Mammogram ruling backlash: Shock, anger, and vows to ignore the new guidelines
I expected the stories, told by breast-cancer survivors whose tumors were found by mammograms in their 40s or even their 30s. Whenever a major health recommendation is released, we tend to focus on the human stories, especially those whose lives were saved – or lost – by something relevant to that day’s news.
And I expected that there would be differing opinions. But I didn’t quite expect the level of backlash from doctors, hospitals and major health organizations, many of whom are saying they will ignore the new guidelines altogether.
Those guidelines, released by the U.S. Preventative Services Task Force on Monday, recommend that women have mammograms beginning at age 50 rather than age 40; that they have them every two years, instead of annually; and that doctors lessen their emphasis on breast self-exams. The group, a federally sponsored task force that provides guidance to doctors, insurance companies and lawmakers, said that while mammograms do reduce breast cancer deaths in the 40-49 age group by 15 percent, that number is not high enough to warrant screening every woman in that age group.
"I am that one woman who got saved because I had a mammogram at age 40," Laura Scanlan told the San Francisco Chronicle. "I can't believe it's not saving a lot of women. It saved me. If a certain number are saved, isn't that good?"
At 46, Scanlan is cancer-free. Under the new guidelines, she would not be due even her baseline mammogram for another four years, unless she was in a high-risk group of women who tested positive for the breast cancer gene or who had family history of the disease.
Stories like Scanlan’s were common yesterday (if they can ever be called common). There were also many examples of women who had found their breast lumps through self-exams and balk now at the task force’s suggestion that they aren’t important.
I am 51. Among my circle of friends and acquaintances, I know four women who have had breast cancer. Two were in their 30s; one in her 40s; one was 50. None had a family history of breast cancer. All four had surgery.
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Great post, Diane, thank you!
I'm not terribly worried about these new guidelines. I am 39 and have had many mammograms because of my family history and it's scary to know my mother had this at my age and was already terminal.
Being from Europe, I'm familiar with how things work there and in general, they do not test as much and as often as we do here in America yet the results are comparable and survival rates are similar. We in America are very quick to order tests that may not be necessary and cost a fortune.
I am not sure if I'll get another mammogram next year, especially if I have to pay for it myself now but will every two or three years. Self exams are crucial.
I think my problem might be that I'm a bit jaded with one study telling us that the last study was wrong. We used to have to get pap tests every year, regardless of the outcome. Now it's every two or three years. Mammograms are now changing too and it seems like at least once a month, we're told that standard testing is no longer needed because they ultimately don't procure higher diagnostic or survival rates.
Breast cancer is something I know I may have to face in my future, although it's something one in eight will, and most of those one-in-eights will have NO family history of breast cancer.
I have been watching the outrage on the news networks and news blogs, with accusations thrown from both sides. For some reason, despite my family history, I'm not worried. I read an article somewhere on women being at risk if their mothers had untreated breast cancer when pregnant with them (I fall into that category) and again, I read, I take note but it doesn't cause me stress. Maybe I'm too lax but all I can do is stay as healthy as I can and take precautions and be aware of my body. All women should do that, especially since the majority of women who will get breast cancer will have no documented family history of it.
Thanks, Diane, for this lucid and objective posting. Personally, I'm very irritated by the study and recommendations. My breast cancer went to Stage 2 in one year, so waiting another year for a mammogram would likely have resulted in metastisis to lymph nodes or worse. Like you, I have friends who are alive because they were consciencious about annual mamms and/or self exams. I can't imagine a single one of them that I would sacrifice for the sake of cost-saving.
What makes me angry is that, by discrediting self exams, these respected scientists are recommending that women take LESS responsibility for their health, not more. It has taken us decades to empower women on health matters and this seems like a throw back to the dark ages.
And, with the disproportionate increase of breast cancer in overweight women and with obesity on the rise, what does the trend line look like? Were these conclusions made on historical data or factoring in the projections of newly diagnosed breast cancer in women carrying extra weight?
Finally, I think the recommendations are another example of "flash in the pan" reporting, that urgency that some scientists feel to publish their brilliant discoveries without fully understanding the effect on those affected.
Thanks for opening the debate.
Annette,
I completely agree with you on the issue of self-exams, and I believe that even if the new mammogram guidelines are never followed, Monday's announcement has done a lot of damage.
I already had one woman say to me, "Good, I never did self-exams anyway."
Argh!
Hi Diane - Plain and simple: following the new guidelines will cost women's lives. The numbers that were used to formulate the guidelines don't support the recommendations, nor does the real world knowledge of patients and healthcare providers. I'm not saying the old protocol was perfect by any means since the over reliance on mammograms to detect breast cancer also creates problems. What's really needed is a calm, rational, informed approach to developing the best guidelines possible - not decisions thrust on American women with little input and, apparently, little support from key health professionals.
Thanks for writing about this,
Pat
If mammograms at 40 are great, why not 30? Or 20? Much as it may upset some women, from a cost-benefit standpoint, there has to be a cut-off. The same kind of uproar accompanied the recommendation that most prostate cancers shouldn't even be treated because they are very slow growing. What? Not treat a cancer? The ridiculous costs involved in treating prostate cancer didn't justify the iffy benefits. The same thing is happening with breast cancer.
Anon,
And that's exactly the problem, isn't it? We don't know exactly how to balance the cost of a few women's lives with the cost of the screening (whether in terms of anxiety, health or financial cost). This is why we struggle.
I think that the struggle is even more difficult when it has been hard to educate a population about a certain level of screening to start with. Getting women to do self-exams, for instance. It's taken decades to get even a percentage of women to do self-exams without fear or embarrassment. I am sure that those who have worked to teach this now feel like they've moved several steps backward.
I thought it might be interesting to see what the Susan G. Komen folks have to say about this. This is from their website:
"How should women respond to this news? Calmly. There has always been debate about whether or not to recommend routine screening mammography for women in their 40s. The focus of the debate is the balance of risks and benefits. The most important potential benefit of screening mammography is a modest reduction in breast cancer mortality. Potential risks of mammography include false-positive test results (which lead to stress and additional testing), false-negative test results (a missed cancer), and overdiagnosis. Overdiagnosis refers to the diagnosis of a cancer that will never cause health problems during the life of a patient. Overdiagnosis leads to unnecessary cancer treatment.
"For young women, the balance of risks and benefits is different than for older women, and may not clearly favor screening (although this point continues to be debated). Young women are more likely than older women to experience some of the downsides of mammographic screening, and are also less likely to have breast cancer.
"The fact that the USPSTF and the American Cancer Society now have different screening recommendations for women in their 40s simply reinforces the importance of educating yourself about the potential risks and benefits of screening, talking with your physician, and making the decision that’s right for you."
Here's the site:
http://ww5.komen.org/default.aspx
I have been following the discussions with interest too. It seemed to me that the choice of wording was insensitive and possibly caused more offence than it needed to. Or was it perhaps stated the way it was precisely to stir up a heated public discussion? For example, it is hard to understand how breast self examinations cause harm (as per the wording) without further explanation and discussion.
One thing I understood from listening from the further explanations which does not seem unreasonable to me is the differentiation between teaching formal breast self examinations (apparently not a cost-effective use of public funds), versus encouraging better body awareness. To me it seems a no-brainer to be in touch with changes to one's own body, and what one of the commentators (a physician) explained was that many women detect their own breast cancer 'naturally', e.g. in the course of taking a shower, rather than while doing a formal monthly breast exam. On the other hand, I don't know how one goes about encouraging better body awareness? Is this something requiring public funding? If formal self-exams are no longer pushed, will women who are prudish about their own bodies be at greater risk of undetected breast cancer, or were they statistical lost causes all along?
Anon,
You make excellent points, and raise exactly the right questions. Perhaps there was no way to get through this development when the original phrasing made one immediately think of the statistical woman whose cancer would not have been found without a mammogram or a self-exam. Because if that statistical woman is you, or your mother, sister, aunt, niece or friend, the statistics become not so friendly.
You are right. The population of women who are squeamish about examining their own bodies and asking questions of doctors may not have found a cancer to begin with. But I also worry about future populations of girls and young women, who now may decide that self-exams aren't worth the trouble. It seems possible that one ruling can actually endanger what it took 20 years to establish.
Thanks so much for writing.
The simple fact is that, as emotive a topic as this is, the plural of anecdote is still not data - and the data suggests that the new guidelines for testing will have the same preventative effect.
Being an American living in the UK, I'm glad guidelines were changed for pap smears in the US, as evidence suggested that the annual tests were resulting in a large number of unnecessary and invasive procedures for transient cancer cell results. Until the data says otherwise, I think we should not get too wound up.
However I'm on board about the stupidity of no longer emphasizing self-exams. If nothing else there's no study or data to suggest that it has a negative impact, and self-awareness when it comes to your body is worth almost as much as any testing.