Monday, June 14, 2010

Book Review: Should I Be Tested for Cancer

Should I Be Tested for Cancer?: Maybe Not and Here's WhyShould I Be Tested for Cancer?: Maybe Not and Here's Why by H. Gilbert Welch, M.D., M.P.H.

This fascinating book explores the world of medical testing, especially for cancer, in otherwise healthy patients (or at least those that are not showing any symptoms of cancer). He states repeatedly that this book does not address testing for cancer in patients that already have symptoms. If you are feeling unwell, please see your physician. It also does not address the situations of people who have a strong family history of cancer which is proven to be influenced by genetics.

If, however, you feel perfectly fine, should you agree to mammograms or screenings for things like cervical cancer and colon cancer? Many such tests are standard fare for those of us with health insurance and regular doctor's visits. I'm not currently contemplating any tests for cancer, but I am seeing my OB constantly (or so it seems) and have faced the usual suggested prenatal tests so the idea of testing was recent in my memory. (Though it is not the topic of this blog post, we decided to decline most of the prenatal tests. Unless a result meant we'd invite someone else into the delivery room, we simply didn't need to know before the birth.)

You can learn a great deal simply by reading the introduction to the book. Dr. Welch gives a brief but thorough summary of his arguments in just a few pages.

I marked so many passages that I could not possibly share them all. In six chapters, Dr. Welch covers the main problems with cancer screenings, including:
  • the small chance of benefit (that you will be in the minority of patients that have a treatable, aggressive cancer caught at just the right time), 
  • the much larger chance you'll have a "cancer scare" (that you will have an abnormal test result that indicates you might have cancer when in fact you do not, or that your test results will continue to be abnormal with no doctor willing to diagnose cancer but also unwilling to give a clean bill of health),
  • the chance of unnecessary treatment (believing you have cancer when in fact you have abnormal test results),
  • the chance of finding (and treating) a cancer that would never have harmed you (either because the cancer is exceptionally slow-growing or because the "cancer" is one that does not actually result in detrimental health),
  • the chances of disagreement on whether the tests show you have cancer, and
  • the possibility that you and your doctor may focus too much attention on the cancer that might be rather than the problems you are currently facing.
Lots of evidence is presented showing the probabilities and possibilities of the above problems, including how difficult it is to test the benefits of testing itself. I found all of Dr. Welch's arguments convincing (though I was inclined to believe all of the above anyway, given our own mindsets and other books we've read like The Last Well Person: How to Stay Well Despite the Health-Care System, reviewed here).
Only so many people die from cancer, and only so many are ever bothered by symptoms. Could it be that our enthusiasm for cancer testing leads us to detect cancer in thousands of people who would otherwise never be affected by the disease? And given the uncertainty and fear associated with a cancer diagnosis and the harms of treatment, isn't it possible that many would be better off simply not knowing?
What I hadn't considered before was his last point, that your doctor may be so focused on the recommended tests (and the results, the follow-up tests, and so on) that the current worry or symptom that brought you to the office may be ignored. (I think, too, many doctors believe they've addressed a problem if a test was ordered and came back clean, even if the pain remains.) There's no evidence or data presented in the chapter, just the thoughts and experiences of Dr. Welch and his worries of his own patient-doctor interactions, but I found it an intriguing argument and quite logical.
Routine testing is really a concern for what could happen in the future. And worrying about what might matter in the future can distract your doctor from what matters now. The more time we spend ordering tests and following up on abnormal results, the less time we spend dealing with things that concern you now [...] I'm not suggesting we abandon all scheduled health maintenance and restrict ourselves to addressing current patient concerns. We can certainly do some of both. But I do want you to consider that even if there were no other downsides to cancer testing--that is, if it could only be beneficial--it still might distract from other, more useful activities. I also want you to be aware that testing in general increasingly dominates the physician-patient encounter.
Dr. Welch continues with the second part of the book: How our behavior as consumers of health care could by changed with more knowledge.

I was particularly interested in his account of an evaluation of the use of mammography for women aged 40 to 50 by the National Cancer Institute (discussed on pages 126-128 in the book). The panel presented its findings, essentially "the benefits of mammography were simply too close to call" and that women should talk with their doctors and make individual decisions rather than depend on set guidelines for the entire population. Doctors (including radiologists, who of course stood to lose a lot of business if all those women decided against mammograms) and politicians were in an uproar.
This example highlights some of the forces that work to preclude rational discourse about research findings on cancer testing. There will always be an asymmetry among testing proponents and detractors. Testing proponents have a very strong interest (often financial) in promoting tests--much more so than the researchers trying to critically evaluate them.
One of the points Dr. Welch makes in the book is how we should each think about what we want from our medical care and how we want to live our lives. If cancer screenings are going to increase your anxiety about your own medical health, are they beneficial?
As I said in the introduction, the dominant cancer prevention strategy in American medicine today is to look for cancer in people who have no symptoms. Given the problems discussed in this book, you will want to gauge your own reaction to this approach. How we perceive health is a choice: you may assume you are healthy until proven otherwise or assume that a problem may exist until proven otherwise. How much effort, emotional and otherwise, do you want to devote to looking for things wrong when you feel well? To what extent would you rather focus on being well when you feel well?
Dr. Welch presents some concrete steps we can take to work with our doctor to determine the level of medical testing we want and when.

Despite the complexity of the field of medicine and specifically the complications of medical research, Dr. Welch does an excellent job presenting the data and his arguments in a clear way, even for those without medical training. (I admit I have a bit of an advantage, dated those it may be, by my background as a student of biology and research.) There is also a glossary at the back of the book for any tests, diseases or medical terms that may be unfamiliar.

I highly recommend this book.

6 comments:

  1. Wow, I really enjoyed this post, Kansas Mom. My hubby and I have a number of frustrations with the medical field, and this plays right into some of our thoughts and feelings. Medicine (as in, the field, not drugs persay, although...) has its place for sure, but I think it has an importance placed on it by today's society that just isn't proportional to our need for it. Does that make sense? Anymore medicine is simply, "how do we "fix" people from the outside in", rather than looking for what might cause problems (be it cancer, heart disease, high blood pressure, etc.) and fix it from the inside out through simple lifestyle changes. I think, sadly, much of the medical profession is driven by the almighty dollar anymore, with the culprit to lots of these "evils" (not trying to sound like a conspiracy theorist, but you know what I mean) being big-pharma. I just don't think they have our best interests at heart. By any stretch. I could rant, but I'll refrain. But I really liked this post.

    As an aside, how on earth do you find so much time to read? I'm lucky to get in 20 minutes a day.

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  2. Monica, I think you're right about big pharm. companies, and the medical testing field fits right into the same dynamic. This book even talks about the financial incentives doctors have to either order tests or not, depending on their relationships with the insurance companies or testing facilities, but (perhaps more importantly), he talks about how there's no incentive to just sit and talk with the patients anymore (even considering non-financial incentives).

    Everyone's looking for a quick fix - a test or a drug. Patients do as well, though I personally think medical advertising has a lot to do with that.

    I'm sure we could talk about it all day!

    I feel I should mention that we are very pleased with the medical care our children receive and I have never had any problems with my current OB. There are good doctors out there who aren't rushing to test or prescribe. We just have to help them follow their good instincts, right? Also, the screenings that are the focus of this book are usually recommended for groups that are older than Kansas Dad and I are, but it's the kind of topic that is good to start considering earlier.

    As for reading...well, I read a lot while the kids play, especially when we're outside. Now that Second Daughter isn't constantly trying to kill herself I feel safer taking my eyes off her every once in a while. I've also been reading a lot more to myself lately, now that we've "finished" school for the year and First Son is reading aloud to himself and the girls off and on all day. I figure we're all reading and I don't have the energy to push my own agenda as much. I'm too tired to bake or clean as much as I do when I'm not seven months pregnant, too; reading takes less energy and I can keep my feet up.

    A really big change for me to increase reading was moving Second Daughter to a crib in the kids' room at night back in January. I could snuggle in bed and read before going to sleep for the first time since she was born! I know it's a better way to spend a few minutes before bed than using the laptop, so I try to do that as well.

    I also read really quickly. I forget that, because Kansas Dad is so much faster than I am, but I am probably faster than a lot of people. That doesn't mean I understand everything as well as I should, or think about it as much as I should, but you wouldn't notice that as much on the blog because I don't write long reviews for all the books I read. I also have mad concentration skills. I can sit next to the kids and read while they watch their video. (Kansas Dad will attest this skill is not always a benefit for a mother.)

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  3. We have had so many discussions about medical care lately too. Not so much around testing per se, but more about how it is so impossible to become an informed consumer--nobody can even tell you how much anything will cost, so how can we possibly "comparison shop" for services? I've also been pleased with our pediatrician, who actually discussed with me a major study regarding the validity and accuracy of jaundice testing when he was monitoring Gideon as a newborn.

    I can also appreciate that you read while the kids play (I'm more often knitting, which for me at this point requires less attention than reading would, but I've certainly been known to pull out a book when things are calm). Sometimes I feel guilty I'm not down on the floor playing with them more, but then I read about "mother culture" and "masterly inactivity" in a CM book and remember that I'd actually be doing us all a disservice by interfering in their play all the time. I certainly wouldn't be coming up with some of the really creative things they do.

    I can also appreciate the comment about second daughter no longer "constantly trying to kill herself." It's been nice lately to not have a toddler in that stage, but It won't be too long...

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  4. Hilary, I know what you mean about comparison shopping. The estimates for Second Daughter's birth were outrageously higher than what the hospital actually billed after she was born. Insurance companies aren't any better. They claimed they couldn't tell me what the negotiated rate was for the hospital. Apparently, no one knows anything until after you're billed.

    Cross-stitching would require less thought than reading, but all those pretty colors are way too attractive for little ones. And I can't ever stitch when I'm pregnant anyway because it aggravates my tendonitis too much. One day all my kids will be old enough for me to stitch while they're awake...I'd probably be better off relearning crochet or knitting, but I'm not anxious for another hobby just now. I do get down and play with the littlest ones a bit when I'm not pregnant. Second Daughter is just old enough to follow the others around and convince herself she's playing along and she's learning a lot about entertaining herself with puzzles, blocks and Wedgits.

    We'll be just a few months behind you and Gideon with Fourth Baby. As long as there are little ones still coming, life seems to just cycle through brief times when I'm productive.

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  5. Oh, we've been very happy with the doc to whom we take our children and also my OB. No complaints actually, and I've referred a handful of people to both docs due to this. But I feel, also, that my husband and I are very "informed consumers" when it comes to our health and the health of our children. I think too many people out there are way too willing to blindly follow without doing any research or thinking for themselves, and this aggravates me greatly.

    I am very excited for the days when Kolbe is old enough to be a playmate for Gemma. Not that I want to wish his babyhood away, but I just know it will be so good for both of them! I am blessed that they are but two years apart, and look forward to adding more little playmates to the group, God-be-willing.

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  6. Monica, I think some of the problem is the belief in the doctor as an all-knowing "expert." For better or worse, Kansas Dad and I know that's not true.

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Comments make me happy; thanks for speaking up!