Patient Information and Self-Advocacy

Patient information and self-advocacy can be a key to success during treatments.

About a year and half after the birth of my second child, I started noticing some blood in my stool. I was otherwise super healthy, I had recently switched to veganism and become an avid exerciser, and in result (or so I thought) lost all the baby weight and felt generally better than at any other point of time in my entire life. But the blood on the toilet paper was something to be concerned about, and so I went to a doctor to have it checked. My doctor thought it would be hemorrhoids, nothing unusual after giving birth at the age of 43. Nonetheless, she thought I should have a colonoscopy.

The problem was that at 45,  I was still five years short of the prescribed screening age for colorectal cancer. My insurance at that time would not pay for the screening. On top of the cost for the actual procedure I would have to pay additional thousand bucks for anesthesia. Because this was totally out my reach financially, I decided upon consultation with the doctor, that we should treat the hemorrhoids and see how it goes. And so, I waited over a year, until I was able to change my insurer and finally could get the colonoscopy paid for. I was 46.

Waking up from the procedure, I knew something wasn’t right. The nurse gazed at me with panic in her eyes and rushed over to bring the doctor. The news was bad: a 9-10-centimeter-long mass in my lower rectum, almost blocking the canal. How did the proctologist miss it when examining me is beyond me.

The whirlwind of activity ensued – doctor visits and second opinions, radiation sessions, MRIs and Ct-Scans, surgery to remove the tumor, genetic screening, first set of chemotherapy, the whole nine yards. The silver lining was that there were no detectable metastases. Even though big and invading the rectal wall, the tumor remained locally contained.

Throughout all this I was a – probably typical – passive patient. I knew virtually nothing about the disease and the treatments, I relied solely on my doctors and their pronouncements, being frightened that if I didn’t, my life would be on the line, and so would my legacy (my kids were 12 and 3 at the time). Of course, I attempted to educate myself, but resorting to Dr. Google was even worse at times. The statistics were frightening, the suggestions from people about what to do and what not to do were based on anecdotes rather than science, and as such utterly confusing and leaving me with even more questions. What should I do? Go with mainstream medicine or refuse all conventional treatments? Is chemo really worse that the cancer itself? How should I optimize whatever else I am doing (food, physical activity, stress levels) in order to improve my chances of survival? I am a researcher by profession and so I wanted to understand as much as I could about my disease and maybe then be able to take my health into my own hands, however slightly.

This is when I discovered a community of cancer patients and survivors locally at a near-by location. I was able to meet other patients and therapists there, and I could partake in the cancer center’s offerings of complementary modalities such as reiki, yoga, guided imagery, chi-gong and the like. Talking with fellow patients in support groups, I realized that I couldn’t just collapse and let everything just happen to me. I had to develop a fighter spirit and do everything in my power to beat the disease for myself and my young kids. I changed my diet, I got back to exercising, and I added complementary medicine: supplements, meditation, and acupuncture.

When my colorectal cancer returned in the lung and I became metastatic, I knew it was very, very serious. But somehow this second diagnosis was less traumatic than the first one. Possibly it was because I knew more than I did before. I also had a thriving group of supporters, both in my local cancer center, and online, in a Facebook group specifically for CRC patients and survivors. It was from these amazing communities that I learned that even though the odds were rough, I could possibly beat it, I could achieve remission, and maybe even be cured at some point.

Little did I know that the biggest stumbling block to recovery would be my own doctor at that time. Since I was on chemo, I was seeing my oncologist every two weeks. Every single time I visited him, I had to be treated with anti-anxiety drugs so that my nurses could even administered my chemo treatment. The doctor was very knowledgeable, up-to-speed on new treatments, but he had zero bed-side manner. He would throw the scariest statistics at me, basically reminding me every time that my chances at survival were minuscule (about 10%), and I would of course start crying and shaking uncontrollably. After several appointments with him I realized that if I wanted a chance to win the battle, I had to part ways with that particular doctor. If I didn’t, the stress, the anxiety, and the resulting depression alone would be adding to the odds stacked against me.

Because I was treated in an HMO setting, it wasn’t easy to change the oncologist, but I persisted and never looked back. My new doctor is awesome, and I have been NED for almost four years now. I’m not advocating being blind to statistics, they are what they are. But focusing on the negative never helped anyone. Choose your medical team wisely and listen to your body, not to stats. You are not statistics! You are You, and no one can predict the outcome of Your personal struggle. In my opinion, self-advocacy and staying informed are key to dealing with cancer. The disease can (temporarily) take away our body parts, our vitality, our hair, and our strength, but it cannot take away the will to know and the desire to fight.

Check out more posts by Joanna K. Stimmel on her blog at oko-logic.com