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Lies, damned lies, and statistics

Steve Buchheit asked yesterday in comments about my prognosis.

Here’s the thing: I. Don’t. Care.

Any numbers are population means. They are valid in the aggregate, more or less, but have little or nothing to do with my my life. Unless somehow there are stats on healthy 43-year-old women who walk all the time, eat well, and have my particular combination of primary and metastatic tumors?

Yeah, I didn’t think so.

There are five-year survival numbers, but fuck them. That’s all patients, all causes of mortality, and they don’t tell me anything useful, except that not everyone dies in that timespan.

My odds of dying today are about the same as yours, possibly less if you have more urgent health problems.

My odds of dying this week are about the same as yours, too, given the same constraints.

Sure, my odds of eventually dying of colon cancer are a whole lot higher than yours, but that doesn’t say anything about “will” or “when.” Even my odds of dying in the next five years are considerably higher, but that’s probability, not certainty. And of course, when you get right down to it, we all have 100% probability of dying eventually.

I don’t have a prognosis, I have a plan. The medical part of the plan involves probably four rounds of chemo, then more scans to assess my response. At that point there will be more major decisions about surgery or more chemo, but I’m very pleased to have a way to move forward immediately. (And to have been allowed to make that decision myself after being presented with the various options.)

The personal part of the plan involves living each day as healthily and happily as I can. The tools have changed, but that’s no different than what I’ve always tried to do, what anyone tries to do. I’m not being Pollyannaish, nor am I being stupid: I have a will, I have various plans in place or underway. I could die, and I’m planning for it, but I’m also planning to live a long and happy life. (Nor, incidentally, is this bravado: I’m utterly serious.)

Coincidentally, an essay in the New York Times yesterday says much the same thing, with the wonderful added point that five-year statistics are always at least five years out of date.

Fuck cancer. Fuck the odds. I have things to do.


  1. Blair says:

    Good for you!

  2. Marjorie says:

    Good for you.

    I’m not sure that I should be able to be as sane and level headed about it if it were me.

    It also sounds (from this and your previous post) that you have good doctors who hussle when they need to.

  3. Sarah says:

    Right now it’s all science: images, tests, reports, decisions, the intellectual side of health care. I think it helps that I feel healthy: this would be a whole lot harder if I felt sick, as so many people do by the time they’re diagnosed with cancer.

    I imagine the sane and level-headed won’t be my only response, but that’s the major component so far.

    And yes, my doctors have been amazing. I need to send them a card or something.

  4. neurondoc says:

    When I was in practice I always used prognostic data gingerly and told patients to do the same for the reasons you outline. I think saying they are 5 years out of date is actually being generous, since the data are typically collected longer than 5 years before they are published. And new treatments and treatment regimens are likely not included. So, yes.

    Sounds like you have a very good medical team.

  5. Sarah says:

    I’m glad you approve (seriousness, not snark), because you have a much more informed grasp of the medical specifics than I do; I’m a wealth of general statistical knowledge, though. 🙂

  6. Hey Sarah, I guess I was thinking more of the “disease process going forward” and “the plan” rather than the survival stats (which, as you and neurondoc point out, are always out of date, especially given the progress of the last ten years). I meant no offense.

  7. Sarah says:

    Steve, I am not at all offended. This was going to be one of my next posts regardless. You just happened to give me a lead-in, thanks.

  8. valerio says:

    Here here herr Doktor

    Unless the number is 0 or 100, then it is fairly irrelevant on a person’s specific case.

  9. Broom says:

    Thanks for making this blog. Helps me to feel closer.

  10. Weirdly, I think you’ve said precisely what Stephen Jay Gould did when he got his cancer diagnosis.

    (Here’s his essay, which I remembered from when I listened to all his books on audio: http://www.stat.berkeley.edu/users/rice/Stat2/GouldCancer.html

    He also quotes Mark Twain in his essay. 🙂

    He also states what you have: ” Attitude clearly matters in
    fighting cancer. We don’t know why (from my old-style
    materialistic perspective, I suspect that mental states
    feed back upon the immune system). But match people
    with the same cancer for age, class, health, socioeconomic
    status, and, in general, those with positive attitudes, with
    a strong will and purpose for living, with commitment to
    struggle, with an active response to aiding their own
    treatment and not just a passive acceptance of anything
    doctors say, tend to live longer.”

    From that time, I also listened to Bill Moyer’s audio version of the Mind Body connection, and he also found something similar.

    Cancer isn’t something you can fight with your mind alone (you well know this, but I wanted to state the obvious, for those who don’t know me and who might have thought I was being a proponent of woo-woo) but your mindset does affect the course of the war.

    All of which is a roundabout way of saying, “kick ass and take names and wipe out all those bastard cancer cells.”

  11. Carol Elaine says:

    That’s the thing: all the averages and prognosises (prognosi?) in the world can never tell you about your specific case. I know someone whose wife has been battling cancer since 2006. While it was caught pretty early by a mere fluke, it’s a particularly aggressive form of ovarian cancer. According to averages and statistics, she should’ve died back in 2006 or 2007. She’s still around, fighting and kicking and very, very alive. She’s gone into remission and out again several times, but she’s now at the point that no one dares to give her or her husband a prognosis because, really, what would be the point?

    On a smaller level, my cat Edison was diagnosed with multiple myeloma in May 2012. He was given six months. It’s over a year and a half later and he’s still doing well, for the most part. A few bumps in the road, but man, he’s still a feisty senior kitty.

    I have no doubt that, as Michelle says, you’ll be kicking ass and taking names and wiping out all those bastard cancer cells. You are one strong, bad-ass woman, Sarah, and cancer is going to be sorry it ever messed with you.

  12. Anne says:

    You remind me of a friend whose child had a disability. People would ask about the prognosis, if she’d be able to walk, and so on. What did the doctors predict?

    The mother said she didn’t want to know. That would be, at best, an educated guess. She was afraid that, if they underestimated what she could do, they might stop pushing too soon, thinking they had achieved everything possible when they had not. OTOH, if the doctors overestimated, it would be extremely frustrating when the child could not, in fact, accomplish something she’d expected.

    20 years later? The young woman, in fact, cannot walk – but she’s a world class wheelchair athlete. The energy all went into finding what she could do, which turned out to be a great deal, instead of concentrating on a preconceived idea – or a limit. Who cares what the typical person with her disability can do? She isn’t the typical person – there really is no “typical person.”

    It is wise to remember that.

  13. Janiece says:

    I love and admire you without end.

  14. Sarah says:

    Janiece, considering how I feel about you that means a lot.

  15. Broom says:

    Not meaning to be a downer in any way, but I’ve heard data that contradict’s Gould’s: attitude matters very little, if at all.

    However, since he included add-ons about proactively consulting with doctors, that muddies the data a bit. A reasonably intelligent person communicating with the medical team improves the chance of important details being addressed ASAP, and also leverages power back into the patient’s hands (where it belongs).

    Also, given a choice between having cancer AND a can-do, fuck-you-cancer-I’m-gonna-lick-this-thing attitude, versus having cancer and feeling doomed and helpless… whether one has 5 minutes or 50 years left, I know which attitude I’d rather have.

    Sarah + information = Superwoman. We already know that. And since kryptonite can’t think, she’ll win this battle, too. At least, that’s what happened every time in the comics I own.

  16. Sarah says:

    Broom, as it happens, the latest information suggests that attitude makes little difference to ultimate outcome, but a HUGE difference to quality of life.

    Engagement with the medical process, as you note, is rather important.

    Superwoman? You’re just trying to get me into a skimpy superhero outfit.

  17. Broom says:

    1. SCORE! My data wins! IN YOUR FACE, GOULD! … ahem.

    2. Is that wrong? Should I not have done that? More importantly… is there a chance it will work?