Melanoma, NED and me

“So that whole cancer thing, that all came out OK, right?” asked a friend I hadn’t seen in the six months since receiving my cancer diagnosis.

I had just finished high-dose interferon for stage 3a melanoma and had been told my status was No Evidence of Disease (NED). In those first months, I had obsessed about gathering all the information and could have easily (and eagerly) leapt into a half-hour discussion.

By that point, I had a feel for how to play the question, knowing a little restraint was needed because different people want different levels of information, and what most people want is a very simple assessment. Basically you’re sick or you’re not, right? Or, in the case of cancer, you’re either cured or you’re right in the thick of fighting the “courageous battle.”

The reality of NED status isn’t that clear. Because once you’ve finished treatments and pass through that initial euphoria of feeling that you’ve won, you settle into something fundamentally unsettling. There you remain with the uncertainties and recurrence statistics and anxieties that may be real to you but aren’t part of the straightforward story most others want to hear. Yes, some will press for more details and may even ask the sort of pointed questions that reveal a level of understanding arising from personal experience. But most people will not. Half-listening, they may wonder why you are calling yourself “Ned” and offer congratulations.

In this particular instance, I offered a fairly brief response and left it at that. I wasn’t bothered by my friend’s casting cancer as all in the past. I was suddenly aware that it wasn’t simply my mood that dictated my mild response, but my expectation that the cancer wasn’t coming back. At other times, when my expectation was that the melanoma would metastasize and defeat me within a couple of years, an innocent “congratulations” would have struck me as almost callously naïve.

It’s odd that the conscious mind can consider multiple possible futures with a clear understanding that some are more likely than others, yet at some level we truly expect only one. But the shift doesn’t come from any change in the information or circumstances—sometimes the new expectation just seems to percolate up, unbidden, from the subconscious.

I know I’m not alone in this tendency. Reading online patient forums, I see messages from people with very thin, localized primary melanomas who are obsessed with worry and sure their cancer will ultimately take them, even though the statistics argue their odds of dying from the disease are very slim. And there are posts by stage 4 patients who are consistently upbeat and confident that they have a full life ahead, despite the odds.

One could argue that NED patients should simply maximize happiness by focusing on the best possible outcome and live in the expectation of receiving their full, fair measure of years ahead. A recommendation perhaps as practical as suggesting that one confine all negative thinking to mid-morning on Tuesdays.

Undoubtedly, it is unhealthy to obsess over the worst scenarios (particularly when those are very unlikely), and the story you feed with your attention certainly grows stronger. But on the other hand, some of this is beyond our control. And maybe that shifting expectation isn’t all bad. After all, doesn’t the wiser perspective on life that comes from this disease arise from spending some time considering, and maybe even expecting, an abbreviated future? Doesn’t that also leave us better prepared to meet the end, whether it comes soon or many years ahead?

—Gina King is a wildlife biologist in Yakima, Wash.