Saturday, July 14, 2012

Checking in and thoughts on mammograms and preventative health

I've been lurking mostly around the web, although I'm still on twitter.  For the last month I've been keeping busy with my son, who is on summer vacation, and dealing with the anxiety that comes from having an "iffy" mammogram, then a "suspicious" mammogram, and finally a biopsy.  I owe at least one person an email; I've been more scattered, I'll admit it - I'm sorry.

I would like to make my experience of the last month a Piece of Advice, but I'm still trying to sort it all out.  For my women readers, I'll say this: there is clearly a boatload of money in mammography and breast health. Women are told to take preventative measures with their health, including regular breast checks and pap smears.  I've always been one for preventative measures - they are all about self-preservation, after all.  But a system that tells patients they have to have routine tests and then from the results of the tests that cancer is a small possibility, knowable only if a large amount of money is spent on further tests - that would seem to be a system with built-in opportunity for fraud and advantage taking.

It turns out I don't have cancer, and I am very, very relieved and grateful.  But if I hadn't had that first mammogram, I wouldn't have gone through the emotional roller coaster of the last month, and I'm not sure it's worth the couple grand this is probably going to cost me out of pocket for deductible to know that I have tiny benign calcifications in my left breast.  I won't even know the true cost until they bill me because I couldn't get anyone to tell me how much it would be.

I received good care during my procedures, but I also got a couple of sales pitches for further cancer treatment services that made me realize that medicine truly is a business, and not simple ministration, now.  Additionally, plenty of tests are run to limit the potential for a medical lawsuit - on your dime, if you are willing.  In my case I think an equally valid choice would have been to wait another six month and monitor with further mammograms.  However, both my mother and my mother-in-law lost their mothers to early cancer, so that approach was strongly discouraged on all fronts - family and medical.

All I have to say is watch yourself, research your options, and make your choices carefully.




18 comments:

  1. Glad that the results were positive.

    On lessons, I'm torn. The evidence based doctor in me says follow the research literature (which I would look up -- Cochrane is fairly freely available).

    The Dad in me is dealing with the fact that my daughter's husband starts chemo tomorrow. And he is well under 30. So I fully understand where your Mom and your Mom in law are coming from.

    You don't know how long you have, so grab the day. Carpe Deum is not bad theology, you know.

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  2. Relieved that you are okay. Stay well.

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  3. Glad your well! People have a right to choose what works best for them, but I wish more chose what is "alternative". Not true woo woo new age BS, but what convential says is BS but has been proven with both personal experience and science, since there are people who just don'tb elieve anything that is valiadated by science. Plus, if you want to do both, you can.

    Not to sound like a sales pitch or anything myself, but if you do want articles on health, I can send em your way. I just want people to know there are many options.

    "...For my women readers, I'll say this: there is clearly a boatload of money in mammography and breast health... But a system that tells patients they have to have routine tests and then from the results of the tests that cancer is a small possibility, knowable only if a large amount of money is spent on further tests - that would seem to be a system with built-in opportunity for fraud and advantage taking."

    Yes, totally agree.

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  4. Thanks for this, grerp. Prayers and a shout out to you. Blessings.

    deti

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  5. Yay in re: benign

    As far as medical advice: It's very hard to generalize. Ultimately, it comes down to placing a monetary value on human life, which (a.) we're squeamish about, and (b.) varies considerably based on (1.) who's life it is, and (2.) how much money he has.

    But the current system, in which almost no one pays list price, and in which payment is filtered through 3rd parties, is almost guaranteed to generate expensive, poorly-allocated care.

    A better two part plan would probably be to move away from insurance, and accept that the rich will get better medical care than the poor. (If it makes you feel better: They'll still end up dead.) That would bring price pressure in from the demand side, and help to rationalize the market.

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  6. After 35 years in medicine....in radiology specifically....I will be the first to admit
    that we do a lot of unneccesary testing in
    medicine. The next thing that I will say is
    that it's almost impossible to know for sure
    which patients need which tests until AFTER
    the test results come back. In short, to find
    that one brain hemorrhage that comes from
    bumping your head on the cabinet door I have to
    do head CT's on another 1-200 patients that WON'T
    have that bleed. But if I don't scan ALL of the
    patient who have a headache, bumped their head or
    come in feeling dizzy I won't find the one that
    actually needs that CT. And if I don't find and
    treat that patient they will likely die. If that
    happens EVERYBODY involved gets sued.

    That is why we do all those tests on all those people. Because medicine is both science and art.
    We really cannot pick and choose which patients truly need the $10K workup vs an icebag and a couple
    of motrin till after we do that $10 K workup.

    If lawyers never got involved doctors and hospitals
    could actually present that choice to their patients and let them decide how much care they want
    and can afford. However the legal system doesn't work that way....which means everyone gets ALL the
    tests to make sure we have met standards of care....
    and meeting standards of care is crucial to offering
    a meaningful defense in a malpractice suit.

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  7. Did the rest of my boys send you flowers? if they didn't I'll kick their asses.

    Cpt.

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  8. A trial balloon that I'd like to air, for anybody who might be interested: Shouldn't more people just face the fact that if they want to have good and expensive healthcare, then they need to relenquish the American Dream of living in a house and instead will need to spend a lot more of their lives living in an apartment? I know this is a deceptively simple solution, but it seems to me a lot of people would be able to avoid stress over healthcare costs if they simply made the choice to live in an apartment rather than a house.
    All the best to you with your health Grerp.

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  9. I agree that modern medicine is a bit of a shake down racket...

    However, I am thrilled to hear you are cancer free! Try and look at all the money you will pay as a mini ransom. You will pay it (the ransom for your test results) and move forward with a wonderful life with your Husband and Child. Because you will have many many more good non chemo days when you are healthy to play with your son and laugh with your husband. That is what makes life good. *smile*

    I am so sorry, you went through the emotional wringer.

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  10. Dear grerp,

    You don't know me, but as a nineteen-year-old growing up in a culture saturated with things it shouldn't be saturated with, I've found your advice so helpful and so wise. Your emphasis on family life and good values has been so, for lack of a better word, lovely. In the past week or so, I've devoured what remains of your blog (I hear there was a bit of an editing spree that went on before I got here). I really appreciate the things you left up, and wish there was more!

    I'm truly sorry that you've had to go through such an experience, and profoundly relieved that you don't have cancer.

    I hope I get to read more from you in future.

    Regards,

    Flip

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  11. Glad that you're healthy and well, Grerp.

    And I share sentiments on the current state of heath care.

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  12. So glad to see that you have had some good news to share with all of us who have been concerned about and praying for you.

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  13. As a Canadian, it's interesting to hear. We don't tend to pay by the procedure, although there are still piles of costs with big illnesses. This means less incentive to push a patient to do more, but I don't think significantly less happens.
    I suspect that a lot of it involves a low tolerance for risk - doctors don't want anything developing that they could possibly have known about, and many patients want to be extra-sure.

    Recently they changed the recommendations for mammograms for Canadian women based on recent science that suggests that women without a family history are better off avoiding early mammograms. People took up protesting all over the place suggesting that the government was just trying to get out of paying for it. Heck, everyone keeps recommending self-exams just to keep women engaged, despite the utter lack of evidence,

    With your family history of cancer, it seems like screening might be worth it. I have no family history of breast cancer, and have thought it makes little sense to radiate myself young for likely low benefit.

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  14. I went through the beginnings of a similar experience--supposedly I have "dense breast tissue" so the radiologist had to be peeled off the ceiling every mammogram. I'm 45. They want me to come in every six months for a mammogram AND sonogram, all because they can't actually see what's in there very well. If I let them, I have no doubt at all they would be gleefully hacking out pieces of my breasts by now, spelunking for cancer.

    It may be irrational, but my response to this obvious racket has been to avoid the doctor entirely. There's no history of breast cancer in my family. It infuriates me that they're trying to scare me into expensive tests and procedures. I understand about lawsuits and all that but I don't see why I need to voluntarily take on my health care providers' risk avoidance duties.

    I have witnessed the cancer deaths of many loved ones. It's not something I want to experience. However, as a childless woman, I see no point in taking measures to live extra extra long. If I'm going to get it anyway, I'd just as soon sail through my forties with my hair and boobs.

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  15. Some interesting thoughts here that branch off from my general thoughts on health care. I do realize that medical practitioners have to safeguard themselves from all of the lawsuits that are filed every day. I have very low regard for people who work to win the lawsuit lottery, and it is clear that their efforts make it all much more complicated and costly to receive appropriate care.

    I guess I feel like Miss Conduct: that I was shaken down. I still don't know how much it will cost, but based on internet research (and there's almost nothing out there), it looks like I'm going to hit and even go over my $3500 deductible. Probably just on the biopsy, not including the second mammogram. So I'm thinking I'll shell out about $4K. And I never thought I really was at risk for breast cancer at 41; I just wanted to do the responsible thing. It took us a long time to save that money, and I resent feeling like I had to do this or otherwise I'd be putting my family at great risk. And having done it, my mind isn't really at rest. The nurse in the surgical room asked if I had had a colonoscopy yet, putting doubt in my mind there.

    I mean, I am glad and grateful that I don't have cancer, yes. But a month ago, before the 1st mammogram I didn't think I had cancer, and three tests later it turns out that I was right.

    I'm not trying to look at the glass half empty, but it leaves me feeling like I don't know how to proceed in future regarding preventative care.

    Thanks everyone for your good thoughts and prayers. It means a lot to me. And thanks to the Cap'n for the flower. I made it my twitter icon.

    Flip - Welcome to the blog. Yes, there used to be more; it was mostly rants. I'm trying to think positively and not get bogged down in anger or frustration. I left up what I felt was really of use. There may be more in future. I'm not sure. But thanks for your comment. It's so nice to hear.

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  16. http://davidcollard.wordpress.com/2012/04/10/on-not-having-a-government-bowel-screen/

    The more they look, the more they find, a lot of it benign. I had a kidney sonogram find an anomaly that turned out to be a benign cyst. A friend had the free government bowel screen I blogged on in the link above, and went through all the worry of a false positive, exactly why I didn't have the test myself.

    My son has benign renal glycosuria, which has led doctors to worry us about non-existent diabetes. One of my daughters had haematuria, mildly. Many tests and much worry led to nothing. Unnecessary tests, unnecessary worry.

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  17. Welcome back, Grerp. I'm glad you don't have breast cancer too. So much of medicine is an art rather than a science.

    When I was 20, I had a medical mishap for which I had to see a dentist. The doctor was in a large trendy building, which I thought nothing of at the time because he was recommended by the college medical clinic. What I got was an advertisement for a dental procedure that I did not need. The dentist's opinion of the previous work was overly harsh to the point where I had no idea what to believe.

    After consulting with the original dentist, and careful deliberation, I decided that the high-rise dentist was a scummy salesman with a DDS.

    I'm in a different place in life, but I can sympathize. I don't have a flower, so I'll send one of my better butterfly shots instead. Hope you enjoy.

    http://sphotos-a.xx.fbcdn.net/hphotos-ash4/50_549539815735_2962_n.jpg

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  18. You and all your readers really need (and I mean NEED) to thoroughly read a book called "Testing Treatments" (available online as a free PDF -- http://www.google.com/search?q=Testing+Treatments+pdf) so that you can understand two things:

    1. Cancer "screening" tests are NOT as useful or beneficial as they are claimed to be.

    2. If he or she is like most doctors, your doctor probably really does NOT fully comprehend the statistics around those tests, and will be unable to explain in plain English what a "positive" result of a "screening" test really means (you have a slightly increased possibility of having cancer), versus what it does not mean.

    If you want to dig into more, I would suggest you learn about "Baye's Theorem" and how the statistics of "tests" when used as "screening tests" on un-symptomatic patients really work DIFFERENTLY than when they are used as "tests" when a patient has symptoms -- you will then comprehend (probably better than most currently practicing doctors) what the rate of "false positives" (and "false negatives" as well as "true positives" and "true negatives") are for a LARGE population, and how little "value" those screening tests have.

    Also, if you have the time, learn about "Lead Time Bias".

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