A few weeks ago I posted a message on the Association of Cancer Online Resources (ACOR) listserv for carcinoids asking about debulking surgery and other invasive procedures used to remove tumors. This post got a lot of responses, both on and off list. I am in a situation where my first oncologist and carcinoid specialist did not think a big surgery was appropriate in my case. I am no longer seeing him – see my previous post and have moved on to a new oncologist and carcinoid specialist who treats more aggressively. Although he has not told me specifically that I should have this large surgery, primarily because I have not been able to get an appointment to see him (see my previous post), I do think he will be recommending this option.
From the beginning of this cancer journey, I have been finding that treatment options are quite diverse and depending on the Dr., they will look at your labs, pathology and scans and come up with widely different treatment plans.
Part of how I (and I'd think most patients) feel about treatment is due to our prior experiences and general personality and genetic disposition. I have always been what I would call a medical minimalist and doubter, meaning that I do not go seeking medical attention very often and I tend to avoid drugs or use them quite selectively. My primary care and on-gyn are also minimalists in their thoughts about treatment – i.e., it took my ob-gyn and me about 12 years from the time I started having medical issues with my uterine fibroids to making the decision to have my uterus removed by abdominal hysterectomy. I was fine with this approach whereas another Dr. might have pushed the surgery much sooner.
A few months ago, I read an excerpt from a book called Your Medical Mind: How to Decide What is Right for You by Dr. Pamela Hartzband and Dr. Jerome Groopman. The terms miminalist and doubter as opposed to maximalist and believer come from their book (I have not read the book). I thought this particular passage was helpful:
“For patients and experts alike, there is a subjective core to every medical decision. The truth is that, despite many advances, much of medicine still exists in a gray zone where there is not one right answer. No one can say with certainty who will benefit by taking a certain drug and who will not. Nor can we say with certainty what impact a medical condition will have on someone’s life or how they might experience a treatment’s side effects. The path to maintaining or regaining health is not the same for everyone; our preferences really do matter.”
I took some liberties with this thinking and put the chart below together to think about how to classify medical preferences. It’s a bit like a Myers-Briggs for patient/doctor classification.
Treatment may be worse than the disease
Want to do everything possible
Less is more
Having cancer is altogether different from anything I’ve ever had before in that this is a chronic disease, not a one time issue that can be treated and then forgotten about. This is my first time being so deeply involved in the medical field and I have been quite disconcerted with what I have found so far.
Many Drs. get paid by pharmaceutical companies to prescribe drugs, whether the patient needs them or not. Many Drs. publish papers/research because they need to get tenure or a promotion and the research findings are not true. These findings get a lot of publicity via media but the follow-up which is that the research is not true is not covered by the same media. Most research is funded by pharmaceutical companies so Drs. are paid not to find cures or treatments that don’t involve drugs or their research funding will dry up.
Part of my cynicism comes from the fact that I have been working in the financial services industry – Wall Street buy side – for almost 31 years. There’s nothing that will bring out the cynic in a person like working in a field with lots of conflicts of interest. Having experienced cancer for nearly two years now, I’m beginning to think that the medical oncology field may be worse than Wall Street.