The Trials of Coping with Life Under a Cloud of Medical Uncertainty


August 19, 2013

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“If we don’t know the answer to a question, it’s better to just say, ‘We don’t know.’ And then, of course, investigate and try to find an answer. We shouldn’t jump in with an uninformed answer based on our cognitive biases. And we definitely shouldn’t assume that, because we don’t know the answer to a question, the answer is therefore God, or something else supernatural.”

Skeptics and atheists say this stuff a lot. It’s all very well and good: I totally agree. But what do you do if the question on the table is one you really need an answer to? What if the question isn’t something fairly abstract or distant, like, “Why is there something instead of nothing”? What if the question is one with an immediate, practical, non-trivial impact on your everyday life? Something like… oh, say, just for a random example, “What are my chances of getting cancer, and what should I do to prevent it and detect it early?”

Here’s what I mean. I’ll start with my own story, and get it out of the way.

I recently got a presumptive diagnosis of Lynch Syndrome. This is a genetic syndrome that gives you about an 80% chance of getting colon cancer (a cancer I’ve sort of had — my last two colonoscopies found pre-cancerous adenomas which would have turned to cancer if they hadn’t been removed); a 20% – 60% risk of endometrial cancer (a cancer I definitely had, it’s the cancer I had surgery for last fall); and a somewhat increased chance of some other cancers, including an as-yet-unknown-but-possibly-as-high-as-10-or-20-percent chance of stomach cancer.

I say I got a presumptive diagnosis, because they didn’t actually find the genetic markers that normally point to Lynch Syndrome. But this doesn’t mean I don’t have it. According to the genetic counselor, it’s entirely possible — likely, even — that there are other genetic markers associated with Lynch Syndrome, ones that researchers don’t know about yet. And my family/personal history of Lynch Syndrome cancers is strongly suggestive of it. It’s pretty much a textbook case of “Lynch Syndrome family history.” So we’re proceeding on the assumption that I have it… even though we don’t know for sure.

So in addition to my now-annual colonoscopies (oh, joy), we had to decide if I should get stomach endoscopies. I have an increased chance of getting stomach cancer… but my genetic counselor said there currently aren’t any agreed-upon medical guidelines on stomach endoscopies for people with Lynch Syndrome, and suggested that I consult with a gastroenterologist. So I talked to a gastroenterologist… who said that there currently aren’t any agreed-upon medical guidelines on stomach endoscopies for people with Lynch Syndrome, and that the two of us would have to make whatever decision seemed right to us, updating it as new information comes in.

You may be noticing a pattern here. Presumptive diagnosis. As yet unknown. No medical guidelines. It’s possible. It’s likely. As new information comes in. Whatever decision seems right. Proceed on the assumption, even though we don’t know for sure.

This is often the reality of science. There are questions that are pretty much settled: questions we hypothetically might re-visit if giant heaps of new contradictory evidence came in, but that have had an overwhelming body of evidence for decades or centuries pointing to one answer. (Questions like, “Does the Earth orbit the Sun?”) There are questions where the general broad strokes are mostly settled, but where we’re still figuring out many of the finer points. (Questions like, “What the heck is happening on the subatomic level?”)

Republished from: AlterNet