My Gordian knot

Let me describe to you my dilemma as a survivor of stage IIIC melanoma. If I can cut through this Gordian knot, I’m hopeful that I can put behind me the gnawing doubt I feel about my odds of surviving this disease and focus on happier things.

It’s been about 16 months since I had surgery to remove all lymph nodes in the left inguinal region of my pelvis. Two of those nodes were cancerous, with what’s called extracapsular extension—meaning the cancer was just laying there in the tissue, and not contained within the nodes themselves. This puts me at high risk for recurrence, as I’ve written in this blog previously. What I or anyone else thinks about whether I will recur or not doesn’t matter, as this cannot be known on an individual basis. I vascillate between believing I may be one of the lucky long-term survivors of advanced melanoma and believing that I won’t be, and that I’ll eventually have to contend with another round of medical decision-making. I’m totally agnostic about my prospects.

The whole-body CT scan I have tomorrow will be the latest milepost to surpass. I feel great and have no reason to suspect cancer will be detected this go-round. The logic of having quarterly scans in the absence of symptoms is that should cancer be present, it will be detected relatively early and action can be taken against it. This would almost certainly include surgery and possibly enrollment in a drug trial. While it may seem counterintuitive, the evidence that early detection of recurrent melanoma leads to an extension of life is almost nil. It may provide a slightly better disease-free interval, but stage IV melanoma is not to be denied. Survival is usually measured in months.

Here’s my dilemma: If a scan was to detect a recurrence, but can’t ultimately extend how long I live, why submit to it? For starters, it’s expensive. A whole-body CT scan (which does not include the head) at my local hospital will cost at least $3000, plus a few hundred more for the radiologist’s interpretation. Because of the high deductible on our insurance plan, this sum will come straight out of my pocket. The last two scans I’ve had were chest CTs only, but the protocol that my oncologist follows (with no evidence to back him up) is that I’m due for a chest/abdomen/pelvis exam. At least he didn’t order a PET/CT scan, which would be even more expensive and has a higher rate of false-positives. At my last appointment, when I asked the oncologist why he thinks this particular scan is worth having, he stated that if there’s cancer to be found, you don’t want to let it grow larger. His assumption is that he thinks he’s treating me when, in fact, he’s merely giving me a high-tech pacifier. Oncologists aren’t in the business of standing by and doing nothing, even when that’s a medically responsible thing to do.

According to what I’ve learned from others who are stage IIIB and C survivors, some of the top cancer centers in the country don’t scan asymptomatic patients. Oncologists at these centers have read the literature and in some cases conducted studies themselves and concluded that there is no advantage to scanning, even if it were to detect cancer that proved to be malignant. The progression of metastatic melanoma is inexorable, and like whack-a-mole, if you nail it at one location, it will likely pop up somewhere else. There are a few long-term stage IV survivors, some of whom are active on the online bulletin boards that I frequent. They are the really lucky ones and based on what I’ve seen them write, they know it. They can't explain their longevity. There are, in fact, documented cases of complete spontaneous remission. And despite the dismal record of new drugs being tested in patient trials, some stage IV survivors appear to have been helped by them. “Cured” is not a word used often in the melanoma literature, however.

So am I expending nervous energy and wasting money to have quarterly scans in the absence of symptoms? Should I believe what I’ve been told by some informed laypersons but not by oncologists that watchful waiting is the smartest strategy at this point? Is there a psychological advantage to having scans regardless of their utility? Would I have an even harder time finding peace as a melanoma survivor if my next scan came only after I found a suspicious lump or felt a sharp pain somewhere in my viscera? Would a no-scan strategy be a worse or better way to live?

Scientific research may eventually render a verdict, but probably not soon enough to help me. There is enormous variability in standards of medical practice for all sorts of diseases and injuries (including many cancers), which is part of the reason why healthcare costs are out of control. I have no interest in being a martyr and risking the effects of a seriously advanced cancer if earlier detection makes a difference. I’m not convinced that it does. And I believe I’m paying a steep psychological toll by having regular scans. There is no more exquisite agony than what one experiences during the hours and days after a scan, and before hearing the results. I’m told by longer-term survivors that these follow-up scans are eventually reduced to emotional speed bumps. For now, they’re more like driving along a highway rumble strip.

Given my circumstances, what do you think you’d do in this situation: go with the scan or no-scan approach? I could use a little help with this. Your opinion couldn't be any less informed by science than what I'm hearing from my doctors.