November 18, 2009

New Mammogram Guidelines Are Causing Confusion, But Here’s Why They Make Sense

New government guidelines recommending that women start screening for breast cancer at age 50 instead of 40 set off a round of criticism this week and caused much confusion for women who for years have been told that early detection saves lives.

But a number of women’s health organizations, including Our Bodies Ourselves, the National Women’s Health Network and Breast Cancer Action, for years have warned that regular mammograms do not necessarily decrease a women’s risk of death. Premenopausal women in particular are urged to consider the risks and benefits.

In fact, the NWHN issued a position paper in 1993 recommending against screening mammography for pre-menopausal women. It was a very controversial position at the time — even more so than now. The breast cancer advocacy movement was in its infancy and efforts were focused on getting Medicare and insurance companies to cover mammograms. What the NWHN found — and other groups have since concurred — is that the potential harm from screening can outweigh the benefits for premenopausal women.

That statement is tricky, and based on the poor explanations I’ve seen that fail to specifically address the potential dangers, it’s no wonder women are frustrated. Some are even questioning whether the guidelines were unveiled as a cost-cutting measure — a sign of the “rationing” to come under health care reform. In addition to delaying routine screening until age 50, the guidelines recommend screening women between the age of 50 and 74 every two years. It’s important to keep in mind this is intended for women with no known risk factors; women in high-risk groups should start earlier, and it may be prudent to schedule more frequent mammograms.

Adding to the confusion, cancer groups are split. The American Cancer Society came out strongly against the new guidelines. The National Cancer Institute, meanwhile, said it would reconsider its own recommendations in light of new studies. Some doctors said they would proceed cautiously before revising screening advice for patients.

I don’t believe the new guidelines are politically motivated, nor are they “patronizing” to women simply because they call into question the stress related to biopsies and false positive results. Rather, the guidelines provide a useful framework for helping each of us to decide when is the best time to begin screenings and the intervals at which they should be repeated.

The guidelines are in sync with international recommendations; the World Health Organization recommends starting screening at age 50, and in Europe, mammograms are given to post-menopausal women every other year and detection rates are similar to the United States. During an interview on MSNBC on Tuesday, breast cancer expert Dr. Susan Love said the government’s guidelines bring us into line with the rest of the world and with current research. (Read more at her blog.)

You might be thinking: Wait a moment, isn’t earlier better? Why would delaying detection be in my best interest? I’m going to explain why, but let’s first take a closer look at the guidelines, which were released by the U.S. Preventative Services Task Force (USPSTF), an independent panel of experts in prevention and primary care. (The task force operates under the Agency for Healthcare Research and Quality, the research arm of the U.S. Department of Health and Human Services.)

The guidelines are an update of the 2002 USPSTF recommendation statement, which called for mammograms every one to two years, starting at age 40. Dr. Alfred Berg of the University of Washington, who chaired the task force in 2002, told The New York Times this week, “We pointed out that the benefit will be quite small.” He added that while older women experience the most benefits from the screening, mammograms still prevent only a small percentage of breast cancer deaths.

Breast cancer is the second-leading cause of cancer-related deaths in women (lung cancer is number one). According to the National Cancer Institute, about 192,370 women will be diagnosed with breast cancer in 2009, and 40,170 women will die of the disease this year. A woman who is now 40 years old has a 1.44 percent chance of being diagnosed with breast cancer over the next 10 years.

For the 2009 update, the panel, now with different members, examined the role of five screening methods in reducing breast cancer mortality rates: film mammography, clinical breast examination, breast self-examination, digital mammography, and magnetic resonance imaging. It also commissioned two studies:

1.) A targeted systematic evidence review of six selected questions relating to benefits and harms of screening.

2.) A decision analysis that used population modeling techniques to compare the expected health outcomes and resource requirements of starting and ending mammography screening at different ages and using annual versus biennial screening intervals.

Here is the summary of the task force’s findings, published in the Annals of Internal Medicine. The grades are explained here; A is the highest recommendation (meaning there’s a high certainty the benefits are substantial), and D is the lowest. A rating of I indicates evidence is insufficient or conflicting.

The USPSTF recommends against routine screening mammography in women aged 40 to 49 years. The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms. This is a C recommendation.

The USPSTF recommends biennial screening mammography for women aged 50 to 74 years. This is a B recommendation.

The USPSTF concludes that the current evidence is insufficient to assess the additional benefits and harms of screening mammography in women 75 years or older. This is an I statement.

The USPSTF recommends against teaching breast self-examination (BSE). This is a D recommendation.

The USPSTF concludes that the current evidence is insufficient to assess the additional benefits and harms of clinical breast examination (CBE) beyond screening mammography in women 40 years or older. This is an I statement.

The USPSTF concludes that the current evidence is insufficient to assess the additional benefits and harms of either digital mammography or magnetic resonance imaging (MRI) instead of film mammography as screening modalities for breast cancer. This is an I statement.

Dr. Diana Petitti, a professor of biomedical informatics at Arizona State University and vice chair of the current task force, told The New York Times the panel knew the recommendations would surprise many women, but, she said, “We have to say what we see based on the science and the data.”

Frankly, I was surprised by the conclusion that self breast exams are not considered useful. News stories this week have included many anecdotes from women who found a lump that turned out to be cancerous, and every doctor I heard interviewed said that women should definitely contact their physician if they notice any changes in their breast. But what we’re learning is that feeling our own breasts for lumps is not statistically effective, and women who do self breast exams get twice as many biopsies.

The World Health Organization concurs: “There is no evidence on the effect of screening through breast self-examination (BSE). However, the practice of BSE has been seen to empower women, taking responsibility for their own health. Therefore, BSE is recommended for raising awareness among women at risk rather than as a screening method.”

Around 37 million mammograms are done each year. So what’s the problem there? For starters, mammograms use low-dose X-rays to examine the breast, and exposure to radiation can have a cumulative effect on the body. And they’re imperfect. About half of all premenopausal women, and one-third of postmenopausal women, have dense breasts, which makes their mammograms more difficult to read.

Mammograms produce false-positive results in about 10 percent of cases, leading to anxiety that can last for years, unnecessary and sometimes-disfiguring biopsies, and unneeded treatment, including surgery, radiation and chemotherapy — each of which present their own complications and health risks, including an increased risk of other cancers and heart disease.

According to the National Breast Cancer Coalition, U.S. estimates show a woman’s cumulative risk for a false-positive result after 10 mammograms is almost 50 percent. The risk for undergoing an unnecessary biopsy is almost 20 percent. Barbara Brenner, executive director of Breast Cancer Action, told me last year that research indicates that having more biopsies increases the risk of breast cancer, though the reason is unclear (read my post here).

Women are constantly being told “early detection saves lives,” but in reality we know some breast cancers, by the time they’re found, cannot be treated. Other cancers will never be life-threatening, and some will respond to currently available treatments. Unfortunately, the type of cancer cannot be determined at the time of diagnosis, which means we don’t know for sure whether the treatment will cause more harm than the cancer.

If you’re reading this and thinking you still want to keep that scheduled mammogram, you should certainly do so.

“No one is saying that women should not be screened in their 40s,” said Petitti, the task force vice chair. “We’re saying there needs to be a discussion between women and their doctors.”

Dr. Amy Abernethy of the Duke Comprehensive Cancer Center said she agrees with updated recommendations.

“Overall, I think it really took courage for them to do this,” she said. “It does ask us as doctors to change what we do and how we communicate with patients. That’s no small undertaking.”

Finally, I want to address the insurance question. At this point, insurance companies and Medicare administrators are saying that they will continue to pay for mammograms. Here’s what may change in the future, according to The New York Times:

The guidelines are not expected to have an immediate effect on insurance coverage but should make health plans less likely to aggressively prompt women in their 40s to have mammograms and older women to have the test annually.

Congress requires Medicare to pay for annual mammograms. Medicare can change its rules to pay for less frequent tests if federal officials direct it to. Private insurers are required by law in every state except Utah to pay for mammograms for women in their 40s.

But the new guidelines are expected to alter the grading system for health plans, which are used as a marketing tool. Grades are issued by the National Committee for Quality Assurance, a private nonprofit organization, and one measure is the percentage of patients getting mammograms every one to two years starting at age 40.

That will change, said Margaret E. O’Kane, the group’s president, who said it would start grading plans on the number of women over 50 getting mammograms every two years.

For more information, here are some good stories and links:

NPR: All Things Considered looks at the research.

Washington Post: A good overview of the guidelines and cost controversy.

ScienceBlogs: “From my perspective, these new recommendations are a classic example of what happens when the shades of gray that make up the messy, difficult world of clinical research meet public health policy, where simple messages are needed in order to motivate public acceptance of a screening test,” writes Orac. “It’s also an example where reasonable researchers and physicians can look at exactly the same evidence for and against screening at different ages and come to different conclusions based on a balancing of the potential benefit versus the cost.”


35 Responses to “New Mammogram Guidelines Are Causing Confusion, But Here’s Why They Make Sense”

  1. Stephanie Says:

    thank for posting this. I’ve been wanting to read a thoughtful & scientifically-based response to the new guidelines.

  2. jan Says:

    I am a BC survivor. Diagnosed at 48 years old, I found a lump, the mammogram substanciated that.
    The science discussed in this post makes sense BUT — my breast cancer was either one that would never be life threatening or one that would response to today’s known treatments. I do not know which kind mine was but it was obviously one of those as I am still alife with no symptoms.
    Now I wonder, if I had not found the lump, had not had the mammogram see it, and it was the kind of breast cancer that would respond to treatment, how would I have known I had it and needed that kind of treatment?
    If a cancer resides in a woman’s breast and it is not felt because we are no longer encouraged to do a self exam and it is no longer screeened how will it now be detected and how will this woman’s life we saved?
    I know that we need better screening methods, better ways to find out what kind of cancer exist but waht do we do in the meantime to find breast cancers?

  3. Chukwuma Says:

    Thank you, thank you, thank you for such a thoughtful and comprehensive review of this very important topic. I have been distressed at the inaccurate and frankly irresponsible journalism with regard to the new recommendations. The most important thing is that women need to talk with their physicians and do what is best in their individual circumstances.

  4. Judith Rooks Says:

    I am an epidemiologist and understand why this ADVISORY TASK FORCE (not the government itself) reached these conclusions. Nevertheless, I think that the RECOMMENDATIONS (not guidelines) are wrong and are patronizing. My mother died from breast cancer so the recommendations, if upped into guidelines and effecting health insurance coverage for mammograms for women between the ages of 40 and 49 would not have effected me. I had yearly mammograms, had to have repeat mammograms on several occasions, and once nearly had a biopsy due to a self-identified breast lump; it was a cyst and collapsec the night before the scheduled biopsy. Those things made me very anxious. But finding out that it was a false alarm was so wonderful that it made up for the anxiety. I cannot imagine any woman thinking that it is worse to have anxiety and a repeat mammogram or even a biopsy than delaying treatment for actual breast cancer. Women have a lot of causes for anxiety in their lives. This is minor compared to many other things that make us anxious. Unwanted pregnancies are one of them! The US Preventive Services Task Force recommendations are based on a lack of understanding of the terror that breast cancer represents for American women. It was also tone deaf. And terribly mistimed, coming out in the midst of discussion— and lots of rumors and misinformation about what is being considered for health care reform in this country. I am afraid that it has already done terrible damage to that so important process. In addition, the only television discussion I heard about the mammogram recommendation was on CCN’s “situation room” while I was eating lunch yesterday. A member of the US Preventive Services Task Force, spoke in favor. A breast cancer survivor had already spoken vehemently against the recommendations. I am a nurse (and midwife) and know that there are a lot of brilliant nurses, and she had a PhD. But she is a nurse at a nursing education program in Georgia. She wasn’t bad, but she wasn’t good. She really just repeated the recommendations. The Task Force should have been represented by an MD epidemiologist, such as Dianna Petitti. When you have a chance to go on national television to make your case, you have to cave to the general population’s belief that anyone who is not an MD is a lesser authority on anything having to do with disease. I hope that the Task Force will withdraw its recommendation and study it further.

    Judith Rooks

  5. uberVU - social comments Says:

    Social comments and analytics for this post…

    This post was mentioned on Twitter by aimeett: @LIVESTRONGCEO have you seen this explanation of shift in guidelines? what do you think? http://bit.ly/1poTxQ

  6. Judith Rooks Says:

    No I haven’t. I tried to just now, but I don’t know how to twitter and it didn’t work. Thanks for the suggestion though. Maybe you can help me?

    My problem is the timing, the tone that seems to give more weight to women’s anxiety than to even rare cases of breast cancer for which diagnosis and treatment would be delayed. I know about the health costs of false positives, some of which are unnecessary surgery. But breast biopsies are not very invasive, and anxiety—well, American women are anxious about breast cancer. Have studies been done to compare the anxiety of lots of women not having the reassurance of an annual mammogram as compared to a small percent of women having anxiety about needing to have another mammogram or even a biopsy? My mother died of breast cancer. Since I am at higher-than-average risk based on that, these recommendations, if these recommendations were used to deny health insurance coverage for mammograms for women in their forties, it would not have effected me. I have had to have repeat mammograms on a number of occasions, and once almost had a biopsy; the lump I had self-identified was caused by a cyst that collapsed the night before I was scheduled to have an in-office biopsy. I lived through that anxiety and was always euphoric at the end (so far, at least). But I—and most women—have lived through more anxiety, a lot related to pregnancies. We are pretty strong over all.

    My biggest concern is that we need health care reform so desperately. And, yes, I want it to give strong support for evidence of safety, effectiveness, and cost, because the cost of providing unnecessary procedures to some people means that other people will not get necessary care. I support the work of the US Preventive Services Task Force. But the social context has to be factored in too. When everyone is wearing little pink bows to signify their concern about breast cancer, maybe the Task Force should have consulted a sociologist, political scientist and/or psychologist before they did this. Maybe they did, I don’t know. But it didn’t “roll out” very well, at least so far. Epidemiology and statistics aren’t the only issues that matter.

    Thanks for your response. Maybe you can help me find that twitter on the Internet?

    Judith

  7. DEM Says:

    A question about terminology. The USPSTF published RECOMMENDATIONS, did they not? And aren’t recommendations — from an *advisory* task force — actually different from government (in this case, DHHS) GUIDELINES? I’m wondering whether some of the confusion and even uproar is a result of the widespread conflation of these two terms.

    Otherwise, fine article. Thanks for the information.

  8. Knitting Clio Says:

    Thanks for the great article, OBOS. From a historical perspective, much of anxiety and uncertainty is a product of screening procedures that have led the medical profession to view the breast as a “precancerous organ” (this phrase comes from Robert Aronowitz book, _Unnatural History_).

  9. Myra Says:

    I must say that I am troubled by these new recommendations, perhaps because they come so close to my mother’s breast cancer diagnosis. Her cancer is so small that it was found on a mammogram, and so we are lucky. However, I was also troubled by your explanation that cancers basically break down into three categories:
    “Women are constantly being told “early detection saves lives,” but in reality we know some breast cancers, by the time they’re found, cannot be treated. Other cancers will never be life-threatening, and some will respond to currently available treatments.”
    My mother’s cancer is the dreaded triple negative, and so would that put her in the “cannot be treated” category? So why bother screening? And perhaps I should forgo any screening even though I am now at high risk, because the type of cancer I am genetically more likely to get in the next ten to twenty years is untreatable and their for I should resign my self to inevitable death?
    I know you don’t mean to say that, I know these guidelines don’t mean to say that. However, suggesting that the 10% possibility of a faulty mammogram or the inconvenience of a negative biopsy is more important then catching a breast cancer early is disingenuous. I would have loved my mom’s biopsy to be negative, but instead I’m at least happy that we caught it early enough to give her a chance at beating it.

  10. liberality Says:

    Good coverage on this issue. Thank you for writing it.

  11. Amy Tuteur, MD Says:

    When I heard about the US Preventive Services Task Force mammography recommendations, I had two thoughts. The first was that these recommendations are old, not new, but people keep ignoring them for political reasons. The second was that the Republicans would exploit these recommendations to claim that the Obama administration was attempting to ration healthcare. What I hadn’t counted on was that the politically motivated claim of rationing would resonate with so many women despite its complete lack of factual support.

    It was not a stretch to envision the Republicans trying to exploit these recommendations for political purposes. After all, they are not constrained by the truth. The same people who fabricated the idea of “death panels” were not going to be able to resist the idea of “breast panels” convened to deprive women of what breast cancer surgeon Dr. Susan Love aptly and humorously disparages as “a right to be radiated.”

    The beauty of a lie, particularly a big lie, is that if you say it often enough, people will begin to believe it. Even though death panels never existed; even though they were a complete fabrication of Sarah Palin and Republican operatives, they struck a chord in the American public. Republicans implied, or even stated, that Barack Obama wants to kills you to save money for the US government.

    So American women were primed to ascribed nefarious motivations to the new recommendations: the timing of the recommendations is supposedly suspect, the fact that the president is a Democrat is supposedly not coincidental, the mere idea of saving money by applying scientific evidence is merely a cover up for rationing.

    But the timing is not suspect; the recommendations have been proposed repeatedly over the past decade. The identity of the president is coincidental; the same recommendations were proposed under George W. Bush. Saving money by applying scientific evidence is not rationing; no one is being deprived of medically beneficial care. Anyone who wants to have a mammogram can get one; you simply have to pay for it if it’s not medically indicated.

    The irony is that everyone claims to favor “evidence based medicine.” Well, this is what evidence based medicine looks like. The scientific evidence does not justify routine yearly mammograms for women aged 40-49. But instead of opting for evidence based medicine, the American public seems to favor fear based, politically motivated medicine.

  12. Kristen Harris Says:

    I am a 41 year old, diagnosed with breast cancer almost exactly one year ago. In my case, it was a MAMMOGRAM that found my cancer. I have no family history, had no symptoms, no recognizable lump. The cancer was early stage, so I could have a successful lumpectomy, radiation treatment, and now will have the added protection of taking tamoxifen for the next five years. I firmly believe in my case, if we would have been following these recommendations, my prognosis and anxiety would be much worse. By the time I would have had a mammogram (maybe another 10 years?!) or felt a lump, my cancer would most likely have been much later stage, invasive, and would have caused me FAR more anxiety. That cancer would have been FAR more costly to treat as well. One other thing I don’t hear being discussed is whether early detection saves BREASTS — I know, life or death, we can live without them, but I’m so happy my cancer was found before I had to make a decision to lose my breast entirely. I know that my case is not statistically the norm, but quality of life is more important than any statistic. One other note: I cannot use the tool to print or email this post. I’d like to read it more carefully, but cannot print it without all the the other sidebar / ads, etc. I received a 404 error when trying.

  13. Amy Tuteur, MD Says:

    “The cancer was early stage, so I could have a successful lumpectomy, radiation treatment, and now will have the added protection of taking tamoxifen for the next five years. I firmly believe in my case, if we would have been following these recommendations, my prognosis and anxiety would be much worse.”

    But that’s not what the scientific evidence shows.

    The scientific evidence shows that up to 20% of early stage breast cancers detected in women aged 40-49 would go away by themselves. In the rest, there doesn’t seem to be much benefit to treating them aggressively because they do not behave aggressively.

    In some ways, that’s even more distressing information than the change in mammography guidelines. It means that thousands of women have undergone unnecessary biopsies, unnecessary surgeries and unnecessary chemo and radiation, not to mention unnecessary anxiety and fear. We didn’t cure these women. We treated many of them even though they didn’t need it and then took credit for what would have happened anyway.

  14. Ben Says:

    MediaCurves.com conducted a study among 600 about the new guidelines released by the Preventive Services Task Force of the Department of Health and Human Services recommending against regular mammography tests for women under 50 years old. Results found that the majority of physicians (78%) reported that they do not agree with the new guidelines. Furthermore, the majority of physicians (78%) also reported that the advice they give to patients will not change based on the new Preventive Services Task Force of the Department of Health and Human Services guidelines.
    More in depth results can be seen at:
    https://www.mediacurves.com/HealthCare/J7646-MammogramGuidelines/Index.cfm
    Thanks,
    Ben

  15. Tammy Says:

    “The scientific evidence shows that up to 20% of early stage breast cancers detected in women aged 40-49 would go away by themselves. In the rest, there doesn’t seem to be much benefit to treating them aggressively because they do not behave aggressively.”

    Cite source please. I’m curious how this is known, especially for the relatively younger women.

  16. Amy Tuteur, MD Says:

    “Cite source please.”

    The Natural History of Invasive Breast Cancers Detected by Screening Mammography, Zahl et al., Arch Intern Med.2008; 168: 2311-2316.

  17. Kristen Harris Says:

    Amy – thanks for your reply. I did *extensive* research when I was first diagnosed and never found that scientific evidence which you reference. In addition to exhaustive medical journal research on my own, I also interviewed three oncologists, two surgeons, and two radiation oncologists. Most of them told me it would be highly risky to “watch” my cancer and potentially unethical to even do a study that would simply “watch” cancer that was in my breast. I would embrace reading that evidence you reference that conclusively shows that up to 20% of early stage breast cancers detected in women aged 40-49 would go away on its own. That is the exact type of evidence I was looking for, but could not find. My cancer was aggressive, and the research I did find indicated that many cancers in women of younger ages tended to be more aggressive.
    Due to the high level of research I did before undergoing any treatment, I was not filled with fear, anxiety during or after treatment. I was empowered and had a sense I was more in control of my disease.
    The one article of research you reference was not regarding age 40-49 breast cancer cases. One study is not enough. Please provide any other sources. Thanks!

  18. Rj Says:

    This is the first time in my life I’ve ever been glad to see Amy Tuter write.

    “The irony is that everyone claims to favor “evidence based medicine.” Well, this is what evidence based medicine looks like. The scientific evidence does not justify routine yearly mammograms for women aged 40-49. But instead of opting for evidence based medicine, the American public seems to favor fear based, politically motivated medicine.”

  19. Dennis Says:

    Rj, I think you misunderstanding the responses. I think everyone favors being on the safe side and having tests. Some Doctors here seem very cavalier with people lives and peice of mind but want to pound the statitics home. My wife was glad to have her cancer treated aggressively and put it behind, there is no way (given that no data spoken here is 100%) that she would have lived with the cancer based on someones theories and statitstics. How could we expect anyone to do that? Amy, I am still waiting for your response to Kristen\’s post.

  20. Jessica A Bruno Says:

    Have to say I’m torn on this.

  21. Diane Says:

    I did not see it suggested anywhere that a woman who found an actual lump should not have mammogram, and saw that the recommendations apply to women NOT at special risk for breast cancer.

    We talk a lot about “defensive medicine” and “unnecessary tests” running up health care costs, causing unwarranted anxiety, etc. If the evidence says most women under 50 don’t need routine screening mammogram that is good news for all of us. This is not to minimize the experience of women diagnosed with breast cancer before age 50, but it seems on average the world is a little less scary than we’d thought.

    I had my first mammograms at age 36 & 37 (they wanted a baseline before a breast reduction, and another after surgery). This year at 48 I declined before these recommendations came out. All of my mammograms have been negative and the only breast cancer in my family is 1 great-grandmother, with my grandmother and mom now well past 90 and 70 respectively. I’m very comfortable minimizing my radiation exposure by waiting another 2 years, and I’m glad to see it now won’t be held against my doctor’s practice in quality evaluations.

    Of course, if my husband or I notice a lump between now and then I’ll be seeing the doctor (and I’m sure the radiologist) right away.

  22. Greg Flewelling Says:

    I have to take issue with this paragraph:

    “Mammograms produce false-positive results in about 10 percent of cases, leading to anxiety that can last for years, unnecessary and sometimes-disfiguring biopsies, and unneeded treatment, including surgery, radiation and chemotherapy — each of which present their own complications and health risks, including an increased risk of other cancers and heart disease.”

    In the article you cite (http://www.reuters.com/article/healthNews/idUSCOL24516520070412?sp=true), the headline clearly implies false-
    positive mammogram results cause greater anxiety. The quotes seem to lead you to the same conclusion. However, the experts NEVER say a causal relationship exists. They could have said women with a little anxiety are more likely to regularly see their doctor and follow health guidelines. In the comparison to other countries they made no mention of the differences in culture, hours worked, diet, etc., not to mention health care delivery differences.

    PS: My anti-spam word was sebelius. Coincidence?

  23. starling Says:

    For someone who is anxious about medical treatment in general, a false positive is especially likely to cause lasting anxiety and harm. Imagine someone with a pathological fear of needles being referred for a needle biopsy.

    I think it’s very appropriate to speak to the individual woman and understand her preferences – is she more anxious about the possibility of cancer or more anxious about unnecessary procedures – and go from there. These new guidelines, I think, will make it less likely that women with no particular fears about breast cancer will be cajoled/pushed into screening that may not benefit them.

  24. Shura Says:

    I STRONGLY agree with Kristin Harris and take issue with Dr. Amy Tuter’s points.

    “The scientific evidence shows that up to 20% of early stage breast cancers detected in women aged 40-49 would go away by themselves. In the rest, there doesn’t seem to be much benefit to treating them aggressively because they do not behave aggressively.”

    I had a non-agressive stage 1 BC diagnosed a few months ago at my 39th birthday after my second mamogram. I never felt a thing, but the mass was a little beyond DCIS by the time it was found.

    How would we know if my tumor would have gone away by itself? We have no way of knowing right now. So, do nothing about it and hope you’re in the 20%. Come on, that’s crazy. This is my life.

    “There does not seem to much benefit to treating them aggressively because they do not behave aggressively.”

    Is lumpectomy, radiation & tamoxifen considered aggressive treatment? I agree with Kristen. I am glad I had good health insurance and was able to get that kind of treatment. How would we know if it MIGHT behave aggressively? Again, no way to know. None at all. So, do nothing? With a stage 1 tumor? That would be insane. Unless someone could guarantee me that the tumor would go away or not grow at all, I HAD to do something. We KNOW that guarantee does not now exist, maybe in the future, but until then do nothing??? Really??? This seems like quite a glib position for a physician to take.

    I will have MRIs & breast ultra-sounds for a while. Do I like this? No, but I also know several women my age with aggressive BC, and this seems like a small price to pay for my health. I hate that i had this diagnosis, but hate more that women my age are dying of this disease and there is not enough research going on about WHY so many more young women are getting this disease.

    With the change in the recommendations, it’s just a matter of time until the insurance companies stop paying for mamograms etc. for women in their 40s. Women who should get the tests or want them WILL be denied. That is for sure.

    IS THAT PROGRESS FOR WOMEN?

  25. Shura Says:

    One more point…there are PLENTY of cases of women with stage 1 BC who have a recurrence of metastatic cancer several years later. Just read the NYT article from 10/25/09 about MD Anderson Hospital in Houston. The article profiles, among others, a BC RN who was treated with radiation & lumpectomy for BC ~9 years ago. She now has bone mets in her pelvis. The five year survival rate for metastatic cancer is 20%!!! What started at non-aggressive CAN become aggressive. It happens all the time.

    How is it conscionable to advocate that early stage cancers not be treated when there are many, many women who have them and later face a deadly recurrence?

    PLEASE explain this to me, Dr. Tuter, and OBOS? This is not sound advice. These recommendations are not cause for women to celebrate at all.

  26. Amy Tuteur, MD Says:

    “How is it conscionable to advocate that early stage cancers not be treated when there are many, many women who have them and later face a deadly recurrence?”

    Breast cancer is more than one disease. There are different types of breast cancer and not all of them require the same treatment. It is not clear that we are making any difference by treating breast cancer diagnosed between 40-49. Those cancers that are not aggressive were never going to spread so we don’t really cure them. Those cancers that are aggressive appear to spread despite the standard treatment.

    People often insist that it is worth any amount of money to save one life, but that’s not really what we believe. If we were to lower the speed limit on highways to 35 mph, we could save thousands, maybe tens of thousands of lives, yet we don’t do it. Why? Because it is too inconvenient, and costs too much time.

    When it comes to making guidelines for large populations, the lines we draw are always somewhat arbitrary. Though people claim to be outraged at dropping the recommendation for yearly mammograms in women aged 40-49, why aren’t they clamoring that the recommendations should be extended to yearly mammograms for women aged 30-39? If they truly believed, as they claim that they do, that it is worth any amount of money to save one life, they should be insisting on screening for women aged 30-39 since breast cancer can occur in that group, too.

    There’s nothing special about whole numbers that end in 0. Why not recommend yearly screening women aged 28-39? For that matter, there’s nothing special about yearly intervals. Why aren’t they recommending screening for all women every 6 months instead of every 12 months? Surely we could save a few more lives that way, too.

    The fact is that we are forced to make relatively arbitrary policy decisions when it comes to safety issues of any kind. We are always forced to balance benefits and costs. We don’t really believe that it is worth any amount of money to save even one life. We don’t even believe that it is worth getting to our destination a little later to save thousands of lives lost on the highway each year.

    That’s why the outrage over rationing is entirely misplaced. If by rationing people mean considering cost when making safety decisions, we ration every day in many ways. We live in the real world, and in the real world there is not unlimited money. A dollar spent on mammograms is a dollar not spent on another form of healthcare that may have a much better benefit to cost ratio. It is not rationing to suggest that some money spent on mammograms might be better spent elsewhere. It is merely common sense.

  27. Kristen Harris Says:

    To the argument that screening at any age is arbitrary, again, I take a different stance. Yes, we should look at studies, crunch the numbers, and decide what is a good balance between over testing and not testing enough. Yes, we should change and adapt recommendations when new information is well understood. However, how could it not cause great concern to go from recommending 1 mammogram a year for a range of 10 years (40-49) to ABSOLUTELY NO mammograms at all for that same time frame?

    The recommendations may have been easier to understand if they stated something more in line with the reasoning they are using to actually change them. For example: How about a baseline at 42, and then mammograms every 4 years until age 50? Then biennial? Ultimately, yes, it will be up to a woman and her Dr. to decide, but standards eventually dictate what is and isn’t covered by our insurance. Many women just like me (with no family history and no risk factors) would not get tested until it was too late or far more costly to treat.

    My point here is that the recommendations changed so drastically, we cannot rationally understand it. I’ve read the research, and the findings are not that drastically different than 2002, in fact, many of the studies are from before 2002! The evidence is just not that compelling to warrant this huge change.

  28. Dana Says:

    @Kristen, one might equally say that the evidence was just not that compelling to warrant the earlier recommendation of annual mammos.

  29. Jonathan Says:

    It’s hard to know how to approach this controversy when you have a personal story. My mother, 14 year ago, was diagnosed at age 49 with a 1 cm tumor, which was found on the mammogram but was not palpable to her, the surgeon, or the gynecologist at her appointment the day before. The tumor had a doubling time of 3 weeks. And she was premenopaual. She is well today. Although we can never know what WOULD have happened had she waited till 50 or until symptoms appeared, it is still compelling.

    I think what bothers me the most is not what the investigators’ INTENTIONS were (and I do believe they were thoughtful and well-meaning), but what the consequences could be. 1. Some women might think that breast cancer won’t be a risk until they turn 50 2. A delay in diagnosis (even if the woman’s survival isn’t decreased), from a cost standpoint, might result in a greater need for more expensive treatments such as more radical surgery drug therapies 3. Women in their 40s, as a subgroup, may not be able to obtain a mammogram deemed necessary by a specialist because insurance won’t pay for it.

    The problem is that mammograms remain the state-of-the-art. It seems inappropriate to be looking at them retrospectively when we have not yet ushered in the new tool that will improve diagnosis. Some people have been blaming hard-line doctors as too eager to utilize mammography; perhaps…but they are doctors not medical device manufacturers and they can only use what they have. My personal opinion is that since the analysis, despite mammography’s many downsides, admitted to improved survival with its use and that bc death rates may increase slightly if the new guidelines are followed, we shouldn’t be so hasty in abandoning it.

  30. kitty Says:

    Jonathan – according to Cochrane review for every woman whose life is saved by a mammogram up to 10 get unnecessary diagnosis of breast cancer. Additionally, cancers aren’t created equal – some are indolent and go away or simply grow too slowly to spread in woman’s lifetime; some grow faster but still slow enough that even by the time a woman feels a lump, it would still be localized to the breast. And some cancers are just two aggressive and will kill anyway. Mammograms aren’t very good in detecting really aggressive cancers: they spread immediately while still microscopic or spread between mammograms.

    Mammograms help in a very specific case – cancers that are going to spread by the time one can see a tumor, but the mammogram detects them before this time. Now, nobody can say in which of these groups your mother’s cancer would be. But this is why the researchers need real data such as mortality reduction rather than individual stories. Every survivor would like to think her life was saved; otherwise, her suffering would’ve been for nothing. But this is not what data shows.

    According to Cochrane review, for every woman whose life is saved, 10 women are converted into cancer patients unnecessarily. Cochrane is completely independent – they have no special interests: no profit from mammograms and no profit from money saved on mammograms.

    Treatment for cancer has real risks. Tamoxifen for example may result in a stroke. Surgery has risks, radiation may cause heart problems later even another cancer. When you screen a lot of women, many women get diagnosed with cancer that would never have spread, some of them may die as the result of treatment or suffer life long side effects. Yes, if the treatment saved your life it may be worth it, but what if you could’ve lived your full life without ever knowing you had cancer and instead you suffer life long side effects from treatment or worse die from it? Is unnecessary heart damage from radiation in one woman worth another woman’s life saved from cancer? What about 10 women who suffer side effects from unnecessary treatment vs one woman’s life saved?

    In terms of false positives – 10% number probably refers to number of biopsies. At least in the US the cumulative probability of at least one false positive after 10 years of screening is close to 50%. Now, you may ignore “anxiety” as a non-issue, but in some women it causes real problems like high blood pressure. Keep in mind that mammogram studies only looked at reduction in breast cancer mortality. Nobody has ever shown a reduction in all cause mortality. So if some women get heart disease as a result from some cancer scares, statistics wouldn’t show it.

    Also don’t forget radiation. It’s small but it adds up, especially in younger women. Is some woman getting cancer from it, worth some other woman’s life saved?

    Incidentally, there is nothing new in USPSTF decision. Those of us who were interested in the subject have known about the controversy for a long time. The only difference now is more data about the extent of overdiagnosis.

    One other thing. Looking at the time one survives after diagnosis is very misleading. This is affected by what is called “lead-time bias”: a woman dies at the age of 50 from breast cancer; if her cancer is diagnosed early at 43, she survives for 7 years; if late at 48 – only for 2 years, but you wouldn’t say early detection helped her. The only important data when it comes to screening is reduction in mortality from screened vs non-screened population. And these numbers are awfully small.

    Disclosure: I am not a doctor or epidemiologist, just a woman with personal interest in epidemiology and who followed the discussion, the studies and controversy of mammograms for a while. I also looked at the data about 5 years ago and decided I don’t want mammograms. Not while I am in my 40s, and maybe not even later.

  31. Christine Says:

    Bravo, Kitty, you said it well! As a medical editor/writer, I frequently encounter skewed statistics and bias in the medical literature. That’s why Cochrane reviews are so important.

    For anyone wanting to read an excellent take on the subject of mammography (from a doctor’s perspective), see link here: http://preventcancer.com/patients/mammography/ijhs_mammography.htm

    I remember when the medical community was advocating for women to get a baseline mammo at 35…I can’t remember any outcry when they pushed it back to 40.

    Keep in mind that the rest of the worldwide medical community (of experts) suggests that women get mammograms beginning at age 50. So it’s time we got on board with the rest of the experts!

  32. Kairol Rosenthal Says:

    Thank you for your fantastic coverage of this issue. As the author of a book on young adult cancer, I come into daily contact with young women who are outraged by these recommendations. Yet, the only defense they have against the recommendations are their personal stories.

    Telling personal stories is an important way to give and get peer support. And, our personal stories are effective tools for motivating legislators to take seriously our health issues and invest money in researching our diseases. Personal stories, however, are not a substitute for science, and should have no bearing on the recommendations given by a scientific task force.

    Had the task force sat on this research and not acted on it through creating revised guidelines, the same women who are outraged now would be doubly outraged for not being taken seriously as a patient population. Kudos to these brave scientists who in the process of doing their jobs have been wedged in a cultural battle that has little relevance to what happens in the analytic world of cancer research. If we want science to lead the way towards reduced cancer mortality rates, we need to be willing to accept evidence-based truths, even when they are contrary to our current habits.

    Keep up the great reporting!

    Kairol Rosenthal
    http://everythingchangesbook.com/

  33. zena Says:

    Thiis has been very helpful to read. I had the original OBOS book, and have just had first mammogram at 50 over here in UK. I went to look at OBOS, but thought, hey, it’s out of date!
    When I was referred for a second set of mammograms I knew what was coming – uh oh, more tests!
    Every time I have come into contact with medical profession – especially over women’ specific issues – eg pregnant with my two babies, I have been told off for asking questions! I was struck off a GP’s list for wanting a home birth in 1993 etc etc
    Now there are three calcifications in my left breast. I have had a biopsy on one site, taking ten samples whilst my breast is squeezed so tight I almost faint after 30 mins (with local anaesthesia). The staff were lovely. The procedure felt like medieval torture – do they do this to men and their testicles?!!!
    And now? two and a half weeks later, only just feeling breast and underarms are almost normal – still cannot sleep on my front all night without aches.
    An inconclusive result (with all that tissue?), so – you guessed it, more tests, more tissue collection, and apparently, if that is inconclusive they’ll leave me alone!
    So,. now, I think, let me go back to OBOS, and let me stop and take time to find info, before any needles are in me again. Thanks for these posts everyone.

  34. Mary Says:

    These so-called new guidelines are not designed to benefit the health of patients, they are designed to cut administrative costs. I had a baseline mammogram at 40 at the suggestion of my doctor. I continued every other year until my 50th birthday when a shadow was found on my right breast. I was diagnosed twice in my right breast with D.C.I.S. (2000 and again in 2004). I believe early detection saved my life. We must support better health care for everyone in this country. We all benefit from a healthy world.

  35. MC Kean Says:

    “These so-called new guidelines are not designed to benefit the health of patients, they are designed to cut administrative costs.”

    No, the resistance to the new guidelines by the industry has to do with profits. I had a 40 yr old base line and it was destroyed by the time I was 50.

    ” I had a baseline mammogram at 40 at the suggestion of my doctor. I continued every other year until my 50th birthday when a shadow was found on my right breast. I was diagnosed twice in my right breast with D.C.I.S. (2000 and again in 2004).”

    Most DCIS should not be treated by more than lifestyle changes.

    ” I believe early detection saved my life.”
    research does not support this assumption, propaganda of course will.
    Fact is, all that mamography may have caused the DCIS, and treatment is more likely to have shortened your life.

    Cancer treatment is very profitable. Many teaching facilities pay bounties for breast surgical patients so they can teach surgery, reconstruction, implants (very profitable field without cancer) to medical students.

    Patients are not told the truth about surgery and how it stimulates cancer growth. Women are encouraged to undergo multiple reconstruction surgeries.

    the best thing we could do for our breast health is to limit cancer casing medical care from xrays to mammography

    outlaw the use of hormones and other cancer related agricultural practices

    change our diets and lifestyle, stress, activity level, food and drink

    With all the women diagnosed with breast cancer, and the lack of progress in treatment, we need to look more at causes, and alternative treatments/prevention.

    I also have had surgery, but I am convinced it shortened, not “saved my life.”

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