Being an Advocate with Your Oncologist

Several people who commented on FB about my most recent Cancer Couple post mentioned being an advocate for yourself with your doctors.  I think this is very important, and part of my perspective comes from my father’s treatment for melanoma in the 1970’s at M D Anderson.

His original melanoma and associated lymph nodes were removed from his back in Corpus Christi, but when the melanoma returned a few months later in a lymph node under his arm, he decided to go to M D Anderson for treatment.  After surgery they threw a variety of treatments at him, probably all that were being tested at the time.  They thought his cellular immune system was responding weakly, so he was treated with BCG (Bacillus Calmette-Guerin).  This required my mother to scratch the outline of a three-by-three matrix of boxes on his skin and then rub the bacillus into the scratches.  When his cellular immune system was strong, the scratches would demonstrate a response by becoming inflamed.  By the end of his treatment, he had matrices all over his body like pro football players have tattoos today.  They tried another immune treatment that I’m not clear about.  They may have grown his tumor cells and his killer t-cells in the lab, mixed them up, separated the t-cells and injected them back into his bloodstream hoping that they were fortified and would be active against any residual cells.  Finally they used a nasty chemotherapy agent called DTIC which put him into a state of extreme nausea and fatigue for several days.

After a number of treatments with DTIC and BCG, my father told me he was under tremendous stress because all he could think about between DTIC infusions was his dread of the next infusion.  As a graduate student at UT, I had access to the Texas Medical Society library in Austin and read all I could find on melanoma.  I was also reading about research on how stress depresses the cellular immune response in some people.  After my father told me about his pervasive stress from the DTIC, I wrote to his oncologist.  I told him that my father would never tell him about the stress associated with the DTIC and asked whether the DTIC might be reducing the effectiveness of other treatments.  Perhaps it had done all it could and should be terminated.  He wrote a nice letter back saying that if my dad had asked that the treatment be stopped, he would have done it, but he couldn’t do so on my request.  At the next DTIC infusion my father again did not tell his doctor about how hard the chemo had become, and he passed out from the stress during the infusion.  The doctor stopped the DTIC.  A few days later when my mother gave him his next BCG treatment, he had the strongest reaction he had ever had.  I believe he even had fever that time.  His reaction seemed to me to demonstrate the impact of stress on some people’s immune system, and the importance of being frank with your doctor about how the treatment is going.

My advice to new cancer patients is to learn all they can about their disease.  Your treatments may not be routine and well understood but derived from thinking at the edge of scientific knowledge.  If you have any concerns about how your treatment is going, tell your doctor—better to ask about your concerns that to carry the stress of wondering in silence.  Remember, however, to go to established, respected sources such as MD Anderson, the Mayo Clinic, the National Cancer Institute, etc.  There’s a lot of whacko information out there on Dr. Google that you should be leery of.  Then discuss whatever questions you have with your oncologist.  I’ve been very fortunate to have doctors and surgeons who admit the limits of scientific knowledge and acknowledge that the optimum treatments have not been discovered.  Progress in cancer treatment has been made and is being made, like Gleevec, Jana’s miracle drug, but there is much to be learned—many questions yet to be answered—so don’t be shy about asking questions or expressing your needs. 

In case you are wondering, my father beat melanoma which did not happen often at that time.  But ironically he beat cancer only to die of Alzheimer’s some years later.