A Word About My Breasts
Can we talk? I've got something on my chest.
Count me among Kate's colleagues who are flummoxed by this report. I think it proves that even scientists can be pinheads. My issue is not with their recommendations on when and how often women should get mammograms. That seems worthy of debate. What I don't get is their finding that women should not even do self-examinations. And why? Because if we find a lump, it might make us worried. Congresswoman and cancer survivor Debbie Wasserman-Schultz was right on the mark when she said this represents a "very patronizing attitude that these scientists have taken…It's pretty outrageous to suggest that women couldn't handle more information.”
That got me thinking a bit about my own history, which on one level might seem to vindicate these findings. I'm a cancer survivor; it has been almost 22 years since I was diagnosed with thyroid cancer, which required surgical removal of my thyroid, followed by two years of radioactive iodine. I was lucky, especially given the fact that the lump in my thyroid had been there for eight years, misdiagnosed as benign.
But breast cancer was my first big scare--at age 19, when I discovered lumps in both my breasts that didn't go away after a couple of menstrual cycles.
That's when I had my first mammogram. Back in those days, the technology wasn't what it is today, and it was inconclusive. My doctor decided he wanted to do a biopsy. That wasn't what it is today, either. A simple breast biopsy in 1975 required me to check in for an overnight stay in a hospital, and to sign forms before the surgery authorizing a mastectomy on the spot if it turned out to be cancer. I remember vividly waking up from the general anesthesia terrified, feeling the heavy layers of bandages trying to figure out what they had done. It was benign--thank God--but it turned out to be the first of several times I would go through this drill, because I have lumpy breasts. The fancy name for that is fibrocystic disease.
At the time of my first breast biopsy, I had no family history of the disease. I subsequently developed one. Over the years, my mom was diagnosed with breast cancer (and survived it); my aunt was too (and didn't). I've had a number of scares, but none, thus far, has turned out to be cancer.
So it would seem I'm the perfect example of a person who shouldn't have had mammograms, or even examined my own breasts. But am I sorry I've had the information I've had through mammograms and self-exams? Not for a second.
That's why I think these scientists are pinheads. Pink ribbons are lovely, but women who want information should have it. And I would remind Swampland readers of the important lesson we all learned from Carly Fiorina. Information is power, ladies, and don't let some scientific panel tell you it isn't.
UPDATE: I'm not alone.
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1
Is there a money issue here? Sure, some women under 50 might die, but look at the savings!
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1.1
Everyone is confounded about what is good, and what is right; because we are trying to cure something that is killing us in increasing numbers, radically crazy numbers. And we aren't searching for why.
We are at the mercy of the drug companies. Instead of researching why we are getting cancer so much, as a civilization; what is causing this in ever increasing numbers, and tortuous "remedies" in attempts to save lives.
Because we are a nation built on free commerce, we are spending lots on seaching for cures, even as the numbers of people who get cancer increases steadily. We promote acceptance of the disease, if you have it; and accepting others that may become sick.
We argue over mammograms because we don't know if they are good, or bad. Or nothing at all.
I don't think anyone should just accept that they have cancer. I don't think anyone should accept when a family member has cancer. I think we should all stop, write letters, do anything and everything to demand that the drug companies and the doctors who make so much money on all these people dying. I am not against "finding a cure" or finding the best methods, at all.
I am just simply for finding out why there is so much cancer. And why it is only taking more and more people.
Are we, or are we not, getting chewed up, and dying, because of a system that is profiting from people being sick with cancer in the first place?
I think we should require drug companies, insurance companies, anyone who makes money off of cancer, to put much of that into finding out why it exists, where it begins and setting out to obliterate it, one step at a time.
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1.2
The debate over detection and treatment are fine and all, but I'm going to have to go w/ dfkljk on this one...why isn't more time and money being spent on discovering WHY we get cancer in the first place??
My guess is, it's because there isn't as much money in it, and the 'wrong' people might get their toes stepped on in the process. The people to whom I am referring are those in agribusiness who've convinced us all over the years to eat more refined sugars and carbohydrates, and that 'low-fat' diets are the healthiest ways to live.
It's all garbage. Unless you're eating locally-grown seasonal produce, and meat from pasture-fed animals, you're poisoning yourself from the inside out. Simple.
With a 'western' diet comes western disease - cancer, heart disease, diabetes, obesity...
But heaven forbid we tell people they can't have their McDonald's and Diet Coke...no, no - that would be communist.
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2
Here is a different prespective.
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Q: How much of a concern is the risk of radiation from mammograms? By the way the blog is acting weird.
.A: Radiation causes 1 death for every 2,000 women screened annually starting at age 40, according to a study published in 2005 in the British Journal of Cancer. Another study shows that each mammogram increases the risk of breast cancer by 2 percent. Mammography also saves women's lives, so that's why it's a trade-off.
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Q: What about self-exams? They certainly have no risk of radiation - what is the downside of continuing to do these?
.A: Three large randomized trials - of over 5,000 women - with follow-up between 10 and 16 years showed no decrease in deaths. I tell all my women (patients), if you feel a lump, call me immediately, but I don't think we as doctors should be encouraging self-breast exams. And there is evidence of harm. Women who do self-breast exams get twice as many biopsies.
.Read more: http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2009/11/18/MNLT1ALVJA.DTL#ixzz0XGHRFcKP
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3
It is well documented that Humans are really bad at thinking about statistics. That's part of the source of the dissconnect between how the 'scientists' are viewing the question vs how potential patients are. At the same time, I'm a firm beleiver that there is no such thing as too much information. Did the good Dr's factor in the peace of mind that a negative result helps bring? Quite doubtful.
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4
Another thing missing from this debate is that our pharma companies have in the passed pushed drugs on women that have promoted the development of breast cancer.
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Some women who reach their middle age enter a stage of life called menopause. Over the last 60 years, millions of women have received menopausal hormone therapy to relieve symptoms of menopause which are sometimes felt as “hot flashes.” Through the 1970's, menopausal women received estrogen to combat those symptoms. Premarin, manufactured by Wyeth Laboratories from pregnant mare's urine, was the nation's leading menopausal drug. But in the 1970's, doctors learned that Premarin caused endometrial cancer. Predictably, sales of Premarin plummeted, as woman appropriately stayed away.
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Only a few years later, however, Wyeth learned that if women combined estrogen with another hormone called progestin, the endometrial cancer problem would disappear. So, to revive its failing drug, Wyeth told woman and their doctors that if they took the combination of Premarin and a progestin, they would not develop endometrial cancer. Moreover, Wyeth told the public, this “combination hormone therapy” (estrogen and a progestin), would also provide added protection to their heart, their bones, that it would help prevent Alzheimer's disease, depression, and increase their sexual vitality. In the mid-1990s, Wyeth turned the combination of Premarin and a progestin into a single pill, called “Prempro,” and promoted it to women as the Fountain of Youth. Wyeth, however, had no data to back these claims up.
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In July 2002, a federal study revealed that long-term use of Prempro leads to increased risk of breast cancer, heart disease and strokes. This study, called the Woman's Health Initiative (WHI), showed doctors that virtually everything that the pharmaceutical companies had been telling them about the benefits and risks of Prempro was wrong! The WHI study concluded that the RISKS of Prempro outweighed its benefits, and urged woman on the study to stop taking Prempro immediately.
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Wyeth scurried to change its warning label, but for thousands of woman, it was too late – they had tragically developed breast cancer, and their lives forever changed. A breast cancer epidemic had been created.
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The drug companies had created a “conventional wisdom” that pushed physicians to prescribe hormone therapy to women who did not need it, where safer alternatives existed. The WHI brought to light Wyeth's failure to test its products and warn woman and physicians about the true risks.-
4.1
gysgt213 thank you for this, as up until now I did not know that the drug company had mislead the doctors and had nothing to back up the claims. They really played up the fountain of youth and what woman does not want to stay young.
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4.2
Thanks Gunny, for reminding us of this other piece of the puzzle.
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5
Thanks, KT. I'll be honest, mkay, you had me at the title (couldn't resist) but you do get your points across (couldn't resist that either). But seriously, many people do get cancer at earlier ages, so I'm wary of the panel's findings. We need to pay attention to our own health / backgrounds and not blindly rely on others. Do you think there are hidden political / cost agendas as Kate ponders, blind reliance on statistics / abstract stuff, or even more stubborn stereotyping (than mentioned in first / last paragraphs)? Of course, insurance cos. no doubt would “really love” to pay for more cancer screenings, treatments, etc. / NOT. I'd be po'ed if THAT's now part of the equation here (literally). Thoughts, KT?
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…and thanks for your lemon pound cake recipe; equal thanks to Amy. I'm going to fix the pound cake this weekend followed by the cupcakes.-
5.1
I'll be honest, mkay, you had me at the title
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Oh come on, man.
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6
This is yet another perfect illustration of how backward American thinking has become with regard to technology, medicine, and risk assessment.
I'm with PD. The more information the better. I don't deny that, using existing technologies and techniques, there may be false positives, unnecessary treatment, and excessive exposure to radiation. But the answer is not to stop performing mammograms, stop self-exams, and generally concede the harms. An answer is to develop less invasive tests that are more accurate and precise. An answer is to work on better communication procedures between doctors and patients. An answer is to develop better risk profiling so that fewer unnecessary biopsies are ordered.
BTW, I find it mildly ironic that KT, who has uncritically parroted the "fewer MRIs and CTs is the answer to rising radiology expenses" line, now finds herself realizing that less is not always more.
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7
"I'm with PD. The more information the better. I don't deny that, using existing technologies and techniques, there may be false positives, unnecessary treatment, and excessive exposure to radiation."
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Square-I agree with everything you, PD and KT. But I would also add everyone needs complete information. There was a study a while back that said men were having prostrate surgery when they would never lived long enough to die from prostrate cancer in the first place. I would also add that we need more money spent of finding out what the heck is causing all this cancer in the first friggin place.-
7.1
Prostate cancer varies widely from patient to patient in its virulence. My father was diagnosed with prostate cancer in his early sixties and lived to 93, dying when his heart gave out. It never occurred to him or any of his physicians that he needed any treatment for the cancer, which was so slow-growing that he could have lived to 120 and still died of something else.
I, on the other hand, was diagnosed at age 60 with a particularly aggressive prostate cancer and had surgery almost immediately. My surgeon, a modest fellow (as surgeons go), told me that he had saved my life, and I continue to believe him almost a decade later. A good friend of mine, whose cancer is even more aggressive than mine was, is less than fifty-fifty to survive five years even though he has had every respectable treatment available.
In short, with prostate cancer (and, of course, breast cancer), every patient is different. Development of broad policy inevitably requires reducing large numbers of patients to statistics, but it doesn't require that we regard them all as the same. People need doctors to guide them, doctors who know the patient and know what to do with the actual illness confronting them. This country needs to ensure that the people who need these doctors get access to them. Okay, it's not quite that simple, but shouldn't that be the goal?
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8
Karen,
My story is very similar. Mammary infections in my teens, first biopsy in my early 20s, a series of biopsies over the years, fibrocystic thickness and scarring, my mom had breast cancer, and my last lump which I found through a self-exam, turned out to be abnormal cell growth.
That was the last straw. I had a prophylactic mastectomy with a beautiful reconstruction, and I've never regretted my decision.
These guys are crazy. I've met a lot of breast cancer survivors along the way, and I can't tell you the number of women who found their cancerous lumps themselves.
What's next - telling women not to check their skin for possible skin cancer lesions because they can't handle it?
Sexism, I'm afraid, will never die.
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9
Being worried and winding up dead aren't in the same ballpark. Only listen to your doctor if they have something sensible to say. Consider me the public option. I give free exams.
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10
Ok, this isn't a 1,000 words thread? I feel cheated.
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11
Swampland ate my comment. Feh.
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12
Why are men dictating the terms of women's health care? The ladies are quite capable of choosing for themselves what protocols to follow. The Conservatives are always screaming about freedom, how about freeing women to decide for themselves.
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13
Paul really nailed this with his post of peace of mind.
I also agree with Square1 on developing new tests, and gysgt213 with more information to patients.I cannot see a woman that has found a lump that would not want a biopsy. We do not like having mammograms but we know that they are the best chance of finding breast cancer. We do do not like having Pap Smears, but do it because right now this is the best way to find cancer. This does give us some peace of mind.
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14
The reaction to this panel proves that women are better organized than men. The reaction in the breast cancer community is entirely appropriate. I am a physician who treats a lot of prostate cancer. Similar panels have advised men that they should not be screened for prostate cancer because you are more likely to die with it than you are to die of it. The argument for men is the same as in this case. It is too much time, anxiety, and expense for a lack of proven benefit. These are two tumors that give cancer its' bad name and each kills more than 24,000 people each year. I get screened because I believe that knowledge is power and if I choose to ignore the problem, I want to know as much as I can about the problem I am ignoring. When an insurance company tells me that it is not cost effective to save the lives of the more than 1000 women diagnosed with breast cancer under the age of 50, it is time to rewrite the rules. One thing to remember in comparing our results to Great Britain is that a pound saved in Liverpool not screening for cancer is a dollar that will be spent on pre-natal care or immunization programs. In East Liverpool OH, a dollar not spent on cancer screening is a dollar that Aetna can divert to stockholders or a Senator's campaign. Which nation has the ethical high ground?
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14.1
I agree that women are better organized than men. I would also argue that "women's intuition" is something that you ignore at your own peril. I trust my wife's judgement better than I do my own.
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15
Karen,
I'm flummoxed by the irrationality of your post. You are entitled to think all you went through was worth it, but it's unreasonable to start insulting those who spend a bunch of time looking at the numbers and suggest that all your avoidable troubles objectively led to nothing useful.
For those dwelling on the knowledge or information aspect, I'm all for knowing things: there's no knowledge I wouldn't want to have if the only cost was the burden of that knowledge. That principle does not justify cutting off my arm to find out what it's like not to have an arm. And if you throw in a "don't tell me what to do" attitude problem with that, you're asking for a patronizing response.
- Jan
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16
"When an insurance company tells me that it is not cost effective to save the lives of the more than 1000 women diagnosed with breast cancer under the age of 50, it is time to rewrite the rules."
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You are right of course (in my opinion), but!
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But!
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Isn't this the very definition of a "death panel"? I thought that only HCR bills put forward by Democrats had them. You wouldn't seriously be suggesting that the insurance companies have had them all along, would you?
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Thought not... -
17
It's hard to determine, following your link to Kate's link, exactly what the math is behind their determination. Maybe they've overlooked something; maybe they haven't. What if there are 50,000 unnecessary biopsies for every life saved based on self-examinations?
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I don't know the answer, but it's hard for me to reject this recommendation out of hand.
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But then, I'm not female. It's admirable of you to share your experience. And you may well have the better of the argument-- statistics-wise, and otherwise. -
18
KT:
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Could you please clarify?
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It seems that thisMy issue is not with their recommendations on when and how often women should get mammograms.
and this
So it would seem I'm the perfect example of a person who shouldn't have had mammograms... But am I sorry I've had the information I've had through mammograms...? Not for a second.
Leaving out the self-examination part, can you please help me understand what you mean, and reconcile those two statements?
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You're fine with their mammogram recommendations, although they might be debatable, you're just saying that they're wrong about their mammogram recommendations?-
18.1
Fair enough. I'm not fine with the mammogram recommendations, but I understand this is worth debating. There's got to be some cutoff age, and whether it is 30 or 40 or 50, I don't know. In my case, my family history would make me a candidate for early screening, but interestingly, I didn't HAVE that family history when I had my first biopsy.
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What is not worth debating is their goofy recommendation that women should NOT examine their own breasts. Simple common sense says that if you have a lump in your breast, you should know about it, and your doctor should, too. You should have the conversation. In my case, we have sometimes come to the decision that it makes sense to wait (docs have told me that a cancerous lump typically feels like "a marble on a carpet"), sometimes I've gone directly in for a mammogram, and in one case, I went in for both a needle biopsy and then a surgical removal. It has also given both my doctor and myself a better understanding of what my breasts are like, which is prone to developing lumps.
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I also think patients should be the ones to decide WHICH risk they want to live with--the risk that comes with the additional exposure to radiation, or the one that comes with failure to screen. This is where comparative effectiveness research could be helpful for a lot of us. Docs have told me (to use a male case) that if you explain to most men the pros and cons of intervention for some types of prostate disease, most end up deciding they would rather have some difficulties urinating than some difficulties having sex. But it seems to me it should be their decision. -
18.2
From gysgt's link, Karen, here's the logic behind not recommending self-exams:
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The USPSTF's recommendation not to teach breast self-examination (BSE) is another point of controversy. Despite a lot of enthusiasm for the practice, Cochrane Reviews and other evidence have failed to find convincing evidence that routine regular BSE saves lives. I wish it were otherwise, but it appears not to be, even though there are compelling anecdotes out there of women who did find a lump on BSE and it turned out to be cancer. Unfortunately, overall, the evidence to support BSE is weak. -
18.3
KT:
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Thanks so much for clarifying, I really appreciate this response.
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I'm reserving judgment until I understand the facts better.
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I think that a fuller explanation of the facts of this story is warranted (especially because of the kind of responses it engenders, and the potential for political exploitation), don't you? -
18.4
Sorry, KT, just one more thing:
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If a woman who regularly performed BSE had the kind of tissue that you do, and every time she found something, she scheduled a doctors visit, wouldn't she essentially be a gold mine for the kind of fee-for-service exploiting medicine practiced by some doctors, clinics and hospitals of which you and Kate Pickert have written?
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If the response nearly every time from the medical professional scheduled to deal with this BSE-performing woman was to immediately get her out of the door into mammography, wouldn't that fit the pattern of health care found in Atul Gawande's McAllen TX (link to "The Cost Conundrum" New Yorker piece)?
Wouldn't that woman walk away from the experience relieved, because she would have "had all the tests" that proved she didn't have cancer? Wouldn't the cycle repeat itself?
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I guess what I'm asking is if you can put away your desire for this report not to influence women to stop examining themselves for a few moments, and can you look at this study in terms of the fee-for-service problem you've been reporting on?
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This isn't an agenda-driven question, KT, I just think that it's worth examining, so to speak...
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19
What I don't get is their finding that women should not even do self-examinations. And why? Because if we find a lump, it might make us worried.
Your post is really kind of useless since it rests entirely upon this particular mischaracterization. As diligently pointed out by gysgt213 in each of these threads (and consequently ignored), self-examination has zero net benefits. It is NOT because "it may make you worried," it is because doctors explicitly requesting you and all women to do these exams results in:
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1) Unnecessary mammograms, which ironically increase your chance of getting breast cancer from the radiation.
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2) Twice as many unnecessary biopsies, which are still surgeries and carry all the risks of such.
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You continue touting these personal anecdotes as if it somehow supports your (misguided) argument that the scientists are "pinheads." If you want to continue doing self-exams, knock yourself out. There is just zero point to continue pushing doctors to spread misinformation about the benefits of self-examinations. It does not improve your survival rate - it simply increases your risk of dying from radiation and unnecessary surgery. -
20
Here is a blog that makes a serious attempt to explain these recommendations. I think as usual there is a lot not understanding this clearly.
.http://scienceblogs.com/insolence/2009/11/really_rethinking_breast_cancer_screenin.php
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21
Interestingly, the last time I found a breast lump - just a few days before a scheduled mammogram, as it happened - I was ushered in for an ultrasound immediately after the mammogram. When I consulted with my breast doctor of choice after the ultrasound she told me that my breasts were wonderfully transparent, that there was virtually no chance that cancer would not be picked up in a mammogram - and that I should stop doing self exams but continue to get a yearly mammogram (I'm well over 50).
The point here was that a doctor decided what I should do, and it made sense to me. It sounds as if doctors would have continued to advise you to get mammograms in your 40's, KT, even with these recommendations.
Gunny says the increased radiation results in one more cancer case in 2000 women for those screened beginning at age 40. I'd also heard (haven't confirmed this) that screening from age 40 to 50 detects 1 cancer case in 1900 women. So you have a roughly equal chance of causing 1 case and finding 1 case. This is not a rational basis to continue universal screening.
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22
Another way to look at this is to recognize that women in their 20's and 30's also get breast cancer, but no one has recommended universal screening for women in these age groups.
Dr.Susan Love said that these new recommendations point up the truth that we ought to be spending more time, energy, and money in searching for better and safer ways to detect breast cancer. One of the reasons for the hue and cry over this is surely that mammograms have given women a sense of security in knowing that they aren't developing breast cancer. But that has perhaps been a false sense of security, given that there are false negatives as well as false positive. So it might be better to put our resources into developing better screening technology.
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23
Thanks, KT.
What has been the most perplexing thing to me is the info about self exams or even doctors doing hands-on examinations of the breast during annual check ups.
I watched the Newshour on Tuesday, with Dr. Otis Brawley (from the ACS) and Dr Diana Pettiti, who was on the panel.
Though they disagreed about mammagraphy, they both stated that self exams were not necessary. And then Dr Brawley seemed to contradict himself by saying women should feel for masses on their breasts in the showers. Gwen did not follow up and ask him to clarify.
So I agree. Prevention guidelines are as clear as mud. And the kneejerk reaction of Congress seems to be to make political hay of the report.
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24
Apparently, I'm not alone here:
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http://www.theatlanticwire.com/opinions/view/opinion/Are-the-New-Mammogram-Guidelines-Sexist-1653-
24.1
My mother and her mother both died of breast cancer. As the son I worry for my sister. A link to a useful UK site on mammograms is included:
http://www.cancerscreening.nhs.uk/breastscreen/
Perhaps a less OReillyish derogative i.e. "pinheads" and a more imaginative one could be found for these well-intentioned medical practitioners. Senile-geezers-posing-as-doctors or lame-brained quacks come to mind.
Best Regards
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25
Nice blog
I promised I would surf over and say "hi" after the cross country dinner the other night, so "hi".
I tip my stethoscope to your blog/talents, etc...
... And since everyone else seems to be posting their opinion on this issue, I guess I shall do the same.
My own views on this issue tend to be a little more nihilistic- e.g. there is no "right answer". I say this only because I see the validity in many of the different conflicting viewpoints and recognize we all come at the issue from different values/morals/starting places.
When I look at this issue from your viewpoint, I certainly agree. When I look at if from other's viewpoints, I might not... Or perhaps I should say that while I agree with your view, I might still subordinate it to other priorities that might be a higher priority to me. And the "best fit" solution I ultimately arrive at represents my own classic engineer's dilemma- balancing various costs and benefits and measuring these against my personal values/morals.
FWIW I do not think we have nearly as much agreement on these values/morals as a nation as I sometimes think the press suggests we do. Nor do I think there is enough honest insight into other people's value systems to see that other ways of building the proverbial moral bread box work just fine.
And so it is like the Peloponnesian war- who was more correct, Athens or Sparta?
... Indeed if you think on it, the dilemma in health care policy in many ways mirrors the changes happening in the media. Remember our discussion on viewpoint bias and how readers have moved to "comfort zones" which reinforce what they already believe?
The health care debate seems similar to me and this post on breast self exam policy is like a further microscopic mirror of this same issue- viewpoint and morals.
Please remember that in life, as in medicine, as in economics, as in government policy, etc... everything is always related to everything else- I think physicists call these complex systems. Trying to address something as intimately as health care which affects all of us every day in a myriad of ways without discussing morals and thinking there is a right or wrong answer seems epistomologically wrong in so many ways- at least that is how I see it.
A broader moral discussion needs to take place simultaneously and sadly this is the issue no one seems able to seriously touch as sadly few even seem to understand that personal morals systems are just that, personal, and ours may not be the best way to build the proverbial bread box.
Yet it seems that unless we do this, reforming health care/health care policy in isolation is just more "I win, you lose" zero-sum. The variety of viewpoints on the breast cancer self examination screening policy discussion you have generated seem to illustrate this well.
Anyway, I ramble. It was nice having dinner with you the other night at Guapo's. I do hope next year's x-country season is even more successful.
Best regards
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