I’ve been navigating the medical maze long enough to know that if I don’t do it, no one is going to do it for me. I hear myths about patient advocates who are rumored to exist at major medical facilities, but I’ve yet to come across one on my cancer journey. Like many patients, I sometimes long for a magisterial physician who would simply dictate my care and spare me endless hours of googling through mountains of online information. The choices I face in my care are often daunting. I could use a good doctor in the family.
The unsettling reality is that much of medicine still exists in a gray zone. What might pass for standard of care in one location is scorned at the next. There is often no black or white answer about when to treat or how to treat. Or even if to treat, in the unfortunate case of melanoma.
By default, the approach I’ve settled on is referred to as shared medical decision-making. My doctors know me and my case well enough to respect my values and preferences and to customize my care accordingly. Or at least it appears that way. I will be paying another visit to my surgeon next week to have subcutaneous metastasis #12 removed--on this occasion without first having had a consultation. Dr. Vetto understands that I know what a met looks like; I can even estimate its size with some accuracy. I have also decided to postpone the PET/CT scan I was scheduled to have in early October. Dr. Curti, my medical oncologist, has agreed that we’ll regroup in January and go from there. He and I differ on the value of follow-up scans. I tend to be dubious and he tends not to be. It’s my body, however, that’s receiving all the radiation and I’ve lived long enough with melanoma now to become aware of my long-term risks for a second cancer.
Some people are maximalists. I have risk-averse friends who have had prostate cancer surgery or back surgery for which the absolute need was debatable. They believed in the benefit of medical intervention and appear to have had good outcomes. It’s not for me to criticize their decisions. For my own care, I remain a skeptic.
The dilemma, of course, is knowing where to draw the line. My preferences may or may not be based on the best medical evidence. I’d like to think they always are, but I know better. Sometimes I act out of ignorance. I don’t always wish to shoulder the burden of choice and wish there were more occasions when my doctors better fulfilled their role as guide. For example, I’d love to have an extended chat with my oncologist about the relative merits of advanced imaging tests (MR, CT, PET) in metastatic melanoma. I know this technology reasonably well, and have read the literature. My doctor is also a medical researcher and I respect his opinion. Unfortunately, time is money and when my 30 minutes with him are up, he’s out the door. We never get the chance to share our decision-making about my care at the level that satisfies me.
It’s nearly impossible for me to imagine the future course of my melanoma. The fact that I appear to be on some sort of plateau at the moment is inscrutable. The choices I face are pretty easy compared to those with, say, prostate cancer, who must choose among watchful waiting, various forms of radiation, and even more surgical options. My choice right now is binary: I have a met, thus it must be resected. I don’t need a lot of medical advice to make that decision.