Breast Cancer “Awareness”: Marketing Fear — Part 1

 Peggy Orenstein is a brave woman. A breast cancer survivor, she has faced up to the fact that perhaps, if she hadn’t had a mammogram that revealed a tiny tumor when she was 35, it might have vanished on its own. She would not have known that it existed—and would not have undergone a lumpectomy plus six weeks of radiation.  Nor would she have suffered the emotional consequences of being told, at age 35, that she had breast cancer.

At that age few of us are ready to come face-to-face with our own mortality.  In last Sunday’s New York Times Magazine, she writes: “Recalling the fear, confusion anger and grief of that time is still painful.”

But sixteen years after her diagnosis we have learned more about breast cancer, and Orenstein is willing to look the truth in the eye:  “As study after study revealed the limits of screening — and the dangers of overtreatment — a thought niggled at my consciousness. How much had my mammogram really mattered? Would the outcome have been the same had I bumped into the cancer on my own years later?”

Regret is a tough one. After making a major decision that has life-changing consequences, few of us want to consider that we might have made the wrong call.  Instead, most women in Orenstein’s position say: “I’m so glad I had that mammogram. It saved my life!”

 Orenstein herself confesses, “that is what I used to say. I even wrote that in the pages of this magazine.

But if she hadn’t had the mammogram, and the cancer wasn’t discovered until she felt a lump, wouldn’t it have spread? Wouldn’t she be dead?

No. As Orenstein point out, “Breast cancer in your breast doesn’t kill you; the disease becomes deadly when it metastasizes, spreading to other organs or the bones.  Early detection is based on the theory, dating back to the late 19th century that the disease progresses consistently, beginning with a single rogue cell, growing sequentially and at some invariable point making a lethal leap.”

But science has advanced since the late 19th century, and we now know that just isn’t true. Sometimes breast cancer invades other parts of the body. Sometimes it doesn’t. The problem is that mammograms can’t tell us which cancers will spread.

                                  The Likelihood Of Over-Treatment               

What many women don’t realize is how commonplace the harmless cancers are. When someone is told she has breast cancer, she is likely to imagine a large, ugly lump, buried somewhere in her breast. Yet as Dr. David H. Gorski,  a surgical oncologist at the Barbara Ann Karmanos Cancer Institute who specializes in breast cancer explains: today approximately 30% to 40% of breast cancer diagnosis”  are examples of “ductal carcinoma in situ (DCI)”—cancers that begin in the milk ducts and “stay in place” (in situ). If they don’t spread, they are not life-threatening.  Some researchers call DCIs “Stage Zero” cancer. 

A recent study found that DCIS incidence rose from 1.87 per 100,000 in the mid-1970s to 32.5 in 2004,” he adds. “That’s a more than 16-fold increase over 30 years, and it’s pretty much all due to the introduction of mammographic screening.” (Mammograms are especially good at spotting DCIs. Unfortunately, they are not as good at finding the very aggressive cancers that are most likely to kill us.) )

“When it comes to DCIS, we don’t have a good handle on what percentage of DCIS will progress to invasive cancer, but we do know that a significant percentage will not.” For that reason, some argue that we should not tell patients that DCIS are “pre-cancerous.”  Labeling them “Stage Zero” would be more accurate.

Nevertheless, precisely because we don’t know, “oncologists tend to treat them all the same,” says Gorski.  “In other words, over diagnosis leads to overtreatment.”

 

Following diagnosis of DCIS, the most common scenario is for the oncologist to recommend lumpectomy, followed by radiation and hormone suppressive therapies such as Arimidex and Tamoxifen.  “The problem here is that women are not being educated about the nature of DCIS or the concept of ‘non-progressive’ breast cancers. There is still the black and white perception out there that you either have cancer, or do not have cancer,” writes Sayer Ji. http://www.greenmedinfo.com/blog/mammograms-linked-epidemic-misdiagnosed-cancers

As a result 1/3 of women diagnosed with DCI’s choose to have a mastectomy– sacrificing a breast, rather than asking for a less invasive lumpectomy. http://link.springer.com/article/10.1007/s10549-011-1430-5#page-1

                   Breast Cancer “Awareness” –the Problem with Pink

Fifty years ago, mammograms seemed to promise so much.  Trials that began in 1963 suggested that screening healthy women along with giving them clinical exams reduced breast-cancer death rates by about 25 percent. “Although the decrease was almost entirely among women in their 50s, it seemed only logical that, eventually, screening younger women (that is, finding cancer earlier) would yield even more impressive results,” Orenstein explains.  “Cancer might even be cured”

The solution seemed so clear. We just needed to persuade more women to go for annual mammograms.  In 1982, Nancy Brinker, who had lost a sister to breast cancer, founded the Susan G. Komen foundation, the organization that would create the Race for the Cure to raise funds for breast cancer research. Three years later, AstraZeneca, the giant international pharmaceutical company that makes the breast cancer drugs tamoxifen and Arimidex, invented “National Breast Cancer Awareness Month.” At the 1991 Race for the Cure in New York City, “Komen Greater NYC” distributed pink ribbons to every breast cancer survivor and Race participant.  (Pink was the color Komen National designated to promote awareness.)

 By 1993 Avon and Estee Lauder had begun to use the pink ribbon as a marketing tool, slapping it on their products, while giving a portion of their profits to the Foundation.  Companies that followed their example saw their sales rises, along with their image, and soon discovered that they could even raise their prices.   Pink ribbons created warm feelings.

 Soon we were awash in pink—pink lids on our yogurt, pink sneakers, pink dog leashes. We even have a “Breast Cancer Barbie” resplendent in a pink gown. Thus, Breast Cancer Awareness spread.

 The message was always the same, Orenstein explains:  “breast cancer was a fearsome fate, but the good news for woman was that through vigilance and early detection, surviving was within their control.”

“Control”—that was the goal.  From childhood, girls are trained to be good, to do the right thing. Going for annual mammograms is what we should do—not just for ourselves, but for our loved ones.  If you just found the tumor early, and your surgeon cut it out, you would be safe.  

While “there has been about a 25 percent drop in breast-cancer death rates since 1990 some researchers argue that treatment,” — not mammograms — “may be chiefly responsible for that decline,” Orenstein observes. “They point to a study of three pairs of European countries with similar health care services and levels of risk: In each pair, mammograms were introduced in one country 10 to 15 years earlier than in the other. Yet the mortality data are virtually identical. Mammography didn’t seem to affect outcomes. In the United States, some researchers credit screening with a death-rate reduction of 15 percent — which holds steady even when screening is reduced to every other year.

“Gilbert Welch, a professor of medicine at the Dartmouth Institute for Health Policy and Clinical Practice and co-author of a New England Journal of Medicine survey of screening published in November estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

Meanwhile, many were harmed because the diagnosis led to unnecessary surgery, hospital acquired infections, depression—and even divorce.

                  Over-Selling Mammograms and Magical Thinking

After years of being bombarded with the message that early detection saves lives—some women began to engage in magical thinking. At some subconscious level, they began to think that mammograms don’t just discover cancer, they prevent it.

Today, almost all of  us understand that mammograms don’t ward off cancer. But what many women still don’t understand is that “early detection” won’t necessarily save you. “I’ve watched friends whose cancers were detected ‘early” die anyway” Orenstein recalls.

Is this because their doctor didn’t do the right thing? 

No.  It’s because the most pernicious tumors move quickly and can metastasize in between mammograms. “Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase,” she points out..  “Even catching them ‘early’ while they are still small, can be too late: they have already metastasized. That may explain why there has been no decrease in the incidence of metastatic cancer since the introduction of screening.”

 That last sentence stopped me in my tracks. I double-checked, and discovered that, yes, the recent survey of mammography in the NEJM titled “”Effect of Three Decades of Screening Mammography on Breast-Cancer Incidence,” reveals that when it comes to “metastatic breast cancer, the kind that has by far the worst survival rate,” mammograms “appeared to have had no benefit at all.” http://www.pbs.org/newshour/rundown/2012/12/commentary-why-yearly-mammograms-can-be-harmful.html

                                                Marketing Fear

“And yet, mammography remains an unquestioned pillar of the pink-ribbon awareness movement,” Orenstein writes.  “Just about everywhere I go. . .  I see posters proclaiming that “early detection is the best protection.” . . . But how many lives, exactly, are being ‘saved,’ under what circumstances and at what cost? “

Here, Orenstein is not talking about the financial cost, but the emotional cost of “cancer awareness.”  Our fear of breast cancer has become so great that among women diagnosed with “stage zero” (DCIS) in one breast, the share choosing a double mastectomy rose from 6.5% in 1998 to 18.4%  in 2005.

This is not the case in other developed countries.  No one is as good at marketing fear as we are.

 “Our fear of cancer is legitimate “ Orenstein writes,” but how we manage that fear,”  she now realizes –“our responses to it, our emotions around it—can be manipulated, packaged, marketed and sold, sometimes by the very forces that claim to support us.”

As a result women who once asked for lumpectomies are choosing to have their entire breast removed.  Now young women are saying: “Just take them both off. I want to get it over with.” (Research shows that women who elect to have a lumpectomy are just as likely to survive as women who choose a mastectomy. But those who have a lumpectomy run the risk of having to go back for a second surgery.)

According to Dr. Todd Tuttle, chief of the division of surgical oncology at the University of Minnesota and lead author of a study on prophylactic mastectomy published in The Journal of Clinical Oncology, most of women diagnosed with “Zero Stage Cancer” who chose to have a double mastectomy did not have a genetic predisposition to cancer. They were not at a high risk of dying of cancer. Why, then did they make such a drastic decision?

 “Tuttle speculates they were basing their decisions not on medical advice but on an exaggerated sense of their risk of getting a new cancer in the other breast,” Orenstein explains. “Women, according to another study, believed that risk to be more than 30 percent over 10 years when it was actually closer to 5 percent” that they will have ) to go back for a second, more aggressive operation.

Tuttle suggests that breast cancer awareness has become “over-awareness.”

 “You could attribute the rise in mastectomies to a better understanding of genetics or better reconstruction techniques,” Tuttle says, “but those are available in Europe, and you don’t see that mastectomy craze there. There is so much ‘awareness’ about breast cancer in the U.S. I’ve called it breast-cancer overawareness. It’s everywhere. There are pink garbage trucks. Women are petrified.”  

Part two of this post will begin with a list: “Ten Things Every Woman Should Know about Breast Cancer,”  including that fact that, whether or not you go for annual mammograms, your chances of dying of breast cancer are very, very slim.

I part two, I also will discuss:

— the importance of “shared decision-making”– which insures that patients are fully aware of the risks as well as the benefits of any test or treatment;

–whether “watchful waiting” might be an appropriate strategy when a medium–risk asymptomatic woman is diagnosed with breast cancer;

–how much the Komen Foundation is spending on “awareness” vs. research;  

— why the awareness rallies always feature “survivors” (many of whom are blissfully unaware that they never had invasive breast cancer in the first place), and rarely focus on the women facing the last stage of breast cancer—often with great grace and courage.

When it comes to health care stories, the media prefers “Feel Good News.” No one wants to read about the cures that didn’t work. Few really want to know that mammograms can hurt women. These stories don’t draw eyeballs. 

Thus, women diagnosed with breast cancer too often find themselves on a conveyer belt headed for the OR. .

The Preventive Services Task Force’s (PSTF’s) recommendations on mammograms were met with rage. This is what happens when health care policy is driven, not by Science, but by public opinion polls, the media and self-perpetuating PR machines.

We need experts—doctors and medical researchers—shaping health policy.  But polls show that many Americans are wary of “experts.”

Finally, in part 2, I will talk about what happened the last time Peggy Orenstein went for a mammogram.

                   

 

 

13 thoughts on “Breast Cancer “Awareness”: Marketing Fear — Part 1

  1. Another interesting aspect of this story that I hadn’t fully appreciated before is how misleading five year cancer survival data can be. The author noted that if 100 women discovered that they had breast cancer at age 64 and died at age 70, the group’s five year survival rate would be 100%. If the same group didn’t discover their cancer until age 67 and still died at 70, the five year survival rate would be zero.

    Even if we have good data that shows that less aggressive screening in other developed countries does not affect life expectancy of women with breast cancer, it’s hard for me to see that U.S. practice patterns will change in any meaningful way even if we move away from the fee for service payment model in the absence of substantive tort reform that gives doctors robust safe harbor protection from failure to diagnose lawsuits if they follow evidence based guidelines and protocols. I’m a fan of shared decision making but I think safe harbor protection from failure to diagnose lawsuits is critical in our litigious society.

    • Barry–

      I would just add that in the state of Washington, if a doctor follows “shared decision-making” protocols it is very very difficult to sue him. The state passed this legislation a few years ago.

      Moreover, when patients go through shared decision-making they are much less likely to regret their decision–and much less inclined to sue. This, it seems to me, is the best outcome.

      Finally, I think that as more women read articles like this one, many will decide not to go for mammograms. I know quite a few women who haven’t had a mammogram for years. But this is an individual choice. And at this point, the issue is so charged, emotionally, that I don’t think we can refuse to pay for mammograms.

  2. The problem here is that the correct answer to almost all our questions about management of breast cancer is “I don’t know.”

    As Orenstein points out, while it is true that some DCIS and some invasive cancers do not lead to lethal disease, it is equally true that some do. The problem is that after fifty years of studies we have no idea how to distinguish one from the other.

    As the writers from the Nordic Cochrane project pointed out in their summary of their now famous meta-study “it is rational to seek screening mammography, and it is also rational to avoid screening mammography.”

    In the face of this uncertainty, extremists on both sides of the issue trumpet their viewpoint as if it were certain. Orenstein chronicles her conversion from one side of the issue to the other. She raises awareness of the issue, but her advocacy of a new extreme position does no more good now than it did when she was an equally fierce advocate for the other side.

    The reason the state of knowledge is so inconclusive is that the studies that are the basis of this discussion are so poorly done. Issues of statistical power, quality of mammograms and of management, crossover, and accidental sabotage by confused doctors and nurses have made the critical studies uninformative despite major good faith efforts, involvement of hundreds of thousands of women, and expenditure of millions of dollars. In the absence of new very large and very well designed long term randomized studies — involving hundreds of thousands of women over decades — we will not have the answers.

    The state of public perception of breast cancer management makes it extremely unlikely that such studies can be performed. Women will simply not allow themselves to be randomized to treatments on either side of the issue that will result in their getting management they disagree with. Allowing women to volunteer for one or the other limb of a study does not provide for satisfactory randomization and would poison the result. Once early results emerge, preventing crossover will be impossible. Doctors and other professionals tend to hold strong opinions about this issue, and will be poor advocates in urging enrollment in randomized studies and staying in the studies for years.

    In the end, patients are trapped in an unsatisfactory situation. On the one hand, they can gamble that they will not develop cancer or that cancers they do develop will be non-lethal; on the other hand they can submit to diagnosis and management that may result in unnecessary surgery, radiation, and chemotherapy with their attendant risks and injuries.

    This is a Dirty Harry situation: “Ask yourself, do you feel lucky today?” Unfortunately, as things stand there is no way out.

    • Pat-

      I think Orenstein’s point is not that women shouldn’t have mammograms, but that
      they should be
      told about the risks and benefits. The fact that so many women diagnosed with “zero stage cancer” choose to have a mastectomy–or even a double mastectomy, removing a perfectly healthy breast–is troubling.
      In the post I quote one doctor saying that this is not happening in other countries. As a nation, we are better at “marketing fear” than anyone else. (I think of how easy it was to persuade the American public that there were weapons of mass destruction in Iraq.)

      I wish that both Medicare and more and more private insurers would cover “shared decision-making” that follows the protocols created by the Informed Decision-Making foundation. (Women are given pamphlets to take home that explain the odds of benefit and the odds of risk.They are also given videos of other women explaning what they decided to do –and why. (The videos show women who decided to have a mammogram, and who decided not to have a
      mammogram as well as women who decided to have a lumpectomy after being diagnosed and women who decided to have a mastectomy.)

      I personally find the odds compelling. The chances of being harmed by a mammogram are about 10 times the odds of being “saved.” Moreover, the odds of dying of breast cancer– even if you never have a mammogram– are so much lower than most women think. (Surveys show that many of us think that the odds are about 30%.) We’ve oversold the danger of breast cancer, as well as the benefits of mammograms. (If I have a mammogram every year for ten years, my chance of dying of breast cancer is reduced by just a fraction of 1%.)
      Those odds made me decide not to have any more mammograms years ago. (This was after a false positive when I was quite young. I did some reading.)

      Whether one decides to go for a mammogram or not, I think we would all be better off if we were not so afraid of cancer.

      At this point in time, I believe that “shared decision-making” is the best answer to the situation. Every woman shoudl have the opportunity to make an informed choice–calmly– after being given all of the information. No one (including her doctor) should try to tell her what the “right answer” is for her. (I feel that much depends upon your temperament, and your age.

      Regarding the research, you’re entirely right. It hasn’t been done well, and now, (because we’re so terrified) few women would be willing to be part of a randommized trial. What we need, is not a “cure” for the multiple cancers that we call “breast cancer” (unless we get very lucky, this is probably a long ways off) but, as you say, research that would let us identify which tumors are likely to progress and which will remain “in place.”

      Finally, it’s troubling to discover that much of the money raised by the “race for a cure” goes into more “breast awareness” rather than into the reserach that is needed. I just hope it will be done in another country(ies). I also wish more of the money would go into counseling for women who are dying of breast cancer so that they don’t suffer so much . . .

      • My problem with Orenstein’s article is that although it does eventually cough up some balanced facts, it starts out as a sensationalistic statement of one point of view. Obviously, she wants to sell papers and attract attention, and equally obviously she feels betrayed by advice she received earlier and is angry.

        It is important to realize that statements like “the chances of being harmed by a mammogram are about 10 times the odds of being ‘saved'” are not necessarily correct. That is one way of interpreting the data, but since the data are so poor the statement, as the Cochrane group makes clear, may not be correct. It is equally logical to argue that the rate of “surplus” biopsy and treatment is about three times the rate of being “saved,” based on exactly the same data, and that it is impossible at this time to decide what is surplus and what is lifesaving in advance of doing the procedures and treatments.

        Orenstein makes similar overstatements over and over (for example at one point she scoffs at a statement that mammograms prevent 15% of breast cancer deaths, then proceeds to cite data that the rate is actually “4-14%,” with the high end of her own estimate essentially the same as what she complained about.) The whole statement that DCIS is not cancer is also highly controversial (although the statement the LCIS is a risk marker not a cancer is generally accepted.)

        You are certainly right that the chance of dying of breast cancer is not 30%, and that polling data like that is the result of overemphasis of the disease. In reality, there are about 40,000 breast cancer deaths a year in the US, about the same as the rate of death from car accidents or from guns if suicide is included, and much less than the risk for women of death from stoke or heart attack. About one in nine women are diagnosed with breast cancer during their lifetime, up from one in eleven in the pre-mammogram era, and that undoubtedly includes many women who will not die of breast cancer, with the death rate in the range of one in three and one in four of the occurrence rate — although again we have no way of knowing in advance who is on which path.

        It is also interesting to note that data Orenstein cites about the rate of breast cancer metastases are also colored heavily by technical improvements in the diagnosis of metastases, with new approaches discovering metastatic disease previously undiagnosed. Improvements in imaging are part of this, but the biggest factor is the routine use of sentinel node biopsy in initial breast cancer surgery, whereas previously many women with small breast cancers did not routinely get node biopsies because the then-current techniques of node biopsy had high rates of complications. Just as there are more diagnoses of breast cancer there are now many more diagnoses of metastases that previously would have been undetected. Early detection of cancers has not reduced the rate of metastatic disease, but more sensitive detection of metastases has increased the recorded rate of metastatic disease, some of which are undoubtedly non-lethal as well, throwing off this whole calculation.

        In the end, my point is that we are in an unfortunate position where it is impossible to make informed scientific decisions about breast cancer because the science is not there. To pretend anything else is to be misleading. What is true is that women need to be better informed about this, preferably in a non-sensational way. It is definitely true that the Pink Ribbon people have sensationalized their viewpoint (and have definitely benefitted from donations and publicity from interests with financial stakes in their position,) but it is also unfortunately true that articles like Orenstein’s probably require sensationalism to play their role in selling papers, something inherent in a mainstream media market. Sensationalism even plays a role in scientific publications, where aggressive champions of positions advance their careers over scientists who are more inclined to offer quieter and more balanced arguments.

        In the end, the whole question is your personal tolerance of risk and your evaluation of the weight of various risks, and the role of health care providers in presenting the risks in an honest way.

        As for the future, we will undoubtedly learn more about chemotherapeutic treatments of breast cancer — perhaps leading to “magic bullets” that can make the issue of early detection moot. We may find that early radiation or chemotherapy for less advanced cancers are not necessary, based on management trends under evaluation in Britain and elsewhere of using lumpectomy only to treat early cancers followed by “watchful weighting” that will lead to skipping radiation entirely and treating surgical failures (about 11% in recent reports) with mastectomy and possible chemotherapy. However we are unlikely to learn much more about the value of mammography or the prognosis of various types of cancers if left unattended, since women are likely to refuse to be the subjects of that sort of study in sufficient numbers and under randomized conditions, no matter what their personal viewpoint on the issue.

  3. Pat S.–
    Thanks for replying.
    Probably you have read . Woloshin Schwartz and Welch on the stats regarding breast cancer?
    Do you think that they are sensationalizing?
    What about the the Nov. article in the NEJM?
    I know Woloshin and Schwartz personally, and am impressed by the depth and objectivity of their work. (They were very generous with their time when I was writing “Money-Driven Medicine.)
    And I find Welch’s book “Are You Sure You Want to Be Tested for Breast Cancer?” excellent.
    Perhaps you feel that Orenstein or Woloshin,Schartz and Welch are blaming oncologists and radiologists for the uncertainties. But that is not their point. What they don’t like is the money-driven aspect of pushing asymptomatic people to go for various types of screening and scans. They have written brilliantly about the advertising that places like Sloan Kettering do– it’s fear-mongering at its finest.
    Here is one of hte hospital’s ads:

    “The early warning signs
    of colon cancer”:
    ~~~~~~~~~~~~~~~~~~~~~~
    You Feel Great
    &
    ; Have a Healthy Appetite
    You’re Only 50. ”

    As for Orenstein, I think you’re being pretty hard on her when you write: “it starts out as a sensationalistic statement of one point of view. Obviously, she wants to sell papers and attract attention, and equally obviously she feels betrayed by advice she received earlier and is angry.”
    This is what she writes in the opening section where she describes how she feels today: “As study after study revealed the limits of screening — and the dangers of overtreatment — a thought niggled at my consciousness. How much had my mammogram really mattered? Would the outcome have been the same had I bumped into the cancer on my own years later? It’s hard to argue with a good result. After all, I am alive and grateful to be here. But I’ve watched friends whose breast cancers were detected “early” die anyway. I’ve sweated out what blessedly turned out to be false alarms with many others.”

    First, she never says that her life was NOT saved by the mammogram. She says she doesn’t know. Later she makes the very clear case in favor of mammograms: “If Welch is right, the test helps between 4,000 and 18,000 women annually. Not an insignificant number, particularly if one of them is you, yet perhaps less than expected given the 138,000 whose cancer has been diagnosed each year through screening.”
    Secondly, I don’t hear anger in the opening of her piece– do you? Nor do I
    hear someone who is seeking attention.
    In terms of her attitude toward her doctors when she was 35, she writes: ” My only solace was that the system worked precisely as it should: the mammogram caught my tumor early, and I was treated with a lumpectomy and six weeks of radiation; I was going to survive.”

    Her “grief ,anger and confusion” are directed, not at her doctors, but at fate. When you’re 35, you don’t expect to be told you are going to die. Her grief is premature mourning for herself.
    That is exactly the way I felt when I was told, at about that age, that it seemed I had breast cancer, but should come back for a second mammogram. I was going on vacation the next day, so had to wait two weeks.
    I didn’t blame the folks who did the mammogram. They were very nice, and emphasized how uncertain they were. Just to be safe, I should have a second test.
    That made sense (and still does). But at the time I had very young children (under 6). My grief, anger and confusion centered on them. How could I leave them.? How would they feel? How could I explain? Who would take care of them?

    The experience was painful, but no one is to blame.
    This is the risk you take when you decide to have a mammogram in a world where the results of mammograms often are so uncertain. (DCIs may progress; they may not. As you say they are a “marker”.)
    If truth be told, this is the risk that you take when you undergo many forms of medical care. As Atul Gawande tells us: medicine is shot through with “ambiguities and uncertainties.” His humility in the face of the unknowns has always impressed me.
    Doctors who pretend that they “know” (that you should go for a mammogram, for instance) have always annoyed me. I prefer doctors who say: “We don’t really know,but from the evidence we have, we think. ..”

    After that false positive (and the second test showing it wasn’t cancer), I decided I didn’t want to go through that experience again, so in future years, I did not go for mammograms.
    Here is how what scientific knowledge that we had at the time informed my decision: Cancer, including breast cancer seems to run in families. I come from a very large extended family, and there is no diagnosed cancer (of any kind) in my family.
    Secondly we knew, even back then, that if you have children and breast-feed them the chances that you will develop breast cancer are reduced. (As you no doubt know, nuns are at significantly higher risk than other women.) I had nursed each of my chidlren for more than a year.
    So I decided that I was not taking a big risk by not going back for mammograms in the future. (OF course the odds only tell us what is likely to happen to a group of women, not what is likelyl to happen to me. But I like to put life decisions in context by looking at the odds.)
    Finally, Orenstein emphasizes that fewer women are dying of breast cancer probably because treatments are getting better. But of course women wouldn’t undergo those better treatments if they weren’t diagnosed in the first place. . . .
    Finally, regarding her regarding her writing style (which you find sensationalistic) :
    Pat, you probably don’t realize how heavily edited the NYT Sunday magazine is. (I know because I worked there, as an editor.)
    The Magazine’s editors re-write and re-write. They change leads. They re-write sentences. They tear the story apart and put it back together again. For a writer it can be a tortorous (and disappointing) experience.
    Finally, after publishing the piece in the Times, Orenstein wrote something on her blog which suggests that rather than being a writer who is trying to “sell newspapers” she is very interested in the “wonky” side of breast cancer:. There, she confides:
    “There were a couple of things that got cut from my New York Times Magazine piece on breast cancer that I wish I could’ve squeezed in. One is kind of wonky, which is why it was dropped, but super important. It’s about data collection, based on a discussion I had with Dr. Peter G. Bach at Sloan-Kettering: It surprised me to learn how little cancer data the U.S. collects, though it is vital to improving treatment. We know how many cases of cancer there are and the stage of diagnosis, but unlike Scandinavian countries, we don’t keep track of which therapies are used or what happens to patients over the long-term. I could write a whole piece on publicly accessible, non-proprietary data collection and why we need to do it. But I just wanted to at least put it out there. Breast Cancer Action talks a lot about this one, and they are […]http://peggyorenstein.com/blog/outtakes
    If we ever do get good reserach that helps us determine which cancers are likely to progress, I suspect it will come from Scandanavia.

  4. Anyone who makes a claim that they know or have discovered that mammography is unnecessary or that breast cancer management is mistaken is choosing to adopt a position for the sake of argument that is not upheld by available data. Anyone who makes the claim that mammography is necessary and that aggressive patterns of breast cancer management is warranted by existing evidence is choosing to adopt a position not upheld by available data. Any academic researcher who makes these claims is engaging in an argumentative position, most likely for the sake of careerism.

    The truth is we just don’t know. We don’t know.

    This is news, and Orenstein makes this into a big story, because it flies in the face of what has become a major political, industrial, and economic force in the US since 1980 — the whole Pink Ribbon industry that has done such a great job of convincing most American women that mammography, breast cancer treatment, and breast cancer “awareness” is of almost religious importance.

    It is equally wrong to argue either side of this issue as if there are really known answers. The intellectually honest position is to say that we don’t know, and to describe the fact that we don’t know if mammography is beneficial on a population basis, don’t know if any given breast cancer is potentially lethal, don’t know if the treatment of any given cancer is worth the risks of treatment.

    Two housekeeping issues: Lobular Carcinoma in Situ (LCIS) is a risk marker for breast cancer, but Ductal Carcinoma in Situ (DCIS) is a cancer. All lethal cancers start as DCIS, but not all DCIS becomes lethal. All lethal cancers also go on to become invasive carcinoma, but not all invasive carcinomas go on to be lethal cancers.

    Second, it would be more correct to say that not nursing (and delaying childbirth till after 30, and certain dietary habits) increases the risk of breast cancer than to imply that nursing decreases the risk of breast cancer.

    Finally, as far as the potential for breast cancer research from Scandinavia, it is interesting to note that the “aggressive” position for breast cancer management and mammography actually was codified in Sweden, the Swedish Two-County Study is the holy scripture of the pro-mammography position, and that approach is codified into the Swedish health system. Finland is definitely in the Swedish orbit. Denmark is one of the sources of the anti-mammography movement.

  5. Pat S.–

    Thanks for making the distinction between LCIS and
    DCIS.
    The logic of “it would be more correct to say that not nursing (and delaying childbirth till after 30, and certain dietary habits) increases the risk of breast cancer than to imply that nursing decreases the risk of breast cancer” escapes me.

    I can’t think of any responsible researcher M.D. who takes the position that “mammography is unnecessary” and so I’m not sure who you’re talking about when you refer to people taking a position to advance their careers.

    Schwartz, Woloshin and Welch simply say that asymptomatic, normal-risk women may want to think twice before being screened for cancer. Welch suggests that we replace the tagline “Mammograms Save Lives with “Mammography has both benefits and harms — that’s why it’s a personal decision.”

    Orenstein is not “making a big story” out of this. It is a big story for women.

    (“Keep Calm and Collect More Data!” is great advice for a medical reseracher, but not much help to a woman who is trying to decide whether to have a mammogram, or whether to have lumpectomy with or without radiation. (The UK work sounds very interesting–could you send me a reference for more information? From what I have read “watchful waiting” is not considered an option for women diagnosed with breast cancer in this country.. )

    Pat, I’m not quite sure why this story annoys you so much. It’s goal is simply to inform women of what we know about potential risks and benefits.
    This reader’s comment sums up the purpose of the article: “As a retired MD who has a family history riddled with breast cancer that has been passed onto our daughters, I have followed the debate on its diagnosis and treatment for 40+ years. This synopsis is one of the most complete, easily understood and least biased that I have read, especially as it is written by a breast cancer survivor.
    Congratulations Ms. Orenstein on great job on a difficult subject. Every women and every man with a positive family history should save this article and then take it with them well highlited, along with a list of their questions to their first meeting with an oncologist after they get over the shock of hearing; “You have breast cancer.”

  6. Prognosis and survival rates for breast cancer vary greatly depending on the cancer type, stage, treatment, and geographical location of the patient. Survival rates in the Western world are high; for example, more than 8 out of 10 women (84%) in England diagnosed with breast cancer survive for at least 5 years.`*-`

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    • Joya-

      You’re entirely right that survival rates vary greatly.

      But be wary of “five-year surival rates.” They may simply show that in a particuarly country, many women have mammograms and so are
      disagnosed earlier–but that doesn’t mean they live longer. For instance, imagine identical twins who both have cancer.
      One live in the U.S., has annual mammograms and is diagnosed at age 50. Her sister, who lives in Switzerland, doesn’t have mammograms as frequently. But when she is 53, she too is diagnosed. They both die at 56. The sister in the U.S. adds to our list of patients who survived five years, but the only real difference is that the sister in the U.S. spent three extra years knowing that she had cancer . . ..

  7. We can debate the risks and “actual” benefits of breast and cervical screening, but my concern has always been the exclusion of women from this discussion.
    Screening is supposed to be an option, elective, yet IMO, many women don’t feel they can reasonably refuse pap tests and/or mammograms. (and for American/Canadian women, add routine pelvic and breast exams)
    We’re told we “must” and “should” test and the headlines use the same schoolmaster tone, “women are still failing to have their screenings”….umm, whatever happened to informed consent?

    I have never accepted this thinking, did my own research and have declined screening. It became clear very quickly that women did not apparently, have that right or it certainly wasn’t respected by doctors and other groups. Study after study concluded women who didn’t screen were immature, uneducated, reckless/risk-takers and even non-voters, not one study noted that some women have exercised their legal right to decline an “elective” screening test or have made an informed decision not to screen.

    I have always believed that honesty, informed consent and evidence based screening provides the best outcomes.
    IMO, women’s cancer screening is loaded with vested and political interests and well-entrenched paternalistic attitudes, and this fuels non-evidence based testing, excess, the dismissal of informed consent. (and even consent itself) We focus on screening targets and recommendations become unwritten laws, we treat women like sheep, rather than competent adults. Others believe they have the right to make decisions for us and accept risk on our behalf.

    I’ve found “official” sources of information to be unreliable and always do my own research. I declined breast screening…Prof Michael Baum, UK breast cancer surgeon, has written some informative articles on breast screening. Also, the Nordic Cochrane Institute is a great source of real information, their brochure on breast screening is a must read for any woman thinking about breast screening.
    Attitudes need to change…women should be the ones making an informed decision to accept or decline testing.

    Here in Australia we have an outdated and excessive pap testing program that has resulted in huge referral rates for colposcopy/biopsy/”treatment”. We “treat” more than 10 times the number of women than a country like Finland. (since the 1960s they’ve had a 6-7 pap test program, 5 yearly from 30 to 60)
    Compare our 26 pap test program with the new Dutch program: no population pap testing, instead women will be offered 5 hrHPV primary tests (or self-test with the Dutch invented, Delphi Screener) at ages 30,35,40,50 and 60 and only the roughly 5% who test HPV+ will be offered a 5 yearly pap test. The Dutch follow the evidence, we maximize risk for zero additional benefit. (to women)

    We’ve also, extending the breast screening program to include women aged 70 to 74…ignoring the evidence, we press on…the inclusion of these women will probably provide no benefit, and will probably mean more women are over-diagnosed and over-treated.

    When screening does not reflect the evidence and operates outside proper ethical standards (and the law…informed consent, and even consent itself ie. no birth control without a pap test and perhaps, even a routine pelvic and breast exam) it’s not cancer screening and IMO, amounts to medical abuse.

    • Elizabeth–
      Thanks much for a very interesting and informative comment.

      I was not aware of what the Dutch are doing with Pap smears.

      We need to pay more attention to what is happening around the world.

      And I agree, doctors need to listen to women. (Thankfully, these days more and more doctors ARE women.)