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Aug 28 2013

My Body is the Knife: Skepticism and the Reality of Medical Uncertainty

This piece was originally published in AlterNet.

The cutting edge of science is hard to accept when your body is the knife.

person asking question“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-ten-or-twenty 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.

science journal coverThis 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, upsetting, 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.)

knife-in-handIn 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.

LLS-logoGreta 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.

15 comments

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  1. 1
    jesse

    Very nice post about uncertainty.

    I was curious tho, how you felt about “preventative” surgery, like for breast cancer.

    I mean, I hear of women getting double mastectomies — see Angelina Jolie– because they have a gene that increases the probability they will get breast cancer. But that’s a probability, it doesn’t mean you will always get it, and millions of women around the world have that gene and don’t get it, you know? And I get that it’s wrapped up in all these body image issues too– you don’t see men getting pre-emptive testicle removal (or it doesn’t make the news anyway).

    It just seems a bad misreading of the science, and then there’s the real risk of going under for surgery.

    Now I will admit a bias here: I am male (so breast cancer is not a worry). And I have a maxim of not doing anything permanent to my body unless there’s something really life-threatening going on. And a real dislike of surgery, since I have been there, done that, and hated it the first four times. (It was traumatic injuries, so I recognize that the situation is different and I am sure that affects my body aesthetics sense too — I used to have an irrational aversion to wearing shorts).

    But I was curious what you thought. Because at first blush it seem to me that you could end up with a lot of unnecessary surgeries, imposing on women a “nuclear option” solution.

  2. 2
    invivoMark

    This cancer biologist appreciates this post, Greta. I agree with everything you’ve written. Thanks.

    @jesse: BRCA mutations are extremely high penetrance. A loss-of-function BRCA1 mutation gives a woman over 50% chance to develop breast cancer by 70, and BRCA2 mutations give about a 40%-60% chance. Risk of ovarian cancer is only slightly lower by the same age. The expected lifespan of a woman with a BRCA mutation is significantly increased after prophylactic surgery. If she has both a double mastectomy and oophorectomy, her expected lifespan is raised to be almost on par with the average. It’s a very good idea for those who can afford it.

  3. 3
    Bjarte Foshaug

    And that can make people feel very freaking cranky about medical science.

    I think this hits the nail on the head. In my experience people who reject medical science in favor of alternative woo tend to find it very difficult to grasp the idea that “the best we can offer given the current state of our knowledge” , while flawed, is still better than anything else that’s currently available, and getting angry about it isn’t going to make a perfect solution magically appear. Bottom line, the “entitled costumer” attitude (“I’m paying for this, and you have to give me what I want!”) that we often fall into to when purchasing goods and services is probably not the right lens through which to look at medical science or health services in general.

  4. 4
    Avicenna

    I wrote out a rather large post on this and then accidentally lost this.

    I second the BRCA mutations. Medically speaking (FTB’s resident doctor to be and soon to be surgeon to be. I get my Tardis in February)

    Think of your body’s defences as swiss cheese. You have layers that protect against Cancer. Anything that hits the holes in the “cheese” passes through. Just once in a while you get that “one shot” that goes through all the holes and gets to the other side. That’s the “cancer cell”.

    So a person may smoke daily and drink daily and still not get Lung and Liver cancers (In fact? The biggest cause of death from smoking is NOT lung cancer but COPD – Chronic Obstructive Pulmonary Disease Asthma, Emphysema and Bronchiectiasis). Or that person may catch it on the first go.

    Now there are bunch of genetic mutations that remove these layers. BRCA is one of those. In a traditional surgical setting the presence of BRCA genes indicates how conservative or radical surgery should be. What’s the point of going through chemo and radio therapy and multiple surgeries if you are BRCA1 Positive? You may as well have one surgery, a single dose of chemo and radio and have better survival, better prosthesis and cheaper outcomes.

    Bjarte – The other problem is that Medicine cannot lie, while the alt. med guys often just say things that are wildly incorrect.

    One of my “nemesis” is the very horrid Mayer Eisenstein. A genuine doctor who’s quackery has killed infants and caused so many abortions and birth defects through his “Natural Delivery” nonsense. Some of his claims were so outrageously wrong that it’s shocking. There is absolutely no scientific overview of the quack community what so ever and no onus or imperative to be honest.

    Put it this way, I have delivered a child breech before. I had no choice, the woman started delivering at home and I had to rush out to do it. By the time I had gotten there the baby had already engaged in that position.

    It was terrifying. Mayer’s quacks were doing this as ROUTINE procedures. Women who should have had C-Sections. God knows how many infants died during this (the mortality is high without any instrument delivery) and to this day Mayer still defends his practices and claims that “we are all jealous and after him”.

    The worst bit? He is portrayed as a feminist because “Natural and Home Births = Girl Power” which is like saying that reducing the pain of child birth, reducing time and reducing the damage (Believe me, natural birth damage is phenomenal and permanent think vaginal fistula, prolapsed uterus/rectums, weakened perineums and permanent tears. Mayer Eisenstein’s midwives defended it with the statement that a “Tear” is better than a cut)

    Greta’s done her research, but there are countless people who think that the quacks are “real doctors” and subject to the same honesty clauses we have. It’s scary to be on the “unknown” side of medicine but you have to remember the reason it’s this scary is because of all the known stuff. There are people still who think that penicillin is “magic”. There are people today who I treat for TB who think my medicines are “wonderful”. Albendazole and Metronidazole save so many lives that it may as well be witchcraft to the people to the point I have seen them try and use it to treat other conditions (I have to stop them when they do that).

    When you have one side that is legally obliged to be honest and the other that’s not and have a disease like this then the people who say that they can help you are the dishonest ones.

  5. 5
    Greta Christina

    jesse @ #1: I think that if I had a coin’s flip chance or better of getting a terminal cancer, and I could mostly eliminate that chance by getting a body part removed that I had no need of, I would jump at it. (And I’d probably be pretty irritated at anyone who told me it was “unnecessary.”)

  6. 6
    Bjarte Foshaug

    The other problem is that Medicine cannot lie, while the alt. med guys often just say things that are wildly incorrect.

    Oh yes, it always breaks my heart that the very thing that’s makes science so great – the refusal to claim more than one can justify – is used against it, while quacks are rewarded for cheating.

  7. 7
    RainbowSlushie^.^

    Considering in a few hundred years we’ll all look like cyborgs or be complete drones anyway (supposing humanity is even still around) probably taking in energy through photosynthesis or something like this, the idea of organs being removed or exchanged or food being useless, I dunno, it’s surreal. I had an aunt that died of emphysema, an uncle that died of colon cancer, a grandfather that died of heart disease, a few other relatives that doed of other such things, most of them cut far short of the avg lifespan. Growing up was seemingly one long list of Funerals, people dying every 2-3 years or so.

    Their deaths changed me in ways I still don’t fully understand. I hope your doctors are able to work against this condition Greta, in optimally and desirably effective ways, to contain it, should it be found out for sure that you have it, and hopefully they are mistaken and you do not have it but something at least slightly less bad. I am thinking of how I felt when another aunt or uncle died, and the profound emptiness inside that I felt, the feeling of despair and love and sorrow, and missing them so much. It was so profoundly difficult to ever deal with those things, and in fact they dealt with me.

    Every death, every funeral I went to, was a grim reality imposing itself that I could never accept.

  8. 8
    stever

    Avicenna: It’s not just medicine that promotes magical thinking among the general populace. As the technical basis of civilization becomes more complex, it becomes harder for the man-on-the-street to comprehend how it all works, so he resorts to Cargo Cult thinking. It’s just that medicine is where the difference between how he thinks things work and reality is most likely to get him killed.

  9. 9
    jesse

    @greta and @avicenna — thanks I just wanted to see if I was reading the statistics wrong or the science. I asked because there are so many surgeries/ procedures women get subjected to that aren’t always necessary and there’s a stack of issues that go with it.

    I’m thinking in part of all the whackiness that once went with OB GYN care. (I have read so many accounts of the way it was done in the 50s, 60s and 70s, which seem crazy now, to say nothing of the lack of reproductive health services).

    It’s likely one reason why some feminists I met over the years have a hell of a time trusting medical science; I suspect it’s the same reason that (can’t find the cite right now) that women seem more receptive to altie messages, if the polling is to be believed. (Certainly alt-med marketing seems targeted to women a lot). Male doctors could often be pretty awful to female patients, even without meaning to. And I was also thinking of how we always end up having to debunk the “gene for X” meme. And on top of that the gigantic body image thing that every woman has to contend with. So I was thinking of the great pile o’ sexism and wondering if that was affecting how those treatments were decided on and why they got the attention they do.

    Anyhow, Greta, I wasn’t trying to say that taking care of women is unnecessary, just that there are lots of procedures that the return on investment isn’t as good as it looks sometimes, you know? Like you could get a double mastectomy and never get breast cancer but your lifespan is only increased on average by a little, to the point where you mightn’t notice given all the other things that kill you eventually. But I see that isn’t the case. Thanks to you both.

  10. 10
    Ani J. Sharmin

    Greta, I teared up reading this. I have family members who have/had illnesses that don’t have a cure, areas where much more research is needed. And there’s always that feeling of really wanting there to be a better option, while also realizing that, for some, that cure isn’t going to be found soon enough to benefit them.

    From the perspective of someone who works in healthcare, thank you for writing this, both for sharing what things are like from a patient’s perspective and for encouraging others to see medical science as something that is good, even if it’s not perfect. Things like patient counseling and education are part of healthcare, and there is always a need to communicate effectively. Part of it is just giving people the information, but it’s also about combating misinformation from other sources and being understanding of concerns and frustrations a patient may have.

    It’s really remarkable when you consider that there are now treatments that didn’t exist before, illnesses that once killed quickly, but which can now be treated so a person can live much longer. I remember when professors would talk about therapeutics, and some professors liked to structure their lectures in a somewhat chronological way. So, for example, when discussing a certain category of medications, they would talk about the drugs in the order they were discovered. In the process, they’d explain how discoveries were made, how discoveries about the disease lead to better medications, how experiments lead to medications with greater efficacy or fewer side effects.

    @invivoMark (comment #2) and Avicenna (comment #4): Thanks very much for the information and experiences you shared in your comments.

  11. 11
    Erin (formerly--formally?-- known as EEB)

    Thank you so much for writing this. And for your honesty during this time in your life. These posts are amazing. I learn something, or see things a little differently, with each one I read.

    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.

    YES.

    The biggest things I’ve learned after getting sick (my intestines ruptured a couple years ago, I’ve got 3ish feet of small intestine left, 15 surgeries, permanent disability) are that a) everything has a consequence, even doing nothing, and b) there are often no “good” answers, just a choice between “bad” and “less bad”.

    Like, okay, I don’t absorb calcium or potassium (or any nutrients, really) very well at all, and I have to take in about 3-4x the recommended dosages to get enough in my system. The part of my body that did the vast majority of the nutrient absorption is just gone, now. So I take chewable supplements prescribed by the doctor…but they give me kidney stones. Usually a kidney stone every month or so (and they tell me I have several large stones that could decide to go anytime). Don’t get periods anymore, but I pass a stone like clockwork. Yet if I stop taking the supplements, I end up in the hospital on a drip–or dead. (Last time I ended up in the ER, the doctor said I had the lowest potassium level of any person she’d seen who wasn’t dead.) So I take the supplements.

    I’ve had dozens, literally, of CT scans. Multiple CT scans come with a risk of cancer and neurological issues. The more you have, the higher your risk of cancer goes. Especially because my maternal family history of cancer is nearly 100%. But I have a hernia they can’t operate on, in a very bad place. There’s a good chance it might choke off part of my intestine, and I don’t have any more to lose. (Seriously: I have 25-50cm safety zone of small bowel. I lose that, and I’m on IV feeding for the rest of my life.) I can–and have–get blockages in my intestines. They’ve gotten twisted. They even reconnected on their own after being disconnected for several months while I was healing! (The body is incredible.) All of these problems would mean more surgeries, more medical interventions, possible death. So I submit to the CT scans, knowing that each one increases my chances of cancer. But I have to Scarlett O’Hara that shit. (“I can think about that today; I’ll think about that tomorrow.”)

    Yoga helps with the pain, but it also is probably what gave me the most recent hernia. One doctor tells me to lose weight, the other says I need to eat much more food because I’m malnourished, and just throw out my scale because it’s not important anymore. One doctor wants to keep my pain totally under control, believing that pain stresses the body and keeps me from healing (on top of just being a horrible thing to live with), the other doctor thinks the pain medicine might mess up my system even more, and it’s too much of a risk.

    I hate the uncertainty. I hate not having a “right” answer. I hate that no one knows what’s going to happen, what my life is going to be like 5, 10, 20 years from now. if I’ll even be here. If I’ll ever be able to be independent. if I’ll ever be able to work. If I’ll ever have children.

    My biggest challenge right now is convincing myself that my life isn’t over at 27. I’m trying to find purpose now. I have to believe that my life is more than just existing. To be totally honest, there are times I wish I could just cut out the part of my brain that knows the truth, and go back to being religious. I miss the certainty, knowing all the rules. The community. The hope. Having purpose and meaning. Not all the time, and I love the people I’ve met and the community I’ve found online. But sometimes it gets to me, and I miss it. (And my mom can sense when I’m vulnerable like that every fucking time. And along comes invitations to church and phone calls from other church members wanting to “hang out” –”oh, why don’t you just come to bible study and we’ll grab coffee afterwards?” hanging out.) It’s so much harder to create that meaning and purpose on my own. Especially when I struggle every day to actually believe my life does have meaning.

    Which is another reason why your posts mean so much to me. I do a lot of lurking, less commenting at your blog, but I wanted you to know how important your writing has been to me. Thank you.

  12. 12
    susans

    Jesse, men have breasts and do get breast cancer. I believe women are about 100 times more likely to get breast cancer than men; however, I don’t know the comparative rate of benign breast tumors.

    Greta Christina: is the test for Lynch Syndrome expensive? My father and his mother had and survived colon cancer, so my siblings and I have colonoscopies every five years. My gastroenterologist has not suggested genetic testing, but your post makes me consider that option.

  13. 13
    invivoMark

    @EEB #11: Holy crap! Thank you for sharing. I think you are remarkably brave for keeping up the fight, and I’ve got tons of respect for your ability to remain rational and sane in the face of such adversity! The world could use a whole lot more people with your resilience and rationality. I wish you all the luck!

  14. 14
    RainbowSlushie^.^

    I think I’m dissociating way to much pain and suffering, havving lost my family and extended family twice over the last seven years, for various reasons, and being disabled myself for the last 14 years, inhabiting lots of trauma due to the isolation, experiences in the cult. It’s too much dissociation right now for me to engage this topic meaningfully except to say I hope this diagnosis turns out in a way you can survive Greta. I’ve had more than one close call with death in my life, and lived, and I’ve grown up seeing relative after relative die every 2-3 years. People like you are the closest thing to a relative I have now, some part of me hopes you will stay around and would miss you if you were gone.

  15. 15
    dcovill

    Engineer Henry Petroski (Duke University) wrote a book some years ago called “To Engineer is Human: The Role of Failure in Successful Design”.

    His argument is that engineering is not a deterministic process, where accurate computation with exact data inevitably yields a perfect result. It is instead a process of successive approximations, where we examine our failures to learn how to improve the next attempt.

    You have just explained why Medicine (and indeed all science) works the same way.

    Dan Covill
    San Diego

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