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

Personal Health

"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?")

And there are questions that we're very much in the process of answering, questions on which scientific consensus hasn't been reached, questions for which the data that's giving us answers is still coming in, questions we're still making educated guesses about based on limited information, questions for which our "best educated guess" answers are changing on a yearly and even monthly basis. Questions like... oh, say, just for a random example, "How exactly do genetic factors influence people's likelihood of getting certain kinds of cancers -- and what are the best ways to address these factors to improve prevention, early detection, and treatment?"

Those of us who value science understand this. In fact, we more than understand it. We embrace it. We see it not as a weakness, but as a strength. Science isn't a body of knowledge so much as it is a process, a method of gathering knowledge. And the way that this process self-corrects with new information is one of the main reasons it's so jaw-droppingly successful. (If you think science isn't jaw-droppingly successful, think for a moment about the device you're reading this on.)

But if you're living your life in the middle of one of those unanswered questions, this uncertainty and shifting ground can be a hard reality to take. The cutting-edge of science is hard to accept when your body is the knife.

And I think this is one of the reasons many people are so skeptical of science, so dismissive of it, so ready to say, "Oh, what do those scientists know? They keep changing their minds! Last year they told us not to eat carbs, now they're telling us carbs are okay! They can't even make up their own minds -- why should we believe anything they say?" On a practical, day-to-day basis, the cutting-edge, not-yet-answered science that most people are intensely engaged with, the one that most people deeply care about, is medicine. And the reality of uncertainty in medicine is often frightening, depressing and even enraging.

The cutting edges of astronomy, of botany, of quantum physics? Most people aren't even aware of them. Their immediate effects on people's lives don't generally start until the science is fairly settled. Even with computer science -- another science that affects our lives profoundly on a day-to-day basis -- most of us don't even touch the technology until it's more or less hammered out.

But medicine is different. With medicine, a significant amount of research is being done on human beings. A case could be made that all medicine is research being done on human beings: medical protocols and best practices are constantly being updated and refined, even in areas that are pretty well understood. And when it comes to terminal illnesses, it would be irresponsible not to pursue uncertain, incompletely understood avenues of treatment that have highly unpredictable outcomes. If the choices are "try something that might or might not work" or "die"... well, most of the time, that's a no-brainer. (My wife Ingrid got arrested nine times for demanding, among other things, that the FDA grasp this simple principle and shorten the research protocols for experimental AIDS drugs.)

In the cutting edge of medical science, human lives are the knife. And that can make people feel very freaking cranky about medical science.

Boy, howdy, do I understand that. I hate this uncertainty about my Lynch Syndrome. I would much rather just have the bloody diagnosis. I would much rather know for sure that I have this syndrome, instead of having to act on the assumption that I have it even when I don't have a test result confirming it. If for no other reason: The fact that they didn't find the genetic marker? It means that my family can't get tested for that marker to see if they have it or not... so they now have to work with this vagueness as well, this not-very useful information that "You may or may not have a 50% chance, or a 25% chance, of having this syndrome, but we have no real way of knowing, so maybe you should be getting more frequent colonoscopies than you normally would. Or something."

This is frustrating as hell.

But here's the thing.

Medical science is the reason we even know about Lynch Syndrome. Medical science is the reason I'm getting colonoscopies every year instead of every five years, and am getting my pre-cancerous adenomas scooped out every year before they turn into cancer. Medical science is the reason we know that the tendency to get some cancers is heredity: it's the reason that, even before my doctors knew anything about Lynch Syndrome specifically, they were looking at my mom's cancer history, and insisting that I get colonoscopies early. Medical science is the reason millions of people are getting regular colonoscopies and mammograms as a standard part of their medical care, and are getting cancers and pre-cancers detected and treated early. Medical science is the reason colonoscopies and mammograms even exist. If we'd known about Lynch Syndrome forty years ago, my mom could have caught her cancer before it ate her up at age 45. It's painful to think about that. But I can't be sorry that the current medical science, imperfect as it is, is keeping me alive.

When I was growing up, people used to talk about finding "a cure for cancer." As if cancer were one disease, and we were going to find one magic-bullet cure for it. I think some people are disappointed that this magic bullet hasn't happened: that cancer is turning out to be hundreds of different diseases, and that after all these decades, after millions of dollars and millions of person-hours poured into it, cancer research is still about prevention and early detection and improved treatments and increased lifespans, much more than it is about a "cure."

But the reality is that cancer is a much more survivable disease than it was when I was growing up. More people with cancer are getting it caught early. More people with cancer are living longer. More people are getting their cancer fully treated, and are living full lifespans and dying of something else. More people with cancer who can't get it fully treated are living longer, and better, than they would have fifty years ago, or twenty, or even ten. More people with cancer are getting treatment that isn't excruciating and doesn't completely screw up their lives. More people with cancer are getting treatment that's less excruciating, and is screwing up their lives less completely, than it would have fifty years ago, or twenty, or even ten. And some people aren't getting cancer at all... because they're eating their fiber, because they quit smoking or never started, because they're getting regular colonoscopies and are getting their pre-cancerous doodads scooped out before they turn cancerous. Oncology is an imperfect, inexact science... but it's getting better all the time. Prevention and early detection and improved treatments and increased lifespans are not trivial. Millions of people are alive today because of them. I'm one.

And I'm not going to embrace the results of the scientific process that's keeping me alive -- the messy, uncertain, unpredictable, loaded-with-false-starts, "try a hundred things with no idea which one, if any, will pan out" scientific process -- and then piss all over it because it isn't perfect.

Greta Christina is the 2013 Honored Hero of the Foundation Beyond Belief for the Leukemia & Lymphoma Foundation's Light the Night Walk. To participate in the Light the Night Walk, go to the LL&S website. To participate under the Foundation Beyond Belief banner, find out how to join an existing team -- or start one of your own.

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