consider if chemotherapy
                                                                          •   Is there an oncology nurse or social worker who will be
        isn’t appropriate or has stopped working?
                                                                              available during my treatment for education and support?
    •   Which treatments are covered by insurance?
                                                                          •   What other support services (support groups, housing,
    •   If insurance doesn’t cover this treatment, what options exist         transportation, etc.) are available at this facility for patients
        to help with finances?                                                and families?

    •   Are there any clinical trials that might be appropriate for me?
        Where can I go to get more information about clinical trials?




6       f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                     C h a p t e r t W o / U n d e r S ta n d Y o U r L U n g C a n C e r
                 “I never want to go to chemo and
                 dealing with side effects from my
                 treatment has been difficult, but
                 I try to remember the importance
                 of taking medications and doing
                 whatever has to be done to beat
                 this disease.”

                                           — Dave




Understand Your Lung Cancer
C h a p t e r t W o / U n d e r S ta n d Y o U r L U n g C a n C e r




                                                                       C h a p t e r 2 / U n d e r S ta n d Y o U r L U n g C a n C e r ...................................... 7

                                                                       	   Non-Small	Cell	Lung	Cancer	(NSCLC)	. .............................................................................9	

                                                                       	   Small	Cell	Lung	Cancer	(SCLC)		. .....................................................................................10

                                                                       	   Risk	factors	......................................................................................................................10	

                                                                       	   Screening	.........................................................................................................................11	

                                                                       	   Diagnosis	and	staging		. ....................................................................................................11

                                                                       	   Finding	a	lung	cancer	specialist		.....................................................................................14

                                                                       	   Understanding	your	health	care	team	. ............................................................................15

                                                                       	   Seeking	a	second	opinion	. ...............................................................................................17
Understand
     Your Lung Cancer
          Although	lung	cancer	is	the	second	most	common	form	of	cancer	diagnosed,	
          it	is	the	number	one	cause	of	cancer-related	deaths	in	the	United	States.	
          According	to	the	American	Cancer	Society,	there	are	approximately		
          400,000	people	living	with	lung	cancer	at	any	given	time.	

          Cancer	is	a	condition	in	which	cells	multiply	uncontrollably	to	form	growths	(called	tumors)	
          that	invade	and	destroy	normal	tissue.	Tumors	that	are	cancerous	are	called	malignant	and	
          noncancerous	tumors	are	called	benign.	Cancer	cells	can	spread	from	their	original	site	to	
          other	parts	of	the	body	in	a	process	known	as	metastasis.	Cancers	are	named	for	the	place	in	
          the	body	where	they	begin,	not	where	they	may	spread.


          Lung	cancer	begins	in	the	lungs—two	major	organs	in	the	chest	that	are	part	of	the	respiratory	
          system.	Each	lung	is	contained	in	a	sac	called	the	pleura.	The	right	lung	has	three	sections	
          (lobes),	and	the	left	lung	has	two.	Lung	cancer	is	sometimes	called	bronchogenic	cancer	
          because	most	cases	begin	in	the	cells	of	the	bronchi,	the	breathing	tubes	of	the	lungs.	


          Many	people	with	lung	cancer	have	no	symptoms	or	only	vague	symptoms	until	the	disease	has	
          progressed	significantly.	The	lungs	have	very	few	nerve	endings,	and	a	tumor	may	be	present	
          without	feelings	of	pain	or	discomfort.	As	a	result,	only	15%	of	lung	cancers	are	discovered	in	
          the	earliest	stages,	when	the	possibility	of	cure	is	greatest.	




                                         C H A P T E R 2 / u n d E R s TA n d y o u R l u n g C A n C E R    7
There	are	two	main	categories	of	lung	                Symptoms	may	seem	unrelated	to	the	lungs	
cancer—non-small	cell	lung	cancer	(NSCLC)	            or	breathing.	Because	lung	cancer	is	most	         Histology is the study of cells and tissues
and	small	cell	lung	cancer	(SCLC).	The	               likely	to	be	diagnosed	at	a	later	stage,	it	may	   under a microscope. Different types of
difference	between	NSCLC	and	SCLC	has	                have	spread	to	the	other	lung	or	other	parts	      lung cancer correspond with differences
                                                                                                         in histology, thus it is important to
to	do	with	the	cell	of	origin	that	becomes	           of	the	body.	Depending	upon	where	the	
                                                                                                         understand and know the histology of
cancerous.	It	also	involves	the	appearance	of	        cancer	has	spread,	symptoms	can	include	
                                                                                                         your type of lung cancer in order to select
the	cells,	how	quickly	each	type	spreads	to	          headaches,	coughing	up	blood	(hemoptysis),	        the best treatment.
other	parts	of	the	body,	and	how	each	type	           weakness,	poor	appetite,	weight	loss,	bone	
responds	to	treatment.                                fractures,	or	blood	clots.	


                                                      The	more	you	know	about	your	particular	
                                                      type	of	lung	cancer	and	its	histology,	the	        “It is helpful to know the specific
                                                      better	you	will	be	able	to	make	treatment	          histology of your lung cancer since
                                                      decisions.	                                         there are certain drugs which are
                                                                                                          preferentially used with some
                                                                                                          histologies, but not others.”

                                                                                                                            — Dr. Nasser Hanna




8     f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
NON-SMALL CELL LUNG CANCER (NSCLC)


NSCLC	comprises	80-85%	of	all	lung	cancers	     Bronchioloalveolar carcinoma:                        Large cell carcinoma:
and	has	three	major	subtypes:	
                                                •	 	 s	a	rare	type	of	adenocarcinoma	that	
                                                   I                                                    R
                                                                                                     •	 	 epresents	about	10%	of	NSCLC	lung	
•	 Adenocarcinoma	                                 represents	only	3%	of	all	lung	cancers,		            cancers	in	the	United	States	
                                                   but	appears	to	be	on	the	rise
	   0			Bronchioloalveolar	carcinoma	                                                                   M
                                                                                                     •	 	 ay	start	in	any	part	of	the	lung	
                                                   I
                                                •	 	 nitially	spreads	through	tiny	sacs	in	
   S
•	 	 quamous	cell	carcinoma	                                                                            I
                                                                                                     •	 	 s	frequently	the	diagnosis	when	other	
                                                   the	lungs	called	alveoli	rather	than		
    (formerly	called	epidermoid	carcinoma)	                                                             types	of	lung	cancer	have	been	ruled	out	
                                                   in	solid	tumors	
•	 Large	cell	carcinoma	
                                                   M
                                                •	 	 ay	occur	in	those	with	a	history	of	
                                                   smoking	or	never	smokers,	but	the	
Adenocarcinoma:                                    majority	of	cases	occur	in	younger		
•	 	 ccounts	for	up	to	50%	of	the	NSCLC	lung	
   A                                               women	who	never	smoked	                                                     “I just kept asking
    cancer	cases	in	the	United	States	                                                                                          questions. I read
                                                Squamous cell carcinoma:                                                        up on anything
   I
•	 	 s	the	most	common	lung	cancer	
    diagnosed	in	women	                                                                                                         I could find, and
                                                   R
                                                •	 	 epresents	about	30%	of	NSCLC	lung	
                                                   cancers	in	the	United	States	                                                I asked people so
   U
•	 	 sually	starts	near	the	outer	edges	
                                                                                                                                I could learn.”
    of	the	lungs	                                  U
                                                •	 	 sually	starts	in	one	of	the	bronchi	
                                                                                                                                         — Cynthia
   M
•	 	 ay	occur	in	those	with	a	history	of	          F
                                                •	 	 requently	spreads	to	regional	lymph	
    smoking	but	is	the	type	most	often	found	      nodes	
    in	those	who	never	smoked	
                                                   I
                                                •	 	 s	strongly	associated	with	smoking	




                                                                               C H A P T E R 2 / u n d E R s TA n d y o u R l u n g C A n C E R      9
SMALL CELL LUNG CANCER
(SCLC)                                                  R i S k FA C T O R S F O R L U N G C A N C E R


   R
•	 	 epresents	15-20%	of	all	lung	cancers	in	           While	there	are	cases	where	people	cannot	              A
                                                                                                             •	 	 ge and sex. The	median	age	for	cases	of	
     the	United	States	                                 identify	the	cause	of	their	lung	cancer,	the	           lung	cancer	is	around	70	years	old.	As	with	
                                                        following	risk	factors	are	directly	linked	to	the	      most	cancers,	the	risk	of	developing	lung	
   T
•	 	 ypically	grows	and	spreads	more	rapidly	
                                                        disease.	                                               cancer	increases	as	a	person	ages.	
     than	NSCLC	
                                                                                                                E
                                                                                                             •	 	 nvironment.	Increased	risk	of	lung	
•	 	 s	seen	predominantly	in	smokers	or	
   I                                                       H
                                                        •	 	 istory of smoking.	Many	people	
                                                                                                                cancer	can	be	attributed	to	exposure	
     former	smokers	(about	98%	of	cases	are	               diagnosed	with	lung	cancer	have	a	history	
                                                                                                                to	high	levels	of	certain	natural	gases	
     attributed	to	smoking)	                               of	smoking	tobacco.	For	those	who	have	
                                                                                                                and	chemicals	such	as	radon,	uranium,	
                                                           ever	smoked,	the	risk	of	developing	lung	
   U
•	 	 sually	starts	in	one	of	the	larger	bronchi	                                                                arsenic,	and	bischloromethyl	ether.	
                                                           cancer	is	related	to	their	total	lifetime	
                                                                                                                Asbestos	is	also	a	major	risk	factor	for	
   H
•	 	 as	often	spread	beyond	the	lungs	by	                  exposure	to	cigarette	smoke.	This	is	why	
                                                                                                                cancer	in	the	lung.	
     the	time	of	diagnosis	                                many	people	are	diagnosed	with	lung	
                                                           cancer	long	after	they	quit	smoking.	                F
                                                                                                             •	 	 amily history.	In	some	cases,	genetics	
   I
•	 	 s	usually	responsive	to	initial	
                                                                                                                may	play	a	part	in	the	development	of	
     chemotherapy		                                     •	 Secondhand smoke. It	is	estimated	that	
                                                                                                                lung	cancer.	If	your	family	has	a	history	
                                                           every	year	at	least	3,000	people	in	the	
   W
•	 	 as	previously	called	“oat	cell”	cancer	                                                                    with	lung	cancer,	it	is	important	to	talk		
                                                           United	States	die	of	lung	cancer	caused	
     because	the	cells	are	small	and	oval,	like	                                                                to		your	doctor	about	risk.
                                                           by	secondhand	smoke,	for	example,	
     oat	grains	
                                                           from	living	with	a	smoker	or	working	             More	information	about	the	risks	for	lung	
For	more	information	about	small	                          in	a	location	where	smoking	is	or	was	            cancer	may	be	found	through	the	National	
cell	lung	cancer,	please	visit	Cancer	                     permitted.	                                       Cancer	Institute’s	website:		
Support	Community’s	website	at		www.                                                                         www.cancer.gov/cancertopics/types/lung.	
cancersupportcommunity.org	or	call	Lung	
Cancer	Alliance	at	800.298.2436.




10      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
SCREENiNG                                         D i A G N O S i S A N D S TA G i N G


People	who	think	that	they	may	be	at	risk	        Diagnosing	and	staging	lung	cancer	                 Tools Used to Diagnose and Stage
for	lung	cancer	because	of	smoking	history,	      (determining	the	extent	of	disease)	provides	       Lung Cancer
occupation,	or	family	health	history	should	      specific	information	needed	to	make	
                                                                                                      Health history
inform	their	doctor	and	discuss	appropriate	      decisions	about	which	treatment	options	
                                                                                                      In	diagnosing	lung	cancer,	it	is	critical	for	a	
diagnostic	testing.	There	are,	however,	no	       are	best	for	your	cancer.	Staging	involves	
                                                                                                      doctor	to	obtain	a	detailed	history	of	your	
official	screening	recommendations	for	           diagnostic	tests	that	identify	where	the	
                                                                                                      health:	
lung	cancer	at	this	time.	CT	(computed	           cancer	is	located	and	whether	it	has	spread	
tomography)	screening	remains	under	              in	the	body.	Treatment	decisions	are	made	              Y
                                                                                                      •		 	 our health history —	information	about	
investigation.	Studies	appear	to	show	the	        based	on	the	stage	of	the	lung	cancer.		               smoking,	exposure	to	environmental		
ability	of	CT	screening	to	detect	lung	cancer	    (Please	refer	to	Chapters	4	and	5	for	staging	         risk	factors,	and	any	significant	symptoms	
at	an	early	stage.	Ongoing	clinical	trials	are	   of	NSCLC	and	SCLC.)	                                   such	as	nagging	cough,	shortness	of	
being	conducted	to	determine	if	this	early	                                                              breath,	fatigue,	back	or	chest	pain.	
detection	will	lead	to	a	reduction	in	lung	
                                                                                                      •		 Your family health history —
cancer-related	deaths.	
                                                                                                         information	that	may	indicate	a	genetic	
                                                                                                         predisposition	to	lung	cancer.	




                                                             “A biopsy is required to definitively diagnose a lung cancer based
                                                             upon an abnormality detected on an x-ray.”

                                                                                                                  — Dr. Nasser Hanna




                                                                                C H A P T E R 2 / u n d E R s TA n d y o u R l u n g C A n C E R         11
Diagnostic tests                                           images)	is	recommended.	Both	CT	and	
Your	doctor	may	use	several	diagnostic	tests;	             MRI	scans	are	useful	in	determining	           fuTuRE diAgnosTiC TEsTs

the	most	common	are	described	below.	                      whether	lung	cancer	has	spread.	Chest	         Genetic markers. A gene or DNA
                                                           x-rays	are	also	used,	but	they	provide	less	   sequence has a known location on a
    B
•		 	 iopsy.	A	biopsy	is	the	only	reliable	                                                               chromosome and is associated with a
                                                           information.	
     way	to	confirm	the	presence	of	cancer	                                                               particular gene or trait. Genetic markers
     and	identify	its	type	and	stage.	In	this	              P
                                                        •		 	 ET scans. PET	(positron	emission	           are associated with certain diseases and
     procedure,	a	small	piece	of	tissue	is	                tomography)	scans	identify	rapidly	            cancers. Oncology researchers are trying
                                                                                                          to find genetic markers detectable in the
     examined	under	a	microscope	by	a	                     dividing	tumor	cells.	PET	scans	may	give		
                                                                                                          blood to determine if an individual is at
     pathologist.	The	tissue	is	removed	either	            a	more	accurate	picture	of	the	stage	of	
                                                                                                          risk for developing a lung cancer. In the
     through	a	thin	needle	(needle	aspiration)	            lung	cancer,	often	as	a	follow-up	to	other	    future, such markers may make it possible
     or	in	a	surgical	procedure	with	anesthesia	           tests	or	to	diagnose	recurrent	disease.	       to detect lung cancer earlier.
     as	appropriate.	Biopsies	of	the	chest	
                                                        •		 Sputum cytology. If	cancer	cells	are	in	
     lining,	lymph	nodes,	bone,	or	liver	may	
                                                           the	bronchi,	some	are	likely	to	be	carried	
     also	be	done.	
                                                           up	the	throat	in	mucus	from	the	airways	
    C
•		 	 T and MRI scans.	CT	(computed	                       called	sputum,	which	can	be	examined	for	
     tomography)	and	MRI	(magnetic	                        signs	of	cancer.	Sputum	can	be	coughed	
     resonance	imaging)	use	computers	to	                  up	or	collected	through	a	tube	called	a	
     produce	detailed,	three-dimensional	                  bronchoscope.	This	test	can	find	cancer	
     images	that	help	diagnose	lung	cancer	                cells	long	before	a	tumor	is	evident	on	
     and	can	determine	the	size,	shape,	and	               other	tests,	but	it	may	not	detect	cancers	
     location	of	a	tumor.	If	symptoms	of	lung	             deeper	in	the	lungs	and	cannot	determine	
     cancer	are	present,	a	contrast-enhanced	              a	tumor’s	size	or	location.	
     CT	scan	(a	special	contrast	agent	or	
     medical	dye	is	injected	to	create	clearer	


12      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Follow-up tests                                    •		 Endoscopic Bronchial Ultrasound                   •		 Thoracoscopy. This	is	a	limited	surgical	
If	further	clarification	about	your	diagnosis	         (EBUS).	This	procedure	uses	a	                        procedure,	performed	under	general	
is	needed	in	order	to	guide	the	most	effective	        bronchoscope	with	ultrasound	that	can	                anesthesia.	An	instrument	called	a	
course	of	treatment,	your	doctor	may	request	          view	more	distant	airways	and	regional	               thoracoscope	is	inserted	through	a	
one	or	more	follow-up	tests	for	additional	            lymph	nodes.	It	allows	these	areas	to	be	             small	incision	in	the	chest	wall	to	allow	
information:	                                          seen	and	biopsied	more	easily.                        examination	of	the	lining	of	the	chest	
                                                                                                             wall	and	the	surface	of	the	lungs	for	
•		 Bronchoscopy. This	procedure	                  •		 Mediastinoscopy.	In	this	procedure,	a	                tumors.	
    involves	the	use	of	a	flexible	tube-like	          rigid	instrument	called	an	endoscope	is	
    instrument	called	a	bronchoscope	to	               inserted	through	a	small	incision	in	the	         •		 Video-Assisted Thoracic Surgery
    view	the	airways	into	the	lungs	and	to	            neck	or	chest	into	the	area	known	as	the	             (VATS)	is	sometimes	used	to	diagnose	
    collect	tissue	samples.	Local	anesthesia	          mediastinum.	Anesthesia	is	used.	This	                lung	cancer	(See	Chapter	3:	Surgical	
    and	mild	sedation	are	generally	used.	             procedure	can	show	if	cancer	has	spread	              Techniques	for	more	information).	
    In	a	newer	technique	known	as	auto-                to	lymph	nodes	near	the	trachea—one	
    fluorescence	bronchoscopy,	chemical	               of	the	first	places	lung	cancer	is	likely	to	
    properties	of	tumor	cells	cause	them	to	           spread.	
    reflect	light	(fluoresce)	differently	than	
    normal	cells.	If	the	cells	do	not	fluoresce	   •		 Thoracentesis. If	fluid	is	collecting	
    normally,	a	sample	is	taken	to	determine	          between	the	lungs	and	the	chest	wall,	
    whether	they	are	cancerous.	                       a	needle	is	used	to	remove	some	of	the	
                                                       fluid	to	see	if	cancerous	cells	are	present.	




                                                                                   C H A P T E R 2 / u n d E R s TA n d y o u R l u n g C A n C E R    13
FiNDiNG A LUNG CANCER SPECiALiST


Like	most	cancers,	lung	cancer	is	best	treated	       Where can i find a lung cancer
                                                                                                      AddiTionAl REsouRCEs foR
when	it	is	diagnosed	early.	Treatment	options	        specialist?
                                                                                                      REfERRAl infoRMATion:
depend	upon	careful	identification	of	the	
                                                      Lung	cancer	specialists	focus	on	the	           •   The National Cancer institute
type	and	stage	of	your	lung	cancer.	Because	
                                                      diagnosis	and	treatment	of	this	disease.	The	       (1-800-4CANCER; www.cancer.gov),
there	are	many	types	of	lung	cancer,	it	is	
                                                      following	tips	may	provide	assistance	in	           for information about the nearest
crucial	that	your	type	be	diagnosed	and	
                                                      locating	a	lung	cancer	specialist:                  cancer center or Specialized Program
staged	accurately	and	promptly.	                                                                          of Research Excellence (SPORE) in
                                                         Y
                                                      •	 	 our	primary	doctor	or	your	insurance	          lung cancer.
A	biopsy	(tissue	sample)	is	essential	to	the	            company	can	often	recommend	an	
                                                                                                      •   Cancer.net (www.cancer.net),
diagnosis.	A	specialist	called	a	pathologist	            oncologist	or	lung	cancer	specialist.	
                                                                                                          oncologist-approved cancer information
(a	doctor	who	identifies	disease	by	studying	
                                                      •	 	 ou	may	consider	asking	a	friend,	local	
                                                         Y                                                from the American Society of Clinical
cells	and	tissues)	should	evaluate	the	tissue	                                                            Oncology, to search for an oncologist in
                                                         cancer	support	organization,	or		local	
sample	to	determine	whether	cancer	cells	                                                                 your area.
                                                         hospital	referral	networks.
are	present.	Ideally,	a	thoracic	pathologist	
(a	specialist	in	pathology	of	chest	illnesses)	          I
                                                      •	 	 f	possible,	seek	a	major	cancer	center	
should	be	involved.	You	may	need	to	seek	                or	university	hospital	for	your	first,	
out	a	clinical	cancer	center	or	university	              second,	or	third	consultation	about	your	
medical	center	to	find	a	qualified	pathologist,	         diagnosis.	You	may	also	want	to	seek	out	
especially	if	your	local	doctor	or	hospital	             an	NCI-designated	cancer	center	for	the	
does	not	see	many	cases	of	lung	cancer.                  latest	available	lung	cancer	treatment.




14    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
U N D E R S TA N D i N G Y O U R H E A LT H C A R E T E A M


To	learn	about	the	variety	of	treatment	          Radiation oncologist. A	radiation	                   Pathologist. A	pathologist	specializes	in	
options	available,	you	can	speak	with	one	or	     oncologist	specializes	in	treating	cancer	           diagnosing	lung	cancer	by	studying	tissue,	
more	oncology	professionals.	It	is	important	     using	various	forms	of	radiation	to	safely	and	      fluid,	or	blood	from	the	patient	using	a	
to	understand	each	person’s	role,	as	they	are	    effectively	treat	cancer	by	focusing	x-rays,	        variety	of	tools.	They	can	also	provide	
important	members	of	your	care	team.	             gamma	rays,	and	other	sources	of	radiation	          information	about	the	cancer	that	can	
                                                  directly	on	the	tumor	site	in	the	body.              help	the	rest	of	the	team	make	treatment	
Thoracic surgeon.	Some	thoracic	surgeons	
                                                                                                       decisions.	
are	trained	specifically	in	lung	surgery;	try	
                                                  Pulmonologist. A	pulmonologist	specializes	
to	talk	with	a	thoracic	surgeon	who	is	board-
                                                  in	treating	diseases	and	conditions	involving	
certified	and	specializes	in	lung	cancer.	If	
                                                  the	lungs.	They	may	be	active	in	the	diagnosis	
no	one	with	this	training	is	available,	find	a	
                                                  of	lung	cancer,	in	follow-up	after	treatment,	       “Choosing your doctor is a very personal
general	surgeon	who	performs	the	most	lung	
                                                  and	in	helping	manage	your	case	during	               decision. I emphasize that this is one of
cancer	surgeries	in	your	area.	
                                                  treatment.
                                                                                                        the most important relationships you’re
Medical oncologist.	A	medical	oncologist	is	      Rehabilitation specialist.	A	pulmonary	               going to have. You’d better trust and
a	doctor	who	specializes	in	diagnosing	and	       rehabilitation	specialist	can	reduce	                 like whomever you choose. It has to be
treating	cancer	using	chemotherapy,	and	          symptoms	and	side	effects	from	lung	cancer	           someone you can work with. Personality
who	may	coordinate	your	care	with	other	          and	its	treatments.	They	may	work	with	you		
                                                                                                        is important. Do you want someone
specialists.	It	is	good	to	work	with	a	medical	   to	teach	proper	breathing	techniques,	the	
                                                                                                        who will talk to you about everything,
oncologist	who	sees	a	significant	number	of	      proper	way	to	cough,	how	to	conserve	energy,	
                                                                                                        or just tell you what to do?
lung	cancer	patients	or	who	specializes	in	       and	how	to	improve	your	quality	of	life.
lung	cancer.	                                                                                                                                — Gloria




                                                                                 C H A P T E R 2 / u n d E R s TA n d y o u R l u n g C A n C E R    15
Oncology nurse.	Oncology	nurses	specialize	           Patient navigator.	Many	hospitals	and	
in	the	nursing	care	of	people	with	cancer.	           clinics	now	offer	the	assistance	of	a	patient	
Like	physicians,	they	may	specialize	in	              navigator.	A	patient	navigator	may	be	an	
the	surgical	or	medical	management	of	a	              oncology	nurse,	oncology	social	worker,	or	a	
patient’s	care.	They	are	often	a	valuable	            trained	lay	person.	A	navigator	is	available	to	
source	of	information	and	support.	Some	              assist	you	on	the	journey	through	the	health	
oncology	nurses	are	certified	to	administer	          care	system,	identify	members	of	your	health	
chemotherapy	or	other	treatments	for	your	            care	team,	and	explain	things	in	terms	you	
lung	cancer.	Some	oncology	nurses	also	have	          can	understand.
advanced	training	and	certification	as	nurse	
practitioners	or	clinical	nurse	specialists.	


Oncology social workers and counselors.	
                                                        bE PATiEnT ACTivE:
Social	workers	and	counselors	can	help	you	
cope	with	the	emotional	impact	of	cancer	               •   Make sure you feel comfortable with your doctor’s level of expertise.

and	help	identify	other	resources	you	may	              •   Do not hesitate to ask how many lung surgeries your surgeon performs each year.
need.	Do	not	underestimate	the	support	
                                                        •   Consider your doctor’s communication style and whether it fits well with yours.
these	individuals	provide.	Many	hospitals,	
cancer	centers,	and	oncology	specialists	have	
specially	trained	oncology	social	workers	
who	work	with	their	patients	through	group	
or	individual	counseling.




16    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
SEEkiNG A SECOND OPiNiON


Receiving	a	lung	cancer	diagnosis	is	often	
confusing	and	frightening.	Taking	time	to	        if you do sEEk AnoTHER doCToR’s oPinion, REMEMbER:

discuss	your	situation	with	additional	experts	   •   It is helpful to seek a second opinion before starting on a course of therapy so all options
is	very	helpful.	The	bottom	line	is,	you	want	        are open to you, including clinical trials. However, you can seek a second opinion any
                                                      point during your treatment.
to	feel	comfortable	and	confident	that	you	
are	receiving	the	best	treatment	possible	for	    •   Call the facility where you plan to go for the second opinion and make sure you
your	cancer.                                          understand what they need from you.

                                                  •   Ask your initial doctor for a complete copy of your medical records: x-rays, scans,
It	is	very	common	to	request	a	second	
                                                      medical reports, and pathology slides. To get your medical records in hand: request
opinion.	Some	insurance	plans	actually	               the documents several days in advance and sign an authorization form for the doctor
require	an	additional	medical	review	                 to release your records.
for	coverage.	Even	if	you	have	a	good	
                                                  •   While getting a second opinion is an important option, going from doctor to doctor
relationship	with	your	doctor,	you	may	want	
                                                      in search of a “magic” cure does not necessarily promise optimal therapy for your
to	seek	a	second	(and	sometimes	a	third)	
                                                      disease or support your mental health.
opinion	about	your	diagnosis	and	treatment	
plan.	Do	not	be	afraid	that	your	doctor	will	     •   Be wary of a quick or easy “cure” that does not seem consistent with the information
                                                      you have heard from other medical professionals.
be	offended	or	treat	you	differently.	A	good	
doctor	respects	your	need	to	confirm	that	
you	are	getting	the	best	available	treatment,	
and	appreciates	that	you	are	gathering	vital	
information	that	will	help	you	make	more	
informed	decisions	about	your	treatment.	




                                                                                 C H A P T E R 2 / u n d E R s TA n d y o u R l u n g C A n C E R    17
                            “It’s not that I sensed that I wasn’t getting good care, but I did always get a second
                            opinion. I don’t care if the doctor says to me, ‘Don’t you trust me?’ No! I want to live.
                            This is my life, and I am in control of it.”

                                                                                                            — Cassie




18   f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                           C h a p t e r t h r e e / M a k i n g t r e at M e n t d e C i S i o n S
                  “When I was first diagnosed
                  with lung cancer, I was too
                  overwhelmed and emotional to
                  evaluate the options on my own.
                  So I asked my brother and two
                  other friends (all physicians) to
                  serve as my ‘medical advisory
                      .
                  team’ It was important to have
                  information processed for me in a
                  way that I could deal with.”

                                                 — Jerry




Making Treatment Decisions
C h a p t e r t h r e e / M a k i n g t r e at M e n t d e C i S i o n S




                                                                           C h a p t e r 3 / M a k i n g t r e at M e n t d e C i S i o n S ......................................... 19

                                                                           	   Learning	the	language	. ....................................................................................................20	

                                                                           	   Learning	about	potential	side	effects	. .............................................................................21

                                                                           	   Preparing	for	treatment		..................................................................................................22

                                                                           	   Treatment	decision-making	worksheet		. .........................................................................23

                                                                           	   Understanding	treatment	for	lung	cancer	. ......................................................................25

                                                                           	                      .
                                                                               Standard	therapies		 .........................................................................................................25

                                                                           	   Newer	therapies		. .............................................................................................................27

                                                                           	   Palliative	care	..................................................................................................................31

                                                                           	   Clinical	trials	.................................................................................................................. 	31
Making Treatment Decisions
          No	one	is	more	qualified	than	you	to	make	choices	about	your	treatment,	
          your	quality	of	life,	and	your	future.	Consider	the	members	of	your	health	
          care	team	as	consultants	who	can	help	you	and	your	family	with	those	
          decisions.	You	will	feel	a	greater	sense	of	control	over	your	situation,	your	
          treatment	plan,	and	your	future	as	you	gain	information.	

          There	are	many	new	medical	terms	to	learn	and	understand	when	you	are	
          diagnosed	with	lung	cancer.	The	following	phrases	and	terms	are	used	to	
          describe	the	success	or	failure	rates	of	various	treatments	and	how	your	
          cancer	is	responding	to	therapy.	In	the	back	of	this	booklet,	you	will	find	a	
          Glossary	chapter	for	additional	reference.




                                     C H A P T E R 3 / M A k i n g T R E AT M E n T d E C i s i o n s   19
LEARNiNG THE LANGUAGE


Terms for the different types or                        Terms for the different types of                 “If I learned one thing, it’s that when
approaches to treatment:                                responses to treatment:                           dealing with any chronic disease (which
•	 First-line therapy: Initial	cancer	                  •	 	 omplete response, apparently
                                                           C                                              is how we viewed cancer), you have
     treatment.	Second-line	therapy	may	                   cancer-free, or No Evidence of Disease         to be your own best advocate. Doctors
     follow	if	the	first	line	is	not	successful,	and	      (NED): On	the	x-ray	or	imaging	scan,	the	      aren’t perfect, even the experts. There
     so	on.                                                tumor	appears	to	be	completely	gone	as	a	      were several times that we brought a
                                                           result	of	treatment.	
•	 Neoadjuvant therapy:	Treatment	given	                                                                  second opinion to the table, and Dan’s
     before	the	primary	treatment.		                    •	 Partial response: The	tumor	has	shrunk	        doctor accepted it and worked with us.
                                                           in	size	by	at	least	30%.	                      It can be very scary reading all of the
   A
•	 	 djuvant therapy: Treatment	given	after	
     the	primary	treatment	to	increase	the	                S
                                                        •	 	 table disease: The	tumor	did	not	grow	       medical literature or medication labels,
     chances	of	a	cure.		                                  or	shrink	much.	                               but in the end, we always felt it was
                                                                                                          better to be armed with information
   M
•	 	 ulti-modality or combined modality                    P
                                                        •	 	 rogressive disease: 	The	tumor	is	
     therapy: Treatment	using	a	combination	               growing	in	spite	of	the	treatment	you	         and come with an opinion versus just
     of	chemotherapy,	surgery,	radiation	                  received.	When	this	happens,	that	specific	    sitting back and letting someone else
     therapy,	and/or	targeted	therapy.	                    therapy	is	usually	stopped	or	modified	in	     make all the decisions. Being proactive
                                                           some	way.	                                     with research and questioning allowed
•	 Palliative therapy: Treatment	that	is	
     given	to	relieve	symptoms,	provide	better	                                                           us to be more involved and helped
     quality	of	life,	and	perhaps	extend	life	                                                            remove some of the feelings of being
     when	cure	is	not	probable.	                                                                          totally out of control.”

                                                                                                                                     — Meg, Caregiver




20      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
L E A R N A B O U T P O T E N T i A L S i D E E F F E C T S B E F O R E Y O U M A k E T R E AT M E N T D E C i S i O N S


Although	many	treatment	options	have	               What	to	consider	about	your	treatment:	               After	you	have	gathered	your	facts,	then	you	
similar	potential	outcomes,	their	side	effects	                                                           can	consider	how	these	side	effects	may	
                                                    •	 What	is	your	goal	for	therapy?	
can	vary	widely.	It	is	important	for	you,	an	                                                             impact	your	life	and	how	to	prepare	for	and	
active	participant	in	your	cancer	care,	to	            W
                                                    •	 	 hat	does	your	doctor	believe	your	goal	          manage	them.	Remember,	not	everyone	
become	informed	about	side	effects	before	             for	therapy	should	be?	                            reacts	the	same	way	to	treatments,	and	it	is	
you	select	your	treatment	program.	This	is	                                                               important	to	not	assume	you	will	feel	the	
                                                       W
                                                    •	 	 hat	are	the	anticipated	benefits	of	each	
one	of	the	most	important	conversations	                                                                  same	as	someone	else	who	has	undergone	
                                                       treatment	option?	
you	will	have	with	your	doctor.	Do	not	                                                                   cancer	treatment.	There	are	tools,	resources	
minimize	the	importance	of	understanding	              W
                                                    •	 	 hat	side	effects	and	lifestyle	changes	are	      and	medications	to	assist	you	in	coping	with	
side	effects—your	quality	of	life	and	ability	to	      likely	with	each	treatment	recommended?	           various	side	effects.	For	more	information	
tolerate	your	treatment	are	important	factors	      •	 	 ow	likely	is	it	that	you	will	have	those	
                                                       H                                                  about	side	effects,	see	Chapter	6.	
to	understand.                                         side	effects?	

                                                       H
                                                    •	 	 ow	mild	or	severe	could	they	be,	and	
                                                       how	long	could	they	last?	

                                                       H
                                                    •	 	 ow	will	the	potential	side	effects	be	
                                                       prevented	or	managed	so	they	do	not	
                                                       interrupt	your	treatment	schedule	or	
                                                       reduce	your	quality	of	life?	




                                                                                       C H A P T E R 3 / M A k i n g T R E AT M E n T d E C i s i o n s   21
P R E PA R i N G F O R T R E AT M E N T


Smoking.	If	you	smoke,	you	should	consider	           Physical activity. Physical	activity	is	
quitting.		Your	body	may	respond	more	                also	important	in	optimizing	your	cancer	
effectively	to	treatment	if	you	do.	It	is	also	       treatment.	If	you	are	already	an	active	person,	
helpful	if	you	can	avoid	secondhand	smoke.	           maintain	your	activities	as	much	as	possible	
Ask	your	doctor	or	nurse	about	smoking	               even	if	you	need	to	modify	your	routine.	Be	
cessation	programs	to	help	you	or	members	            sure	to	discuss	your	exercise	program	with	
of	your	family	quit	smoking.	                         your	health	care	providers.	


Nutrition.	Nutrition	can	make	a	difference	           Be	sure	to	tell	your	doctor	about	any	
in	how	well	you	recover	from	the	effects	             symptoms	you	already	have,	such	as	                “I got all of my tests, reports, and biopsy
of	treatment.	Consider	meeting	with	a	                shortness	of	breath	and	fatigue,	as	well	as	
                                                                                                          results, and kept copies so that I could
nutritionist	or	dietitian	before	you	start	any	       any	symptoms	that	may	result	from	your	
                                                                                                          read everything and go back over it. I
treatment—surgery,	radiation	therapy,	or	             treatment	regimen.	Some	disease	symptoms	
chemotherapy—to	help	ensure	that	you	are	             can	be	managed	before	you	even	begin	
                                                                                                          think that’s very important. No one can
getting	the	nutrients	you	need	before,	during,	       therapy	to	help	you	tolerate	treatment	             remember it all.”
and	after	treatment.	Be	sure	to	discuss	any	          better.	It	is	important	to	know	that	fatigue,	
                                                                                                                                          — Cynthia
nutritional	supplements	you	are	taking	               pain,	and	nausea	can	be	managed,	and	it	
with	your	doctor	to	avoid	any	potential	              is	critical	to	let	your	health	care	team	know	
interactions	during	treatment.                        how	symptoms	are	affecting	you	as	soon	as	
                                                      possible.




22    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                        T R E AT M E N T D E C i S i O N - M A k i N G W O R k S H E E T

                                                 This	tool	is	designed	to	help	you	discuss	treatment	options	with	your	doctor.		
                                                 You	are	encouraged	to	tear	this	page	out	and	take	it	with	you	to	appointments		
                                                               and	use	it	as	a	guide	to	help	you	with	discussions.


            PART ONE                                                                          5. What side effects might I expect and how can I prepare for
                                                                                                  them? (By preparing for common side effects before starting
            Medical Background Questions:
                                                                                                  treatment, you can improve your quality of life and stay on course

            1. What type of lung cancer do I have? (The type of cancer will                       throughout your treatment schedule)

               determine the types of treatment you will receive)




            2. What is the stage of my lung cancer? (The stage of cancer will
               also determine the types of treatment available)




            3. Does my current health status affect my treatment options?
               (age, other medical conditions)




            4. What is the goal of my treatment?
TEAR HERE




                                                                                                  C H A P T E R 3 / M A k i n g T R E AT M E n T d E C i s i o n s   23
                                                     T R E AT M E N T D E C i S i O N - M A k i N G W O R k S H E E T



PART TWO                                                                               6. Pre- or post-surgery radiation

Treatment Options

1. Potential Side Effects                                                              7. Radiation
     (e.g., hospitalization, hair loss, fatigue, neuropathy, etc.)




                                                                                       8. Chemotherapy
2. Quality of Life/Treatment Convenience
     (e.g., required clinic visits to receive treatments, monitoring
     blood counts, restricted activity, etc.)


                                                                                       9. Targeted therapy




3. Effectiveness
     (e.g., what are the chances that this treatment will work for me?)                10. Investigational therapy in clinical trials




                                                                                       11. Combination treatments (from above)


4. Surgery (can the tumor be removed?)



                                                                                       12. Best supportive care
5. Pre- or post-surgery chemotherapy




                                                                                                                                        TEAR HERE
24      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
U N D E R S TA N D i N G T R E AT M E N T F O R L U N G C A N C E R


Treatment	for	lung	cancer	depends	on	the	        For	more	information	about	treatments	              Surgery
type	and	stage	of	the	cancer,	the	extent	        recommended	for	specific	stages	of	NSCLC	
                                                                                                     Surgical	removal	of	the	tumor	is	a	common	
of	symptoms,	and	the	person’s	general	           or	SCLC,	see	Chapters	4	or	5.	
                                                                                                     choice	when	the	cancer	has	not	spread	to	
health,	age,	and	preferences.	The	treatment	
                                                                                                     other	tissues	in	the	chest	or	beyond.	The	
you	receive	may	involve	a	combination	
                                                                                                     following	surgical	procedures	are	used	to	
of	therapies	that	change	over	time.	These	
                                                                                                     treat	lung	cancer:	
changes	can	be	in	response	to	the	stage	of	
cancer,	your	personal	circumstances,	and	the	                                                           W
                                                                                                     •	 	 edge or segmental resection —
                                                 S TA N D A R D T H E R A P i E S
side	effects	you	feel	are	most	acceptable	to	                                                            removal	of	a	small	part	of	the	lung	
your	lifestyle.                                  This	section	provides	an	overview	of	the	
                                                                                                        L
                                                                                                     •	 	 obectomy — removal	of	an	entire	
                                                 general	types	of	therapy	used	to	treat	lung	
                                                                                                         section	(lobe)	of	the	lung	
Your	treatment	team	will	review	your	options,	   cancer.	Standard	treatment	for	NSCLC	
and	may	take	a	multidisciplinary	approach.	      usually	involves	surgery,	radiation	therapy,	       •	 Bilobectomy	—	removal	of	two	lobes	
A	multidisciplinary	team	is	a	group	of	health	   chemotherapy,	or	a	combination	of	these	                of	the	same	lung	
professionals	who	specialize	in	different	       approaches.	In	some	cases,	it	also	involves	        •	 Pneumonectomy	—	removal	of	the	
aspects	of	cancer	care.	Members	of	a	team	       newer	targeted	therapies.	For	SCLC,	it	                 entire	lung	
may	include	an	oncologist,	radiologist,	         involves	chemotherapy	and	frequently	
pathologist,	surgeon,	pulmonologist,	            radiation	therapy.	(For	more	specific		             The	types	of	surgery	used	to	perform	these	
radiation	oncologist,	pulmonary	                 information:	see	Chapter	4	for	NSCLC,	and	          procedures	are	thoracotomy	and	VATS	
rehabilitation	specialist,	oncology	nurse,		     Chapter	5	for	SCLC.)	                               (Video-Assisted	Thoracic	Surgery).		
and	oncology	social	worker.	




                                                                                  C H A P T E R 3 / M A k i n g T R E AT M E n T d E C i s i o n s   25
Thoracotomy                                             Surgery	may	be	the	first	type	of	treatment	       Surgery	is	not	recommended	when	the	
   A
•	 	 n	incision	is	made	across	the	side	of	the	         used,	or	it	may	be	used	after	chemotherapy,	      person	has	other	health-related	problems	
     chest	and	the	ribs	are	spread	apart	so	that	       radiation,	or	both	have	been	given	to	shrink	     that	would	make	surgery	risky	(e.g.,	
     the	surgeon	can	gain	access	to	the	lung            the	tumor.	                                       serious	heart	or	vascular	problems,	severe	
                                                                                                          emphysema,	diabetes,	and	certain	other	
                                                        In	general,	surgery	is	not	used	as	first-line	
                                                                                                          chronic	conditions).	To	find	out	whether	
                                                        treatment	if	the	lung	cancer	has:	
VATS	                                                                                                     your	lungs	are	healthy	enough	for	surgery,	
   U
•	 	 ses	a	tiny	video	camera	to	guide	the	                 S
                                                        •	 	 pread	from	the	lung	into	other	parts	of	     the	doctor	may	give	you	several	tests	(e.g.,	
     surgeon	                                              the	chest	(e.g.,	the	heart	or	the	pleural	     pulmonary	function	tests).	
                                                           fluid,	which	is	fluid	between	the	lung	and	
   M
•	 	 akes	it	possible	to	remove	a	section	of	a	                                                           A	pulmonary	rehabilitation	program	may	
                                                           chest	wall)	
     lung	or	full	lung	through	a	small	incision	                                                          be	recommended	both	before	and	after	
                                                           S
                                                        •	 	 pread	to	lymph	nodes	in	the	neck,	           surgery,	especially	for	people	who	do	not	
   M
•	 	 ay	reduce	complications,	shorten	
                                                           mediastinum	(area	located	in	the	center	       have	a	regular	exercise	program.	Sometimes	
     hospital	stays	and	recovery	time	by	
                                                           of	the	chest,	but	outside	the	lungs)	or	       inhalers,	like	those	used	to	treat	asthma,	
     avoiding	large	incisions	
                                                           to	other	organs	(e.g.,	the	liver,	adrenal	     can	also	help	improve	breathing	function	to	
There	are	pros	and	cons	to	both	types	of	                  glands,	or	brain)	                             prepare	people	for	surgery.	
surgery	and	you	should	discuss	the	options	
                                                           D
                                                        •	 	 eveloped	in	a	part	of	the	lung	that	can’t	
with	your	doctor	to	determine	which	is	best	
                                                           be	removed	
for	you.	
                                                           B
                                                        •	 	 een	diagnosed	as	SCLC	




26      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                                                                         NEWER THERAPiES


Chemotherapy                                       Radiation                                             Targeted Therapies

Chemotherapy	uses	drugs	to	destroy	or	             Radiation	therapy,	also	called	radiotherapy,	         Cancer	treatments	are	improving	constantly.	
damage	cancer	cells	so	they	cannot	divide	         is	another	common	treatment	option	for	               One	of	the	most	exciting	approaches	to	
and	multiply.	It	can	be	used	to	shrink	tumors,	    some	types	of	lung	cancer.	With	radiation	            cancer	today	is	the	expanding	area	of	
slow	cancer’s	growth,	keep	cancer	from	            therapy,	high-energy	x-rays	are	used	to	              targeted	therapies.	Unlike	chemotherapy,	
spreading,	relieve	disease-related	symptoms,	      shrink	tumors,	relieve	pain	and	pressure,	            these	drugs	target	specific	cellular	pathways	
or	prolong	survival.	Because	chemotherapy	         decrease	symptoms,	and	improve	quality	of	            that	enable	cancer	cells	to	grow.	
attacks	all	rapidly	dividing	cells,	it	not	only	   life.	Radiation	can	be	effective	when	used	
damages	cancer	cells	but	also	injures	some	        alone	or	in	combination	with	surgery	or	              Targeted	therapies	include	agents	that:	
normal	cells.	This	is	what	leads	to	some	          chemotherapy.	Cancer	specialists	called	
                                                                                                            i
                                                                                                         •	 	 nterrupt	the	cell	process	that	leads	to	an	
of	the	more	commonly	experienced	side	             radiation	oncologists	provide	this	specialized	
                                                                                                             abnormal	growth	of	cells
effects.	(See	Chapter	6	for	information	about	     treatment.	
managing	symptoms	and	side	effects.)	                                                                       c
                                                                                                         •	 	 ut	off	the	flow	of	blood	to	the	tumor	with	
                                                   Radiation	treatments	are	given	to	a	specific	             the	goal	of	starving	it
Chemotherapy	is	given	as	a	single	drug	or	         area	of	the	body	called	a	radiation	field	
                                                                                                            t
                                                                                                         •	 	 arget	defects	in	the	cancer	cells	
in	a	combination	of	drugs;	combination	            during	a	series	of	outpatient	hospital	visits.	
chemotherapy	may	significantly	increase	           The	amount	of	radiation	used	to	treat	lung	              m
                                                                                                         •	 	 ake	the	cancer	cells	more	receptive	to	
the	amount	of	cancer	cells	that	are	               cancer	varies,	based	on	the	size	and	location	            the	body’s	immune	system
destroyed.	Most	chemotherapy	drugs	are	            of	the	tumor	and	the	sensitivity	of	the	normal	          b
                                                                                                         •	 	 lock	the	signals	that	cancer	cells	receive	
given	intravenously	(through	a	vein).	Some	        tissue	that	surrounds	it.	Side	effects	of	                which	cause	them	to	grow	
chemotherapy	drugs	can	also	be	given	orally,	      radiation	depend	on	where	the	radiation	field	
as	a	pill.	Because	the	drugs	continue	to	work	     is	located.	                                             c
                                                                                                         •	 	 arry	other	drugs	or	substances	directly	

for	days	or	weeks	after	they	are	taken,	a	                                                                   to	a	tumor		

period	of	rest	and	recovery	follows	each	dose.	                                                             p
                                                                                                         •	 	 revent	cell	growth



                                                                                      C H A P T E R 3 / M A k i n g T R E AT M E n T d E C i s i o n s   27
•	 	 nhibit	the	invasive	nature	of	tumor	cells	
   i                                                    •	 	 arceva®	has	been	approved	by	the	FDA	
                                                           T                                                Monoclonal antibodies. Substances	
     to	control	the	spread	of	cancerous	cells	              for	the	treatment	of	advanced	non-small	        produced	in	a	laboratory	and	tailored	to	
     and	metastases	                                        cell	lung	cancer	as	a	second-line	and	          attach	themselves	to	a	specific	protein	
                                                            third-line	therapy	(after	initial	treatment).   (antigen),	attacking	and	destroying	only	
   c
•	 	 ause	spontaneous	cell	death	(apoptosis)	
                                                                                                            tumor	cells.	
     of	cancer	cells	                                   	
                                                                                                               A
                                                                                                            •	 	 vastin™	is	also	a	monoclonal	antibody.		
•	 	 lock	the	growth	of	new	blood	vessels	and	
   b                                                    Anti-angiogenesis therapy.	Cancerous	
                                                                                                               Others	being	investigated	in	patients	with	
     interfere	with	growth	and	metastases	from	         tumors	have	the	ability	to	create	new	
                                                                                                               NSCLC	are	Vectibix	(panitumumab)	and	
     solid	tumors	(angiogenesis	inhibitors)             blood	vessels	through	a	process	called	
                                                                                                               Erbitux	(cetuximab).	
                                                        angiogenesis.	These	blood	vessels	help	
                                                        cancer	cells	grow	and	spread.	Anti-
Some	of	the	more	common	targeted	therapy	               angiogenesis	therapy	is	a	new	approach	to	          Other Emerging Treatments
types	are	defined	below:	                               cancer	treatment,	with	the	goal	of	preventing	      Ablation therapies.	A	non-surgical	tissue	
                                                        the	growth	of	new	blood	vessels	to	tumors.	         destruction	approach	used	for	lung	cancer	
Epidermal growth factor receptor (EGFR)
                                                        Various	clinical	trials	are	evaluating	different	   treatment	in	certain	circumstances.	The	
inhibitors. EGFRs	are	naturally	occurring	
                                                        anti-angiogenesis	drugs	to	assess	their	            following	ablation	therapies	are	available:	
proteins	on	the	surface	of	cells	that	appear	
                                                        impact	on	the	disease.	
to	aid	in	the	growth	of	cancer	cells	and	cause	
                                                                                                               R
                                                                                                            •	 	 adiofrequency	ablation	uses	thermal	
lung	tumors	to	grow.	A	targeted	therapy	                   A
                                                        •	 	 vastin™	(bevacizumab)	is	an	angiogenesis	         energy	to	destroy	the	cancer	cells
designed	to	block	EGF	receptors	is	Tarceva®	                inhibitor,	approved	by	the	FDA	(in	
(erlotinib).	This	drug	seems	to	work	best	in	               combination	with	carboplatin	and	                  C
                                                                                                            •	 	 ryotherapy	uses	an	extremely	cold	
people	who	have	never	smoked	or	who	have	                   paclitaxel)	for	the	treatment	of	advanced	         energy	source	to	destroy	cancer	cells		
certain	genetic	characteristics.	Researchers	               metastatic	NSCLC	in	patients	who	have	             and	is	an	option	to	remove	symptoms		
are	studying	ways	to	identify	the	people	who	               not	received	prior	chemotherapy.	                  of	airway	obstruction
will	benefit	most	from	this	treatment.	



28      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Photodynamic therapy (PDT).	A	                      vaccine Therapy                                      •	   M
                                                                                                              	 AGE	A3	is	a	vaccine	that	is	being	
procedure	in	which	a	special	chemical	is	                                                                     developed	for	prevention	of	recurrence	
                                                    Most	people	are	familiar	with	vaccines	that	
injected	into	the	blood	stream.	The	chemical	                                                                 after	early	stage	NSCLC.	The	patient’s	
                                                    are	used	to	prevent	common	illnesses,	such	
is	absorbed	by	all	cells	but	remains	in	cancer	                                                               tumor	cells	are	tested	for	a	tumor-
                                                    as	the	flu,	measles,	and	polio.	The	latest	in	
cells	longer.	A	laser	aimed	at	the	cancer	                                                                    specific	antigen	using	tissue	obtained	
                                                    new	approaches	to	cancer	treatment	involves	
activates	the	chemical	to	kill	the	cancer	cells.	                                                             during	surgery.	If	the	cells	test	positive	
                                                    the	use	of	vaccines	to	treat	lung	cancer	or	
PDT	is	approved	for	the	relief	of	symptoms	                                                                   for	this	specific	antigen,	the	patient	is	
                                                    decrease	risk	of	recurrence.	Vaccines	can	
such	as	breathing	problems	in	non-small	                                                                      more	likely	to	respond	to	the	vaccine	
                                                    help	the	immune	system	recognize	a	tumor	
cell	lung	cancer	and	can	also	be	used	to	treat	                                                               and	generate	the	immune	response	
                                                    as	foreign	and	stimulate	the	body’s	normal	
small	tumors.	                                                                                                that	would	recognize	cancer	cells	in	the	
                                                    defense	mechanisms	to	destroy	tumor	cells.	
                                                                                                              future.	
                                                    Vaccines	have	many	potential	advantages,	
                                                    such	as	greater	precision	in	targeting	cancer	
                                                                                                         •	   L
                                                                                                              	 ucanix	and	Stimuvax	are	vaccines	being	
                                                    cells	with	fewer	toxic	side	effects.	Tumor	cells	
                                                                                                              developed	for	treatment	of	late-stage	
                                                    (either	from	the	individual	or	from	other	
                                                                                                              NSCLC.	Living	cells	are	used	from	the	
                                                    sources)	are	used	to	develop	a	vaccine,	and	
                                                                                                              major	subtypes	of	non-small	cell	lung	
                                                    then	injected	into	the	person.	The	goal	of	the	
                                                                                                              cancer	to	develop	the	vaccines.	The	goal	
                                                    vaccine	is	to	stimulate	the	immune	system	to	
                                                                                                              is	for	these	vaccines	to	cause	the	immune	
                                                    recognize	and	attack	the	cancer	cells.		
                                                                                                              system	to	recognize	and	attack	the	
                                                                                                              proteins	from	these	cancer	cells,	which	
                                                                                                              will	also	teach	them	to	attack	the	cancer	
                                                                                                              cells	within	the	body.		




                                                                                      C H A P T E R 3 / M A k i n g T R E AT M E n T d E C i s i o n s      29
Radiation Techniques                                  Stereotactic Radiosurgery (SRS or STRS).        Evaluating the Effects of Treatment
                                                      There	are	three	kinds	of	SRS,	and	each	uses	
External beam radiation (external beam).                                                              There	are	a	number	of	ways	to	determine	
                                                      a	different	kind	of	machine	that	operates	in	
Use	of	carefully	aimed	doses	of	radiation	at	                                                         whether	your	treatment	is	working.	For	
                                                      a	different	way,	and	with	a	different	source	
specific	sections	of	the	lungs	or	surrounding	                                                        example,	standard	diagnostic	procedures	
                                                      of	radiation.	SRS	is	a	one-day	session	with	
areas	(such	as	the	neck	or	center	of	the	                                                             such	as	x-rays	and	CT	scans	can	determine	
                                                      a	single	high	dose	of	radiation,	but	some	
chest).	                                                                                              whether	a	tumor	has	disappeared,	shrunk	in	
                                                      machines	can	also	be	used	for	“fractionated”	
                                                                                                      size,	is	unchanged,	or	has	grown.	The	doctor	
                                                      radiation,	that	which	is	done	over	time.	
Brachytherapy (internal or implant                                                                    may	request	these	additional	tests	after	
radiation therapy).	Radioactive	material	                P
                                                      •	 	 article	beam	(proton)—only	exist	in	a	     treatment	has	begun.	
sealed	in	needles,	seeds,	wires,	or	catheters	is	        handful	of	centers	in	the	U.S.	
placed	directly	into	or	near	a	tumor.	                                                                Also,	most	doctors	assess	performance	
                                                         C
                                                      •	 	 obalt	60	based	(photon)—the	most	well-	
                                                                                                      status—a	measure	of	your	ability	to	do	
                                                         known	machine	is	Gamma	Knife®,	which	
Intensity Modulated Radiation Therapy                                                                 everyday	activities—as	an	indicator	of	your	
                                                         is	designed	exclusively	for	brain	tumors.	
(IMRT).	A	type	of	conformal	radiation,	                                                               overall	health	and	physical	functioning.	
                                                         Used	for	brain	metastases	from	lung	
which	means	the	beams	of	radiation	are	                                                               If	your	pain	or	discomfort	is	lessened,	
                                                         cancer.	
shaped	to	closely	match	the	shape	of	                                                                 breathing	is	easier,	and	cough	diminishes,	
the	tumor.	It	spares	more	normal	tissue	                 L
                                                      •	 	 inear	accelerator	based	(linac)—the	       your	performance	status	may	be	improved	
surrounding	the	tumor	than	general	                      most	well-known	machines	are	Novalis	        and	it	can	be	assumed	that	treatment	is	
radiation	and	allows	more	radiation	to	                  Tx®	and	CyberKnife®.		                       helping.	
be	delivered	directly	to	the	tumor,	as	the	
intensity	of	the	radiation	can	be	changed	
throughout	treatment.	IMRT	is	only	available	
with	linear	accelerator	based	machines;	the	
most	well-known	is	Tomotherapy®.	



30    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                   PA L L i AT i v E C A R E


Considerations After Treatment is                  People	are	living	longer	and	fuller	lives	with	      Whether	the	goal	of	your	current	treatment	is	
Completed                                          lung	cancer	than	ever	before.		With	a	variety	       curative,	or	palliative,	there	is	hope.	What	you	
                                                   of	treatments	available,	and	new	ones	on	the	        hope	for	may	change,	just	as	the	goal	of	your	
Treatment	guidelines	suggest	that	people	
                                                   horizon,	living	with	lung	cancer	is	a	reality	for	   current	treatment	has,	but	there	are	options	
who	have	been	treated	for	lung	cancer	should	
                                                   many	people.	                                        to	regain	control	and	embrace	meaning	in	
see	their	oncologist:	
                                                                                                        your	life.			
•	 	 very	three	months	for	the	first	two	years	
   E                                               According	to	the	Center	to	Advance	Palliative	
                                                   Care,	palliative	care	is	“the	medical	specialty	
   E
•	 	 very	six	months	for	two	more	years	
                                                   focused	on	the	relief	of	pain,	stress,	and	other	    CLiNiCAL TRiALS
   A
•	 	 nnually	after	four	years	                     debilitating	symptoms	of	serious	disease.”	
                                                                                                        With	an	overall	five-year	survival	rate	that	
                                                   Palliative	care	may	be	provided	to	treat	
                                                                                                        has	not	improved	in	30	years,	it	is	clear	that	
                                                   symptoms	of	the	lung	cancer	or	to	relieve	
Many	people	continue	to	see	their	                                                                      current	treatment	options	for	lung	cancer	
                                                   side	effects	from	treatment.	
oncologists	or	primary	care	doctor	every	                                                               still	have	much	room	for	improvement.	

three	months	after	finishing	lung	cancer	                                                               Researchers	are	constantly	trying	to	improve	
                                                   Palliative	care	is	often	provided	during	
treatment	so	that	any	recurrence	can	be	                                                                available	treatments	and	are	eager	to	develop	
                                                   active	treatment	to	make	the	patient	more	
detected	as	early	as	possible.	At	these	visits,	                                                        new	(also	called	“novel”)	therapies.	Cancer	
                                                   comfortable.	However,	in	some	cases,	
your	doctor	will	check	your	general	health	                                                             clinical	trials	are	carefully	designed	and	
                                                   palliative	care	is	given	after	curative	attempts	
status,	may	schedule	a	CT	or	other	scan,	and	                                                           strictly	monitored	research	studies	that	
                                                   have	failed.	In	those	situations,	palliative	care	
determine	the	need	for	blood	work	and	other	                                                            determine	whether	a	new	treatment	option	
                                                   is	provided	to	prolong	survival	and	to	reduce	
tests,	depending	on	your	health	history.	                                                               is	safe,	effective,	and	better	than	standard	
                                                   or	eliminate	symptoms.	In	either	situation,	
                                                                                                        treatments	currently	in	use.	The	current	
                                                   improving	the	quality	of	life	of	the	patient	is	
                                                                                                        “standard	of	care”	treatment(s)	for	lung	
                                                   always	a	primary	goal.
                                                                                                        cancer	were	originally	approved	as	safe	and	
                                                                                                        effective	in	clinical	trials.	



                                                                                     C H A P T E R 3 / M A k i n g T R E AT M E n T d E C i s i o n s   31
During	the	course	of	your	diagnosis	and	               decide	whether	the	opportunity	is	right	for	            I
                                                                                                            •	 	 f	the	treatment	has	any	negative	effects,	
treatment,	you	and	your	doctor	may	                    you.	For	example:	                                      what	will	be	done	for	me,	and	who	will	
consider	exploring	your	clinical	trial	options.	                                                               pay	for	it?	
                                                          W
                                                       •	 	 hy	could	this	treatment	be	better	for	me	
Participating	in	a	clinical	trial	does	not	mean	
                                                          than	other	options?	                                 H
                                                                                                            •	 	 ow	long	will	the	study	last?	
that	you	will	be	“experimented	on”	or	treated	
as	a	human	guinea	pig.	Clinical	trials	only	              H
                                                       •	 	 ow	is	patient	safety	monitored?	                   D
                                                                                                            •	 	 oes	my	medical	insurance	or	the	study	
explore	treatment	options	that	are	thought	                                                                    sponsor	cover	some	or	all	of	the	cost	of	
                                                          W
                                                       •	 	 ho	sponsors	the	study?	
to	be	as	good	as	or	better	than	the	current	                                                                   participation	in	the	study?	If	not,	how	
standard	therapies.	They	are	rigorously	                  W
                                                       •	 	 ho	reviews	the	study’s	findings,	and	              much	will	I	have	to	pay?	
evaluated	by	panels	of	experts,	including	                how	often?	
                                                                                                            For	more	information	about	lung	cancer	
patient	advocates,	to	ensure	that	patients	               A
                                                       •	 	 re	additional	lab	or	other	tests	needed,	       clinical	trials,	see	the	Chapter	9	Resources.	
enrolled	in	trials	receive	the	very	best	care	            and	if	so,	who	pays	for	them?	                    For	more	information	about	new	treatments	
possible	and	NEVER	less	than	the	best	
                                                                                                            in	general,	see	Frankly	Speaking	About	New	
available	standard	of	care.	                              I
                                                       •	 	 s	the	study	done	on	an	outpatient	or	
                                                                                                            Discoveries	in	Cancer	information	online:	
                                                          inpatient	basis?	
                                                                                                            www.cancersupportcommunity.org.
  Through a clinical trial, you may be one of             D
                                                       •	 	 o	I	have	to	travel	to	the	facility	where	the	
  the first to receive what may become the                study	is	done,	or	is	treatment	available	                           “I chose to participate in
  new “standard of care.” Clinical trial                  near	me?	                                                            a clinical trial because I
  participation is at the heart of the drug                                                                                    wanted to be as aggressive
  approval process and may help save lives.               W
                                                       •	 	 hat	are	the	possible	short-term	and	
                                                                                                                               as possible with my
                                                          long-term	effects	of	the	treatment?	
                                                                                                                               treatment. I also know
                                                          H
                                                       •	 	 ow	could	the	treatment	affect	my	               that these trials are an important part
If	you	are	eligible	for	a	clinical	trial,	ask	            daily	life?	                                      in helping us to learn more about lung
questions	until	you	understand	all	of	the	
                                                                                                            cancer and help bring us closer to a cure!”
potential	benefits	and	risks	so	that	you	can	                                                                                                  — Jerry


32     f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                                C h a p t e r F o U r / U n d e r S ta n d i n g n S C L C a n d i t S t r e at M e n t
                          “I think you should be educated as
                           much as you possibly can about
                           your diagnosis. I believe the more
                           you know, the less fear you have.
                           Then you’re not playing ‘what if ’
                           with yourself.”

                                                    — Cynthia




Understanding NSCLC and its Treatment
C h a p t e r F o U r / U n d e r S ta n d i n g n S C L C a n d i t S t r e at M e n t




                                                                                          Chapter 4 / UnderStanding n SCLC and it S treatMent ..................... 33

                                                                                          	   Staging	of	NSCLC		. ...........................................................................................................34

                                                                                          	   Treatment	of	NSCLC	by	stage	. ........................................................................................ 	36

                                                                                          	   Treatment	of	recurrent	NSCLC	. .......................................................................................38
Understanding Non-Small Cell
  Lung Cancer and its Treatment
                           The	recommendations	from	your	oncologist	and	the	treatment	decisions	
                           you	make	will	depend	on	the	stage	of	your	disease,	your	general	health,	the	
                           potential	side	effects,	and	your	wishes.	Remember,	there	is	no	one	treatment	
                           for	non-small	cell	lung	cancer.	Your	treatment	will	be	as	individual	as	you	are	
                           and	will	adapt	to	your	changing	needs	and	side	effects.	

                           The	stage	of	cancer	is	the	major	factor	in	determining	a	treatment	plan.	It	
                           is	important	to	understand	the	concept	of	“stage”	for	lung	cancer,	because	
                           it	guides	treatment	options.	The	following	review	of	treatments	by	stage	of	
                           NSCLC	provides	only	general	descriptions	of	the	usual	approaches.	There	are	
                           many	variations	of	existing	options,	and	many	new	treatments	are	emerging,	
                           providing	additional	treatment	options.	




       C H A P T E R 4 / u n d E R s TA n d i n g n o n - s M A l l C E l l l u n g C A n C E R A n d i T s T R E AT M E n T   33
S TA G i N G O F N S C L C


The TNM Staging System	is	one	of	the	
most	commonly	used	cancer	staging	                     CEnTiMETER sizing

systems,	which	standardizes	cancer	staging	
internationally.	It	takes	into	consideration	                      1 CM    THE sizE of A CHoColATE CHiP
the	size	of	the	tumor (T),	cancer	spread	to	
lymph nodes (N),	and	how	far	the	cancer	
has	spread	beyond	the	lymph	nodes,	or	
metastasis (M).	The	overall	staging	of	
NSCLC	is	based	on	the	TNM	results.                                                       THE sizE of A 50 CEnT PiECE
                                                                   3 CM

Tumor (T)
How	big	is	the	tumor?	Where	is	it	located?	
Has	it	spread	to	nearby	tissue?

Lymph Node (N)
Has	the	cancer	spread	to	the	lymph	nodes		
in	and	around	the	lungs?

Metastasis (M)                                                                            THE HEigHT of An AA bATTERy
                                                                    5 CM
Has	the	cancer	spread	to	other	parts		
of	the	body?

	




34    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                          S TA G E S O F N O N - S M A L L C E L L L U N G C A N C E R

STAGE iA                                                                      STAGE iiiA
• The cancer is less than 3 cm, has not spread to the membranes               • Between 3 cm and 7 cm and involves the main bronchus (passageway
   that surround the lungs, and does not affect the main branches                 of air to the lung) or visceral pleura (sac surrounding the lung) and
   of the bronchi.                                                                has spread to the ipsilateral (same side) lymph nodes near where
                                                                                  the trachea (windpipe) branches into the left and right bronchi or near
STAGE iB                                                                          the mediastinum (area between the lungs)
• The tumor is larger than 3 cm but less than 5 cm                            • or the tumor is larger than 7 cm or touches an area near the lung or has
•   or it involves the main bronchus (passageway of air to the lung) or           grown into the bronchus or caused a lung to collapse or pneumonia
    the visceral pleura (sac surrounding the lung). However, Stage IB             in an entire lung or a separate tumor in the same lobe and has spread
    tumors do not involve lymph nodes, do not extend to the center                to ipsilateral lymph nodes which may be near the windpipe (trachea)
    of the chest outside of the lung, and do not involve more than one            and the mediastinum
    area of the lung.                                                         • or the tumor is of any size and has spread to the mediastinum, heart,
                                                                                  trachea, esophagus, backbone or the place where the trachea branches
STAGE iiA                                                                     • or there is a separate tumor in a different lobe of the same lung
• The tumor is no larger than 5 cm and has spread to the lymph nodes              and cancer may have spread to the ipsilateral lymph nodes near
   and bronchus (passageway of air to the lung) entry point within the            the bronchus entry.
   cancerous lung
•   or the tumor is larger than 5 cm and less than or equal to 7 cm, with     STAGE iiiB
    no involvement of the lymph nodes or center of the chest outside the      • The tumor may be of any size and has spread to the mediastinum
    lung and does not involve more than one area of the lung.                    (area between the lungs), heart, trachea, esophagus, backbone or
                                                                                 the branch of the trachea (windpipe), or there are separate tumors
STAGE iiB                                                                        in a different lobe of the same lung,
• The cancer is greater than 5 cm and less than 7 cm but has spread to        • or the cancer has spread to lymph nodes on the contralateral
   ipsilateral (same side) lymph nodes or to the area where the bronchus          (opposite side) lung or to lymph nodes in the neck.
   enters the same lung
• or the cancer is larger than 7 cm                                           STAGE iv
• or the tumor touches an area near the lung, such as the chest               Stage iv is the most advanced form of cancer
    wall or diaphragm (muscle below the lungs used for breathing), or         • Cancer has spread beyond a single lung. This spread may be to
    pericardium (sac surrounding the heart)                                       lobes in the opposite lung, or area surrounding the lung
• or it has grown into the main bronchus                                      • or the cancer has spread to distant parts of the body such as the
• or the cancer has caused one lung to collapse or caused pneumonia               brain, liver, adrenal glands, or bone
    in an entire lung                                                         • or there is a separate tumor in the same lobe



                                C H A P T E R 4 / u n d E R s TA n d i n g n o n - s M A l l C E l l l u n g C A n C E R A n d i T s T R E AT M E n T       35
T R E AT M E N T O F N S C L C B Y S TA G E


Stages iA and iB                                      Chemotherapy.	The	need	for	post-surgery	           Stages iiA and iiB
                                                      (called	adjuvant)	therapy	is	an	important	
When	cancer	is	diagnosed	in	early	stages,	                                                               If	you	are	diagnosed	with	stage	IIA	or	IIB	
                                                      topic	to	discuss	with	your	oncologists.	
treatment	is	more	likely	to	be	successful.	                                                              NSCLC,	it	is	recommended	that	you	meet	
                                                      Select	patients	with	stage	IB	NSCLC	may	
Some	combination	of	the	following	                                                                       with	a	surgeon,	a	medical	oncologist,	and	a		
                                                      benefit	from	chemotherapy	after	surgery.	
treatments	may	be	used:	                                                                                 radiation	oncologist	to	discuss	possible	
                                                      The	chemotherapy	will	usually	consist	
                                                                                                         treatment	options,	including	clinical	trials		
                                                      of	a	platinum-based	drug	(cisplatin	or	
Surgery.	Surgery	is	the	standard	of	care	for	                                                            for	your	stage	of	disease.	
                                                      carboplatin)	and	one	of	several	other	
patients	with	stage	I	NSCLC.	(See	Chapter	
                                                      chemotherapy	agents.
3	for	information	on	types	of	surgery.)	                                                                 Surgery.	Surgery	is	the	standard	of	treatment	
During	lung	surgery,	it	is	important	for	the	                                                            for	stage	IIA	and	IIB	disease.	(See	Chapter	3	
                                                      Targeted therapies.	A	targeted	therapy	
surgeon	to	perform	a	complete	examination	                                                               for	information	on	types	of	surgery.)	
                                                      is	a	new	type	of	drug	that	targets	specific	
of	the	lymph	nodes	in	the	chest	cavity,	
                                                      cellular	pathways	that	enable	cells	to	grow.	
including	the	mediastinum	(the	area	                                                                     Chemotherapy.	Recent	studies	have	shown	
                                                      These	treatments	are	sometimes	used	in	
between	the	lungs).	This	examination	is	an	                                                              that	chemotherapy	with	a	platinum-based	
                                                      combination	with	chemotherapy	drugs.	
important	reason	to	have	the	surgery	done	                                                               drug	regimen	after	surgery	improves	survival	
by	a	qualified	thoracic	surgeon,	as	a	less	                                                              in	people	with	stage	IIA	and	IIB	lung	cancer.	
                                                      Radiation.	Sometimes	even	in	early	stages	
knowledgeable	one	may	do	an	inadequate	                                                                  Under	certain	circumstances,	treatment	
                                                      of	lung	cancer	the	patient	may	not	be	able	
assessment	of	the	lymph	nodes	in	the	                                                                    with	chemotherapy	before	surgery	may	
                                                      to	go	through	surgery	because	of	other	
mediastinum.	Ask	your	surgeon	specifically	                                                              be	beneficial.	The	goal	of	that	treatment	
                                                      health	issues.	In	this	case,	radiation	is	often	
if	he/she	plans	to	check	and/or	remove	these	                                                            (called	neo-adjuvant	treatment)	is	to	shrink	
                                                      combined	with	chemotherapy	to	treat	stage	
lymph	nodes	for	examination.	                                                                            the	tumor	to	improve	the	chances	that	the	
                                                      IA	and	IB	NSCLC.	
                                                                                                         surgical	procedure	will	be	successful	in	
                                                                                                         removing	the	entire	tumor.	




36    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Targeted therapies.	A	targeted	therapy	              Surgery.	Surgery	without	chemotherapy	may	             Inoperable Stage IIIA NSCLC
is	a	new	type	of	drug	that	targets	specific	         be	possible	in	some	cases	if	the	tumor	can	be	         Stage	IIIA	NSCLC	is	considered	inoperable	
cellular	pathways	that	enable	cells	to	grow.	        easily	removed,	especially	when	the	lymph	             when	the	tumor	is	too	large,	in	a	location	
These	treatments	are	sometimes	used	in	              nodes	were	found	to	be	involved	only	at	the	           that	is	difficult	for	the	surgeon	to	reach,	
combination	with	chemotherapy	drugs.	                time	of	surgery.	                                      or	the	patient	has	other	factors	that	make	
                                                                                                            surgery	impossible.	It	may	also	be	considered	
Radiation.	Under	certain	circumstances,	             Chemotherapy. When	the	lymph	nodes	in	                 inoperable	even if the patient had surgery,
radiation	may	be	given	before	and/or	after	          the	mediastinum	(area	between	the	lungs)	              if	during	the	surgery	cancer	was	found	in	
surgery	to	improve	the	chances	of	destroying	        are	involved,	the	most	common	treatment	               certain	lymph	nodes.	
all	the	cancer	cells.	                               is	chemotherapy	with	or	without	radiation	
                                                                                                            Chemotherapy.	The	standard	of	care	for	
                                                     given	before	or	after	surgery.
                                                                                                            inoperable	Stage	IIIA	is	chemotherapy	
                                                                                                            combined	with	radiation	therapy	when	the	
                                                     Targeted therapies. A	targeted	therapy	
Stage iiiA                                                                                                  patient	is	healthy	enough	to	withstand	both	
                                                     is	a	new	type	of	drug	that	targets	specific	
Stage	IIIA	NSCLC	can	be	a	complex	stage	                                                                    therapies.	Commonly	used	chemotherapy	
                                                     cellular	pathways	that	enable	cells	to	grow.	
of	lung	cancer	to	manage.	Treatment	at	this	                                                                drugs	include	a	platinum	drug	in	
                                                     These	treatments	are	sometimes	used	in	
stage	is	determined	by	whether	the	tumor	                                                                   combination	with	one	of	several	other	drugs.	
                                                     combination	with	chemotherapy	drugs.	
is	operable	(can	be	surgically	removed)	or	                                                                 Delivery	of	chemotherapy	and	radiation	
inoperable	(cannot	be	surgically	removed)	           Radiation. Radiation	is	sometimes	used	for	            therapy	concurrently	(at	the	same	time)	
and	may	involve	several	of	the	following	            Stage	IIIA	NSCLC	either	with	chemotherapy	             appears	to	be	better	than	the	sequential	
treatments:                                          or	in	combination	with	surgery.	Radiation	             (one	after	the	other)	administration	of	

                                                     combined	with	chemotherapy	may	be	used	                chemotherapy	and	radiation	treatments.	
Operable Stage IIIA NSCLC                            instead	of	surgery	to	eliminate	the	tumor	
Depending	on	the	details	of	your	case,	              and	is	probably	the	most	common	form	of	
options	may	include	a	combination	of	the	            therapy	at	this	stage.
following:	

                                 C H A P T E R 4 / u n d E R s TA n d i n g n o n - s M A l l C E l l l u n g C A n C E R A n d i T s T R E AT M E n T     37
                                                                                                       T R E AT M E N T O F
                                                                                                       RECURRENT NSCLC


Targeted therapies. A	targeted	therapy	               Chemotherapy. Chemotherapy	improves	             Non-small	cell	lung	cancer	can	recur	(come	
is	a	new	type	of	drug	that	targets	specific	          survival	and	quality	of	life	when	compared	      back	after	initial	treatment)	in	or	near	the	
cellular	pathways	that	enable	cells	to	grow.	         to	best	supportive	care	(to	relieve	symptoms	    lungs	(local	recurrence)	or	in	another	part	of	
These	treatments	are	sometimes	used	in	               only)	in	some	people	with	inoperable	stage	      the	body	(metastatic	recurrence).	While	this	
combination	with	chemotherapy	drugs.	                 IIIB	and	stage	IV	NSCLC	who	are	healthy	         can	be	a	distressing	time	filled	with	many	
                                                      enough	to	tolerate	the	side	effects.	Current	    emotions,	it	is	important	to	remember	that	
Radiation. Radiation	is	often	used	as	part	of	        clinical	trials	have	shown	that	a	combination	   there	are	treatment	options	that	can	reduce	
the	treatment	for	this	stage	of	cancer.	              of	different	drugs	is	superior	to	giving	one	    or	slow	down	tumor	activity.	In	the	case	of	
                                                      drug	alone.	                                     metastatic	recurrence,	the	goal	of	treatment	
Sometimes lung cancer that was thought                                                                 is	generally	to	improve	or	maintain	quality	
to be inoperable due to size or location              Targeted therapies. A	targeted	therapy	          of	life	and	prolong	survival.	This	may	include	
may become operable after treatment with              is	a	new	type	of	drug	that	targets	specific	     any	of	the	treatments	used	in	other	stages	of	
chemotherapy and/or radiation.                        cellular	pathways	that	enable	cells	to	grow.	    disease.	The	challenges	that	impact	treatment	
                                                      These	treatments	are	sometimes	used	in	          decision-making	for	recurrent	NSCLC	can	
                                                      combination	with	chemotherapy	drugs,	but	        include:	
Stage iiiB and Stage iv                               in	the	case	of	stage	IIIB	and	IV	non-small	
                                                                                                       • General	health	status	—	If	a	person	is	
The	goal	of	treatment	for	patients	with	stage	        cell	lung	cancer,	they	may	be	used	alone	
                                                                                                          generally	in	good	health	with	no	other	
IIIB	or	IV	lung	cancer	is	typically	to	prolong	       following	chemotherapy	treatment.	
                                                                                                          serious	conditions,	there	are	more	
survival	and	improve	quality	of	life.	
                                                                                                          treatment	options.	
                                                      Radiation.	Radiation	is	often	used	as	part	of	
Surgery. Surgery	is	often	not	possible	for	           the	treatment	for	this	stage	of	lung	cancer.	    •					 otential	side	effects	—	Several	treatment	
                                                                                                            P
people	with	stage	IIIB,	and	is	rarely	used	for	                                                           options	may	have	similar	results	but	vary	
stage	IV.                                                                                                 widely	in	potential	side	effects	that	may	
                                                                                                          impact	quality	of	life.	




38    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                                                                               lung CAnCER TREATMEnT
•					 oals	and	wishes	of	the	patient	and	
     G                                               If	you	choose	not	to	take	chemotherapy	or	a	              And youR HEART
   family	—	It	is	important	that	the	                targeted	therapy,	supportive	care	–	treatment	            Surgery, radiation, and common
   individual’s	goals	of	treatment	be	               that	helps	relieve	symptoms	but	does	not	                 chemotherapy drugs for lung cancer
   considered	when	designing	their	                  affect	the	growth	of	the	cancer	–	may	be	                 may cause problems with heart function.
                                                                                                               Before you start treatment, tests such
   treatment	plan.	                                  recommended.	Supportive	care	may	include	
                                                                                                               as an echocardiogram and stress
                                                     pain-control	measures,	radiation,	or	laser	
These	challenges	exist	at	all	stages	of	                                                                       electrocardiogram may be done to
                                                     therapy	to	relieve	symptoms.	Whatever	you	                determine the status of your heart
diagnosis,	but	may	be	especially	present	after	
                                                     and	your	oncologist	decide,	there	is	hope.	               function. Symptoms of heart problems
having	gone	through	other	treatments	for	
                                                     Even	if	a	cure	is	not	possible,	there	is	hope	            may include:
lung	cancer.	
                                                     that	effective	treatment	can	maintain	or	                 • Chest tightness or pain
                                                     improve	your	quality	of	life	and	even	slow	or	
For	additional	information	on	specific	                                                                        • Difficulty breathing
                                                     control	the	disease	itself.	It	is	now	possible	
therapy	recommendations,	please	visit		                                                                        • Unusually slow or rapid heartbeat
                                                     to	treat	advanced	lung	cancer	as	a	chronic	
www.cancer.gov/cancertopics/types/lung		
                                                                                                               • Numbness in the left arm or shoulder
                                                     condition	in	some	patients,	keeping	the	
or	1-800-4CANCER.
                                                     disease	stable	until	new	drugs	and	treatments	            Be sure your doctor knows about any
                                                     are	discovered.	As	mentioned	many	times	                  past problems with your heart, and
                                                     in	this	booklet,	it	is	important	for	you	to	talk	         contact your doctor immediately if you

                                                     with	your	doctor	about	all	of	your	treatment	             experience any of the symptoms listed
                                                                                                               above.
                                                     options,	weighing	the	potential	side	effects	
                                                     with	the	possible	benefits.		




                                 C H A P T E R 4 / u n d E R s TA n d i n g n o n - s M A l l C E l l l u n g C A n C E R A n d i T s T R E AT M E n T   39
                                                                  “When my cancer came back, I got scared initially and said
                                                                  ‘Oh no! Not again!’ But I was more convinced to enjoy my
                                                                  life. I’ve totally changed my lifestyle. I took the stress out of
                                                                  it, picked up swimming and started taking trips.”

                                                                                                                     — Mary Ellen




40   f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                                C h a p t e r F i v e / U n d e r S ta n d i n g S C L C a n d i t S t r e at M e n t
                         “When I was diagnosed with SCLC,
                         life just became a whirlwind,
                         rushing from one doctor to the
                         next. This cancer spreads fast, even
                         though it reacts well to chemo.
                         Within a week I was diagnosed,
                         met with my oncologist, and was
                         admitted for my first chemo.”

                                                      — Lisa




Understanding SCLC and its Treatment
C h a p t e r F i v e / U n d e r S ta n d i n g S C L C a n d i t S t r e at M e n t




                                                                                        Chapter 5 / UnderStanding SCLC and it S treatMent ........................ 41

                                                                                        	   Staging	of	SCLC	...............................................................................................................42

                                                                                        	   Treatment	of	SCLC	by	stage	............................................................................................42

                                                                                        	   Treatment	of	recurrent	SCLC	..........................................................................................43
Understanding Small Cell
   Lung Cancer and its Treatment
                    Current	treatment	for	small	cell	lung	cancer	involves	a	combination	of	
                    chemotherapy	drugs	with	or	without	radiation	therapy.	Because	new	
                    therapies	for	cancer	are	always	in	development,	you	should	discuss	the	latest	
                    treatments	with	your	oncologist,	including	the	possibility	of	finding	a	clinical	
                    trial	that	might	be	a	good	fit	for	you.			

                    Treatment	is	determined	by	the	stage	of	your	disease,	your	overall	health,	the	
                    possible	side	effects	of	specific	therapies,	and	your	preferences.	Members	
                    of	your	health	care	team	have	expertise	that	can	be	helpful	as	you	weigh	
                    treatment	options.	No	matter	what	choices	you	make,	it	is	important	that	you	
                    get	the	information	you	need	to	understand	the	potential	impact	of	those	
                    decisions—for	your	health	and	for	your	future.	




        C H A P T E R 5 / u n d E R s TA n d i n g s M A l l C E l l l u n g C A n C E R A n d i T s T R E AT M E n T   41
S TA G i N G O F S C L C                                T R E AT M E N T O F S C L C B Y S TA G E


SCLC	tends	to	be	more	aggressive	than	                  Newly Diagnosed Limited-Stage SCLC                C
                                                                                                       •	 	 amptosar®	(irinotecan/CPT11)	plus	
NSCLC.	Small	cell	lung	cancer	is	generally	                                                               a	platinum	agent	(not	FDA	approved	
                                                        According	to	the	National	Cancer	Institute	
categorized	as	either	limited-stage	or	                                                                   for	SCLC	at	this	time	but	is	often	used	
                                                        (NCI),	the	current	standard	treatment	for	
extensive-stage	disease:	                                                                                 because	it	generated	promising	results	in	
                                                        patients	with	newly	diagnosed	limited-stage	
                                                                                                          clinical	trials)	
   L
•	 	 imited-stage —	tumors	typically	are	               SCLC	should	be	four	cycles	of	combination	
     on	one	side	of	the	chest	in	one	lung,	and	         chemotherapy	containing	VP16	(etoposide)	         C
                                                                                                       •	 	 ytoxan®	(cyclophosphamide)	plus	
     within	the	surrounding	area	that	can	be	           and	cisplatin	at	the	same	time	as	chest	          doxorubicin	plus	vincristine	(an	older	
     treated	by	radiation.	                             radiation.	                                       regimen	–	less	widely	used	in	the	U.S.)	

   E
•	 	 xtensive-stage —	tumors	have	spread	
     outside	one	lung	to	the	other	lung	or	to	
                                                        Newly Diagnosed Extensive-Stage                Prophylactic	cranial	irradiation	(PCI)	is	
     other	areas	of	the	body.	
                                                        SCLC                                           preventive	radiation	therapy	to	the	brain.		

                                                        Extensive-stage	SCLC	is	treated	using	the	     SCLC	often	spreads	to	the	brain	and	PCI	
Hearing	that	your	cancer	is	a	more	aggressive	
                                                        same	chemotherapy	as	in	limited-stage	SCLC	    can	help	keep	this	from	happening.	It	is	
kind	is	not	easy,	and	there	may	be	a	variety	
                                                        but	without	additional	radiation	therapy.	     recommended	for	some	people	who	are	in	
of	emotions	you	experience.	However,	
                                                                                                       remission	after	initial	chemotherapy.	
there	are	still	many	opportunities	to	remain	
                                                        Frequently	used	first-line	chemotherapy	
Patient	Active	and	find	meaningful	ways	to	
                                                        drugs	for	SCLC	include:	
experience	good	quality	of	life	and	survival.		
                                                           V
                                                        •	 	 P16	(etoposide)	plus	a	platinum	agent	
                                                           like	cisplatin	or	carboplatin	




42      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
T R E AT M E N T O F R E C U R R E N T S C L C


If	your	small	cell	lung	cancer	does	not	
respond	to	initial	therapy	it	is	considered	           TALk WiTH YOUR ONCOLOGiST
to	be	resistant.	If	it	returns	within	two	years	
                                                       If you are newly diagnosed or have
of	successful	treatment,	it	is	considered	to	          recurrent SCLC, it is important to talk with
be	recurrent.	The	goal	of	therapy	in	these	            an oncologist about potential treatment
cases	is	to	improve	quality	of	life	and	prolong	       options. For some patients with recurrent
survival.	Possible	chemotherapy	drugs	for	             disease, Phase I or Phase II clinical trials
treatment	of	resistant	or	recurrent	SCLC	              may provide the best treatment options.

include:	

   H
•	 	 ycamtin®	(topotecan)	is	the	only	FDA-
   approved	drug	for	recurrent	SCLC.	It	is	
   also	available	in	pill	form.	

•	 VP16	(etoposide)	

   F
•	 	 or	relapses	occurring	more	than	six	
   months	after	the	initial	treatment,	the	
   original	chemotherapy	can	be	repeated.




                                         C H A P T E R 5 / u n d E R s TA n d i n g s M A l l C E l l l u n g C A n C E R A n d i T s T R E AT M E n T   43
                                          “Medical research is being conducted all across the United States,
                                           bringing hope for new and more effective treatments for small
                                           cell lung cancer.”

                                                     — Maureen Rigney, LICSW, Director of Patient Services,
                                                                                      Lung Cancer Alliance




44   f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
               “I tell people straight-up ‘I’m sorry,




                                                        Chapter Six / Managing Side eFFeCtS
                I can’t remember your name!’
                I’ve learned not to be embarrassed
                about chemobrain, but just to
                admit it and ask people to help.
                And I’ve found that when you say,
                ‘This is my problem. Can you help
                me remember this?’ - that people
                are really good.”

                                       — Mary Ellen




Managing Side Effects
                                      C H A P T E R 6 / M a n a g i n g S i d e e F F e C t S ........................................................ 45
Chapter Six / Managing Side eFFeCtS




                                      	   Side	effects	. ......................................................................................................................46

                                      	   	     Fatigue	. ......................................................................................................................46

                                      	   	     Difficulty	breathing	...................................................................................................48

                                      	   	     Managing	low	blood	counts	......................................................................................48

                                      	   	     Anemia	......................................................................................................................50

                                      	   	     Bleeding	....................................................................................................................50

                                      	   	     Gastro-intestinal	system	changes	.............................................................................51

                                      	   	     Changes	in	appearance		............................................................................................55

                                      	   	     Pain	and	discomfort		.................................................................................................56

                                      	   	     Pain	from	nervous	system	changes		..........................................................................57

                                      	   	                 .
                                                Hypertension	 ............................................................................................................58

                                      	   	     Changes	in	sexual	functioning	and	fertility		.............................................................59

                                      	   The	importance	of	physical	activity		...............................................................................60

                                      	   “Chemobrain”	–	cognitive	dysfunction		..........................................................................61

                                      	   Complementary,	integrative,	or	alternative	medicine		...................................................62

                                      	   Mind-body	connection	. ...................................................................................................63
Managing Side Effects
Nearly	every	form	of	cancer	treatment	has	some	side	effects,	but	they	vary	
                                                                                      is iT CAnCER oR soMETHing ElsE?
widely	from	person	to	person.	Your	experience	will	be	unique.	You	may	
                                                                                      People who have been diagnosed with
have	many	side	effects	or	you	may	have	only	a	few	of	the	side	effects	that	are	       cancer know that life instantly changed
associated	with	your	type	of	therapy.                                                 when they heard the words: “You have
                                                                                      cancer.” Many say that they become very
                                                                                      conscious of their body; some think they
Discussing	possible	side	effects	with	your	oncologist	before	you	begin	
                                                                                      worry too much about “every ache and
treatment	helps	to	reassure	you	that	certain	symptoms	are	expected		                  pain.” More often than not, the symptoms
                                                                                      you are experiencing are temporary and
and	inform	you	about	what	to	do	if	they	occur.		If	you	have	any	concerns	
                                                                                      related to your treatment and the changes
about	how	you	are	reacting	to	either	the	disease	or	its	treatments,	it	is		           occurring in your body as it works to
always	best	to	contact	your	doctor.	                                                  control or destroy the cancer. It is common
                                                                                      to worry even long after treatment is
                                                                                      complete.
It is your responsibility to report side effects to your doctor or
nurse. Often, side effects can be successfully managed, but                           It is important that you learn to read

your doctor or nurse needs to know you’re having them.                                your body’s physical signs, keep track of
                                                                                      symptoms and side effects, and maintain
                                                                                      regular and open communication with your
                                                                                      health care team and family so that you
                                                                                      can feel as good as possible throughout
                                                                                      and beyond treatment.




                                                                              CHAPTER 6 / MAnAging sidE EffECTs                     45
MANAGiNG SiDE EFFECTS


What	your	body	is	going	through	may	be	                 The	good	news	is	that	there	are	specific	things	   Fatigue
related	to	the	symptoms	of	the	disease	or	              you	can	do	not	only	to	manage	but,	in	some	
                                                                                                           Of	all	the	side	effects	associated	with	
they	may	be	effects	from	treatment.	In	this	            circumstances,	prevent	these	challenging	
                                                                                                           treatment,	fatigue	is	the	most	common	and	
chapter,	some	of	the	more	common	side	                  side	effects.	Managing	your	side	effects	will	
                                                                                                           distressing	complaint	of	people	with	cancer.	
effects	and	symptoms	are	discussed:                     improve	the	way	you	feel	during	treatment,	
                                                                                                           Fatigue	is	a	lingering	feeling	of	tiredness	
                                                        help	you	get	through	treatment	as	quickly	as	
•		 Fatigue	and	difficulty	breathing                                                                       that	gets	in	the	way	of	daily	activities.	This	is	
                                                        possible	(side	effects	may	delay	treatment),	
                                                                                                           not	the	same	feeling	of	tiredness	caused	by	
•		 Infection,	bleeding,	and	anemia	                    and	may	make	a	difference	in	the	outcome	of	
                                                                                                           activity	or	overexertion.		Feeling	fatigued	is	
                                                        your	treatment.	
•		 Gastro-intestinal	system	changes                                                                       not	an	indication	that	your	cancer	is	worse,	
                                                                                                           but	you	should	tell	your	doctor	if	you	feel	
•		 Changes	in	appearance	
                                                                                                           fatigued.	
•		 Pain	and	discomfort	                                   Strong evidence shows that exercising
                                                           helps fight cancer- and treatment-              Fatigue	during	or	after	cancer	treatment	
   C
•	 	 hanges	in	sexual	functioning	and	effects	             related fatigue. Walking, cycling, and
                                                                                                           may	be	caused	by	a	low	red	blood	cell	
     on	fertility	                                         swimming are good examples of activities
                                                                                                           count,	sleeping	problems,	diet,	breathing	
                                                           to try. Ask your doctor about cancer
Emotional	well-being	is	also	affected	by	                                                                  difficulties,	or	emotional	distress	such	as	
                                                           rehabilitation or other specialized
cancer	and	its	treatment.	Please	see	Chapter	                                                              depression	and	anxiety	(see	Chapter	6).	
                                                           exercise programs for people with cancer
7	on	Quality	of	Life	for	more	information.                 that might be available in your area.           Generally,	fatigue	will	begin	to	decrease	
                                                                                                           within	a	few	weeks	or	months	after	treatment	
                                                                                                           and	your	energy	will	return;	however,	some	
                                                                                                           patients	may	have	to	cope	with	fatigue	for	the	
                                                                                                           rest	of	their	lives.




46      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Discuss	problems	of	fatigue	with	your	health	     Strategies for managing fatigue
care	team	so	strategies	can	be	put	into	place	
to	help	you.	                                         I
                                                  •		 	 f	you	have	a	low	red	blood	cell	count,	          I
                                                                                                     •		 	 dentify	the	time	of	day	when	you	have	the	
                                                     ask	your	doctor	about	medications	that	            most	energy,	then	schedule	activities	or	
Engage	your	family	and	friends	to	help	you	          stimulate	red	blood	cell	production	and	           structure	your	routine	to	accomplish	tasks	
accomplish	tasks	that	are	important	to	you.		        reduce	fatigue.	(Please	see	the	warning	           and	meet	reasonable	goals	at	that	time.	
You	should	view	this	as	taking	control	of	your	      about	these	medications	on	page	51).
                                                                                                         D
                                                                                                     •		 	 rink	enough	fluids.	Ask	your	health	care	
life	and	situation,	not	giving	up	control.
                                                      G
                                                  •		 	 et	plenty	of	rest,	and	take	a	short	nap	        team	how	much	fluid	is	appropriate	for	
                                                     during	the	day.	Do	not	nap	after	the	late	         you	to	drink.	
                                                     afternoon.
                                                                                                         A
                                                                                                     •		 	 void	caffeine	after	noon	and	tobacco	
	   	 ore comprehensive information
    M                                                 R
                                                  •		 	 esearch	shows	that	moderate	daily	              altogether.	
    about coping with side effects can               physical	activity	can	decrease	fatigue.	
    be found on the websites of                                                                          A
                                                                                                     •		 	 sk	others	to	help	you;	delegate	tasks.	
                                                     Try	walking,	swimming,	biking,	or	yoga.	
    Cancer Support Community,                                                                           Don’t	be	shy	about	accepting	gifts	of	food	
                                                     Start	slowly	and	work	up	to	a	comfortable	
    www.cancersupportcommunity.org,                                                                     and	help	with	errands	from	friends	and	
    and the Lung Cancer Alliance,                    level.	Ask	your	doctor	about	cancer	
                                                                                                        family.	View	this	as	taking	control	of	your	
    www.lungcanceralliance.org.                      rehabilitation	or	other	specialized	exercise	
                                                                                                        life	and	situation,	not	giving	up	control.
                                                     programs	for	people	with	cancer	that	
                                                     might	be	available	in	your	area.	                   U
                                                                                                     •		 	 se	shopping	lists	to	shop	more	quickly,	
                                                                                                        or	have	someone	else	shop	for	you.	
                                                      L
                                                  •		 	 earn	mind-body	techniques	like	t’ai	chi	
                                                     or	meditation	to	relax.	                            C
                                                                                                     •		 	 onserve	energy	by	sitting	on	a	stool	to	
                                                                                                        wash	dishes,	cook,	or	do	other	activities	
                                                                                                        for	which	you	might	normally	stand.	




                                                                                            CHAPTER 6 / MAnAging sidE EffECTs                         47
Difficulty breathing                                    Recognizing radiation fibrosis                   and	combination	of	chemotherapy	drugs	
                                                                                                         used.	Your	doctor	will	watch	your	blood	
It	is	also	common	for	people	with	lung	                 Radiation	treatment	can	trigger	the	immune	
                                                                                                         counts	carefully.	Low	blood	counts	can	lead	
cancer	to	have	breathing	problems,	which	               system	to	form	fibrous	scar	tissue	inside	the	
                                                                                                         to	infection,	anemia,	or	bleeding.
can	definitely	decrease	energy	and	cause	               lung:	a	condition	called	radiation	fibrosis.	
fatigue.	Breathing	problems	can	be	caused	by	           It	may	be	temporary,	or	it	could	develop	
                                                                                                         The following blood counts may drop:
the	cancer,	infection,	certain	chemotherapy	            months	or	even	years	after	radiotherapy	
drugs,	fluid	around	the	lungs	or	heart,	or	a	           ends.	The	symptoms	are	common	for	people	            W
                                                                                                         •		 	 hite blood cells (WBCs)—help	the	
condition	called	radiation	fibrosis.	                   undergoing	treatment	for	lung	cancer	and	           body	fight	off	infection.	If	your	WBCs	
                                                        may	include	dry	mouth,	sore	throat,	or	             are	too	low,	you	are	at	increased	risk	for	
Strategies for managing breathing problems              problems	with	swallowing	or	breathing.	             developing	an	infection.	Your	doctor	
                                                                                                            may	want	you	to	take	a	medication	that	
    C
•		 	 all	your	doctor	right	away	if	you	have	a	
                                                        It	is	a	good	idea	to	talk	with	your	radiation	      stimulates	white	blood	cell	production	
     feeling	of	tightness	in	your	chest,	pain,	
                                                        oncologist	about	ways	to	minimize	your	risk	        such	as	Neupogen®	or	Neulasta®,	to	
     fever,	or	trouble	breathing.	
                                                        for	developing	radiation	fibrosis.	                 prevent	your	WBC	count	from	dropping	
    A
•		 	 sk	your	doctor	about	oxygen	therapy	or	                                                               too	low	for	a	long	period	of	time.	
     corticosteroid	therapy	to	relieve	breathing	
                                                                                                             R
                                                                                                         •		 	 ed blood cells (RBCs)—carry	oxygen	
     problems.	                                         Managing low blood counts
                                                                                                            to	your	cells.	If	your	RBC	count	drops	
•		 	 f	you	use	an	inhaler,	be	sure	to	do	so	
    I                                                   Chemotherapy	and	radiation	can	destroy	             too	low,	you	may	become	anemic—your	
     exactly	as	your	doctor	prescribed.	If	             healthy	cells	as	well	as	cancer	cells.	One	         heart	works	harder	and	you	may	feel	
     inhalers	are	not	used	consistently	over	           of	the	most	common	side	effects	people	             fatigued.	Your	doctor	may	suggest	a	blood	
     time,	they	will	not	relieve	symptoms.	             experience	from	chemotherapy	or	radiation	          transfusion	or	a	red	cell	growth	factor	like	
                                                        is	low	blood	counts	(myelosuppression).	In	         Procrit®	or	Aranesp®	to	keep	your	RBCs	
    S
•		 	 ometimes	having	a	fan	in	the	room	or	
                                                        cancer	treatment,	blood	counts	usually	fall	        from	remaining	too	low	for	a	long	period	
     having	a	cooler	room	temperature	helps	if	
                                                        to	their	lowest	level	seven	to	ten	days	after	      of	time.
     you	are	having	difficulty	breathing.	
                                                        chemotherapy,	depending	on	the	type,	dose,	

48      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                   Strategies for managing infection                       P
                                                                                                       •		 	 ractice	meticulous	oral	hygiene.	Avoid	
   WARning AbouT TREATMEnT                                                                                commercial	mouthwashes	that	contain	
   foR loW RbC CounT
                                                       P
                                                   •		 	 ractice	good	hand-washing	techniques:	
                                                                                                          alcohol	because	they	can	dry	out	your	
                                                      use	soap	and	warm	water	and	rub	
   The FDA has issued warnings about                                                                      mouth.	One	teaspoon	of	baking	soda	
                                                      vigorously	for	one	minute	prior	to	eating	
   the use of medications, such as Procrit or                                                             in	a	cup	of	warm	water	is	a	soothing	
   Aranesp (erythropoiesis stimulating agents,        and	after	using	the	toilet.	Make	sure	
                                                                                                          mouthwash	that	helps	to	remove	bacteria.	
   or ESAs), in cancer patients. It is important      others	in	your	home	practice	good	hand	
   to be aware of possible complications              washing,	too.	                                       A
                                                                                                       •		 	 void	cleaning	cat	litter	boxes	or	handling	
   and communicate concerns immediately                                                                   any	other	animal	bodily	waste.
   to your doctor and health care team.                I
                                                   •		 	 f	you	learn	that	your	chemotherapy	will	
   Talk to your doctor about the risks and            cause	low	WBC	(white	blood	cell)	counts,	
   benefits of taking these medications with          keep	a	record	of	your	temperature.	Ask	
                                                                                                       Contact your doctor immediately if you
   your particular type of lung cancer.               your	doctor	about	the	specific	level	of	
                                                                                                       have any of the following symptoms:
                                                      fever	to	report.	
                                                                                                           A
                                                                                                       •		 	 	temperature	of	100.4°	F	or	higher	
•		 	 latelets—promote	blood	clotting.	If	
    P                                                  I
                                                   •		 	 f	your	WBC	count	is	low,	avoid	crowds	or	
                                                                                                          (ask	your	doctor	for	specifics)	
   your	platelet	count	drops	during	therapy,	         people	who	might	be	infected	with	colds,	
   you	may	notice	bruising	or	bleeding.	Your	         flu,	or	other	contagious	diseases.                   P
                                                                                                       •		 	 ain,	redness,	swelling,	or	pus	at	a	
   doctor	may	want	you	to	have	a	platelet	                                                                surgical	site	
                                                       A
                                                   •		 	 void	lung	contaminants	such	as	tobacco	
   transfusion	or	take	a	growth	factor	to	help	                                                        •		 Severe	chills	even	in	the	absence	of	fever	
                                                      or	wood	smoke	from	a	fireplace,	since	
   stimulate	platelet	production.	If	you	are	
                                                      exposure	to	these	substances	may	
                                                                                                       •		 Pain	while	urinating	
   taking	Avastin™	and	notice	that	you	are	
                                                      increase	the	risk	of	infection	in	people	
   coughing	up	bright	red	sputum	(1	tsp	or	                                                            •		 Trouble	breathing	
                                                      who	have	a	suppressed	immune	system.	
   more),	immediately	call	your	physician	or	
                                                   •		 	 void	fresh	or	dried	flowers	as	well	
                                                       A                                               •		 Mouth	sores	
   go	to	the	emergency	room.	In	rare	cases,	
   Avastin™	has	resulted	in	fatal	bleeding	           as	plants,	due	to	the	risk	of	fungal	or	             L
                                                                                                       •		 	 oose	bowel	movements	or	diarrhea	for	
   in	the	lungs	in	patients	being	treated	for	        bacterial	infections.                               more	than	24	hours
   NSCLC.	
                                                                                                CHAPTER 6 / MAnAging sidE EffECTs                      49
                                                        Anemia                                                Bleeding
     No matter what time of the day or night,
     call your doctor immediately if you have               G
                                                        •		 	 et	plenty	of	rest.	Follow	the	strategies	for	       U
                                                                                                              •		 	 se	a	soft	toothbrush;	ask	your	doctor	
     a fever, because this is often a clear                 coping	with	fatigue	mentioned	on	page	46.            about	whether	you	should	floss.
     indication of infection.
                                                            E
                                                        •		 	 at	a	nutritious	diet.	Ask	your	doctor	or	           U
                                                                                                              •		 	 se	an	electric	shaver	instead	of	a	razor.
                                                            nurse	about	foods	that	are	important	for	
                                                                                                              •	 Try	to	avoid	injury.
                                                            you	to	eat	if	you	have	anemia.
                                                                                                                  D
                                                                                                              •		 	 on’t	use	tampons,	suppositories,	
                                                            S
                                                        •		 	 tand	up	slowly;	anemia	can	cause	you	to	
                                                                                                                 enemas,	or	rectal	thermometers.
                                                            feel	dizzy	when	you	get	up	after	lying	or	
                                                            sitting.
                                                                                                              Contact your doctor immediately if you
                                                            A
                                                        •		 	 sk	your	doctor	if	you	need	medication	to	
                                                                                                              have any of the following symptoms:
                                                            increase	your	red	blood	cells.	(Please	see	
                                                            the	warning	about	these	medications	on	               B
                                                                                                              •		 	 ruising	without	an	injury;	tiny	red	dots	
                                                            page	49).                                            on	your	skin
“I liked that the nurses shared anecdotal
 information when I was trying to                       	                                                         B
                                                                                                              •		 	 leeding	from	your	nose	or	gums;	pink	
                                                        Contact your doctor immediately if you                   or	red	urine;	black	or	bloody	bowel	
 cope with side effects. They would say,
                                                        have any of the following symptoms:                      movements
 ‘so-and-so tried this, and it worked
 for them.’ I really appreciated that little            •	 Increased	shortness	of	breath                          H
                                                                                                              •		 	 eadache	or	any	change	in	your	vision

 bit of extra information.”                             •	 Pounding	or	rapidly	beating	heart

                                              — Lisa    •	 Confusion	or	difficulty	concentrating

                                                        •	 Dizziness	or	fainting



50      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Gastro-intestinal system changes                  Strategies for managing chewing and swallowing difficulties, dry mouth, or mouth sores

Problems	due	to	gastro-intestinal	system	         •		 Add	gravy,	sauces,	butter,	and	salad	dressings	to	make	food	easier	to	swallow.	
changes	associated	with	cancer	treatment	are	
                                                  •		 Eat	soft	and	pureed	foods	that	are	easier	to	swallow.	
common	but	very	manageable.	Depending	
on	the	specific	drug(s),	dosage,	and	duration	        C
                                                  •		 	 onsume	food	and	liquids	that	are	warm	rather	than	very	hot	or	cold	
of	treatment,	chemotherapy	can	cause	                (cold	foods	may	be	soothing	if	you	have	mouth	sores).	
gastro-intestinal	problems,	including	loss	of	
                                                  •		 Avoid	greasy,	fatty,	or	fried	foods	and	strong	spices.	
appetite,	changes	in	the	way	food	tastes	and	
smells,	and	sores	in	the	mouth	and	throat.	           G
                                                  •		 	 argle	with	one	teaspoon	of	table	salt	or	baking	soda	added	to	one	cup	of	warm	water	
Radiation	treatment	can	cause	a	condition	           to	keep	your	mouth	clean	and	keep	mouth	sores	from	becoming	infected.	
called	esophagitis,	which	makes	swallowing	       •		 Keep	your	lips	moist	with	lip	balms.	
painful	and	difficult,	often	described	as	
feeling	of	food	getting	stuck	in	your	throat.	    •		 Suck	on	sugar-free	hard	candy	or	popsicles,	or	chew	gum	to	produce	more	saliva.	

                                                      A
                                                  •		 	 sk	your	doctor	if	sucking	on	ice	cubes	or	ice	chips	10	minutes	before	chemotherapy	
Consult	a	registered	dietician	or	nutritionist	      and	15	minutes	afterward	could	help	prevent	mouth	sores.	
to	help	you	maintain	good	nutrition	during	
cancer	treatment	and	beyond.	Ask	your	                I
                                                  •		 	 f	you	are	using	oxygen,	ask	for	a	humidifier	bottle	to	attach	to	the	oxygen	line	

doctor	for	a	referral.	                              to	decrease	dryness.	

                                                      I
                                                  •		 	 f	you	have	mouth	or	throat	pain,	tell	your	doctor	or	nurse	as	soon	as	possible.	
                                                     Medications	that	reduce	pain	or	numb	the	area	are	available.




                                                                                            CHAPTER 6 / MAnAging sidE EffECTs                  51
Strategies for managing loss of appetite                Strategies for managing nausea or vomiting                A
                                                                                                              •		 	 void	greasy,	fatty,	fried,	spicy,	and	very	
                                                                                                                 sweet	foods.	
    I
•		 	 f	you	aren’t	hungry	at	dinnertime,	make	              P
                                                        •		 	 revention	works	best,	so	ask	your	
     breakfast	or	lunch	your	main	meal.	                   doctor	about	anti-nausea	medications	                  A
                                                                                                              •		 	 void	highly	seasoned,	spicy,	tart,	or	
     Similarly,	if	you	aren’t	hungry	first	thing	in	       and	take	them	on	time	and	according	to	               acidic	foods	(no	citrus	foods	or	tomatoes).	
     the	morning,	eat	more	later	in	the	day.	              instructions.	
                                                                                                                  K
                                                                                                              •		 	 eep	your	caloric	intake	high	by	using	
    E
•		 	 at	several	small	meals	or	snacks	rather	              E
                                                        •		 	 at	and	drink	slowly.	                              supplemental	types	of	drinks,	such	as	
     than	three	large	meals	per	day.	                                                                            Ensure®	or	Boost®.	
                                                            T
                                                        •		 	 ry	beverages	such	as	peppermint	tea,	
    K
•		 	 eep	nutritious	snacks	on	hand.	                      ginger	ale,	or	ginger	tea.	                            I
                                                                                                              •		 	 f	cooking	odors	make	you	feel	nauseated,	
                                                                                                                 try	to	(1)	microwave	your	meals,	(2)	use	a	
    V
•		 	 ary	your	diet—try	new	recipes	and	foods.	             E
                                                        •		 	 at	small,	frequent	meals.	
                                                                                                                 strong	venting	fan	while	cooking,	and	(3)	
    A
•		 	 dd	olive	oil	to	increase	the	caloric	intake	          E
                                                        •		 	 at	food	served	at	room	temperature.	               use	frozen	or	chilled	foods,	which	give	off	
     of	foods	you	do	eat.	                                                                                       fewer	odors.	
                                                            S
                                                        •		 	 uck	on	ice	cubes,	mints,	or	candies.	
    C
•		 	 onsider	taking	a	walk	before	meals	to	                                                                      T
                                                                                                              •		 	 alk	with	your	doctor	about	
                                                            R
                                                        •		 	 est	in	a	chair	after	meals.	Do	not	lie	
     spur	your	appetite.	                                                                                        complementary	treatments	like	
                                                           flat	for	at	least	two	hours	after	you	have	
                                                                                                                 acupuncture	and	acupressure	to		
    D
•		 	 rink	protein-fortified	beverages	or	add	             finished	eating.	
                                                                                                                 relieve	nausea.	
     milk,	powdered	milk,	or	yogurt	to	increase	
                                                            E
                                                        •		 	 at	crackers,	toast,	soft	or	bland	fruits	and	
     protein	and	calories.	                                                                                       M
                                                                                                              •		 	 ind-body	techniques	such	as	music	
                                                           vegetables,	oatmeal,	clear	liquids,	and	ice.	
                                                                                                                 therapy	or	guided	imagery	may	also		
    T
•		 	 ry	some	of	the	commercially	prepared	
                                                            E
                                                        •		 	 at	foods	prepared	with	moist	heat,	such	           ease	nausea.	
     food	supplements;	for	variety,	add	fresh	
                                                           as	soups,	stews,	and	casseroles.	
     berries	or	juice.	
                                                            A
                                                        •		 	 void	alcohol	and	smoking.	
    A
•		 	 rrange	to	eat	with	family	and	friends,	or	
     watch	TV	while	you	eat	if	you	are	alone.	


52      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                     MORE ABOUT MEDiCATiONS FOR NAUSEA AND vOMiTiNG



Nausea and vomiting should no longer be a        Surgery and radiation—for example,                 •   Anzemet® (dolasetron) is used for the
serious concern for most people undergoing       radiation therapy to the esophagus or upper            prevention of nausea and vomiting
cancer treatment since these symptoms            body—also can cause nausea and vomiting.               associated with chemotherapy and surgery,
can usually be controlled effectively by         However, radiation therapy for lung cancer             but it should be used with caution in those
medications.                                     does not typically cause nausea and vomiting.          who have, or are at risk for, certain heart
                                                                                                        problems. It is available as an intravenous
Medications for nausea and vomiting allow        Anti-emetic (anti-nausea) medications
                                                                                                        solution and as an oral tablet.
patients to feel better and tolerate more        are often used along with a steroid-like
                                                                                                    •   Emend® (aprepitant) is an oral capsule
aggressive treatments for their disease.         dexamethasone before chemotherapy to
                                                                                                        used with other medicines for the
                                                 prevent the uncomfortable feelings of nausea
Treatments for nausea and vomiting differ                                                               prevention and the control of acute and
                                                 and vomiting. Depending upon the nature of
according to when they are likely to occur and                                                          delayed nausea and vomiting associated
                                                 your nausea and vomiting, your doctor may
their probable cause. Chemotherapy-induced                                                              with chemotherapy. It is available in an
                                                 prescribe one or more of these medications:
vomiting can be divided into three types:                                                               oral and intravenous form and not used to
                                                 •   Aloxi® (palonosetron) is given as a single
•   Acute nausea or vomiting usually occurs                                                             treat nausea and vomiting that you already
                                                     IV dose to prevent both acute and delayed
    within 24 hours of the chemotherapy                                                                 have.
                                                     chemotherapy-induced nausea and
    treatment.                                                                                      •   Phenergan® (promethazine) and
                                                     vomiting.
•   Delayed nausea or vomiting generally                                                                Compazine® (prochlorperazine) are
                                                 •   Zofran® (ondansetron) and Kytril®
    begins 24 hours after the administration                                                            also used to control nausea and are
                                                     (granisetron) are used for prevention of
    of chemotherapy and can persist for six to                                                          administered at the earliest onset of mild
                                                     nausea and vomiting associated with
    seven days.                                                                                         nausea. There are additional medications
                                                     chemotherapy and radiation. They are
                                                                                                        that can be used to control nausea and
•   Anticipatory nausea or vomiting, which is        available as an intravenous solution or oral
                                                                                                        vomiting like Reglan® (metoclopramide),
    thought to be a learned response, occurs         tablet.
                                                                                                        Ativan® (lorazepam), Marinol® (dronabinol),
    prior to administration of chemotherapy
                                                                                                        and others. If the medicine your doctor
    and usually happens when the person
                                                                                                        first prescribed does not work for you, be
    has experienced nausea or vomiting
                                                                                                        sure to let him or her know. You can always
    in previous chemotherapy treatment
                                                                                                        try other medicines so that you do not
    sessions.
                                                                                                        have to deal with nausea and vomiting.


                                                                                            CHAPTER 6 / MAnAging sidE EffECTs                         53
Strategies for managing constipation                    •		 	 sk	your	doctor	before	you	use	a	laxative,	
                                                            A                                              Strategies for managing diarrhea
                                                           stool	softener,	or	suppository.	
    D
•		 	 rink	plenty	of	non-caffeinated	fluids.	                                                                  A
                                                                                                           •		 	 void	high-fiber	foods	that	contain	
     Caffeine	can	cause	or	worsen	constipation	             I
                                                        •		 	 f	you’ve	been	constipated	for	more	than	        roughage,	such	as	whole-grain	breads,	raw	
     since	it	is	a	diuretic,	meaning	that	it	              three	days,	call	your	doctor	immediately.	         fruits	and	vegetables,	and	dried	beans.	
     increases	urine	output.	                              Prolonged	constipation	can	cause	a	
                                                                                                               F
                                                                                                           •		 	 or	a	short	period	eat	low-fiber,	nutritious	
                                                           serious	condition	called	fecal	impaction.
    E
•		 	 at	high-fiber	foods,	such	as	whole-grain	                                                               foods,	like	the	BRAT	diet:	bananas,	rice,	
     breads	and	cereals,	fresh	and	dried	fruits,	                                                             plain	applesauce,	and	toast.	Also	try	
     raw	vegetables,	and	beans.	If	you	eat	fresh,	         A WORD ABOUT BLOATiNG,                             yogurt,	cottage	cheese,	smooth	peanut	
     raw	fruits	and	vegetables,	make	sure	they	            CRAMPiNG, OR GAS                                   butter,	and	white	bread.	
     are	washed	thoroughly.	                               Dairy products are an excellent source
                                                                                                               D
                                                                                                           •		 	 rink	plenty	of	water	between	meals—at	
                                                           of calories and protein, but after
    W
•		 	 alk	or	do	some	form	of	physical	exercise	                                                               least	eight	glasses	of	clear	fluids—but	not	
                                                           chemotherapy or abdominal radiation,
     every	day.	                                                                                              with	meals.	
                                                           some people develop lactose intolerance,
•		 	 at/drink	warm	or	hot	fluids,	such	as	soup	
    E                                                      difficulty in digesting or absorbing the            E
                                                                                                           •		 	 at	foods	and	liquids	high	in	salt	and	
                                                           lactose milk sugar. If you experience
     (but	not	caffeinated	tea	or	coffee)	to	help	                                                             potassium	(minerals	often	lost	during	
                                                           bloating, cramping, or gas several
     stimulate	the	bowel.	                                                                                    diarrhea),	such	as	bouillon,	bananas,	
                                                           hours after eating milk products, lactose
                                                           intolerance may be the problem.                    mashed	potatoes,	and	apricot	nectar.	
    C
•		 	 onsult	your	doctor	before	you	use	an	
     enema.	An	enema	could	cause	bleeding	if	              Talk to your doctor about adding enzyme             A
                                                                                                           •		 	 void	milk	and	milk	products.	
     your	platelet	counts	are	low,	or	lead	to	an	          tablets or liquid drops (available at drug
                                                                                                               E
                                                                                                           •		 	 at	frequent,	small	snacks	rather	than	
     infection	if	your	WBC	count	is	low.	                  stores) to break down the lactose, or use
                                                                                                              three	large	meals	per	day.	
                                                           lactose-reduced dairy products to decrease
                                                           or eliminate your discomfort.




54      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
    A
•		 	 sk	your	doctor	before	you	take	any	over-      person	and	the	treatment.	Do	not	make	any	             C
                                                                                                       •		 	 all	your	local	American	Cancer	Society	
   the-counter	medicines	for	diarrhea.	             assumptions	about	how	you	are	responding	             to	see	if	a	Look Good…Feel Better	program	
                                                    to	treatment	based	on	your	hair	loss.                 is	available	in	your	area.	This	program	is	
    F
•		 	 or	severe	diarrhea,	restrict	your	diet	to	
                                                                                                          for	women	undergoing	cancer	treatment.	
   clear,	warm	liquids	such	as	broth,	or	flat	
                                                    Strategies for managing hair loss
   ginger		ale	for	one	day.	                                                                               S
                                                                                                       •		 	 ometimes	cutting	your	hair	short	or	
                                                        U
                                                    •		 	 se	mild	shampoos	and	soft	hairbrushes.	         buzzing	it	off	completely	gives	you	a	sense	
If	diarrhea	lasts	for	more	than	a	day,	or	if	you	
                                                                                                          of	control	over	the	situation	and	is	easier	
also	have	fever	and/or	pain,	contact	your	              U
                                                    •		 	 se	low	heat	when	drying	your	hair.	
                                                                                                          to	deal	with	than	having	your	hair	fall	out	
doctor	immediately.	
                                                        I
                                                    •		 	 f	you	are	thinking	about	buying	a	wig	          in	large	clumps.	
                                                       (sometimes	called	a	scalp	prosthesis),	try	
                                                       to	do	so	before	you	lose	your	hair	so	the	
Changes in appearance
                                                       hair	stylist	can	more	easily	match	your	        Skin	
Hair loss                                              color	and	preference.		Some	insurance	
                                                                                                       A	variety	of	skin	problems,	including	pain,	
Radiation	to	the	head	and	some	                        policies	will	cover	a	“hair	prosthesis”	with	
                                                                                                       redness,	scaling,	dryness,	sun	sensitivity,	
chemotherapy	drugs	cause	people	to	lose	               a	doctor’s	prescription.	You	may	want	to	
                                                                                                       hives,	and	sometimes	hyperpigmentation	
some	or	all	of	their	hair	(a	condition	called	         explore	this	with	your	social	worker	or	
                                                                                                       (darkening)	of	the	skin	may	be	side	effects	of	
alopecia),	including	scalp	hair,	body	hair,	           doctor’s	office.
                                                                                                       radiation,	photodynamic	therapy,	and	certain	
eyebrows,	and	eyelashes.	When	alopecia	                 D
                                                    •		 	 o	not	dye	your	hair	or	get	a	permanent	      chemotherapies.	
occurs,	it	usually	happens	10	to	21	days	after	        or	body	wave.	
the	first	chemotherapy	treatment.	Talk	to	
                                                        U
                                                    •		 	 se	sunscreen	and	wear	a	hat	or	scarf	to	
your	doctor	about	whether	hair	loss	occurs	
                                                       protect	your	scalp	from	the	sun.	
with	your	specific	treatment	regimen.	Not	
everyone	who	undergoes	cancer	treatment	
will	lose	their	hair;	it	varies	depending	on	the	



                                                                                             CHAPTER 6 / MAnAging sidE EffECTs                        55
The	newer	targeted	therapies,	such	as	                  •		 	 f	you	are	receiving	Avastin™,	it	can	cause	
                                                            I                                                 Strategies for managing pain
Tarceva®,	tend	to	cause	skin	rash,	some	forms	             delays	in	your	body’s	ability	to	heal	from	        and discomfort
of	acne,	and	sometimes	hyperpigmentation	                  a	surgical	wound.	If	you	are	scheduled	for	
                                                                                                                  A
                                                                                                              •		 	 lways	report	pain	to	your	doctor.	You	are	
of	the	skin	and	nails.	If	a	rash	from	a	targeted	          a	surgical	procedure,	you	will	be	taken	
                                                                                                                 the	expert	on	your	pain.	Communication	
therapy	becomes	severe	enough	that	painful	                off	of	Avastin™	for	a	period	of	time	until	
                                                                                                                 about	pain	is	the	first	step	toward	
pustules	develop,	or	if	you	are	concerned	                 your	oncologist	feels	it	is	safe	to	restart	the	
                                                                                                                 controlling	it.	
about	your	appearance,	please	consult	your	                medication.	
doctor	or	nurse	immediately.	Some	rashes	                                                                         B
                                                                                                              •		 	 e	honest	about	your	pain.	Keep	a	journal	
                                                            C
                                                        •		 	 all	your	doctor	if	your	skin	reaction	gets	
can	become	severe	if	infected	and	must	be	                                                                       to	track	when	you	are	in	pain—use	a	scale	
                                                           worse.	
managed	carefully	by	your	doctor.	                                                                               of	0	to	10	to	rate	your	pain	with	10	as	the	
                                                                                                                 worst	pain	you	can	imagine.	
Strategies for managing skin problems                   Pain and discomfort
                                                                                                                  N
                                                                                                              •		 	 ote	how	much	medication	you	are	taking	
    U
•		 	 se	skin	care	products,	especially	ones	           For	many	people,	the	most	frightening	part	of	           and	the	time	you	take	it.	It	is	important	to	
     that	contain	lanolin	or	aloe,	to	relieve	and	      a	cancer	diagnosis	is	the	prospect	of	being	in	          take	your	pain	medicine	on	the	schedule	
     prevent	chapped	and	hardened	skin.	                pain.	Cancer	itself	can	cause	pain	in	several	           as	prescribed	so	you	don’t	get	into	“peaks	
    D
•		 	 o	not	use	lotion	or	any	skin	products	on	         different	ways.	Some	cancer	treatments	                  and	valleys”	with	your	pain	control.
     your	skin	immediately	before	radiation	            may	also	cause	pain.	After	surgery	for	lung	
                                                                                                                  C
                                                                                                              •		 	 onsider	consulting	a	pain	or	symptom	
     treatment.	                                        cancer,	there	is	typically	pain	at	the	incision	
                                                                                                                 management	specialist	if	you	continue	to	
                                                        site.	Women	may	have	an	especially	difficult	
•		 	 rotect	your	skin	from	the	sun,	both	
    P                                                                                                            have	problems	managing	your	pain.	(Your	
                                                        time	as	the	incision	line	is	often	at	or	near	
     during	and	after	treatment.	                                                                                doctor	can	give	you	a	referral.)	
                                                        the	brassiere	line.	If	you	do	have	pain,	you	
    I
•		 	 f	you	have	a	rash,	keep	the	affected	             should	know	that	pain	can	almost	always	                  A
                                                                                                              •		 	 sk	about	mind-body	and	relaxation	
     area	clean	and	dry;	do	not	use	over-               be	relieved.	Always	remember,	you	have	the	              techniques.	(See	page	66)	
     the-counter	acne	medications	unless	               right	to	relief	from	pain.
     approved	by	your	doctor.	

56      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
•		 	 void	snug	clothing	that	can	irritate	the	
    A                                             pain,	allowing	your	pain	medicine	to	be	            For safety measures:
   incision	site.	Women	may	find	camisoles	       adjusted	accordingly.	Your	doctor	and	nurse	
                                                                                                          B
                                                                                                      •		 	 e	careful	when	grasping	sharp	
   and	other	loose	undergarments	more	            will	carefully	watch	the	amount	of	pain	
                                                                                                         or	hot	objects.	
   comfortable.	                                  medication	you	are	taking.
                                                                                                          U
                                                                                                      •		 	 se	handrails	when	going	up	and	
    A
•		 	 lways	tell	your	physician	about	any	
                                                                                                         down	stairs.	
   abdominal	pain,	especially	if	you	are	         Pain from nervous system changes
   taking	Avastin™.	                              (peripheral neuropathy)                                 B
                                                                                                      •		 	 e	careful	driving,	as	it	may	be	difficult	
                                                                                                         to	feel	your	brakes	or	accelerator.	
•		 	 o	not	hesitate	to	discuss	any	concerns	
    D                                             Certain	chemotherapy	drugs	such	as	the	
   about	taking	pain	medications	with	your	       platinum-based	drugs	(carboplatin,	cisplatin)	          A
                                                                                                      •		 	 lways	wear	shoes	or	house	slippers	
   health	care	team.	                             and	taxanes	(Taxol	and	Taxotere)	can	cause	            with	rubber	soles	to	prevent	falls.	
                                                  peripheral	neuropathy,	which	is	a	tingling	or	
•		 	 o	NOT	wait	until	the	pain	is	unbearable	
    D                                                                                                     R
                                                                                                      •		 	 emove	throw	rugs	or	other	objects	
                                                  burning	sensation,	weakness,	or	numbness	
   to	take	pain	medication.	It	is	easier	to	                                                             in	your	home	that	make	it	easy	for	you		
                                                  in	the	hands	or	feet	that	can	make	it	difficult	
   prevent	pain	or	relieve	it	when	it	starts	                                                            to	trip.	
                                                  to	handle	objects	or	even	to	move	your	
   than	it	is	to	treat	pain	once	it	becomes	
                                                  fingers.	Let	your	physician	know	if	you	are	            A
                                                                                                      •		 	 void	exposing	your	fingers	and	toes	to	
   severe.	
                                                  experiencing	any	of	these	types	of	sensations	         very	hot	or	very	cold	temperatures.	
Many	patients	who	are	prescribed	pain	            or	notice	difficulties	with	opening	jars,	
medications	express	concerns	about	               buttoning	your	clothes,	or	picking	up	small	
becoming	addicted	to	them.	Research	has	          objects	from	flat	surfaces.	
shown	that	less	than	1%	of	people	taking	
pain	medications	become	addicted.	Pain	
can	be	well	managed	with	virtually	no	risk	
of	addiction	if	you	communicate	regularly	
with	your	health	care	team	about	your	


                                                                                               CHAPTER 6 / MAnAging sidE EffECTs                         57
Hypertension
                                                         RARE ToxiCiTiEs
Increasing	blood	pressure	(hypertension)	is	
one	side	effect	from	Avastin™.	Your	physician	           Platinum-based chemotherapy agents can also cause muscle weakness, hearing loss, ringing
                                                         in the ears, and difficulty walking. In addition, these same drugs can affect the levels of
will	monitor	your	blood	pressure	carefully.	
                                                         certain chemicals in your blood called electrolytes, which can lead to more severe side
It	is	important	for	you	to	let	your	physician	
                                                         effects. Your physician will check your electrolyte levels prior to any chemotherapy and
know	if	you	are	having	headaches	or	any	
                                                         provide supplementation if your level is low so these side effects can be controlled.
unusual	symptoms	that	may	be	caused	by	
hypertension.	                                           Please report any of these symptoms to your physician immediately:

                                                         •     visual changes. Avastin™ can cause a rare condition called leukoencephalopathy.
                                                               The first symptom of this condition is visual changes, so it is very important to let
                                                               your physician know if you notice any such changes. Leukoencephalopathy usually
                                                               reverses when Avastin™ is no longer used.

                                                         •     Worsening cough, chest pain, or shortness of breath. Tarceva® can cause interstitial
                                                               lung disease, an inflammation of the lungs. This is a rare side effect but can be
                                                               fatal. Notify your doctor immediately if you experience a worsening cough, chest pain, or
                                                               shortness of breath while taking Tarceva®. The problem can reverse itself
                                                               with discontinuation of Tarceva®, or steroids are used to reverse the inflammation.




58    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Changes in sexual functioning and                   If	you	are	concerned	about	becoming	a	
effects on fertility                                parent	in	the	future,	consider	asking	your	
                                                    doctor	about	harvesting	sperm	or	eggs	before	
Many	people	have	said	that	after	being	
                                                    beginning	treatment.	For	more	information,	
diagnosed	with	cancer,	they	experience	a	
                                                    please	refer	to	Chapter	7	on	Intimacy.
change	in	their	interest	and	desire	for	sexual	
activity.	They	also	often	have	concerns	about	
the	effect	of	treatment	on	their	ability	to	have	
children.	If	you	think	you	may	want	to	have	
children	in	the	future,	talk	to	your	doctor	               “If my husband has headaches, bone pain, or nausea, I try to find out
prior	to	treatment.	
                                                            if these are side effects of his medications and learn about ways to
                                                            alleviate his anxiety. We try to think of side effects as the chemo working
Strategies for managing changes in
sexual functioning and fertility                            to fight off cancer cells.”

                                                                                                                   — Annie, Caregiver
Give	yourself	and	your	partner	some	time	
to	adjust	to	the	many	changes	in	your	body	
and	your	life.	It	is	normal	not	to	be	interested	
in	sexual	activity	because	of	the	emotional	
stress	of	cancer,	fatigue,	or	pain.	Mood	swings	
and	sadness	are	common.	Counseling	can	
sometimes	be	helpful	if	you	continue	to	have	
anxiety	about	intimacy	and	sexuality	issues.		




                                                                                             CHAPTER 6 / MAnAging sidE EffECTs            59
T H E i M P O R TA N C E O F P H Y S i C A L A C T i v i T Y


The	Patient	Active	Concept©	extends	to	all	                 P
                                                        •		 	 articipation	in	low-impact	activities	such	        P
                                                                                                             •		 	 hysical	therapy	can	help	you	regain	
aspects	of	your	cancer	experience,	including	              as	yoga,	t’ai	chi,	walking,	or	chair	exercises	      strength.	Consult	with	your	doctor	about	a	
being	active	physically.	                                  can	help	to	focus	the	mind,	alleviate	               referral	to	a	trained	physical	therapist	who	
                                                           tension	and	anxiety,	reduce	stress,	and	             is	under	the	direction	of	your	oncologist.	
No	matter	how	fit	you	were	before	your	                    give	you	a	renewed	sense	of	physical		               This	therapy	may	take	place	in	a	hospital-
diagnosis,	you	may	lose	strength	and	physical	             well-being.	                                         based	program,	at	an	outpatient	facility,	or	
conditioning	as	a	result	of	treatment	for	                                                                      in	your	home.	
                                                        Strategies for staying active
lung	cancer.	Fatigue,	pain,	and	emotional	
                                                                                                                 A
                                                                                                             •		 	 n	occupational	therapist	can	evaluate	
adjustments	are	common,	and	you	may	                        M
                                                        •		 	 ake	an	effort	to	get	out	of	bed	each	
                                                                                                                your	ability	to	return	to	your	daily	
begin	to	need	assistance	with	your	regular	                day	if	possible.	Even	simple	activities	
                                                                                                                activities	and	help	increase	your	strength	
daily	tasks.	                                              like	walking	to	another	room	or	taking	a	
                                                                                                                and	coordination.	
                                                           shower	is	a	form	of	healthy	activity.		
Improving	your	physical	fitness	after	cancer	                                                                When	you	are	exercising,	remember	not	to	
                                                            E
                                                        •		 	 ngage	in	activities	you	enjoyed	before	
treatments	can	provide	many	benefits	to	your	                                                                confuse	active	with	overactive.	You	need	
                                                           cancer!	They	may	have	to	be	modified,	but	
overall	health	and	well-being:	                                                                              rest	and	relaxation	during	and	after	cancer	
                                                           you	can	begin	to	rediscover	the	activities	
                                                                                                             treatments.	Exhaustion	can	weaken	your	
    P
•		 	 hysical	activity	helps	prevent	problems	             that	are	important	to	you.
                                                                                                             physical	and	emotional	defenses,	and	
     associated	with	immobility	such	as	stiff	
                                                            S
                                                        •		 	 et	an	activity	goal	for	yourself;	take	a	      fatigue	can	make	you	feel	depressed	and	
     joints,	breathing	problems,	constipation,	
                                                           walk	every	day,	if	you	can—even	if	a	short	       discouraged.	
     skin	sores,	poor	appetite,	and	depression.	
                                                           one	out	to	get	the	mail.	
    M
•		 	 any	people	find	that	exercise	helps	them	
                                                            K
                                                        •		 	 eep	track	of	your	exercise	in	an	exercise	
     gradually	increase	their	energy,	reduce	
                                                           log.	
     fatigue,	and	increase	their	ability	to	
     function	more	independently.	




60      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                             “CHEMOBRAiN”—COGNiTivE                              If	you	feel	that	you	may	have	chemobrain,	
ConTACT youR doCToR if you                   DYSFUNCTiON                                         talk	with	your	doctor	about	the	problems	
ExPERiEnCE Any of THE folloWing                                                                  you	are	experiencing	so	other	causes	
CondiTions:                                  It	is	estimated	that	one	in	five	people	who	        (medicine	reactions,	depression,	and	sleep	
• You become progressively weaker            undergo	chemotherapy	will	experience	what	          disturbances)	can	be	ruled	out.	Some	people	
• Your pain increases                        many	survivors	refer	to	as	“chemobrain.”	           have	found	the	following	to	be	helpful:	
                                             Symptoms	like	forgetfulness,	lack	of	
• You have headaches, blurred vision,
                                             concentration,	difficulty	finding	the	right	        •		 Make	lists	
  numbness, or tingling
                                             word,	and	difficulty	multi-tasking	have	all	        •		 Carry	a	personal	diary	or	calendar	
• Your fatigue is so great that you cannot
  do the things you need or want to do
                                             been	described	by	cancer	survivors.	Though	
                                                                                                 •		 Do	puzzles	to	“exercise	your	brain”	
                                             no	one	knows	why	this	occurs,	some	theories	
                                             include:	toxic	effects	of	chemotherapy,	severe	         R
                                                                                                 •		 	 educe	stress	with	relaxation	or	
                                             stress,	hormone	shifts,	or	the	effects	of	cancer	      meditation	practices	
                                             itself	on	the	body.	
                                                                                                     T
                                                                                                 •		 	 ake	notes	during	conversations	and	
                                                                                                    consider	having	a	support	person	join	you	
                                                                                                    at	important	appointments	to	take	notes	
                                                                                                    as	well.

                                             “Finding peace is possible at any moment
                                              by anyone, regardless of living with lung
                                              cancer or any other disease.”
                                                    — Gabriel Rocco, M.A., Mind-Body
                                               Health Coordinator, TWC Philadelphia




                                                                                      CHAPTER 6 / MAnAging sidE EffECTs                        61
C O M P L E M E N TA R Y, i N T E G R AT i v E , O R A LT E R N AT i v E M E D i C i N E ( C A M )


Today,	many	medical	centers	and	cancer	                     I
                                                        •		 	 ntegrative	therapy	refers	to	the	           considering	with	your	doctor	and	health	
treatment	centers	combine	standard	therapy	                combined	offering	of	conventional		            care	team.	The	American	Cancer	Society	
with	a	broad	range	of	other	treatments.	                   and	complementary	therapies.	                  (ACS)	suggests	that	you	consider	answers	to	
No	matter	what	options	you	explore,	it	is	                                                                the	following	questions	before	you	decide	
                                                        The	combined	approach	of	integrative	
essential	to	discuss	any	new	treatments	or	                                                               to	use	methods	outside	of	standard	medical	
                                                        medicine	may	be	used	to	control	pain,	relieve	
practices	you	may	be	considering	with	your	                                                               treatment.	
                                                        anxiety,	and	improve	quality	of	life.	To	date,	
oncologist.	A	variety	of	complementary	
                                                        however,	there	is	no	scientific	data	to	prove	
activities	may	fall	under	this	category	(e.g.,	                                                           Questions to ask
                                                        that	complementary	or	alternative	therapy	
meditation).	However,	you	need	to	be	aware	
                                                        alone	can	cure	cancer.	It	is	important	not	to	       W
                                                                                                          •	 	 ill	the	therapy	counteract	the	
that	some	alternative	therapies	promise	cure;	
                                                        view	alternative	or	complementary	cancer	            effectiveness	of	my	current	treatment?	
be	cautious	about	unproven	treatments.	
                                                        treatments	as	substitutes	for	proven	standard	
                                                                                                             I
                                                                                                          •	 	 s	the	therapy	used	to	cure	the	cancer	or	
    C
•		 	 omplementary	therapy	refers	to	                   therapies.	
                                                                                                             allow	standard	treatment	to	work	better?	
     supportive	methods	(e.g.,	meditation	
     for	stress	reduction,	peppermint	tea	                                                                   I
                                                                                                          •	 	 s	it	to	relieve	symptoms	or	side	effects?	
     for	nausea,	acupuncture	for	back	pain)	            Are these CAM therapies safe to use
                                                                                                             A
                                                                                                          •	 	 re	those	who	offer	the	treatment	
     that	are	used	to	complement,	or	add	to,	           with standard cancer treatment?
                                                                                                             recognized	experts	in	cancer	treatment?	
     conventional	treatments.	                          Many	complementary	methods	can	be	used	
                                                                                                             H
                                                                                                          •	 	 as	research	about	the	therapy	been	
•		 	 lternative	therapy	refers	to	treatments	
    A                                                   safely	along	with	standard	treatment	to	
                                                                                                             published	in	scientific	journals?	
     that	are	promoted	for	use	instead	                 help	relieve	symptoms	or	side	effects,	ease	

     of	conventional	therapy	(such	as	                  pain,	and	enhance	daily	life.	However,	in	           I
                                                                                                          •	 	 s	the	therapy	promoted	only	through	

     chemotherapy	or	surgery).	These therapies          some	cases,	herbal	supplements	have	been	            mass	media,	or	also	in	scientific	journals?	

     have not been scientifically tested.               found	to	actually	interfere	with	the	success	
                                                                                                             I
                                                                                                          •	 	 s	the	therapy	expensive?	Will	insurance	
                                                        of	chemotherapy	agents.	Thus,	it	is	critical	
                                                                                                             cover	the	cost?
                                                        to	discuss	any	CAM	therapies	you	may	be	



62      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                                                                THE MiND-BODY
                                                                                                CONNECTiON


signs of TREATMEnT To Avoid                                                                     The	medical	community	is	increasingly	aware	
                                                                                                of	how	the	mind	and	body	work	together	in	
A “yes” answer to any item on the checklist below is a reason for caution and concern.
If you are not sure, talk to your doctor or nurse before moving ahead:                          our	overall	health	and	recovery	from	illness.	
                                                                                                Making	the	mind-body	connection	can	
•   Is the treatment based on an unproven theory, rather than a carefully controlled
                                                                                                make	a	significant	difference	for	people	with	
    scientific study?
                                                                                                cancer;	managing	your	thoughts,	feelings,	
•   Does the treatment promise a cure for cancer?                                               beliefs,	and	attitudes	may	affect	your	overall	
                                                                                                quality	of	life	during	and	after	treatment.
•   Are you counseled to avoid conventional medical treatment?

•   Is the treatment or drug a “secret” that only certain providers can offer?                  Research	has	linked	stressful	events	to	the	
                                                                                                development	of	certain	health	conditions	
Organizations that provide credible information about CAM practices and the role they may
play in cancer treatment (in addition to ACS) include the National Center for Complementary     such	as	heart	disease	or	a	reduced	immune	
and Alternative Medicine (NCCAM) and the National Cancer Institute’s Office of Cancer           response.	The	same	link	has	not	been	found	
Complementary and Alternative Medicine (OCCAM). Please refer to the Resources Chapter           between	stress	and	cancer.	It	is	important	
for additional information.                                                                     that	you	do	not	blame	yourself	for	the	onset	
                                                                                                of	cancer	or	the	course	of	the	illness	itself.	
                                                                                                It	is	equally	important	that	you	find	ways	to	
                                                                                                actively	cope	with	cancer	and	the	stress	that	
                                                                                                it	brings,	not	only	to	improve	your	quality	
                                                                                                of	life,	but	also	to	possibly	enhance	your	
                                                                                                immune	functioning	and	your	ability	to	
                                                                                                manage	treatment	and	treatment	side	effects.




                                                                                         CHAPTER 6 / MAnAging sidE EffECTs                        63
Mind-body techniques                                   Here are some examples of mind-body                    M
                                                                                                          •		 	 indfulness meditation—a	self-
                                                       practices:                                            directed	practice	for	relaxing	the	body	
Mind-body	techniques	can	help	reduce	
                                                                                                             and	calming	the	mind.	Meditation	can	be	
stress	caused	by	cancer.	Practices	such	as	            •		 Guided imagery—a	simple,	effective	way	
                                                                                                             done	while	sitting	quietly	or	while	moving	
guided	imagery,	relaxation,	meditation,	yoga,	            to	transform	your	emotional	state	of	mind	
                                                                                                             mindfully,	such	as	a	walking	meditation.
etc.,	have	been	found	to	help	people	better	              while	incorporating	deep	breathing	and	
manage	side	effects	and	lifestyle	changes	                meditation.	The	feelings	you	experience	        For	practice	exercises	in	breathing	and	
during	and	after	cancer	treatment.                        are	governed	by	the	thoughts	and	images	        relaxation,	visit	Cancer	Support	Community	
                                                          on	which	you	focus.	Think	of	something	         Online	at	www.cancersupportcommunity.
There	are	many	types	of	mind-body	                        positive,	and	your	emotions	will	be	led	in	     org.	
techniques	available	for	you	to	try.	Mind-                that	direction.
body	techniques	work	best	when	done	
                                                           Y
                                                       •		 	 oga—a	mindful	movement	practice	that	
as	a	regular	practice	in	your	life.	You	can	
                                                          includes	stretching	and	strengthening	
experience	the	most	benefit	from	them	if	you	
                                                          poses,	breathing	exercises,	and	meditation	
learn	how	to	incorporate	them	into	your	daily	
                                                          practices.
life	by	doing	them	at	a	particular	time	each	
day	for	a	certain	amount	of	time,	or	by	doing	             Q
                                                       •		 	 igong and t’ai chi—both	are	Chinese	
them	in	moments	of	opportunity	throughout	                practices	using	physical	movements	that	
the	day	(e.g.,	while	you	are	on-hold	on	the	              are	believed	to	promote	the	flow	of	“qi,”	or	
phone,	waiting	in	line	in	the	grocery	store,	or	          life	force,	and	support	internal	harmony,	
stuck	in	traffic).                                        good	health,	and	vitality.




64     f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
            “We always tried to keep things as
             normal as possible, even in the




                                                   Chapter Seven / qUaLitY oF LiFe
             most abnormal situations. We
             made sure to always celebrate
             birthdays and anniversaries in any
             way, shape, or form that we could.”

                              — Meg, Caregiver




Quality of Life
                                  C h a p t e r 7 / q U a L i t Y o F L i F e ........................................................................... 65
Chapter Seven / qUaLitY oF LiFe




                                  	    Distress	and	the	emotional	impact	of	lung	cancer	. .........................................................65

                                  	    Anger	...............................................................................................................................67

                                  	    Depression	and	anxiety	...................................................................................................68

                                  	    Stress	and	the	immune	system	........................................................................................69

                                  	    Dealing	with	stress	..........................................................................................................70

                                  	    Getting	the	support	you	need	. .........................................................................................71

                                  	    Relationships	...................................................................................................................75

                                  	    Talking	with	children	. ......................................................................................................75

                                  	    Intimacy	. ..........................................................................................................................77

                                  	    Spirituality	.......................................................................................................................78

                                  	    Caregivers	........................................................................................................................79
Quality of Life
Dealing	with	a	cancer	diagnosis	         DiSTRESS AND THE
                                                                                          disTREss
and	treatment	can	be	emotionally	        E M O T i O N A L i M PA C T
                                                                                          Distress is the most underreported and
                                         OF LUNG CANCER
challenging.		You	may	experience	a	                                                       common side effect of cancer. Distress
                                                                                          extends along a continuum ranging from
wide	range	of	feelings	that	include	     Emotional	distress	is	a	common	and	normal	
                                                                                          common feelings of vulnerability, sadness,
                                         experience	for	people	who	recently	have	
fear,	shock,	and	isolation.	It	can	                                                       and anger, to problems that can become
                                         been	diagnosed	with	lung	cancer,	who	are	
be	difficult	to	maintain	a	sense	of	                                                      disabling such as severe depression,
                                         undergoing	treatment,	or	who	are	living	with	    anxiety, and panic. It is important to
control	in	your	life	as	you	embark	on	   lung	cancer.		Caregivers	and	family	members	     know that these feelings can be managed
a	whirlwind	of	doctor	appointments,	     also	experience	emotional	distress.	             successfully in a variety of ways. Be sure to
                                                                                          discuss your feelings with your health care
medical	tests,	and	treatment.	                                                            providers at each office visit.
                                         Remember	that	you	have	experienced	
                                         difficult	situations	in	the	past	and	have	
                                         managed	them	successfully.	Turn	to	the	
                                         coping	mechanisms	that	you	used	in	the	
                                         past	or	learn	others	to	try	now.		Cancer	
                                         support	groups	or	individual	counseling	will	
                                         introduce	you	to	new	coping	strategies	that	
                                         may	help	you	to	reduce	anxiety,	depression,	
                                         or	distress	in	general.	Being	Patient	Active	
                                         with	your	emotional—as	well	as	physical—
                                         well-being	can	help	improve	your	quality	of	
                                         life	throughout	your	cancer	experience.




                                                                                         CHAPTER 7 / QuAliTy of lifE                      65
The	emotional	impact	of	a	lung	cancer	                Living	with	cancer	can	often	affect	a	person’s	     The	energy	it	takes	to	stifle	normal	negative	
diagnosis	on	an	individual	or	family	can	             emotional	and	mental	health.	Depression,	           emotions	can	make	coping	with	the	illness	
vary	greatly,	depending	on	the	extent	of	the	         shock,	anxiety,	extreme	fearfulness,	and	           much	more	difficult.	It	is	important	to	
disease,	its	treatment,	and	each	person’s	            even	panic	are	some	possible	reactions	to	a	        acknowledge	emotional	distress	when	
situation	and	personality.	At	Cancer	Support	         cancer	diagnosis.	There	may	also	be	changes	        it	affects	your	ability	to	carry	out	daily	
Community,	LCA	and	other	cancer	support	              in	family	roles,	financial	resources,	and	issues	   activities,	affects	your	relationships	with	
organizations,	people	with	cancer	learn	that	         related	to	self-esteem.	Understanding	what	         caregivers,	makes	physical	symptoms	seem	
by	sharing	their	experiences	and	supporting	          the	diagnosis	will	mean	for	the	person	with	        more	severe,	and	impacts	your	ability	to	cope	
each	other,	they	can	begin	to	cope	with	the	          lung	cancer	and	their	caregivers	is	a	process,	     with	your	treatment.
emotional	distress	associated	with	cancer.	           and	reactions	will	change	over	time.	
Learning	you	are	not	alone	can	be	an	                                                                     Mourning	the	loss	of	“normal”	and	of	
important	tool	in	the	fight	for	recovery	for	         Emotional	distress	can	range	from	feelings	         certainty	about	the	future	is	to	be	expected.	
both	patients	and	caregivers.	It	is	important		       of	vulnerability,	sadness,	and	fear	of	             When	these	feelings	are	acknowledged,	it	is	
to	find	people	with	whom	you	can	share	               recurrence	or	death,	to	problems	that	are	          much	easier	to	have	a	positive	approach	to	
and	express	your	feelings.		Some	people	are	          more	debilitating	such	as	clinical	depression,	     the	challenges	ahead.	
able	to	do	this	with	close	friends	and	family;	       intense	anxiety,	or	panic.	
others	benefit	from	talking	one-on-one	with	
a	therapist	or	counselor,	or	by	participating	in	
a	cancer	support	group.	
                                                                     The Resources section in the back of this booklet provides you
                                                                     with a list of places where you can locate cancer support groups.




66    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
ANGER


Anger	is	a	normal	response	to	being	               Denial	and	anger	sometimes	play	an	                  It	takes	time	to	accept	a	diagnosis	of	cancer	
diagnosed	with	lung	cancer.	It	is	an	emotion	      important	part	in	coping	with	difficult	news,	       and	to	understand	what	it	will	mean	for	both	
that	may	arise	at	any	point	as	you	navigate	       like	a	diagnosis	of	cancer.	Our	hearts	and	          patient	and	family.	People’s	reactions	differ	
lung	cancer	treatment	and	the	health	care	         heads	can’t	take	everything	in	at	once,	and	         and	vary	over	time,	and	feelings	of	denial,	
system.	Your	first	reaction	may	have	been,	        sometimes	our	emotions	help	protect	us	until	        anger,	or	guilt	may	come	and	go.	Remember	
“Why	me?”	If	you	were	a	smoker	and	quit	or	        we	can	get	a	grasp	on	what	this	diagnosis	           that	you	are	not	alone.	Many	other	people	
you	never	smoked	and	still	got	lung	cancer,	       means	in	our	life.	For	some,	anger	is	an	            with	cancer	share	the	same	feelings	and	
you	may	feel	angry	at	the	tobacco	industry,	       affirmation	of	life	and	their	desire	to	fight	for	   concerns,	and	it	sometimes	helps	to	talk	with	
your	doctor,	or	the	sight	of	others	smoking.	If	   recovery.	                                           other	people	going	through	treatment.	By	
you	still	smoke,	you	may	feel	angry	or	guilty	                                                          becoming	Patient	Active,	you	can	regain	a	
when	others	mention	quitting	while	you	feel	       It	is	healthy	to	express	your	emotions—              sense	of	control	about	your	treatment,	your	
as	though	smoking	is	your	only	“comfort”	          including	anger—in	a	healthy	and	                    life,	and	even	your	anger.
left.	Some	people	feel	angry	when	they	are	        appropriate	manner.	Holding	onto	or	
not	communicating	well	with	their	doctor	          repressing	emotions,	especially	anger,	
or	family.	This	lack	of	communication	may	         can	hinder	your	fight	for	recovery	and	can	
be	a	temporary	reaction,	or	it	may	indicate	a	     deplete	energy	and	resources	that	could	be	
deeper	concern	that	needs	to	be	addressed.         better	used	in	embracing	your	treatment	and	
                                                   recovery.	




                                                                                                        CHAPTER 7 / QuAliTy of lifE                    67
DEPRESSiON AND ANxiETY


Sometimes	emotional,	social,	or	spiritual	              Signs of depression                                Tips to cope with depression and anxiety
distress	can	feel	unmanageable;	you	may	feel	
                                                        •		 	 ersistent	sad	or	“empty”	feelings	most	of	
                                                            P                                                  T
                                                                                                           •		 	 alk	to	friends	and	family	about	your	
as	though	you	have	lost	interest	in	things	that	
                                                           the	day                                            feelings	and	fears.
used	to	make	you	happy.	You	should	discuss	
these	feelings	with	your	health	care	team;	             •		 	 oss	of	interest	or	pleasure	in	ordinary	
                                                            L                                                  M
                                                                                                           •		 	 ake	an	appointment	with	a	counselor,	
they	may	be	able	to	help.	Your	doctor	may	                 activities                                         therapist,	or	psychiatrist	to	help	deal	with	
prescribe	a	change	in	your	medications	or	                                                                    your	thoughts	and	feelings.
                                                            D
                                                        •		 	 ifficulty	sleeping
recommend	that	you	speak	to	an	oncology	
                                                                                                               J
                                                                                                           •		 	 oin	a	support	group.
social	worker	or	therapist.                                 C
                                                        •		 	 hange	in	appetite
                                                                                                               A
                                                                                                           •		 	 sk	your	doctor	about	medications	that	
                                                            C
                                                        •		 	 hange	in	body	weight	(loss	or	gain)
                                                                                                              can	help.
                                                            D
                                                        •		 	 ifficulty	concentrating	or	making	
                                                                                                           Overall,	people	cope	with	their	fears	in		
                                                           decisions
     If you or your loved one has serious                                                                  different	ways.	Individuals	need	to	identify		
     thoughts of suicide, help is just a                    F
                                                        •		 	 atigue	or	restlessness                                                                     	
                                                                                                           solutions	that	match	their	natural	temperament	
     phone call away. Call the National
                                                                                                           and	personality.	In	many	cases,	learning	to	
     Suicide Hotline at 1-800-SUICIDE                   •	 Thoughts	of	suicide	or	death
                                                                                                           express	a	wide	range	of	emotions	within	a	
     (784-2433) to be connected with a
     crisis center in your local area. This                                                                support	group	or	individual	therapy	can:
     service is available 24 hours a day,
                                                                                                               D
                                                                                                           •		 	 ecrease	feelings	of	hostility	
     seven days a week.
                                                                                                           •		 Improve	self-confidence	and	assertiveness

                                                                                                               I
                                                                                                           •		 	 mprove	an	individual’s	expression	of	
                                                                                                              support,	empathy,	interest,	and	humor

                                                                                                           •		 Improve	physical	functioning

                                                                                                           •		 Improve	your	overall	quality	of	life

68      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
S T R E S S A N D i T S i M PA C T O N T H E i M M U N E S Y S T E M


Emotions	affect	hormones	and	the	way	the	         The	three	most	significant	psychosocial	
                                                                                                                     “I make sure I go
immune	system	functions.	Emotions	can	also	       stressors	for	people	with	cancer	can	be	
                                                                                                                      to bed early and
interfere	with	your	active	participation	in	      overcome.	They	are:	
                                                                                                                      get a lot of sleep.
treatment	decisions	and	sense	of	well-being.	
                                                     U
                                                  •	 	 nwanted aloneness.	Many	cancer	                                I can’t keep a
                                                     support	organizations,	such	as	Cancer	
As	previously	mentioned,	stress	alone	has	not	                                                                        positive attitude
                                                     Support	Community	and	Lung	Cancer	
been	proven	to	be	a	direct	cause	of	cancer.	                                                                          if I’m tired and
                                                     Alliance,	are	available	to	connect	people	
The	diagnosis	and	treatment	of	cancer	brings	                                                                         cranky.”
                                                     in	similar	situations	throughout	the	
a	great	deal	of	stress	into	our	lives.	You	do	
                                                     cancer	experience.	This	connection	can	                                      — Jerry
have	some	control	over	how	you	respond	to	
                                                     reduce	a	person’s	fear	that	they	are	alone	
that	stress	and	the	magnitude	and	duration	
                                                     and	increase	their	access	to	support.	
of	the	other	stressors	in	your	life.	Patient	
Active	behaviors,	attitudes,	and	actions	give	       L
                                                  •	 	 oss of control.	When	you	participate	
you	even	more	control	over	how	you	react	            actively	in	decisions	that	affect	your	
to	the	stress	of	diagnosis	and	treatment.	           treatment	and	your	daily	life	with	cancer,	
Stress	management	techniques	can	become	             you	take	back	some	control	over	your	life.	
valuable	allies	in	the	treatment	of	cancer	as	
                                                  •	 Loss of hope.	There	are	many	forms	of	
you	learn	ways	to	take	charge	of	your	reaction	
                                                     hope.	What	is	hoped	for	may	change,	
to	the	challenges	that	cancer	brings.	
                                                     however.	For	example:	when	physical	cure	
                                                     does	not	seem	possible,	the	focus	shifts	to	
                                                     hope	for	physical	comfort	and	emotional	
                                                     and	spiritual	healing.	




                                                                                                    CHAPTER 7 / QuAliTy of lifE          69
DEALiNG WiTH STRESS


Stress-management	techniques	can	become	                    T
                                                        •		 	 alk	with	your	health	care	team	about	      Family	members	also	experience	distress	
valuable	allies	in	the	treatment	of	cancer.		              the	possible	need	for	medication	such	as	     and	emotional	challenges	when	caring	for	a	
Part	of	being	empowered	to	manage	a	                       antidepressants.	                             loved	one	with	cancer;	they	may	at	times	feel	
cancer	diagnosis	is	learning	to	deal	with	the	                                                           even	more	helpless	and	frustrated	in	their	
                                                            R
                                                        •		 	 ecognize	that	cancer	is	a	challenging	
challenges	of	stress	that	accompany	this	                                                                inability	to	“fix	it”	for	their	loved	one.	Tips	for	
                                                           experience	and	that	asking	for	
disease.                                                                                                 caregivers	and	family	members	include:
                                                           professional	help	or	medication	to	
                                                           relieve	distress	symptoms	is	not	a	sign	of	       P
                                                                                                         •		 	 rovide	reassurance	that	it	is	normal	to	
There	are	many	ways	to	cope	actively	with	
                                                           weakness.	It	takes	courage	and	strength	to	      feel	sad,	frustrated,	and	afraid.	
cancer	to	increase	your	sense	of	well-being.	
                                                           ask	for	help.
For	example:                                                                                                 L
                                                                                                         •		 	 isten	to	what	the	person	is	saying.	Do	
                                                            S
                                                        •		 	 eek	help	through	individual	or	family	        not	feel	like	you	have	to	have	an	answer	or	
    E
•		 	 xpress	your	emotions.	Do	not	keep	
                                                           counseling	and	support	groups.	                  “fix	it.”	Sometimes	just	being	able	to	talk	
     feelings	inside—they	will	only	become	
                                                                                                            through	feelings	can	relieve	the	symptoms	
     more	overwhelming.	
                                                                                                            of	depression	or	anxiety.	
    B
•		 	 e	mindful	and	allow	for	reflection.	Use	
                                                                                                             R
                                                                                                         •		 	 ecognize	you	may	have	your	own	
     prayer,	meditation,	and/or	deep	breathing	
                                                                                                            emotional	challenges	as	you	support	your	
     and	relaxation	exercises.	
                                                                                                            loved	one	with	cancer,	and	seek	support	
                                                                                                            for	yourself	as	well.
                            “I’d say, as a person who was raised to be independent, that
                                                                                                             S
                                                                                                         •		 	 eek	help	for	you	and	your	loved	one	
                             I wasn’t accustomed to leaning on anyone. With cancer,
                                                                                                            through	counseling	and	support	groups.	
                             you have to let go. You have to rely on the strength and love
                             of other people.”

                                                                                          — Terri



70      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
GETTiNG THE SUPPORT YOU NEED


There	are	many	ways	to	get	the	support	you	       than	somebody	else	in	the	same	situation.	     If	you	seek	a	support	group,	here	are	some	
need.	Part	of	the	challenge	is	accepting	that	    That	is	the	basis	of	support	groups.	Some	     things	to	keep	in	mind:
you’d	like	support,	and	that	it’s	okay.	If	you	   groups	consist	of	cancer	patients	and	their	
                                                                                                     Th
                                                                                                 •		 	 ink	about	your	personality.	Would	
already	have	an	existing	network	of	support	      family	members	together;	others	hold	
                                                                                                    you	prefer	the	individualized	attention	
through	family,	friends,	your	work,	or	place	     separate	groups	for	patients	and	support	
                                                                                                    of	personal	therapy	or	the	collective	
of	worship,	use	it;	learn	with	whom	you	          persons.	
                                                                                                    dynamic	of	support	groups?
feel	comfortable	sharing	the	positive	and	
negative	emotions	you	experience.                 Support	groups	may	be:	                            W
                                                                                                 •		 	 hat	type	of	support	group	would	work	
                                                                                                    best	for	you?	There	are	both	face-to-face	
Seeking	support	can	diminish	feelings	                O
                                                  •		 	 pen-ended,	where	participants	attend	
                                                                                                    and	online	support	groups.	
of	isolation,	despair,	and	loss	of	control,	         as	many	meetings	as	they	find	helpful.	
and	should	be	as	integral	to	your	cancer	                                                        No	matter	how	the	group	is	organized,	
                                                      T
                                                  •		 	 ime-limited,	for	a	fixed	number	of	
treatment	as	chemotherapy,	radiation,	or	                                                        the	basic	goal	is	to	provide	opportunities	
                                                     sessions.	
surgery.	People	who	are	able	to	connect	                                                         for	people	to	share	concerns	and	coping	
with	others	in	a	safe,	constructive	way,	             D
                                                  •		 	 iagnosis-specific,	where	all	members	    strategies	and	find	they	aren’t	alone.	Effective	
such	as	at	Cancer	Support	Community	and	             have	the	same	kind	of	cancer.               support	groups	are	usually	offered	free	of	
through	Lung	Cancer	Alliance,	report	an	                                                         charge	and	run	by	a	counselor	or	therapist	
                                                      A
                                                  •		 	 ge-related,	such	as	those	for	young	
improvement	in	their	quality	of	life	during	                                                     experienced	in	working	with	people	with	
                                                     adults.	
cancer	and	beyond.	                                                                              cancer	and	their	families.	Group	facilitators	
                                                      P
                                                  •		 	 rofessionally	facilitated	or	led	by	a	   are	not	necessarily	experts	in	cancer	
                                                     fellow	survivor.	                           treatments;	their	job	is	to	try	to	make	sure	
Support groups
                                                  •		 	 ace-to-face,	online	(through	bulletin	
                                                      F                                          that	the	needs	of	everyone	in	the	group	are	
“I know how you feel…”                                                                           addressed.	The	participants	become	the	
                                                     boards	or	real-time	chats),	or	via	the	
No	one	understands	the	experience	of	                telephone.	                                 experts	in	helping	each	other	through	similar	

someone	affected	by	cancer	more	completely	                                                      situations.	



                                                                                                 CHAPTER 7 / QuAliTy of lifE                     71
You	can	decide	whether	a	support	group	               Counseling                                        How to find counseling services
would	be	helpful	for	you	or	not.	You	may	                                                                   Th
                                                                                                        •		 	 e	hospital	or	treatment	center	where	
                                                      A	diagnosis	of	lung	cancer	may	prompt	
be	surprised	by	the	difference	the	right	                                                                  you	receive	care	may	provide	counseling	
                                                      a	decision	to	seek	counseling	or	
group	can	make	in	your	experience.	Ask	                                                                    services.	
                                                      psychotherapy,	or	sometimes	a	person	or	
your	doctor,	nurse,	or	social	worker	about	                                                                 A
                                                                                                        •		 	 sk	the	doctor,	nurse,	or	social	worker	for	
                                                      family	member	with	cancer	may	cope	well	
groups,	and	see	the	Resources	section	for	                                                                 a	referral	to	a	counselor	experienced	in	
                                                      during	the	acute	treatment	phase	but	find	
additional	information.	You	may	have	to	                                                                   dealing	with	the	challenges	of	cancer.	
                                                      that	after	treatment	they	feel	more	vulnerable	
attend	a	few	meetings	before	you	can	tell	
                                                      to	emotional	distress.	These	are	excellent	           T
                                                                                                        •		 	 alk	to	your	minister,	priest,	rabbi,	or	
if	the	group	is	the	right	experience	for	you	
                                                      times	to	pursue	any	type	of	counseling,	             other	spiritual	leader	about	counseling	
and	you	may	have	to	try	support	groups	
                                                      whether	it	is	individual,	family,	or	group	          resources.	
offered	by	different	organizations	before	
                                                      support.	
you	decide	where	you	want	to	continue.	                                                                     C
                                                                                                        •		 	 ontact	Cancer	Support	Community,	
You	may	find	you	prefer	an	online	support	                                                                 Lung	Cancer	Alliance,	or	other	cancer	
                                                      Counseling	will	teach	you	effective	ways	to	
group	instead	of	a	face-to-face	group.	                                                                    support	organizations	(see	Resources).	
                                                      communicate	about	the	illness	to:	
For	more	information	on	support	groups,	
visit	Cancer	Support	Community	at	www.                    F
                                                      •		 	 ind	new	ways	to	cope	with	the	normal	
cancersupportcommunity.org.	Lung	Cancer	                 feelings	and	reactions	to	lung	cancer.	        Support for living with a long-term illness
Alliance	also	maintains	a	list	of	lung	cancer-        •		 	 ddress	changes	in	roles	and	family	
                                                          A                                             As	a	result	of	improvements	in	early	
specific	support	groups	in	the	U.S.	Call	1-800-          routines	that	may	result	from	a	chronic	       diagnosis	and	treatment,	management	
298-2436	to	find	out	what	may	be	available	in	           illness	in	the	family.	                        of	some	forms	of	lung	cancer	is	similar	to	
your	area.		                                                                                            treating	a	chronic	condition.	That	means	
                                                          R
                                                      •		 	 elieve	some	of	the	emotional	side	
                                                                                                        that	a	person	might	have	recurrent	cycles	of	
                                                         effects	of	cancer	and	treatments	and	help	
                                                                                                        disease,	treatment,	and	then	recovery.
                                                         you	cope	with	changes	in	your	physical	
                                                         abilities	after	treatment	(e.g.,	body	image	
                                                         changes	or	mobility	issues).				

72    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Many	people	fear	recurrence,	especially	           Supporting Yourself                                 Strategies to help promote self-image
when	treatment	ends.	The	challenge	is	to	
                                                   Physical self-image                                     R
                                                                                                       •		 	 esume	grooming	habits	practiced	
learn	how	to	live	in	the	moment	and	balance	
                                                                                                          before	the	diagnosis—hairstyles,	makeup,	
the	fear	of	recurrence	with	the	desire	to	enjoy	   Treatment	for	lung	cancer	almost	always	
                                                                                                          manicures,	etc.	Many	people	have	even	
health	and	wellness.	It	is	during	this	period	     involves	some	combination	of	surgery,	
                                                                                                          found	they	are	inspired	to	try	new	styles	
that	people	often	find	support	groups	or	          chemotherapy,	and	radiation	treatments.	
                                                                                                          and	have	embraced	this	new	opportunity.
individual	counseling	to	be	of	great	value.	       Cancer	surgery	can	leave	scars	and	may	
                                                   cause	neurological	damage	and	a	temporary	              R
                                                                                                       •		 	 ecognize	that	weight	loss	or	gain	often	
If	you	experience	a	relapse,	you	may	feel	         or	permanent	physical	impairment.	                     accompanies	chemotherapy	treatments	
even	more	distress	than	when	you	were	             Radiation	or	chemotherapy	may	cause	side	              and	have	clothing	altered	accordingly.	
first	diagnosed.		However,	you	may	find	you	       effects	such	as	fatigue	and	hair	loss,	which	
                                                                                                           E
                                                                                                       •		 	 xercise	daily	whenever	possible.	
have	more	tools	at	your	disposal	to	help	you	      can	create	more	illness	or	discomfort	than	
cope	than	you	did	initially.	Many	people	          the	disease	itself.	                                    P
                                                                                                       •		 	 articipate	in	activities	outside	the	home	
cope	surprisingly	well	with	subsequent	                                                                   that	you	enjoyed	before	your	illness.	
recurrences	because	they:	                         Although	it	may	seem	superficial,	improving	
                                                                                                           P
                                                                                                       •		 	 articipate	in	workshops	such	as	Look
                                                   your	appearance	can	promote	self-esteem	
•	 Know	what	to	expect	                                                                                   Good...Feel Better,	sponsored	by	the	
                                                   under	any	circumstances	and	may,	in	fact,	
                                                                                                          American	Cancer	Society	and	offered	at	
   A
•	 	 re	more	knowledgeable	about	treatment	        help	a	person	with	cancer	actually	feel	better.	
                                                                                                          many	of	Cancer	Support	Community’s	
   options	and	how	to	find	support	                This	is	not	about	vanity,	it	is	about	self-care.	
                                                                                                          locations.	
                                                   Engage	with	family	and	friends	in	finding	
   H
•	 	 ave	learned	to	employ	Patient	Active	
                                                   ways	to	promote	self-care	and	feel	good	                J
                                                                                                       •		 	 oin	a	support	group	with	other	people	
   strategies	that	help	them	retain	control	
                                                   about	yourself.	                                       who	have	cancer,	where	feelings	can	be		
   and	hope
                                                                                                          shared	openly.	




                                                                                                       CHAPTER 7 / QuAliTy of lifE                      73
                                                       Education Workshops                             • Taking Action.	Work	closely	with	your	
     PARTnERsHiP WiTH AlA
                                                                                                          medical	team	to	determine	what	available	
                                                       This Frankly Speaking About Cancer:
                                                                                                          treatment	options	will	work	best	for	
                                                       Lung Cancer	booklet	is	part	of	a	complete	
     Cancer Support Community has partnered                                                               you	and	identify	the	need	for	additional	
                                                       psychosocial	educational	program	that	
     with the American Lung Association to                                                                support	to	overcome	the	social	and	
     bring this resource to areas where a              includes	free	patient	education	workshops.	
                                                                                                          emotional	challenges	of	a	lung	cancer	
     Cancer Support Community affiliate                The	purpose	of	these	workshops	is	to	educate	
                                                                                                          diagnosis	
     does not exist. This valuable partnership         people	affected	by	lung	cancer	about	the	
     increases the mobility of this program            most	current	lung	cancer	treatments,	           • Connecting with Others.	Ask	the	
     and ensures that it is delivered to more          symptom/side	effect	management,	and	               speakers	any	questions	you	may	have	
     populations in need.To learn more about
                                                       survivorship.	The	seminars	include	a	slide	        about	your	cancer	and	connect	with	other	
     the American Lung Association, please
                                                       presentation	by	a	medical	oncologist,	a	           participants	who	may	be	going	through	
     visit: http://www.lungusa.org/.
                                                       presentation	by	an	oncology	social	worker	         similar	experiences
                                                       and/or	lung	cancer	survivor,	and	a	question-	
“I was so enlightened by the number of                 and-answer	period.	
resources available to me as a caregiver                                                               How to Find a Workshop Near Me
and to my sister as a lung cancer                      Attending	a	workshop	will	help	you	be	more	     Workshops	are	scheduled	throughout	the	
patient/survivor. Thank-you!”                          Patient	Active by:	                             year	at	affiliates	of	the	Cancer	Support	
                                                                                                       Community,	partnership	organizations,	and	
                           — CSC Participant           • Being Informed.	Learn	about	your	
                                                                                                       cancer	centers.		To	find	out	if	a	workshop	
                                                          cancer,	the	most	current	treatments	
                                                                                                       is	being	held	near	you,	please	visit:	www.
                                                          available	and	how	to	better	manage	side	
                                                                                                       cancersupportcommunity.org/events.	
                                                          effects	experienced	from	treatments	




74     f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
R E L AT i O N S H i P S                                                                              TA L k i N G W i T H C H i L D R E N


Your	friends	and	family	may	want	to	help,	       Although	some	people	feel	that	their	                Why children should be told
but	sometimes	don’t	know	how.	In	an	effort	      marriage	or	relationship	is	strengthened	
                                                                                                      Cancer	is	an	impossible	secret	to	keep.	
to	be	supportive,	they	might	say	or	do	things	   through	the	process	of	dealing	with	a	crisis	
                                                                                                      Children	sense	and	know	more	than	adults	
that	aren’t	entirely	helpful	to	you.	Although	   together,	being	the	primary	provider	of	
                                                                                                      often	give	them	credit	for.	Children	will	
family	and	friends	can	be	the	greatest	          physical	and	emotional	care	to	a	person	
                                                                                                      overhear	telephone	conversations,	pick	up	
source	of	support	following	a	lung	cancer	       with	cancer	can	also	be	highly	stressful.	
                                                                                                      their	parents’	anxiety,	blame	themselves,	
diagnosis,	they	can	also	add	to	the	stress	of	   Often,	caregivers	find	it	difficult	to	ask	for	
                                                                                                      and	fear	the	worst	if	they	are	given	no	
the	experience.                                  and	receive	help.	Attending	support	groups,	
                                                                                                      information.	When	a	parent	has	cancer,	the	
                                                 couples	workshops,	family	counseling,	
                                                                                                      natural	desire	to	protect	the	children	through	
It	is	not	uncommon	for	a	cancer	diagnosis	to	    educational	programs,	and	retreats	may	show	
                                                                                                      silence	usually	backfires	and	makes	things	
produce	changes	in	personal	relationships.	      people	in	crisis	new	ways	of	coping	with	life-	
                                                                                                      worse.	
Relatives	and	friends	may	struggle	to	find	a	    threatening	illness.	
balance	between	supporting	someone	they	
care	about	who	has	cancer	and	taking	care		      	It	can	be	useful	to	put	together	a	list	of	tasks	
of	themselves.	Rather	than	risk	saying	or	       for	family	and	friends	who	offer	to	help.	For	
doing	the	wrong	thing	because	of	their	own	      example,	friends	can	accompany	the	person	
                                                                                                      “Our strategy was two-fold with our
fears	about	the	future,	they	may	say	nothing	    to	medical	appointments,	shop	for	food	and	
or	avoid	contact.	People	with	lung	cancer	       prepare	meals,	drive	children	to	activities,	         kids. One was to always be honest with
may	worry	about	who	will	be	there	if	they	       mow	the	lawn,	or	assist	with	household	               them — that didn’t mean telling them
need	help.	                                      tasks.	Be	specific	about	what	you	need	when	          everything, but it meant always telling
                                                 people	offer	their	assistance.		Keep	in	mind	         them the truth. Two was to try and keep
                                                 that	people	offering	help	are	eager	to	be	able	       their lives as normal as possible.”
                                                 to	do	something—and	you	will	be	allowing	
                                                 them	this	opportunity	to	be	supportive.                                                     — Jerry




                                                                                                      CHAPTER 7 / QuAliTy of lifE                   75
If	parents	do	not	explain	the	situation	with	           How and what to tell children
age	appropriate	facts,	their	children	may:	
                                                        Young	children	up	to	the	age	of	eight	will	not	      If	other	family	members	have	died	of	cancer,	
    H
•		 	 ear	about	a	parent’s	cancer	from	                 need	a	great	deal	of	detailed	information;	          children	may	assume	the	worst	possible	
     someone	else	and	have	trouble	trusting	            older	children	and	adolescents	will	need	            outcome.	What	people	tell	their	children	
     their	parents	afterward.	                          and	deserve	to	know	more.	In	a	two-parent	           depends	largely	on	how	they	understand	
                                                        household,	it	is	advisable	for	parents	to	talk	      their	own	cancer	and	its	prognosis.
    Th
•		 	 ink	their	parents	are	trying	to	conceal	
                                                        to	their	children	together.	If	single	parents	are	
     something	and	have	trouble	believing	the	
                                                        feeling	a	bit	anxious	about	the	conversation,	
     truth	when	they	are	told.	
                                                        they	may	want	to	ask	a	relative	or	friend	to	be	
    D
•		 	 ecide	that	whatever	is	happening	is	too	          present.	
     terrible	to	be	discussed	and	become	even	
                                                                                                                The National Cancer Institute’s free
     more	fearful.	                                     Parents	should	set	aside	a	quiet	time	                  booklet, When Someone in Your Family
                                                        dedicated	for	this	conversation.	Although	              Has Cancer, can help families start
    B
•		 	 elieve	that	they	are	to	blame	for	the	
                                                        no	one	wants	to	alarm	children,	there	is	               difficult discussions. Call 1-800-4-CANCER.
     cancer	because	they	have	been	angry	
                                                        nothing	wrong	with	crying	when	a	crisis	
     with	their	mom	or	dad	or	misbehaved.	
                                                        happens.	Crying	is	normal	and	healthy,	and	
     (Parents	should	openly	discuss	this	fear	
                                                        by	explaining	that	everyone	needs	to	cry	
     and	reassure	children	that	this	is	not	how	
                                                        sometimes	because	they	are	sad,	parents	give	
     cancer	is	caused.)	
                                                        children	permission	to	express	their	own	
    W
•		 	 orry	that	cancer	is	contagious,	that	             feelings.	
     everyone	dies	from	it,	or	that	they	or	the	
     other	parent	will	become	ill.	




76      f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
iNTiMACY


Many	people	struggle	with	regaining	an	           Sexual intimacy
intimate	relationship	after	a	lung	cancer	
                                                  Physical	survival	is	usually	uppermost	in	            I
                                                                                                     •	 	 f	you	feel	comfortable	with	self-touch,	
diagnosis.	Treatments	can	make	you	feel	
                                                  the	mind	of	a	person	diagnosed	with	cancer,	          relax	in	private.	It	may	take	some	patience	
alone	even	if	there	are	loving	and	supportive	
                                                  and	sex	may	seem	relatively	unimportant.	             and	practice	to	feel	sexual	pleasure	again.
people	at	your	side.	Some	of	that	loneliness	
                                                  Once	treatment	is	completed,	people	usually	
may	come	from	a	change	in	the	intimacy	of	                                                              I
                                                                                                     •	 	 f	you	are	a	man	with	an	erection	problem,	
                                                  experience	a	return	of	sexual	desire,	but	it	is	
your	relationships	and	a	change	in	your	self-                                                           your	primary	care	physician	(or	possibly	a	
                                                  often	complicated	by	worries	related	to	body	
confidence.	Sharing	your	fears	and	concerns	                                                            urologist)	can	help.	
                                                  image	changes	or	effects	of	treatment.	
with	your	partner	or	loved	one	may	allow	
                                                                                                        I
                                                                                                     •	 	 f	you	are	a	woman	who	has	pain	during	
them	the	opportunity	to	provide	emotional	or	
                                                  Here	are	some	suggestions	that	might	help:            sexual	touching	or	intercourse,	it	is	
physical	closeness.
                                                                                                        crucial	to	get	some	help.	Use	a	vaginal	
                                                     T
                                                  •	 	 alk	with	your	sexual	partner	about	
                                                                                                        moisturizer	regularly	and	use	a	water		
                                                     concerns,	fears,	and	feelings	of	
                                                                                                        or	silicone-based	vaginal	lubricant	during	
                                                     embarrassment.
                                                                                                        sex.	If	pain	persists,	your	gynecologist		
   CAnCER CAn ACTuAlly iMPRovE
   THE inTiMATE RElATionsHiPs in
                                                     D
                                                  •	 	 epression	can	cause	a	decrease	in	sexual	        can	help.
   youR lifE.                                        desire;	your	doctor	can	help.
                                                                                                        I
                                                                                                     •	 	 f	the	problem	is	a	loss	of	attraction	
   About 30-50% of men or women already              E
                                                  •	 	 xercise	and	healthy	nutrition	can	give	          between	you	and	your	partner,	couples	or	
   in a committed relationship when                  you	more	energy	for	sexual	contact.                individual	counseling	can	help	pinpoint	
   diagnosed say they feel closer to their
                                                                                                        what	is	going	on.
   partner after dealing with cancer. They           I
                                                  •	 	 f	you	have	distracting	thoughts	about	
   stop taking each other for granted and            cancer	that	interfere	with	relaxation	and	
   are less likely to argue about the small          good	physical	feelings,	try	to	focus	on	your	
   hassles of daily life. They are grateful for
                                                     own	sensations	during	sexual	contact	
   each other’s support.
                                                     or	think	about	a	particularly	romantic	
                                                     experience.


                                                                                                     CHAPTER 7 / QuAliTy of lifE                     77
                                                      SPiRiTUALiTY


People	are	often	reluctant	to	discuss	                Being	diagnosed	with	a	potentially	life-             If	you	find	that	you	want	to	explore	the	
sexuality.	Health	care	professionals	rarely	ask	      threatening	disease	often	challenges	people	         impact	of	this	experience	on	your	faith,	you	
whether	their	patients	have	questions	about	          to	take	a	reflective	look	at	their	life.	The	        may	find	it	helpful	to	talk	to	your	pastor,	
sex,	leaving	it	to	the	person	with	lung	cancer	       crisis	of	cancer	can	serve	to	help	people	gain	      rabbi,	or	a	pastoral	counselor	in	your	
to	raise	the	subject,	yet	this	is	an	important	       insight	into	their	beliefs	and	experiences,	and	     community	about	the	difficult	questions	
concern	to	discuss.	                                  thereby	promote	personal	growth.	                    that	arise	and	receive	reassurance	that	
                                                                                                           having	doubts	and	being	angry	are	normal	
	Remember	that	sexuality	is	more	than	                Each	of	us	holds	beliefs	about	life,	its	            responses	to	a	cancer	diagnosis.	Members	of	
intercourse.	It	comprises	all	the	feelings	and	       meaning,	and	its	value,	whether	or	not	we	           religious	and	spiritual	communities	also	may	
actions	associated	with	loving	someone,	              participate	in	a	religious	tradition.	If	you	or	a	   provide	practical	help,	such	as	assistance	
including	a	gentle	touch,	holding	hands,	             loved	one	is	diagnosed	with	lung	cancer,	you	        with	transportation,	meals,	and	visitation	
kissing,	hugging,	warmth,	caring,	physical	           may	find	comfort	in	your	spiritual	beliefs	or	       services.	
closeness,	and	emotional	intimacy.	                   you	may	question	your	faith.	Despite	current	
                                                      understanding	about	the	causes	of	cancer,	
                                                      families	sometimes	feel	distressed	by	the	idea	
                                                      that	the	illness	might	be	a	punishment	for	
                                                      some	past	sin	or	lack	of	faith.	


      “I’ve tried to surround myself with positive, pleasant people to keep fun and
       laughter in my life. I’ve used visualization, meditation and prayer – and
       just refused to believe things were hopeless, even when professionals told
       me this. These things all helped me to survive 17 years since I was first
       diagnosed at Stage IV.”
                                                                           — CSC Participant


78    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
CAREGivERS


Living	with	someone	who	has	a	serious	          •		 	 onsider	support	services	offered	through	
                                                    C                                                                   “I guess the hardest
disease	is	not	easy.	People	with	cancer	and	       the	patient’s	insurance	plan.	Insurance	                              part about being a
the	people	who	care	about	them	face	many	          case	managers	can	help	you	learn	how	                                 caregiver to my
problems	and	challenges.	Coping	with	these	        to	take	advantage	of	the	various	benefits	
                                                                                                                         wife was feeling
issues	can	be	easier	with	information	and	         offered.
                                                                                                                         helpless. Sometimes
support.
                                                    T
                                                •		 	 ry	to	maintain	some	of	your	normal	                                there’s nothing
                                                   activities.	It	can	be	difficult,	but	it’s	crucial	
If	you	are	a	family	member	or	friend	of	                                                                                 you can do but just
                                                   for	both	your	well-being	and	that	of	your	
someone	with	lung	cancer,	you	may	find	the	                                                                              hold her hand.”
                                                   loved	one.
following	suggestions	helpful:                                                                                            — Ken, Caregiver
                                                    Y
                                                •		 	 ou	are	doing	an	important	and	
    L
•		 	 earn	about	lung	cancer	and	how	it’s	
                                                   sometimes	difficult	job.	Remember	that	
   treated.
                                                   you	need	time	to	take	care	of	yourself	and	
    S
•		 	 upport	your	loved	one	by	allowing	them	      your	own	physical	and	emotional	health.
   to	express	their	feelings	and	concerns	
                                                Caregivers	often	identify	stress	as	their	
   when	they	want	to;	do	not	push	them	to	
                                                biggest	problem.	Coping	with	stress	can	be	
   communicate	when	they	don’t.
                                                difficult,	but	stress	management	is	essential	
    U
•		 	 nderstand	that	side	effects	from	the	     to	maintain	your	caretaking	responsibilities.
   cancer	or	its	treatment	may	impact	your	
   loved	one’s	ability	to	do	the	things	they	
   used	to.




                                                                                                        CHAPTER 7 / QuAliTy of lifE         79
                                                     RESOURCES FOR CAREGivERS


                                                     National Family Caregivers Association
                                                     www.nfcacares.org	
                                                     1-800-896-3650



                                                     Family Caregiver Alliance
                                                     www.caregiver.org	
                                                     1-800-445-8106



                                                     Cancer Support Community
                                                     www.cancersupportcommunity.org/mm/	
                                                     caring/caregive-support.aspx	
                                                     1-888-793-WELL




                                                     There is always a way to find meaning
                                                     and a sense of quality in your life.




80   f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
          “What I found most important




                                              Chapter eight / praCtiCaL ConCernS
          for my wife was simply to be
          present for her and be positive,
          encouraging, helpful and upbeat.
          She was anxious enough having
          to face all the questions in her
          mind and the decisions regarding
          treatment and follow-up. She
          needed to be able to count on me
          to be strong for her, and that’s
          what I tried to do despite all my
          own concerns.”

                         — Harry, Caregiver




Practical Concerns
Chapter eight / praCtiCaL ConCernS




                                     C h a p t e r 8 / p r a C t i C a L C o n C e r n S .............................................................. 81
                                     	   Employment	issues	. ..........................................................................................................81

                                     	   Insurance	and	financial	concerns	....................................................................................82

                                     	   Legal	issues	. ......................................................................................................................83

                                     	   Practical	end-of-life	plans	................................................................................................84

                                     	   Keeping	a	hopeful	attitude	...............................................................................................85
Practical Concerns
While	your	initial	concerns	will	focus	           Americans with Disabilities Act (ADA)             Family and Medical Leave Act (FMLA)
primarily	on	health	and	recovery,	issues	such	
                                                  Under	the	ADA,	anyone	who	has	had	cancer	         This	law	allows	an	ill	person	or	a	family	
as	finances,	insurance,	legal	matters,	and	
                                                  is	considered	disabled	and	may	be	entitled	to	    member	caring	for	an	ill	person	to	take	up	
employment	will	follow	closely	behind.	There	
                                                  reasonable	accommodation	at	the	workplace.	       to	12	weeks	off	from	work	without	pay	with	
are	some	steps	you	can	take	now	to	address	
                                                  Reasonable	accommodation	is	any	                  no	loss	of	benefits.	It	gives	cancer	survivors	
these	practical	issues,	from	keeping	careful	
                                                  modification	or	adjustment	to	a	job	or	the	       time	for	physical	rehabilitation	or	counseling	
records	of	all	expenses	to	working	with	an	
                                                  work	environment	that	will	enable	a	qualified	    they	may	need	before	they	return	to	their	
experienced	attorney	to	draft	a	will,	a	living	
                                                  employee	with	a	disability	to	perform	            old	job	or	start	a	new	one.	Under	this	law,	
will,	and	medical	power	of	attorney.	You	may	
                                                  essential	job	functions.	You	are	responsible	     the	employee	is	required	to	provide	the	
want	to	discuss	these	types	of	decisions	with	
                                                  for	notifying	your	employer	of	the	disability.	   employer	30	days	notice	before	the	FMLA	is	
close	family	members,	friends,	health	care	
                                                  The	employer	is	not	obligated	to	provide	         scheduled	to	begin,	unless	there	is	a	medical	
providers,	and	spiritual	advisors.
                                                  accommodation	if	the	employee	does	not	           emergency.	FMLA	applies	to	employers	of	
                                                  ask.	The	ADA	only	applies	to	employers	with	      50	or	more	employees	as	well	as	to	public	
                                                  15	or	more	employees.	The	ADA	does	not	           agencies.
EMPLOYMENT iSSUES
                                                  apply	if	you	are	no	longer	able	to	perform	the	
Although	many	people	with	lung	cancer	            essential	functions	of	your	job.
                                                                                                    vocational Rehabilitation Act of 1973
feel	unable	to	work	during	treatment,	some	
find	it	valuable	to	maintain	as	much	of	their	                                                      Under	this	law,	people	with	cancer	may	be	
“normal”	lifestyle	as	possible.	There	is	no	                                                        eligible	for	job	training	if	they	seek	a	different	
reason	why	a	person	with	lung	cancer	who	                                                           kind	of	work	than	they	did	before	cancer.	
feels	able	to	work,	even	part	time,	should	not	                                                     State	government	employment	agencies	can	
be	able	to	do	so.	Three	federal	laws	provide	                                                       help	with	this	process.
some	protections	and	benefits	for	people	
with	cancer	and	their	caregivers:



                                                                                                CHAPTER 8 / PRACTiCAl ConCERns                        81
iNSURANCE AND FiNANCiAL CONCERNS


Lung	cancer	can	impose	heavy	economic	                Health insurance                                  Social	Security	pays	disability	benefits	under	
burdens	on	patients	and	families.	For	some	                                                             two	programs:
                                                      If	you	have	health	insurance	and	have	
people,	most	or	all	of	the	medical	expenses	
                                                      questions	about	what	treatments	it	covers,	           S
                                                                                                        •		 	 ocial	Security	Disability	Insurance	
are	paid	by	health	insurance.	For	others,	
                                                      call	your	insurance	provider	and	ask	about	          (SSDI)	for	insured	workers,	their	disabled	
insurance	may	only	partially	cover	the	costs,	
                                                      your	coverage.	You	can	also	talk	with	your	          surviving	spouses,	and	children	of	
and	some	people	may	not	be	insured	at	all.
                                                      human	resources	department	or	manager	               disabled,	retired,	or	deceased	workers.
                                                      at	work.	If	you	don’t	have	health	insurance	
Some	of	the	financial	burden	for	many	                                                                      S
                                                                                                        •		 	 upplemental	Security	Income	(SSI)	
                                                      or	need	financial	assistance	to	cover	health	
people	is	caused	by	job	and	career	changes	                                                                for	people	with	little	or	no	income	and	
                                                      care	costs,	there	are	some	organizations	and	
that	can	happen	during	lung	cancer	                                                                        resources,	or	those	who	have	not	worked	
                                                      programs	that	offer	help.	Talk	to	the	social	
treatment	and	recovery.	Concerns	about	                                                                    to	the	point	of	being	eligible	for	SSDI.	
                                                      worker	or	business	officer	of	your	hospital	or	
insurance	coverage	also	come	up	for	lung	                                                                  Most	people	who	get	SSI	are	also	eligible	
                                                      clinic	about	any	financial	concerns	you	may	
cancer	survivors	who	are	considering	a	                                                                    for	Medicaid.
                                                      have.
career	change.


Whatever	your	financial	situation,	there	
                                                      Disability insurance                              If	you	and	your	doctor	anticipate	that	you	
are	government	programs	and	nonprofit	
                                                                                                        will	be	out	of	work	for	at	least	one	year	due	
organizations	offering	advice	and	help.	              Whether	or	not	you	have	health	insurance,	
                                                                                                        to	lung	cancer	treatment,	you	should	apply	
(See	Resources,	on	page	89,	for	more	                 short-	and	long-term	disability	insurance	
                                                                                                        for	SSDI	as	soon	as	possible.	The	sooner	you	
information).	Additionally,	there	may	be	a	           may	provide	financial	assistance	while	
                                                                                                        apply,	the	sooner	you	will	possibly	receive	
member	of	your	health	care	team	who	could	            you’re	being	treated	for	lung	cancer.	Some	
                                                                                                        assistance.	You	can	apply	for	benefits	by	
answer	some	questions	about	insurance	                employers	carry	disability	insurance	for	
                                                                                                        calling	the	toll	free	Social	Security	number,	
choices.                                              their	employees,	and	policies	can	also	be	
                                                                                                        1-800-772-1213,	or	online	at		
                                                      purchased	directly	from	private	insurance	
                                                                                                        www.socialsecurity.gov.
                                                      carriers.


82    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
LEGAL iSSUES


It	is	a	good	idea	for	all	adults,	regardless	of	   There	are	two	types	of	advance	directives:	a	      loved	ones	about	the	contents	of	your	living	
their	current	health	status,	to	prepare	for	the	   living	will	and	medical	power	of	attorney.         will	can	make	these	decisions	much	easier	
future	by	having	their	affairs	in	order.	The	                                                         and	reduce	stress	on	your	family.	Be	sure	
                                                   Living will
following	legal	documents	are	tools	to	help	                                                          your	medical	POA	and	health	care	provider	
                                                   A	document	that	details	your	wishes	about	
you	do	that.                                                                                          have	copies	of	the	signed	directives.
                                                   medical	treatment	if	you	can	no	longer	
                                                   express	those	wishes.	Most	states	honor	a	
Will                                               living	will	prepared	in	advance,	but	laws	vary	
                                                   by	state.                                            do noT REsusCiTATE (dnR) oRdER
A	legal	document	that	designates	who	will	
                                                                                                        An order that your doctor writes on your
receive	your	money	and	belongings	and	who	
                                                   Medical power of attorney (POA)                      chart if you determine you do not want
will	be	responsible	for	your	young	children	
                                                   A	document	that	allows	you	to	appoint	a	             “heroic measures” taken in the event
(in	the	absence	of	the	other	parent)	when	you	                                                          of cardiac or respiratory arrest. Your
                                                   trusted	person	to	make	decisions	about	your	
die.	In	many	states,	an	agent	of	the	state	will	                                                        specific desires should be stated in the
                                                   medical	care	if	you	cannot	make	decisions	
make	these	decisions	if	there	is	no	will.                                                               previously described documents. This is a
                                                   yourself.	Also	know	as	a	healthcare	agent.	          medical order which states that if you stop
                                                   In	many	states,	the	person	you	appoint	is	           breathing or your heart stops beating, you
Advance directives                                 authorized	to	speak	for	you	any	time	you	are	        do not want to be hooked up to machines
                                                   unable	to	make	your	own	medical	decisions,	          that will keep your body alive. It is very
A	term	that	refers	to	instructions	about	your	
                                                   not	only	at	the	end	of	life.                         important to think about this issue and
future	medical	care	if	you	become	unable	
                                                                                                        discuss it with your family and doctor
to	speak	for	yourself.	Each	state	regulates	                                                            before you get seriously ill. Your decisions
                                                   Before	designating	a	medical	POA,	think	
advance	directives	differently,	so	you	should	                                                          about resuscitation should be documented
                                                   carefully	about	who	is	most	likely	to	follow	
check	with	your	health	care	provider	about	                                                             in your living will and should be discussed
                                                   your	wishes.	It	is	often	difficult	for	a	parent	     with your medical power of attorney (POA).
what	is	needed	where	you	live.	
                                                   to	make	these	decisions;	people	often	
                                                   choose	a	sibling	or	spouse	instead.	Having	
                                                   conversations	with	your	family	members	and	

                                                                                                  CHAPTER 8 / PRACTiCAl ConCERns                       83
                                                      PRACTiCAL END-OF-LiFE PLANS


“I don’t think it’s difficult to talk about           When	you	are	diagnosed	with	a	life-                Hospice
 end-of-life, but it’s difficult to get people        threatening	illness	such	as	lung	cancer,	it	can	
                                                                                                         Hospice	care	is	a	useful	resource	for	you	
 to listen—it’s not something that                    be	the	first	time	you	and	your	family	have	
                                                                                                         and	your	family	to	explore	when	you	and	
                                                      thought	about	death.	People	often	anticipate	
 people want to talk about. We celebrate                                                                 your	doctor	decide	that	it	might	be	helpful.	
                                                      what	they	might	need	and	want	to	achieve	
 survivors, and we don’t want to talk                                                                    Hospice	care	can	be	provided	in	the	comfort	
                                                      in	the	weeks,	months,	or	years	ahead.	It	
 about when bad things happen. But                                                                       of	your	home,	with	specially	trained	
                                                      is	normal	for	people	with	cancer	to	want	
                                                                                                         nurses	available	by	phone	24	hours	a	day.	
 I’m always very open with my                         to	discuss	the	possibility	of	death.		Family	
                                                                                                         A	hospice	team	is	available	to	meet	your	
 experience because he was. It’s a matter             members	often	have	a	harder	time	with	
                                                                                                         physical	and	emotional	needs,	as	well	as	the	
 of how he lived his life, and that’s kind            these	discussions	and	think	this	means	the	
                                                                                                         emotional	needs	of	your	family.	To	get	more	
 of how I live mine.”                                 person	who	has	cancer	is	giving	up.		This	is	
                                                                                                         information	about	hospice	care,	ask	your	
                                                      not	always	the	case.	These	discussions	can	be	
                           — Meg, Caregiver                                                              insurance	provider	or	doctor.
                                                      important	and	powerful	parts	of	the	coping	
                                                      process.


                                                      When	active	treatment	is	stopped,	it	is	
                                                      normal	to	experience	a	wide	range	of	
                                                      emotions	such	as	anger,	denial,	fear,	sadness,	
                                                      and	even	acceptance.	Open	and	honest	
                                                      communications	with	your	doctor	and	your	
                                                      family	can	help	you	to	maintain	control	over	
                                                      this	time	and	provide	you	the	opportunity	to	
                                                      accomplish	certain	goals,	or	put	closure	to	
                                                      things	that	might	give	you	a	sense	of	peace.




84    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
k E E P i N G A H O P E F U L AT T i T U D E


Your	sense	of	“hope”	can	change	over	time.	        People	affected	by	cancer	sometimes	hear	            “I think the simple pleasures of life are
You	may	hope	for	many	things	in	your	              that	they	need	to	have	a	positive	attitude	in	        just so wonderful...on a summer night,
life.	Perhaps	you	hope	for	recovery	of	your	       order	to	beat	their	cancer.	You	should	not	           we’ll go out for a walk and its just really
physical	and	emotional	health;	for	peace	in	       expect	to	be	positive	all	of	the	time.	Trying	
                                                                                                         nice. It doesn’t have to be a great trip or
your	relationships;	for	good	communication	        to	view	things	from	a	positive	perspective	
                                                                                                         a dinner out. Sometimes, just spending
with	your	doctor;	for	a	way	to	come	to	terms	      as	much	as	possible,	however,	can	improve	
with	lung	cancer	and	its	place	in	your	life.	By	   your	general	well-being.	Finding	productive	
                                                                                                         time together in a very quiet way is
doing	important	things	—	like	taking	steps	to	     ways	to	express	your	feelings—positively	or	          really important.”
improve	your	level	of	physical	activity,	your	     negatively—is	always	helpful.
                                                                                                                                — Marc, Caregiver
diet,	your	relationships,	and	your	emotional	
health	—	you	are	improving	the	quality	
of	your	life.	Never	be	afraid	to	hope;	just	
remember	what	you	hope	for	may	change.




                                                                                                    CHAPTER 8 / PRACTiCAl ConCERns                  85
                                 “Cancer is no simple disease, and effective treatment is not just about
                                  killing rogue cells with radiation and chemotherapy. It’s about
                                  healing the human being.”

                                 — Institute	of	Medicine	(IOM),	2008	Cancer Care for the Whole Patient:
                                     Meeting Psychosocial Health Needs. Nancy	Adler	and	Ann	E.K.	
                                     Page,	eds.	Washington,	D.C.:	The	National	Academies	Press




86   f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
                                                    Chapter nine / reSoUrCeS and gLoSSarY
               “My wife and I were so surprised
               to learn of the many and varied
               types of resources available to
               both the lung cancer patient
               and their caregivers. Everyone
               should take advantage of resources
               available to them.”

                                 — Ken, Caregiver




Resources and Glossary
Chapter nine / reSoUrCeS and gLoSSarY




                                        C h a p t e r 9 / r e S o U r C e S & g L o S S a r Y ......................................................... 87
                                        	   Resources	. .........................................................................................................................87

                                        	   Glossary	............................................................................................................................92
Resources & Glossary
RESOURCES                                         American Lung Association (ALA)                    Lung Cancer Alliance (LCA)
                                                  1-800-LUNG-USA (586-4872)                          1-800-298-2436
American College of Chest Physicians
                                                  www.lungusa.org	                                   www.lungcanceralliance.org
1-800-343-2227
                                                  Provides	free	interactive	decision	support	        Provides	patient	support	and	advocacy	to	
www.chestnet.org
                                                  tools	provides	personalized	treatment	             people	affected	by	lung	cancer.	
Offers	suggestions	for	lung	cancer	specialists	
                                                  options,	reports	tailored	to	each	diagnosis.		
and	second	opinions.	                                                                                The National Cancer Institute (NCI)
                                                  Focus on Lung Cancer                               1-800-4-CANCER
American Cancer Society (ACS)
                                                  1-877-646-LUNG                                     www.cancer.gov
1-800-ACS-2345
                                                  www.lungcancer.org                                 Provides	comprehensive	and	up-to-date	
www.cancer.org
                                                  Call	the	lung	cancer	toll	free	information	line	   information	about	lung	cancer,	treatment	
Provides	local	support,	resources,	and	
                                                  for	lung	cancer	support.	                          options,	and	more.	
information	for	all	cancer	types,	including	
lung	cancer.	                                                                                        Cancer.net
                                                                                                     1-888-651-3038
                                                                                                     www.cancer.net
                                                                                                     Cancer.net	is	an	award-winning	patient	
                                                                                                     information	website	of	the	American	Society	
                                                                                                     of	Clinical	Oncology	(ASCO).	Provides	timely,	
                                                                                                     oncologist-approved	information	to	help	
                                                                                                     patients	and	families	make	informed	health	
                                                                                                     care	decisions.	




                                                                                           CHAPTER 9 / REsouRCEs & glossARy                      87
Clinical trials                                        National Cancer Institute (NCI)                Complementary and alternative
                                                       1-800-4-CANCER                                 medicine
Cancer Support Community
                                                       www.cancer.gov/clinicaltrials
1-888-793-9355                                                                                        National Center for Complementary and
                                                       Provides	comprehensive	information	about	
www.cancersupportcommunity.org/                                                                       Alternative Medicine (NCCAM)
                                                       cancer	clinical	trials.	Information	about	
clinical.trials/vwc.asp                                                                               1-888-644-6226
                                                       clinical	trials	is	available	in	Spanish	or	
In	collaboration	with	Emergingmed.com,	                                                               http://nccam.nih.gov
                                                       English.	
provides	general	information	about	cancer	                                                            Provides	information	about	and	conducts	
trials	and	an	online	search	engine	to	find	a	                                                         research	and	training	on	complementary	and	
                                                       National Library of Medicine, National
clinical	trial	for	your	cancer.	                                                                      alternative	medicine.	
                                                       Institutes of Health
                                                       1-888-346-3656
Lung Cancer Alliance                                                                                  National Cancer Institute’s Office of
                                                       www.clinicaltrials.gov		
Clinical Trial Matching Service                                                                       Cancer Complementary and Alternative
                                                       Provides	a	thorough	and	searchable	listing		
1-800-698-0931                                                                                        Medicine (OCCAM)
                                                       of	federally	sponsored	clinical	trials	and	
www.lungcanceralliance.org/facing/                                                                    1-800-4-CANCER
                                                       general	information.	
trials.html                                                                                           www.cancer.gov
In	collaboration	with	Emergingmed.com	and	                                                            OCCAM’s	goal	is	to	increase	the	amount	of	
other	lung	cancer	organizations,	LCA	offers	                                                          quality	information	and	cancer	research	
a	free,	confidential,	personalized	service	to	                                                        conducted	about	the	use	of	CAM	therapies.	
match	lung	cancer	patients	with	relevant	
clinical	trials	as	well	as	general	information	                                                       American Cancer Society (ACS)
about	clinical	trials.                                                                                1-800-ACS-2345
                                                                                                      www.cancer.org
                                                                                                      The	“ACS	Guide	to	Complementary	and	
                                                                                                      Alternative	Cancer	Methods”	and	the	booklet		
                                                                                                      “Making	Treatment	Decisions:	Complementary	
                                                                                                      and	Alternative	Therapy”	can	be	ordered	on	
88     f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R                                     the	group’s	website	or	by	calling.	
Further information on treatment              Culturally specific information                 Native American Cancer Research
                                                                                              303-838-9359
American Society for Therapeutic              Intercultural Cancer Council
                                                                                              natamcancer.org
Radiology & Oncology                          713-798-4617
                                                                                              A	community-based	American	Indian	
1-800-962-7876                                www.iccnetwork.org
                                                                                              resource	seeking	to	help	reduce	cancer	
www.astro.org                                 Promotes	policies,	programs,	partnerships,	
                                                                                              incidence	and	mortality	in	Native	Americans.	
Answers	radiation	therapy	and	cancer	pain	    and	research	to	support	cultural	competence.
questions.	
                                                                                              The Mautner Project
                                              Asian American Cancer Support Network
                                                                                              1-866-628-8637
Food and Drug Administration                  650-967-2305
                                                                                              www.mautnerproject.org
1-888-463-6332                                www.aacsn.org	
                                                                                              A	support	organization	for	lesbians	with	
www.fda.gov                                   An	organization	aiming	to	provide	an	
                                                                                              cancer	and	their	loved	ones.
Provides	a	list	of	FDA-approved	drugs.	       educational,	supportive,	and	diverse	network	
Also,	some	drugs	approved	by	the	FDA	for	     of	resources	for	Asian	Americans	affected	by	
a	disease	other	than	lung	cancer	may	be	in	   cancer.	
clinical	trials	for	lung	cancer.	


National Cancer Institute
1-800-4-CANCER
www.cancer.gov
Provides	a	wide	variety	of	publications	on	
cancer	and	treatment.




                                                                                      CHAPTER 9 / REsouRCEs & glossARy                    89
Disability and life insurance                          Employment, medical insurance, and               Centers for Medicare and Medicaid
                                                       legal issues                                     Services (CMS)
U.S. Social Security Administration
                                                                                                        1-800-MEDICARE
1-800-772-1213                                         American Cancer Society
                                                                                                        www.cms.hhs.gov	
www.socialsecurity.gov                                 1-800-ACS-2345
                                                                                                        Contact	the	CMS	and	SSA	to	find	out	if	you	
For	the	SSA’s	Disability	Planner:		                    www.cancer.org
                                                                                                        are	eligible	for	government	health	insurance	
www.ssa.gov/dibplan/	                                  ACS	has	the	following	publication:	
                                                                                                        programs.	
                                                       “Americans	with	Disabilities	Act:	Legal	
American Council of Life Insurers                      Protection	for	Cancer	Patients	Against	
                                                                                                        National Coalition for Cancer
202-624-2000                                           Employment	Discrimination.”	
                                                                                                        Survivorship
www.acli.org
                                                                                                        1-888-650-9127
Provides	information	about	brokers	who	                Cancer Legal Resource Center
                                                                                                        www.canceradvocacy.org
specialize	in	high-risk	life	insurance.	               1-866-843-2572
                                                                                                        Information	and	resources	including	
                                                       http://disabilityrightslegalcenter.org/
                                                                                                        publications	on	health	insurance	and	
Equal Employment Opportunity                           about/cancerlegalresource.cfm
                                                                                                        employment	rights	for	survivors.
Commission                                             Provides	free	and	confidential	information	
1-800-669-4000                                         and	resources	on	cancer-related	legal	issues	
                                                                                                        Patient Advocate Foundation (PAF)
www.eeoc.gov                                           to	cancer	survivors,	their	families,	friends,	
                                                                                                        1-800-532-5274
Federal	agency	that	provides	information	              employers,	health	care	professionals,	and	
                                                                                                        www.patientadvocate.org
about	protections	against	discrimination	due	          others	coping	with	cancer.
                                                                                                        Offers	assistance	to	patients	who	need	
to	illness.	
                                                                                                        specific	help	with	insurance,	insurance	
                                                                                                        coverage,	job	retention,	debt	crisis	matters,	
                                                                                                        and	other	practical	matters	affecting	people	
                                                                                                        with	cancer.	PAF	also	offers	a	co-pay	relief	
                                                                                                        program	for	pharmaceutical	products:	www.
                                                                                                        copays.org.	

90     f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Support groups and information                     Lung Cancer Alliance (LCA)                         Recommended reading
about life with cancer                             1-800-298-2436
                                                                                                      Lung Cancer: Myths, Facts, Choices And Hope.
                                                   www.lungcanceralliance.org
American Cancer Society                                                                               Henschke	CI,	McCarthy	P,	with	Wernick	S.	WW	
                                                   Maintains	a	list	of	all	lung	cancer-specific	
1-800-ACS-2345                                                                                        Norton	&	Company,	2002.	
                                                   support	groups	across	the	country,	maintains	
www.cancer.org	
                                                   an	online	support	community,	and	offers	the	       Lung Cancer: Making Sense of Diagnosis,
Provides	listings	of	support	groups	by	
                                                   Phone	Buddy	Program,	peer-to-peer	support	         Treatment and Options. Johnston,	L.	Patient	
location.	
                                                   by	phone	for	people	with	lung	cancer	and	          Centered	Guides.	O’Reilly,	2001.	
                                                   their	caregivers.	                                 100 Questions & Answers About Lung Cancer.
CancerCare
1-800-813-4673                                                                                        Parles	K,	Schiller	JH.	Jones	&	Bartlett,	2002.	
                                                   National Coalition for Cancer
www.cancercare.org
                                                   Survivorship                                       The Human Side of Cancer: Living with Hope,
Offers	toll	free	telephone	and	online	support	
                                                   1-888-650-9127                                     Coping with Uncertainty. Holland	JC,	Lewis	S.	
groups,	excellent	literature,	and	resources	for	
                                                   www.canceradvocacy.org                             Harper	Collins,	2001.	
cancer	patients.	
                                                   Provides	information,	programs,	and	               The Alternative Medicine Handbook: The
                                                   resources	on	cancer	survivorship.	                 Complete Reference Guide to Alternative and
Lance Armstrong Foundation
1-866-673-7205                                                                                        Complementary Therapies.	Cassileth	BR.	WW	
                                                   Cancer Support Community
www.livestrong.org                                                                                    Norton	&	Company,	1999.	
                                                   1-888-793-WELL
Provides	survivor	support	and	education	
                                                   www.cancersupportcommunity.org                     Comprehensive Cancer Care: Integrating
regarding	emotional,	financial,	and	treatment	
                                                   Offers	free	support	groups	at	Cancer	Support	      Alternative, Complementary, and Alternative
issues	as	well	as	clinical	trials	information.	
                                                   Communities	around	the	country	or	online	in	       Therapies. Gordon	JS.	Persus	Publishing,	2001.	
                                                   Cancer	Support	Community	Online;	offers	free	      You	can	find	many	more	suggested		
                                                   educational	programs,	literature,	and	resources.   reading	materials	on:		
                                                                                                      www.cancersupportcommunity.org


                                                                                             CHAPTER 9 / REsouRCEs & glossARy                           91
G L O S S A RY


Ablation —	The	removal	or	destruction	of	a	           Advanced directive —	Instructions	about	       Anticipatory nausea —	Occurs	prior	
body	part	or	tissue	or	its	function.	Ablation	        your	future	medical	care	if	you	become	        to	administration	of	chemotherapy	and	
may	be	performed	by	surgery,	hormones,	               unable	to	speak	for	yourself.                  usually	happens	when	the	person	has	
drugs,	radiofrequency,	heat,	or	other	                                                               experienced	nausea	or	vomiting	in	previous	
methods.                                              Alopecia —	Hair	loss	during	cancer	            chemotherapy	treatment	sessions.	
                                                      treatment	that	is	almost	always	temporary	
Ablation therapies —	Radiofrequency	                  and	grows	back	when	therapy	is	finished.       Antiemetic —	A	drug	that	reduces	or	
Ablation	(RFA)	uses	radio	waves	to	heat	up	                                                          prevents	nausea	and	vomiting.
and	destroy	tumors.	Cryoablation	uses	liquid	         Alternative therapy —	Nontraditional	
nitrogen	or	argon	gas	to	freeze	tumors.               methods	of	diagnosing,	preventing,	or	         Apparently cancer free —	The	tumor	has	
                                                      treating	cancer.                               disappeared	after	treatment.
Acute nausea —	Usually	occurs	within	
24	hours	of	chemotherapy	treatment.                   Anemia —	A	shortage	of	red	blood	cells	that	   Bilobectomy —	Removal	of	two	lobes	of	the	
                                                      can	cause	weakness	and	fatigue.                same	lung.
Adenocarcinoma —	A	subtype	of	non-small	
cell	lung	cancer.                                     Angiogenesis —	The	process	of	developing	      Biopsy —	Surgical	removal	of	a	small	piece	
                                                      new	blood	cells.                               of	tissue	for	evaluation	under	a	microscope.
Adenosquamous carcinoma —	A	subtype	
of	non-small	cell	cancer.                             Antiangiogenesis therapy —	Therapy	to	         Brachytherapy —	Radiation	treatment	
                                                      prevent	development	of	new	blood	vessels	      that	uses	radioactive	pellets	inserted	into	
Adjuvant therapy —	Anti-cancer	therapy	               that	supply	blood	to	the	tumor,	thereby	       a	flexible	tube	placed	inside	the	breathing	
given	after	another	initial	therapy	such	as	          stopping	or	limiting	tumor	growth.             passage	to	directly	treat	lung	cancer.
surgery.




92    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Bronchial basal epithelial cells —	             Bronchus —	Either	of	two	tubes	that	are	the	    Chemobrain —	A	common	term	used	to	
Cells	that	line	the	breathing	passages	and	a	   main	airways	into	the	lungs	that	branch	from	   describe	thinking	and	memory	problems	
common	site	where	cancers	develop.              the	trachea	and	enter	the	lungs.                experienced	after	cancer	treatments.


Bronchogenic carcinoma —	A	general	             Cachexia —	Loss	of	body	weight	and	muscle	      Chemotherapy —	Treatment	with	drugs	to	
name	for	all	types	of	lung	cancer.	             mass,	and	weakness	that	may	occur	in	           stop	the	growth	of	rapidly	dividing	cancer	
                                                patients	with	cancer,	AIDS,	or	other	chronic	   cells.
Bronchioloalveolar carcinoma (BAC) —	           diseases.
A	subtype	of	non-small	cell	lung	cancer	that	                                                   Chemotherapy cycle —	The	term	used	to	
can	sometimes	grow	slowly.                      Cancer —	An	abnormal	cell	that	cannot	be	       describe	the	process	in	which	chemotherapy	
                                                controlled	by	the	body’s	natural	defenses.		    is	given,	followed	by	a	period	of	rest	in	which	
Bronchodilators —	Typically	used	to	treat	      Cancerous	cells	can	grow	and	eventually	        the	body	is	allowed	to	recover.
asthma,	can	also	be	used	in	pulmonary	          form	tumors.
rehabilitation	programs	and	to	help	improve	                                                    Chemotherapy regimen —	Combinations	
breathing	before	surgery.	        	             Carcinoma in situ —	A	tumor	that	is	still	      of	anti-cancer	drugs	given	at	a	certain	dose	
                                                confined	to	the	innermost	layer	of	the	lung	    in	a	specific	sequence	according	to	a	strict	
Bronchorrhea —	A	cough	producing	large	         where	it	first	started.                         schedule.		
amounts	of	phlegm.	
                                                Catheter (intravenous) —	A	device	that	is	      Clinical trial —	A	research	study	in	which	
Bronchoscopy —	Viewing	and	biopsy	of	           temporarily	or	permanently	put	into	a	vein	     a	new	treatment	is	given	to	patients	to	
the	bronchial	tubes	with	a	type	of	endoscope	   that	makes	it	easier	to	give	medications.	      determine	whether	it	is	safe,	more	effective,	
called	a	bronchoscope.                                                                          or	less	toxic	than	a	current	standard	of	care.




                                                                                        CHAPTER 9 / REsouRCEs & glossARy                        93
Complete Response (CR)/No Evidence of                 Distal —	The	portion	of	the	lung	that	is	         Epidermal growth factor receptor (EGFR)
Disease (NED) —	The	term	used	when	all	               farthest	from	the	mouth.                          inhibitors —	Naturally	occurring	proteins	on	
signs	of	cancer	have	disappeared.                                                                       the	surface	of	cells	that	appear	to	aid	in	the	
                                                      Dose intensity —	A	term	used	to	describe	         growth	of	cancer	cells	and	cause	lung	tumors	
Contralateral —	Opposite	side.                        giving	the	highest	possible	doses	of	drug	over	   to	grow.
                                                      a	specific	period	of	time	with	acceptable	side	
Computed axial tomography scan                        effects.	This	approach	has	been	shown	to	be	      Esophagitis —	A	condition	caused	by	
(CT/CAT scan) —	Imaging	test	that	provides	           very	effective	in	curing	some	cancers.            radiation	treatment	that	results	in	the	
a	series	of	detailed	pictures	of	the	inside	of	                                                         symptoms	of	painful	and	difficult	swallowing.		
the	body	using	an	x-ray	machine	linked	to	a	          Do not resuscitate (DNR) order —	An	              Often	described	as	a	feeling	of	food	getting	
computer.                                             order	that	your	doctor	writes	on	your	chart	      stuck	in	your	throat.
                                                      if	you	determine	you	do	not	want	heroic	
Diaphragm —	The	thin	muscle	below	the	                measures	taken	in	the	event	of	a	cardiac	or	      Etiology —	The	study	of	the	cause	of	disease.		
lungs	and	heart	that	separates	the	abdomen	           respiratory	event.                                In	cancer	there	are	often	multiple	causes.
from	the	chest	that	is	integral	to	the	push-pull	
mechanism	of	breathing.                               Dysphagia —	Difficulty	swallowing.                Fatigue —	A	decreased	capacity	for	activity	
                                                                                                        that	is	often	accompanied	by	feelings	of	
Delayed nausea —	Generally	begins	24	                 Dyspnea —	Difficult,	painful	breathing	or	        weariness,	sleepiness,	or	irritability.
hours	after	administration	of	chemotherapy.           shortness	of	breath.
                                                                                                        First-line therapy —	A	medical	therapy	
Disease progression —	Term	used	if	the	                                                                 recommended	for	the	initial	treatment.
disease	worsens	despite	treatment.	




94    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Genes —	The	basic	building	blocks	of	             Imagery —	Also	known	as	guided	imagery,	           Large Cell Carcinoma —	Destruction	of	the	
heredity	that	are	present	in	all	cells.           a	simple	yet	effective	tool	for	transforming	      myelin	sheaths	that	cover	nerve	fibers.
                                                  emotional	states	of	mind.		The	feelings	you	
Genetic markers —	A	gene	or	DNA	                  evoke	are	governed	by	the	thoughts	and	            Living will —	A	document	that	details	your	
sequence	has	a	known	location	on	a	               images	on	which	you	focus.                         wishes	about	medical	treatment	if	a	time	
chromosome	and	is	associated	with	a	                                                                 should	come	when	you	can	no	longer	express	
particular	gene	or	trait.		They	are	associated	   Immune system —	The	body’s	important	              those	wishes.
with	certain	diseases	and	cancers.                defense	mechanisms	against	infection	and	
                                                  fighting	disease.                                  Lobe —	One	major	section	of	one	lung.		The	
Grade —	A	method	of	classifying	a	tumor	                                                             right	lung	has	three	lobes,	but	the	left	has	just	
on	the	basis	of	how	aggressively	it	is	           Interstitial lung disease —	A	group	of	            two	to	make	room	for	the	heart	and	other	
growing.	                                         disorders,	most	of	which	cause	progressive	        organs.
                                                  scarring	of	lung	tissue,	that	create	difficulty	
Hemoptysis —	Coughing	blood.                      breathing	and	getting	enough	oxygen	into	the	      Lobectomy —	Removal	of	one	lobe	of	either	
                                                  bloodstream.                                       lung.
Histology —	The	study	of	tissues	to	
determine	their	specific	characteristics,	        Ipsilateral —	On	the	same	side.                    Lymph —	The	watery	fluid	in	the	lymph	
which	may	lead	to	identifying	a	specific	type	                                                       system	that	contains	white	blood	cells	
of	lung	cancer.                                   Laparoscopy —	Passing	a	tube	through	the	          (lymphocytes).	
                                                  abdominal	wall	to	obtain	a	small	sample	of	
                                                  tissue	for	examination	under	a	microscope.




                                                                                             CHAPTER 9 / REsouRCEs & glossARy                       95
Lymph nodes —	Small	bean-shaped	                      Metastasis —	The	spread	of	cancer	to	other	     Multimodality/combined modality
glands	located	along	the	small	vessels	of	the	        tissues.                                        therapy —	Therapy	that	combines	more	than	
lymphatic	system.	There	are	thousands	of	                                                             one	method	of	treatment.
lymph	nodes	located	throughout	the	body,	             Mediastinoscopy —	A	surgical	procedure	
with	clusters	of	them	in	the	neck,	under	             to	examine	the	inside	of	the	upper	chest	       Myelosuppression —	A	reduction	in	the	
the	arms,	and	in	the	chest	between	the	               between	and	in	front	of	the	lungs.              bone	marrow’s	ability	to	make	red	blood	
lungs,	abdomen,	and	groin.	Lymph	nodes	                                                               cells,	white	blood	cells,	and	platelets.
filter	lymph	fluid,	trapping	and	destroying	          Mediastinum —	Sac	that	contains	all	chest	
potentially	harmful	bacteria	and	viruses.	            organs	except	the	lungs.                        Non-small cell lung cancer (NSCLC) —	
Lymph	nodes	may	be	enlarged	as	a	result	of	                                                           Non-small	cell	lung	cancer.
benign	as	well	as	malignant	causes.                   Medical power of attorney —	A	document	
                                                      that	allows	you	to	appoint	a	trusted	person	    Neoadjuvant therapy —	Chemotherapy	or	
Malignant —	A	malignant	tumor	is	a	                   to	make	decisions	about	your	medical	care	if	   radiotherapy	used	before	surgery	to	shrink		
cancerous	tumor.                                      you	cannot	make	decisions	yourself.             a	tumor.


Mediastinal pleura —	The	lining	of	the	               Monoclonal antibodies —	Substances	             Oxygen therapy —	Therapy	used	to	relieve	
inner	chest	between	the	lungs.                        produced	in	a	laboratory	and	tailored	to	       breathing	problems.
                                                      attach	themselves	to	a	specific	protein	
Mesothelioma —	A	type	of	cancer	that	                 (antigen),	attacking	and	destroying	only	       Palliative therapy —	A	therapy	used	to	
grows	on	the	outer	surface	of	the	lung	that	is	       tumor	cells.                                    relieve	pain	and	other	symptoms	without	the	
often	mistaken	for	lung	cancer	and	usually	                                                           intent	to	cure	the	disease.
linked	to	inhalation	of	fibers	like	asbestos.         MRI scan —	A	scan	that	uses	magnets	and	
                                                      radio	frequency	waves	to	produce	images	of	
                                                      the	inside	of	the	body.




96    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Partial remission —	The	term	used	when	            Photodynamic therapy (PDT) —	An	                   Primary cancer —	The	place	in	the	body	
a	cancer	has	shrunk	in	size	but	has	not	           intravenous	injection	of	a	tumor	specific	         where	the	cancer	started.	If	a	primary	lung	
totally	disappeared.		The	cancer	can	still	        photosensitizing	agent	(Photofrin)	followed	       cancer	spreads	to	other	parts	of	the	body,	it	
be	detected,	and	other	treatments	may	be	          by	a	laser	light	exposure	that	results	in	a	       has	metastasized.	For	example,	a	brain	tumor	
recommended.	                                      photochemical	reaction	to	destroy	the	tumor	       from	lung	cancer	is	still	lung	cancer	and	not	
                                                   cells.                                             brain	cancer.	It	is	a	metastasis	of	lung	cancer.	
Peripheral neuropathy —	Damage	to	the	
nervous	system.	Some	chemotherapy		                Pleural effusion —	An	abnormal	collection	         Primary therapy —	The	first	therapy	given	
drugs	can	cause	this	condition.	Symptoms	          of	fluid	between	the	thin	layers	of	tissue	        after	a	diagnosis	of	cancer.
include	weakness	or	tingling	in	the	hands	         (pleura)	lining	the	lung	and	the	wall	of	the	
and/or	feet.		                                     chest	cavity.                                      Prognosis —	The	likely	outcome	of	a	disease,	
                                                                                                      including	the	chance	of	recovery.
PET scan (positron emission                        Pleurodesis —	A	medical	procedure	
tomography) —	A	scan	used	to	identify	             that	uses	chemicals	or	drugs	to	cause	             Progressive disease —	The	tumor	is	
areas	in	the	body	that	are	affected	by	            inflammation	and	adhesion	between	the	             growing	in	spite	of	the	treatment	you	
cancer.		This	test	measures	metabolic	             layers	of	the	pleura.	This	prevents	the	buildup	   received.	When	this	happens,	that	specific	
activity	in	different	parts	of	the	body	using	a	   of	fluid	in	the	pleural	cavity.	It	is	used	as	a	   therapy	is	usually	stopped	or	modified	in	
radioisotope.			                                   treatment	for	severe	pleural	effusion.             some	way.


PFT (pulmonary function test) —	                   Pleura — The	sac	that	contains	the	lungs.          Psychotherapy —	Treatment	of	mental,	
Determines	how	well	the	lungs	are	                                                                    emotional,	personality,	and	behavioral	
functioning.                                       Pneumonectomy —	Surgery	to	remove	one	             issues	and	disorders	using	methods	such	as	
                                                   lung.                                              discussion,	listening,	and	counseling.	Also	
                                                                                                      called	talk	therapy.




                                                                                               CHAPTER 9 / REsouRCEs & glossARy                      97
Pulmonary rehabilitation —	Education	                 Radiofrequency/laser therapy —	The	use	          Small cell lung cancer (SCLC) —	Small	cell	
about	behavior	and	lifestyle	changes	to	help	         of	thermal	energy	to	destroy	the	cancer	cells.   lung	cancer.	It	is	categorized	as	either	limited	
patients	with	chronic	lung	disease	decrease	                                                           stage	or	extensive	stage.
breathing	problems,	return	to	daily	activities,	      Refractory disease —	A	cancer	that	is	
and	improve	quality	of	life.	Education	               resistant	to	treatment.                          Sputum —	Mucus	brought	from	the	airway	
may	include	instruction	about	breathing	                                                               usually	by	coughing.
exercises,	nutrition,	use	of	medicines,	and	          Regimen —	A	specific	combination	of	
ways	for	the	patient	to	reduce	stress	and	save	       drugs,	their	doses,	and	their	schedules	of	      Sputum cytology —	A	test	that	can	find	
energy.                                               administration.                                  cancer	cells	long	before	a	tumor	is	evident	on	
                                                                                                       other	tests,	but	it	may	not	detect	cancers	that	
Radiation therapy —	The	use	of	radiation	             Relapse —	The	return	of	cancer	after	it	has	     are	deeper	in	the	lungs	and	cannot	determine	
beams	(x-rays)	to	treat	cancer.		High	doses	          been	treated	and	the	patient	has	been	in	        a	tumor’s	size	or	location.	
of	high-energy	radiation	beams,	carefully	            remission.
focused	on	a	tumor,	will	kill	cancer	cells.                                                            Squamous cell carcinoma —	A	subtype	of	
                                                      Remission —	The	absence	of	disease.	             non-small	cell	lung	cancer.
Radiation fibrosis —	When	radiation	                  A	patient	is	in	remission	when	the	lung	
treatment	triggers	the	immune	system	to	              cancer	has	been	treated	and	tumors	have	         Stable disease —	The	disease	does	not	get	
form	fibrous	scar	tissue	inside	the	lung.		           diminished	by	at	least	50%	(partial)	or	have	    better	or	worse	following	therapy.
It	may	be	temporary,	or	it	could	develop	             disappeared	(complete).	Remission	does	not	
months	or	even	years	after	radiotherapy	              necessarily	mean	cure.                           Stage (lung cancer) —	The	extent	of	cancer	

ends.		Symptoms	can	include	dry	mouth,	                                                                in	the	body,	including	whether	the	disease	

sore	throat,	or	problems	with	swallowing	or	          Resection —	Surgery	that	removes	all	or	part	    has	spread	from	the	original	site	to	other	

breathing.                                            of	an	organ.                                     body	sites.




98    f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
Standard therapy —	A	current	primary	             Thoracoscopy —	A	limited	surgical	                 Vaccine —	Cancer	vaccines	combine	
therapy	that	has	shown	to	be	safe	and	            procedure,	performed	under	general	                malignant	cancer	cells	with	a	patient’s	own	
effective	over	time.                              anesthesia.	An	instrument	called	a	                natural	defenses	to	fight	the	disease.	These	
                                                  thoracoscope	is	inserted	through	a	                vaccines	are	custom-made,	using	a	sample	
Stereotactic radio-surgery —	Uses	high-           small	incision	in	the	chest	wall	to	allow	         of	the	tumor	that	is	obtained	from	each	
energy	x-rays	to	destroy	cancer.                  examination	of	the	lining	of	the	chest	wall	       patient’s	lymph	nodes.
                                                  and	the	surface	of	the	lungs	for	tumors.
Systemic symptoms —	Symptoms	that	                                                                   Wedge/Segmental resection —	Surgery	to	
affect	the	entire	body.	Examples	of	these	        TNM staging system —	Three	measures	               remove	a	wedge	of	tissue	from	one	lobe	of	
include	fever,	night	sweats,	and	weight	loss.     of	tumor	spread,	tumor	size,	lymph	nodes	          one	lung	that	is	usually	done	only	for	early-
                                                  affected,	and	metastatic	(distant)	sites	          stage	disease	or	isolated	tumors.
Targeted therapies —	Drugs	that	target	           involved	that	are	used	to	stage	lung	cancer	
specific	cellular	pathways	that	enables	cancer	   and	many	other	cancers	at	Levels	I	through	IV.     X-ray —	High-energy	radiation	that	is	used	
cells	to	grow.                                                                                       in	low	doses	to	provide	images	of	the	inside	
                                                  Trachea —	The	windpipe.                            of	the	body	and	in	high	doses	to	treat	cancer.
Thoracentesis —	Inserting	a	narrow	needle	
with	a	larger	reservoir	through	the	chest	wall	   Tumor —	An	abnormal	mass	or	swelling	
for	one-time	drainage	via	suction	aspiration.     of	tissue.	Tumors	may	occur	anywhere	in	
                                                  the	body.	It	may	be	benign	(harmless)	or	
Thoracic pathologist —	A	specialist	in	           malignant	(cancerous).
pathology	of	chest	illnesses.	
                                                  Video-Assisted Thoracic Surgery
                                                  (VATS) —	This	technique	uses	a	camera	to	
                                                  guide	surgical	tools	into	the	lungs	and	is	less	
                                                  invasive	than	traditional	surgery.



                                                                                              CHAPTER 9 / REsouRCEs & glossARy                       99
100   f R A n k ly s P E A k i n g A b o u T l u n g C A n C E R
cancer support community and lung cancer alliance     cancer support community’s
would like to recognize and thank all of those who    F r a n k ly s p e a k i n g a b o u t c a n c e r s e r i e s
make Frankly Speaking About Cancer: Lung Cancer
a success.
                                                      Cancer Support Community’s Frankly Speaking About Cancer: Lung Cancer
                                                      program is part of a national education program that provides support,
FiFth edition
                                                      education and hope to people affected by cancer and their loved ones.
contributors                                          The programs consist of educational booklets, clinically facilitated workshops
lisa porat, msW, ILP Solutions                        and online content at www.cancersupportcommunity.org.
sean hebbel, msW, The Wellness Community – Delaware
                                                      Frankly Speaking About Cancer booklets feature information about treatment
medical revieW                                        options, how to manage side effects, the social and emotional challenges of
nasser h. hanna, md                                   the diagnosis and survivorship issues.
Division of Hematology/Oncology School of Medicine
Indiana University
                                                      All publications are FREE and are available ONLINE. Copies of this booklet
                                                      are available by request.
linda miller, rn, msn, ocn
Oncology Clinical Educator
Georgetown University                                 Frankly Speaking About Cancer workshops are dedicated to empowering
                                                      patients, caregivers and loved ones to gain knowledge as it relates to
                                                      each person’s unique situation with cancer. Our unique format offers
graphic design & photography                          participants an opportunity to connect with a medical professional outside
Photography compliments of:                           of an oncologist’s office in a comfortable and relaxed environment.
thomas van veen of documentary associates
Graphic Design:
                                                      For more information about this program, the Frankly Speaking About Cancer
haslinger design
                                                      series or Cancer Support Community, please visit our website or call us toll-free
                                                      at 888.793.9355.
                             W W W . c a n c e r s u p p o r t c o m m u n i t y. o r g   888.793.9355




                                            Cancer Support Community and our partners provide
                                            this information as a service. This publication is not
                                            intended to take the place of medical care or the advice
                                            of your doctor. We strongly suggest consulting your
                                            doctor or another health care professional to answer
                                            questions and learn more.

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          t h i s p r o g r a m W a s m a d e p o s s i b l e W i t h a c h a r i ta b l e c o n t r i b u t i o n F r o m




People with cancer who actively participate in thei
care along with their health care team will improve
quality of their lives and may enhance the possibili
recovery. People with cancer who actively participa
their care along with their health care team will im
the quality of their lives and may enhance the poss

								
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