“A Patient’s Perspective” by: Michele Horwitz
Let me begin by saying that two things I don’t like very much are public speaking and colonoscopies. While I have conquered my
fear of colonoscopies, I am still a little nervous when it comes to speaking……………
Here goes: I was diagnosed in August 2006 with Colon Cancer at the age of 41. Shocked would be an understatement! While I
had always had “irritable bowel syndrome”, never in a million years would I think I would think I would develop Colon Cancer
and never in a billion years would I think that it would become metastatic (spreading to distant organs). I have been on 3
chemotherapy treatments and will shortly embark on my 4th, had 5 surgeries and participated in a clinical trial. I have learned a
lot about this disease and truly hope that I can share what I have discovered with you today.
Colon Cancer is an equal opportunity offender. Over 150,000 Americans will be diagnosed this year. “THEY” say that 95% of
the cases are in people over 50. I don’t believe that, as in the last 4 years I have met too many people under 50 to represent
only 5% - but that is my opinion. It is also my opinion that you should not have to wait until 50 to have a colonoscopy. When you
exhibit any of the warning signs head straight to the Doctor and demand one.
Some people have inherited Colon Cancer. In FAP and Lynch syndrome, there is a gene mutation that puts you at greater risk for
colon cancer. There are blood tests that can identify such mutations. People need to be aware of their family history.
To the best of my knowledge, there is no history of colon cancer in my family. I broke the mold! My lovely nieces will now begin
to start having colonoscopies at the age of 31 (10 years prior to my initial diagnosis).
There are 4 stages of Colon Cancer - 0 through 4. Stage 0 is cancer at its earliest stage and the most treatable. Stage 1 has grown
to the submucosa. In stage 2, it has grown to the outermost layers of the colon but has not gone through them. Stage 3 means
it has broken through the wall and has attacked your lymph nodes. Stage 4 means that it has traveled to distant organs.
I was diagnosed with Stage 3 Colon Cancer. I was so naïve about it that when the doctor told me that 2 out of 5 lymph nodes had
been affected; I thought that was a good thing – less than 50%. It wasn’t until I got home and looked it up on the internet to
realize the severity of it.
The standard protocol for treating for Stage 3 Colon Cancer is to have surgery and then do adjuvant chemotherapy for 6 months
– to mop up anything that may have been left behind. For the most part, there are two regimens that are being used – Folfox
and Folfiri. They act in a similar manner and both have pro’s and con’s.
I have been on both and was able to manage the side effects fairly well. Side effects include peripheral neuropathy, hair loss,
bowel issues and extreme fatigue. Some people will not be able to tolerate the side effects and at that point, the oncologist will
have to work with the patient on finding the right dosage.
In addition to the standard regimens, we now have targeted treatments as well. There are blocking agents that are designed to
bind to a receptor on a colon cancer cell and prevent the cells from forming a tumor. While, this is a huge breakthrough, these
treatments do not work on everyone. It is very important to know if these drugs will affect you and there is a test for that. The
test is called K RAS and the K RAS gene can be mutant (being it doesn’t work) or wild type (which means it may work on you)
Not all patients know that and not all oncologists will use it. My first oncologist did not test me for it. The side effects of these
drugs are difficult - severe acne all over your body and problems with your fingernails, toenails and urticaria. My current
oncologist did test me for it and while the cancer has returned, I am KRAS wild type and it can be used again. Using an expensive
drug that will not work is a waste of money and time.
Another drug for advanced colon cancer is a drug that starves the tumor. It stops the stimulation of growth of new blood vessels
in tumors. I have been on this one too!
Every day there are discoveries and we hear so much about drugs that are coming down the pike and if we (the colon cancer
patients) can hold on a little longer, we will be here to witness it. I truly hope that I am one of them.
While on chemotherapy and having targeted surgery (ovary removal, liver resection, lung surgery and a colectomy) has helped
me, it has not eradicated my cancer. It continues to rear its ugly little head every time I go off of chemotherapy. I have had to
fight for some of my surgeries and will continue to do so because while my side effects have allowed me to lead a somewhat
productive life, it’s still a fight and a struggle to accept that until there is a “cure” I will be on some form of chemotherapy for the
rest of my life. The drugs that are helping you live are also killing plenty of healthy cells too.
My oncologist is very aggressive and a leader in clinical trials. There are 4 phases to a trial. Phase 1 is limited to a small number
of patients and they review the safety of dosage. Phase 2 includes more patients and the effectiveness of the agent. Phase 3
compares the new agent vs. standard therapy. Phase 4 trials are the next step – monitoring long term safety and effectiveness.
I use an NCI designated center and they are known for being leaders in research. When my doctor approached me about
participating in a phase 2 study, I had mixed emotions. Knowing that I would be “hooked” up to something for 14 days in a row
was not appealing. I was attached via a port to the medication that had to be at a certain temperature and I had to change ice
packs every 8 hours.
Not a whole lot was known on the side effects. BUT, I knew that since conventional chemotherapy does work for me, I had a
fall back plan. I did the trial, hated every minute of it and it didn’t work for me BUT I would probably do it again. Nothing
ventured is nothing gained. There needs to be more trials and more money funded for these trials.
Yesterday I took a PET scan and tomorrow I will know the results. It’s scary and it’s daunting but it has become a part of my life.
My unwelcome friend, the houseguest who overstayed their welcome.
This journey has been a strange one at best, but along the way, I have met some amazing people, people who I would never
have met (either virtually or in person) because of this disease. In that way, I consider myself very lucky. There is a warm and
loving colon cancer community out there.
I urge you all to take really good care of yourselves. Know the facts, and if you have any unusual symptoms or have any family
history please take action. Colon Cancer is preventable, treatable and beatable.
Thanks for letting me participate in this event.