While Flying – Frustration surrounds Me

For starters I was on a flight for a happy family event. The day started great. I got a lot of work done on our official Advocates for Breast Cancer website. I got to the airport at the right time even though LAX was so crowded because there’s a problem with the TSA and there’s long lines and less TSA agents to help move the lines faster.

airplaneI was a little mad at myself because I was lazy and went through the machine that I have been told by a radiation oncologist (whom I have great respect for) I should probably skip and not expose myself to the radiation. It just seemed faster. I started in an airport lounge with my computer figuring I’d work a little more on my Breast Cancer News at: http://www.scoop.it/t/breast-cancer-news and my Breast Cancer Advocacy stories at: http://www.scoop.it/t/breast-cancer-advocay. Sounds simple enough.

I searched the internet for abstracts and news stories about breast cancer and found what I hoped would make a difference with advocacy for breast cancer (and other cancers). I even discovered I spelled advocacy wrong today. Certainly I’m human and can make a spelling mistake. I sent out all of my good wishes to my fearless friends and organizations on Twitter trying to make pretty graphics while I sent energy to all of these incredible people who I have met either personally or through social media. So it seemed like it was time to get ready to enjoy a special family weekend.

#BCSMmagesI plugged my computer in and I saw a note from AnneMarie to look at Jody’s blog. I already suspected it’s bad news. Jody Schroger is one of our great moderators every Monday night at 6pm PST for #BCSM (breast cancer social media). It’s very bad. After years of NED (no evidence of disease), Jody has joined the 30% of breast cancer thrivers that has metastatic breast cancer (MBC).

And Jody. Why? She is a fantastic person who runs our #bcsm (breast cancer social media community) meetings with Alicia Stales and Dr. Deanna Attai. Why her? Welcome to the world of breast cancer. It’s all bad luck. Whoever gets Stage IV it has nothing to do with them not taking care of themselves or what stage they started with the disease.

I keep thinking everyone knows that I have talked about the statistic that about 30% of early stage breast cancer patients will go on to become metastatic. That’s Stage IV. Early stage breast cancer is what I had when I did chemo, radiation, and had a recurrence a year and half later. Stage IV means that the breast cancer has managed to travel from the breast to other body parts. With breast cancer it’s usually the bones, brains, liver, or lungs. Stage IV is a chronic disease. It is not curable, but can be contained. It depends on many factors how long it can be “contained”. Usually certain pathologies help because there are more targeted therapies that can work on keeping the cancer at bay. For those that don’t understand Stage IV breast cancer is breast cancer that has traveled to another body part. Let’s say it goes to the bones. It’s not bone cancer but still breast cancer that has metastasized to another body part.

MBC_Infographic_01_v14I am angry. This disease is like dominoes. This disease is so cruel. I watch as friends that I care about get the bad news. The reason I did the chemo-hoping no bad cells could hide from all the nasty toxic chemo that I did because my breast cancer made it in to my lymph nodes giving it a chance to enter my blood stream. We never know if some cells hid out and they are just waiting to say- GOT YA.

OK here’s the Stage IV lesson. They have drug regimens that patients go through that can keep the cancer at bay for some time and then the cancer finds a way to outsmart the therapy. So the MBC patient moves on to the next drug. The trick is to try to find regimens with quality of life for as long as you can until the cancer outsmarts the drug. Then it’s time for nerve-racking scans to see if the drug is working. If the medications are working it’s great. The patient stays the course. Eventually though comes the scan that shows the cancer is growing and trying to get to more body parts. Many MBC patients can live a very long time especially with certain pathologies that lend itself to drug therapies that can help contain the disease. Today’s MBC patient can even have a chance of seeing NED (no evidence of disease). But the cancer still comes back and outsmarts the treatment. I respect everyone who has metastatic disease because they have to live knowing they are on a slope that eventually their disease will no longer respond to the drugs we have available today.

At the same time I want to be clear that today’s MBC patient is quite alive and can have a long quality of life.

At the beginning when diagnosed there is so much shock to the body and mind. I have watched my best friend Li Bailey go through the process quicker than others because unfortunately (bad luck) she had a pathology that today we have less medications to fight it with.

This is just not fair.

think-before-you-pink-1024x574So why am I so frustrated? I am running a non-profit that aligns itself with breast cancer organizations that are working to help breast cancer patients. After learning that Komen’s  junk campaigns were based on lies like telling women if they got mammograms they had a 98% chance of beating breast cancer. This is so not true. Komen also raised the most money of any breast cancer organizations. There was a great article in the New York Times, written by journalist Peggey Orestein that I scooped today called “Our Feel-Good War on Breast Cancer,” I published the article in my last blog. Meanwhile Katherine O’Brien of the Secretary of the MBCN (Metastatic Breast Cancer Network) wrote a great summary, overview and response to the article called Our Feel-Good War on Breast Cancer: MBCN Responds. In her response to Komen’s use of funds towards metastatic research, she writes, According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.”

pinkcultureThere has been a a lot of backlash against Komen and as some of you understand the overselling of pink culture I don’t have to explain the issue. I hope that you had time to read these articles. They are so well written.

I think there is another problem with Komen. I think the biggest backlash against them is that they became arrogant. People called them out for having pink parades that did not include the metastatic community because they didn’t want sick people marching in their parades, since it didn’t give you that warm fuzzy feeling of survivors raising their pink pom poms because they survived the disease. Komen thumbed their nose at the metastatic community.

I have to fight for the mets community. I can’t help it. People are dying around me. I don’t like that. People are doing all sorts of difficult medical regimens to stay alive. I have to open my big mouth and do all I can.

I promise you I won’t stop until MBC is a disease that can be reversed or people can live with Quality of life. I will continue to see that we don’t continue having corporations making known toxins that cause breast cancer.

One positive thing that happened is when the #BCSM Community group met we all rallied around Jody. Ironically I was flying back from the weekend on Monday night and joined the meeting on a flight that had wifi. At first I was confused if the timing would work. Then I realized as long as I started the meeting at the right time, the hour would be the same no matter if I flew in to a different time zone. So many of us were frustrated, angry and wanted Jody to know we have her back. This community means so much to me and I am grateful that at least we can come together during the good and bad times.

I have a lot more to say about all of this. For now I am going to publish this first part and continue talking about some other things that have added to my frustration. Stay tuned.

Read all About It – Our Feel Good War on Breast Cancer

I scooped the article, Our Feel Good War on Breast Cancer in my “Breast Cancer Advocacy” news articles at the end of last week and it also came out in the New York Times weekend edition. There was a wonderful response to this article by Katherine O’Brien, who is the MBCN (Metastatic Breast Cancer Network) Secretary called Our Feel-Good War on Breast Cancer: MBCN Responds.

I have another post that refers to some points in these articles, so I want to first have them on my blog. Although the original article is long, for those of you who haven’t heard about or had a chance to read the article, it explains so much of what I (and lots of other patient advocates) have written about when referring to “pinking responsibly” and telling the truth about breast cancer, pink culture, and the reason we haven’t come very far when it comes to metastatic breast cancer.

Katherine O’Brien’s response is not as long and picks out the major points of the article so well that I am going to publish it first. I will finish cleaning up my next post that refers to this article as well as other things happening that are very disconcerting to me. You can either follow the link to: Our Feel-Good War on Breast Cancer: MBCN Responds and/or the link to Our Feel Good War on Breast Cancer here or read below.

Our Feel-Good War on Breast Cancer: MBCN Responds

Tony Cenicola/The New York Times; Gabrielle Plucknette/The New York Times (umbrella, socks, oven mitt); A.J. Mast/Associated Press; Nam Y. Huh/Associated Press; Kyle Kurlick/The Commercial Appeal, via Associated Press; Dr. Scott M. Lieberman/Associated Press

By Katherine O’Brien, MBCN Secretary

Editor’s Note: Peggy Orenstein’s April 25, 2013 article–the cover story for this Sunday’ s New York Times’ Magazine, demonstrates a remarkable depth and thoughtfulness. It is long–but well-worth the effort to read. For those looking for a quick overview, we’ve prepared the following summary and added our observations where appropriate. We hope it will aid readers’ understanding of this important article as well as prompt further discussions. Please share your insights in the comment section below.

Initial Treatment and Recurrence | Journalist Peggy Orenstein wrote “Our Feel-Good War on Breast Cancer,”   subtitled “The battle for awareness has been won. So why aren’t more lives being saved?” Orenstein frames the article within her own breast cancer experience.  Sixteen years ago at 35, Orenstein had a screening mammogram that revealed early stage breast cancer. Her treatment, at that time, was a lumpectomy, as well as six weeks of radiation.

In 2012, at age 52, Orenstein had a nonmetastatic recurrence. She found the lump herself, nine months after her annual mammogram. Because of her prior treatment, Orenstein’s doctor recommended a unilateral mastectomy as well as Tamoxifen.

Early Detection Doubts | In 1996, at the time of her first diagnosis,  Orenstein credited her screening mammogram with saving her life. (“I considered myself a loud-and-proud example of the benefits of early detection,” she writes.) In 2013, following  the cancer’s recurrence, she has changed her mind.

Orenstein  details the US screening mammogram debate. The popular perception,  fueled in part by some nonprofits and pink-ribbon themed efforts,  is that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. According to Orenstein:

“Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. 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.”

We Say: This article can be summed up in one sentence: “Early Detection is Not a Cure.” Metastatic breast cancer can occur 5, 10,  15 or even 20 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

Overtreatment | Orenstein explains that  breast cancer isn’t a single disease. But early mammography trials were conducted before variations in cancer were recognized: “before Herceptin, before hormonal therapy, even before the widespread use of chemotherapy.” She then raises the question of overtreatment. Dartmouth’s Gilbert Welch  co-authored a study that estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

We Say: We agree with author and patient advocate Musa Mayer who says: “If we had spent a fraction of the dollars devoted to promoting screening on research to determine which DCIS lesions and tiny invasive breast cancers actually need treatment beyond surgery, and which do not, we’d be way ahead now.” Without knowing which tumors will metastasize, we must treat all of them alike. Worse, “good” mammograms may give some women a false sense of security.

DCIS Dilemma | The article says mammograms and improved imaging technology have resulted in a dramatic increase in the number of people diagnosed with ductal carcinoma in situ (D.C.I.S.),  in which abnormal cells are found in the lining of the milk-producing ducts. DCIS and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. “D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection,” writes Orenstein. “Theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate.”

We Say: One of our few quibbles with this article is its depiction of DCIS. We agree that most DCIS is successfully treated. But  the article cites an expert who says DCIS is “not cancer but a risk factor.”  This statement creates the overall impression is that DCIS is not a big deal. Again, in most cases DCIS does NOT go on to become invasive breast cancer, but unfortunately it can and does.

Confusing Statistics |  Orenstein say that the Komen organization, a mammogram/early detection proponent,  has been accused of citing deceptive five-year survival rates. Since these allegations first surfaced, Komen has stopped using the statistic in question.

We Say: NBCC does an excellent job of addressing this common misperception:

Mortality numbers tell the story more precisely than survival numbers. Screening skews the survival numbers:  The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives,  so it looks like survival for early stage breast cancer is 98 percent.

This is only a 5-year survival number—and includes the 20-30 percent of women who will have recurrence and may die of the disease later. . . Women die of metastatic disease, not primary breast cancer.

Incidence has risen during the past 20 years from 1 in 11 to 1 in 8, it’s now leveling off; mortality has declined slightly but a key point is incidence of stage IV breast cancer—the cancer that is lethal—has stayed the same; screening and improved treatment has not changed this.
Source: http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates

We Can’t Manage What We Don’t Measure: When will we start collecting meaningful statistics on metastatic breast cancer recurrence?  US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between.

As Orenstein notes, 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

  • NCI and SEER database record  incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.
  • We say that there are 150,000 US people currently living with metastatic breast cancer, but that’s basically a guess.
  • We know for sure that 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer  who were previously treated for early stage breast cancer? The cancer registry does not track them—until they die.

Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:

According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

There’s also the intertwined issue of funding research for the prevention of metastatic breast cancer vs. treatments that will extend the lives of those currently living with the disease:

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

We Say: MBCN’s slogan is “Fighting for Treatments to Extend Life.” So we appreciate Welch’s candor and dedication.  And, if we want to prevent metastasis, we may need to rethink our current approach to clinical trials.  During last year’s annual Metastatic Breast Cancer Conference, NIH’s Dr. Patricia  Steeg made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.”

Know The  Breast Cancer Facts | In her final paragraphs, Orenstein says we may have more breast cancer “awareness” but this “awareness” is fundamentally flawed: “All that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.”

We Say: Nicely done, Peggy. We’d be honored if you would join us at our 2013 Annual Metastatic Breast Cancer Conference, Sept. 21 at MD Anderson in Houston!

NMBCAD logo black smallMark Your Calendar: Peggy Orenstein’s article will go a long way in helping people understand breast cancer. As women living with metastatic breast cancer, we are committed to educating people about this disease. This article is a good start, but our reality remains poorly understood. That is why MBCN fought to establish  Oct. 13 as National Metastatic Breast Cancer Awareness Day. 

Let’s Keep Talking: On her Facebook post announcing the publication of this article, Orenstein said she hopes it will change the national conversation about breast cancer. We hope so, too. Peggy started the dialogue. Won’t you help us continue it?

4/29/2013 Editor’s Note: This copy has been revised to remove a disputed statistic concerning Stage II and Stage III metastatic recurrence, material that was directly quoted, as indicated,  from http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates. We will provide additional clarification if available.

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Our Feel-Good War on Breast Cancer

Tony Cenicola/The New York Times; Gabrielle Plucknette/The New York Times (umbrella, socks, oven mitt); A.J. Mast/Associated Press;
Nam Y. Huh/Associated Press; Kyle Kurlick/The Commercial Appeal, via Associated Press; Dr. Scott M. Lieberman/Associated Press.
By PEGGY ORENSTEIN
Published: April 25, 2013

So when the radiologist found an odd, bicycle-spoke-like pattern on the film — not even a lump — and sent me for a biopsy, I wasn’t worried. After all, who got breast cancer at 35?

It turns out I did. Recalling the fear, confusion, anger and grief of that time is still painful. 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.

By coincidence, just a week after my diagnosis, a panel convened by the National Institutes of Health made headlines when it declined to recommend universal screening for women in their 40s; evidence simply didn’t show it significantly decreased breast-cancer deaths in that age group. What’s more, because of their denser breast tissue, younger women were subject to disproportionate false positives — leading to unnecessary biopsies and worry — as well as false negatives, in which cancer was missed entirely.

Those conclusions hit me like a sucker punch. “I am the person whose life is officially not worth saving,” I wrote angrily. When the American Cancer Society as well as the newer Susan G. Komen foundation rejected the panel’s findings, saying mammography was still the best tool to decrease breast-cancer mortality, friends across the country called to congratulate me as if I’d scored a personal victory. I considered myself a loud-and-proud example of the benefits of early detection.

Sixteen years later, my thinking has changed. 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.

Recently, a survey of three decades of screening published in November in The New England Journal of Medicine found that mammography’s impact is decidedly mixed: it does reduce, by a small percentage, the number of women who are told they have late-stage cancer, but it is far more likely to result in overdiagnosis and unnecessary treatment, including surgery, weeks of radiation and potentially toxic drugs. And yet, mammography remains an unquestioned pillar of the pink-ribbon awareness movement. Just about everywhere I go — the supermarket, the dry cleaner, the gym, the gas pump, the movie theater, the airport, the florist, the bank, the mall — I see posters proclaiming that “early detection is the best protection” and “mammograms save lives.” But how many lives, exactly, are being “saved,” under what circumstances and at what cost? Raising the public profile of breast cancer, a disease once spoken of only in whispers, was at one time critically important, as was emphasizing the benefits of screening. But there are unintended consequences to ever-greater “awareness” — and they, too, affect women’s health.

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. Curing it, then, was assumed to be a matter of finding and cutting out a tumor before that metastasis happens.

The thing is, there was no evidence that the size of a tumor necessarily predicted whether it had spread. According to Robert Aronowitz, a professor of history and sociology of science at the University of Pennsylvania and the author of “Unnatural History: Breast Cancer and American Society,” physicians endorsed the idea anyway, partly out of wishful thinking, desperate to “do something” to stop a scourge against which they felt helpless. So in 1913, a group of them banded together, forming an organization (which eventually became the American Cancer Society) and alerting women, in a precursor of today’s mammography campaigns, that surviving cancer was within their power. By the late 1930s, they had mobilized a successful “Women’s Field Army” of more than 100,000 volunteers, dressed in khaki, who went door to door raising money for “the cause” and educating neighbors to seek immediate medical attention for “suspicious symptoms,” like lumps or irregular bleeding.

The campaign worked — sort of. More people did subsequently go to their doctors. More cancers were detected, more operations were performed and more patients survived their initial treatments. But the rates of women dying of breast cancer hardly budged. All those increased diagnoses were not translating into “saved lives.” That should have been a sign that some aspect of the early-detection theory was amiss. Instead, surgeons believed they just needed to find the disease even sooner.

Mammography promised to do just that. The first trials, begun in 1963, found 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 (that is, finding cancer earlier) would yield even more impressive results. Cancer might even be cured.

That hopeful scenario could be realized, though, if women underwent annual mammography, and by the early 1980s, it is estimated that fewer than 20 percent of those eligible did. Nancy Brinker founded the Komen foundation in 1982 to boost those numbers, convinced that early detection and awareness of breast cancer could have saved her sister, Susan, who died of the disease at 36. Three years later, National Breast Cancer Awareness Month was born. The khaki-clad “soldiers” of the 1930s were soon displaced by millions of pink-garbed racers “for the cure” as well as legions of pink consumer products: pink buckets of chicken, pink yogurt lids, pink vacuum cleaners, pink dog leashes. Yet the message was essentially the same: breast cancer was a fearsome fate, but the good news was that through vigilance and early detection, surviving was within their control.

By the turn of the new century, the pink ribbon was inescapable, and about 70 percent of women over 40 were undergoing screening. The annual mammogram had become a near-sacred rite, so precious that in 2009, when another federally financed independent task force reiterated that for most women, screening should be started at age 50 and conducted every two years, the reaction was not relief but fury. After years of bombardment by early-detection campaigns (consider: “If you haven’t had a mammogram, you need more than your breasts examined”), women, surveys showed, seemed to think screening didn’t just find breast cancer but actually prevented it.

At the time, the debate in Congress over health care reform was at its peak. Rather than engaging in discussion about how to maximize the benefits of screening while minimizing its harms, Republicans seized on the panel’s recommendations as an attempt at health care rationing. The Obama administration was accused of indifference to the lives of America’s mothers, daughters, sisters and wives. Secretary Kathleen Sebelius of the Department of Health and Human Services immediately backpedaled, issuing a statement that the administration’s policies on screening “remain unchanged.”

PR Newswire, via Associated Press; Tom DiPace/Associated Press; Gabrielle Plucknette/The New York Times (apron, sunglasses, flip-flop); Simon Fergusson/Getty Images.

Even as American women embraced mammography, researchers’ understanding of breast cancer — including the role of early detection — was shifting. The disease, it has become clear, does not always behave in a uniform way. It’s not even one disease. There are at least four genetically distinct breast cancers. They may have different causes and definitely respond differently to treatment. Two related subtypes, luminal A and luminal B, involve tumors that feed on estrogen; they may respond to a five-year course of pills like tamoxifen or aromatase inhibitors, which block cells’ access to that hormone or reduce its levels. In addition, a third type of cancer, called HER2-positive, produces too much of a protein called human epidermal growth factor receptor 2; it may be treatable with a targeted immunotherapy called Herceptin. The final type, basal-like cancer (often called “triple negative” because its growth is not fueled by the most common biomarkers for breast cancer — estrogen, progesterone and HER2), is the most aggressive, accounting for up to 20 percent of breast cancers. More prevalent among young and African-American women, it is genetically closer to ovarian cancer. Within those classifications, there are, doubtless, further distinctions, subtypes that may someday yield a wider variety of drugs that can isolate specific tumor characteristics, allowing for more effective treatment. But that is still years away.

Those early mammography trials were conducted before variations in cancer were recognized — before Herceptin, before hormonal therapy, even before the widespread use of chemotherapy. Improved treatment has offset some of the advantage of screening, though how much remains contentious. There has been about a 25 percent drop in breast-cancer death rates since 1990, and some researchers argue that treatment — not mammograms — may be chiefly responsible for that decline. 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 last November’s New England Journal of Medicine study of screening-induced overtreatment, estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

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. Why didn’t early detection work for more of them? Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. 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.

At the other end of the spectrum, mammography readily finds tumors that could be equally treatable if found later by a woman or her doctor; it also finds those that are so slow-moving they might never metastasize. As improbable as it sounds, studies have suggested that about a quarter of screening-detected cancers might have gone away on their own. For an individual woman in her 50s, then, annual mammograms may catch breast cancer, but they reduce the risk of dying of the disease over the next 10 years by only .07 percentage points — from .53 percent to .46 percent. Reductions for women in their 40s are even smaller, from .35 percent to .3 percent.

If screening’s benefits have been overstated, its potential harms are little discussed. According to a survey of randomized clinical trials involving 600,000 women around the world, for every 2,000 women screened annually over 10 years, one life is prolonged but 10 healthy women are given diagnoses of breast cancer and unnecessarily treated, often with therapies that themselves have life-threatening side effects. (Tamoxifen, for instance, carries small risks of stroke, blood clots and uterine cancer; radiation and chemotherapy weaken the heart; surgery, of course, has its hazards.)

Many of those women are told they have something called ductal carcinoma in situ (D.C.I.S.), or “Stage Zero” cancer, in which abnormal cells are found in the lining of the milk-producing ducts. Before universal screening, D.C.I.S. was rare. Now D.C.I.S. and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. In situ cancers are more prevalent among women in their 40s. By 2020, according to the National Institutes of Health’s estimate, more than one million American women will be living with a D.C.I.S. diagnosis.

D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection: theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate. The thing is, in most cases (estimates vary widely between 50 and 80 percent) D.C.I.S. will stay right where it is — “in situ” means “in place.” Unless it develops into invasive cancer, D.C.I.S. lacks the capacity to spread beyond the breast, so it will not become lethal. Autopsies have shown that as many as 14 percent of women who died of something other than breast cancer unknowingly had D.C.I.S.

There is as yet no sure way to tell which D.C.I.S. will turn into invasive cancer, so every instance is treated as if it is potentially life-threatening. That needs to change, according to Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. Esserman is campaigning to rename D.C.I.S. by removing its big “C” in an attempt to put it in perspective and tamp down women’s fear. “D.C.I.S. is not cancer,” she explained. “It’s a risk factor. For many D.C.I.S. lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old. We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?” In Britain, where women are screened every three years beginning at 50, the government recently decided to revise its brochure on mammography to include a more thorough discussion of overdiagnosis, something it previously dispatched with in one sentence. That may or may not change anyone’s mind about screening, but at least there is a fuller explanation of the trade-offs.

In this country, the huge jump in D.C.I.S. diagnoses potentially transforms some 50,000 healthy people a year into “cancer survivors ” and contributes to the larger sense that breast cancer is “everywhere,” happening to “everyone.” That, in turn, stokes women’s anxiety about their personal vulnerability, increasing demand for screening — which, inevitably, results in even more diagnoses of D.C.I.S. Meanwhile, D.C.I.S. patients themselves are subject to the pain, mutilation, side effects and psychological trauma of anyone with cancer and may never think of themselves as fully healthy again.

Yet who among them would dare do things differently? Which of them would have skipped that fateful mammogram? As Robert Aronowitz, the medical historian, told me: “When you’ve oversold both the fear of cancer and the effectiveness of our prevention and treatment, even people harmed by the system will uphold it, saying, ‘It’s the only ritual we have, the only thing we can do to prevent ourselves from getting cancer.’ ”

What if I had skipped my first mammogram and found my tumor a few years later in the shower? It’s possible that by then I would have needed chemotherapy, an experience I’m profoundly thankful to have missed. Would waiting have affected my survival? Probably not, but I’ll never know for sure; no woman truly can. Either way, the odds were in my favor: my good fortune was not just that my cancer was caught early but also that it appeared to have been treatable.

Note that word “appeared”: one of breast cancer’s nastier traits is that even the lowest-grade caught-it-early variety can recur years — decades — after treatment. And mine did.

Patrick Hamilton/Newspix/Getty Images; Matt Born/The Star-News, via Associated Press; Gabrielle Plucknette/The New York Times; Sharpie, via Associated Press; U.S. Postal Service, via Associated Press.

Last summer, nine months after my most recent mammogram, while I was getting ready for bed and chatting with my husband, my fingers grazed something small and firm beneath the scar on my left breast. Just like that, I passed again through the invisible membrane that separates the healthy from the ill.

This latest tumor was as tiny and as pokey as before, unlikely to have spread. Obviously, though, it had to go. Since a lumpectomy requires radiation, and you can’t irradiate the same body part twice, my only option this round was a mastectomy. I was also prescribed tamoxifen to cut my risk of metastatic disease from 20 percent to 12. Again, that means I should survive, but there are no guarantees; I won’t know for sure whether I am cured until I die of something else — hopefully many decades from now, in my sleep, holding my husband’s hand, after a nice dinner with the grandchildren.

My first instinct this round was to have my other breast removed as well — I never wanted to go through this again. My oncologist argued against it. The tamoxifen would lower my risk of future disease to that of an average woman, he said. Would an average woman cut off her breasts? I could have preventive surgery if I wanted to, he added, but it would be a psychological decision, not a medical one.

I weighed the options as my hospital date approached. Average risk, after all, is not zero. Could I live with that? Part of me still wanted to extinguish all threat. I have a 9-year-old daughter; I would do anything — I need to do everything — to keep from dying. Yet, if death was the issue, the greatest danger wasn’t my other breast. It is that, despite treatment and a good prognosis, the cancer I’ve already had has metastasized. Preventive mastectomy wouldn’t change that; nor would it entirely eliminate the possibility of new disease, because there’s always some tissue left behind.

What did doing “everything” mean, anyway? There are days when I skip sunscreen. I don’t exercise as much as I should. I haven’t given up aged Gouda despite my latest cholesterol count; I don’t get enough calcium. And, oh, yeah, my house is six blocks from a fault line. Is living with a certain amount of breast-cancer risk really so different? I decided to take my doctor’s advice, to do only what had to be done.

I assumed my dilemma was unusual, specific to the anxiety of having been too often on the wrong side of statistics. But it turned out that thousands of women now consider double mastectomies after low-grade cancer diagnoses. According to 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, there was a 188 percent jump between 1998 and 2005 among women given new diagnoses of D.C.I.S. in one breast — a risk factor for cancer — who opted to have both breasts removed just in case. Among women with early-stage invasive disease (like mine), the rates rose about 150 percent. Most of those women did not have a genetic predisposition to cancer. Tuttle speculated 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. 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.

It wasn’t so long ago that women fought to keep their breasts after a cancer diagnosis, lobbying surgeons to forgo radical mastectomies for equally effective lumpectomies with radiation. Why had that flipped? I pondered the question as I browsed through the “Stories of Hope” on the American Cancer Society’s Web site. I came across an appealing woman in a pink T-shirt, smiling as she held out a white-frosted cupcake bedecked with a pink candle. In a first-person narrative, she said that she began screening in her mid-30s because she had fibrocystic breast disease. At 41, she was given a diagnosis of D.C.I.S., which was treated with lumpectomy and radiation. “I felt lucky to have caught it early,” she said, though she added that she was emotionally devastated by the experience. She continued screenings and went on to have multiple operations to remove benign cysts. By the time she learned she had breast cancer again, she was looking at a fifth operation on her breasts. So she opted to have both of them removed, a decision she said she believed to be both logical and proactive.

I found myself thinking of an alternative way to describe what happened. Fibrocystic breast disease does not predict cancer, though distinguishing between benign and malignant tumors can be difficult, increasing the potential for unnecessary biopsies. Starting screening in her 30s exposed this woman to years of excess medical radiation — one of the few known causes of breast cancer. Her D.C.I.S., a condition detected almost exclusively through mammography, quite likely never would become life-threatening, yet it transformed her into a cancer survivor, subjecting her to surgery and weeks of even more radiation. By the time of her second diagnosis, she was so distraught that she amputated both of her breasts to restore a sense of control.

Should this woman be hailed as a survivor or held up as a cautionary tale? Was she empowered by awareness or victimized by it? The fear of cancer is legitimate: how we manage that fear, I realized — 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. That can color everything from our perceptions of screening to our understanding of personal risk to our choices in treatment. “You could attribute the rise in mastectomies to a better understanding of genetics or better reconstruction techniques,” Tuttle said, “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.”

“Nearly 40,000 women and 400 men die every year of breast cancer,” Lynn Erdman, vice president of community health at Komen, told me. “Until that number dissipates, we don’t think there’s enough pink.”

I was sitting in a conference room at the headquarters of Susan G. Komen, near the Galleria mall in Dallas. Komen is not the country’s largest cancer charity — that would be the American Cancer Society. It is, however, the largest breast-cancer organization. And although Komen’s image was tarnished last year by its attempt to defund a Planned Parenthood screening program, its name remains virtually synonymous with breast-cancer advocacy. With its dozens of races “for the cure” and some 200 corporate partnerships, it may be the most successful charity ever at branding a disease; its relentless marketing has made the pink ribbon one of the most recognized logos of our time. The ribbon has come to symbolize both fear of the disease and the hope it can be defeated. It’s a badge of courage for the afflicted, an expression of solidarity by the concerned. It promises continual progress toward a cure through donations, races, volunteerism. It indicates community. And it offers corporations a seemingly fail-safe way to signal good will toward women, even if, in a practice critics call “pinkwashing,” the products they produce are linked to the disease or other threats to public health. Having football teams don rose-colored cleats, for instance, can counteract bad press over how the N.F.L. handles accusations against players of rape or domestic violence. Chevron’s donations to California Komen affiliates may help deflect what Cal OSHA called its “willful violations” of safety that led to a huge refinery fire last year in a Bay Area neighborhood.

More than anything else, though, the ribbon reminds women that every single one of us is vulnerable to breast cancer, and our best protection is annual screening. Despite the fact that Komen trademarked the phrase “for the cure,” only 16 percent of the $472 million raised in 2011, the most recent year for which financial reports are available, went toward research. At $75 million, that’s still enough to give credence to the claim that Komen has been involved in every major breast-cancer breakthrough for the past 29 years. Still, the sum is dwarfed by the $231 million the foundation spent on education and screening.

Though Komen now acknowledges the debate over screening on its Web site, the foundation has been repeatedly accused of overstating mammography’s benefits while dismissing its risks. Steve Woloshin, a colleague of Welch’s at Dartmouth and co-author of the Not So Stories column in The British Medical Journal, points to a recent Komen print ad that reads: “The five-year survival rate for breast cancer when caught early is 98 percent. When it’s not? It decreases to 23 percent.” Woloshin called that willfully deceptive. The numbers are accurate, but five-year survival rates are a misleading measure of success, skewed by screening itself. Mammography finds many cancers that never need treating and that are, by definition, survivable. Meanwhile, some women with lethal disease may seem to live longer because their cancer was found earlier, but in truth, it’s only their awareness of themselves as ill that has been extended. “Imagine a group of 100 women who received diagnoses of breast cancer because they felt a breast lump at age 67, all of whom die at age 70,” Woloshin said. “Five-year survival for this group is 0 percent. Now imagine the same women were screened, given their diagnosis three years earlier, at age 64, but treatment doesn’t work and they still die at age 70. Five-year survival is now 100 percent, even though no one lived a second longer.”

When I asked Chandini Portteus, vice president of research, evaluation and scientific programs at Komen, in January why the foundation continued to use that statistic, she didn’t so much explain as sidestep. “I don’t think Komen meant to mislead,” she said. “We know that mammography certainly isn’t perfect. We also know that it’s what we have and that it’s important in diagnosing breast cancer.” (The statistic was subsequently removed from its Web site.)

In “Pink Ribbon Blues,” Gayle Sulik, a sociologist and founder of the Breast Cancer Consortium, credits Komen (as well as the American Cancer Society and National Breast Cancer Awareness Month) with raising the profile of the disease, encouraging women to speak about their experience and transforming “victims” into “survivors.” Komen, she said, has also distributed more than $1 billion to research and support programs. At the same time, the function of pink-ribbon culture — and Komen in particular — has become less about eradication of breast cancer than self-perpetuation: maintaining the visibility of the disease and keeping the funds rolling in. “You have to look at the agenda for each program involved,” Sulik said. “If the goal is eradication of breast cancer, how close are we to that? Not very close at all. If the agenda is awareness, what is it making us aware of? That breast cancer exists? That it’s important? ‘Awareness’ has become narrowed until it just means ‘visibility.’ And that’s where the movement has failed. That’s where it’s lost its momentum to move further.”

Before the pink ribbon, awareness as an end in itself was not the default goal for health-related causes. Now you’d be hard-pressed to find a major illness without a logo, a wearable ornament and a roster of consumer-product tie-ins. Heart disease has its red dress, testicular cancer its yellow bracelet. During “Movember” — a portmanteau of “mustache” and “November” — men are urged to grow their facial hair to “spark conversation and raise awareness” of prostate cancer (another illness for which early detection has led to large-scale overtreatment) and testicular cancer. “These campaigns all have a similar superficiality in terms of the response they require from the public,” said Samantha King, associate professor of kinesiology and health at Queen’s University in Ontario and author of”Pink Ribbons, Inc.” “They’re divorced from any critique of health care policy or the politics of funding biomedical research. They reinforce a single-issue competitive model of fund-raising. And they whitewash illness: we’re made ‘aware’ of a disease yet totally removed from the challenging and often devastating realities of its sufferers.”

I recalled the dozens of news releases I received during last October’s National Breast Cancer Awareness Month, an occasion I observed in bed while recovering from my mastectomy. There was the one from Komen urging me to make a “curemitment” to ending breast cancer by sharing a “message about early detection or breast self-awareness that resonates with you”; the one about the town painting itself pink for “awareness”; the one from a Web site called Pornhub that would donate a penny to a breast-cancer charity for every 30 views of its “big-” or “small-breast” videos.

Then there are the groups going after the new hot “awareness” demographic: young women. “Barbells for Boobies” was sponsoring weight-lifting fund-raisers to pay for mammograms for women under 40. Keep A Breast (known for its sassy “I ♥ Boobies” bracelets) urges girls to perform monthly self-exams as soon as they begin menstruating. Though comparatively small, these charities raise millions of dollars a year — Keep A Breast alone raised $3.6 million in 2011. Such campaigns are often inspired by the same heartfelt impulse that motivated Nancy Brinker to start Komen: the belief that early detection could have saved a loved one, the desire to make meaning of a tragedy.

Yet there’s no reason for anyone — let alone young girls — to perform monthly self-exams. Many breast-cancer organizations stopped pushing it more than a decade ago, when a 12-year randomized study involving more than 266,000 Chinese women, published in The Journal of the National Cancer Institute, found no difference in the number of cancers discovered, the stage of disease or mortality rates between women who were given intensive instruction in monthly self-exams and women who were not, though the former group was subject to more biopsies. The upside was that women were pretty good at finding their own cancers either way.

Beyond misinformation and squandered millions, I wondered about the wisdom of educating girls to be aware of their breasts as precancerous organs. If decades of pink-ribboned early-detection campaigns have distorted the fears of middle-aged women, exaggerated their sense of personal risk, encouraged extreme responses to even low-level diagnoses, all without significantly changing outcomes, what will it mean to direct that message to a school-aged crowd?

Young women do get breast cancer — I was one of them. Even so, breast cancer among the young, especially the very young, is rare. The median age of diagnosis in this country is 61. The median age of death is 68. The chances of a 20-year-old woman getting breast cancer in the next 10 years is about .06 percent, roughly the same as for a man in his 70s. And no one is telling him to “check your boobies.”

“It’s tricky,” said Susan Love, a breast surgeon and president of the Dr. Susan Love Research Foundation. “Some young women get breast cancer, and you don’t want them to ignore it, but educating kids earlier — that bothers me. Here you are, especially in high school or junior high, just getting to know to your body. To do this search-and-destroy mission where your job is to find cancer that’s lurking even though the chance is minuscule to none. . . . It doesn’t serve anyone. And I don’t think it empowers girls. It scares them.”

Rather than offering blanket assurances that “mammograms save lives,” advocacy groups might try a more realistic campaign tag line. The researcher Gilbert Welch has suggested, “Mammography has both benefits and harms — that’s why it’s a personal decision.” That was also the message of the 2009 task force, which was derailed by politics: scientific evidence indicates that getting mammograms every other year if you are between the ages of 50 and 74 makes sense; if you fall outside that age group and still want to be screened, you should be fully informed of the downsides.

Gabrielle Plucknette/The New York Times; Adrian Keating/Associated Press

Women are now well aware of breast cancer. So what’s next? Eradicating the disease (or at least substantially reducing its incidence and devastation) may be less a matter of raising more money than allocating it more wisely. When I asked scientists and advocates how at least some of that awareness money could be spent differently, their answers were broad and varied. Many brought up the meager funding for work on prevention. In February, for instance, a Congressional panel made up of advocates, scientists and government officials called for increasing the share of resources spent studying environmental links to breast cancer. They defined the term liberally to include behaviors like alcohol consumption, exposure to chemicals, radiation and socioeconomic disparities.

Other researchers are excited about the prospect of fighting or preventing cancer by changing the “microenvironment” of the breast — the tissue surrounding a tumor that can stimulate or halt its growth. Susan Love likened it to the way living in a good or bad neighborhood might sway a potentially delinquent child. “It may well be,” she told me, “that by altering the ‘neighborhood,’ whether it’s the immune system or the local tissue, we can control or kill the cancer cells.” Taking hormone-replacement therapy during menopause, which was found to contribute to escalating rates of breast cancer, may have been the biological equivalent of letting meth dealers colonize a street corner. On the other hand, a vaccine, the current focus of some scientists and advocates, would be like putting more cops on the beat.

Nearly everyone agrees there is significant work to be done at both ends of the diagnostic spectrum: distinguishing which D.C.I.S. lesions will progress to invasive disease as well as figuring out the mechanisms of metastasis. According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

One hundred and eight American women die of breast cancer each day. Some can live for a decade or more with metastatic disease, but the median life span is 26 months. One afternoon I talked to Ann Silberman, author of the blog “Breast Cancer? But Doctor . . . I Hate Pink.” Silberman started writing it in 2009, at age 51, after finding a lump in her breast that turned out to be cancer — a Stage 2 tumor, which she was told gave her a survival rate of 70 percent. At the time she was a secretary at a school in Sacramento, happily married and the mother of two boys, ages 12 and 22. Over the next two years, she had surgery, did six rounds of chemo, took a trio of drugs including Herceptin and, finally, thought she was done.

Four months later, a backache and bloated belly sent her to the doctor; the cancer had spread to her liver. Why didn’t the treatment work? No one knows. “At this point, you know that you’re going to die, and you know it’s going to be in the next five years,” she told me. Her goal is to see her youngest son graduate from high school next June.

It isn’t easy to face someone with metastatic disease, especially if you’ve had cancer yourself. Silberman’s trajectory is my worst fear; the night after we spoke, I was haunted by dreams of cancer’s return. Perhaps for that reason, metastatic patients are notably absent from pink-ribbon campaigns, rarely on the speaker’s podium at fund-raisers or races. Last October, for the first time, Komen featured a woman with Stage 4 disease in its awareness-month ads, but the wording carefully emphasized the positive: “Although, today, she has tumors in her bones, her liver and her lungs, Bridget still has hope.” (Bridget died earlier this month.)

“All that awareness terminology isn’t about us,” Silberman said. “It’s about surviving, and we’re not going to survive. We’re going to get sick. We’re going to lose parts of our livers. We’re going to be on oxygen. We’re going to die. It’s not pretty, and it’s not hopeful. People want to believe in ‘the cure,’ and they want to believe that cure is early detection. But you know what? It’s just not true.”

Scientific progress is erratic, unpredictable. “We are all foundering around in the dark,” said Peter B. Bach, director of the Center for Health Policy and Outcomes at Memorial Sloan-Kettering Cancer Center. “The one thing I can tell you is some of that foundering has borne fruit.” There are the few therapies, he said — like tamoxifen and Herceptin — that target specific tumor characteristics, and newer tests that estimate the chance of recurrence in estrogen-positive cancers, allowing lower-risk women to skip chemotherapy. “That’s not curing cancer,” Bach said, “but it’s progress. And yes, it’s slow.”

The idea that there could be one solution to breast cancer — screening, early detection, some universal cure — is certainly appealing. All of us — those who fear the disease, those who live with it, our friends and families, the corporations who swathe themselves in pink — wish it were true. Wearing a bracelet, sporting a ribbon, running a race or buying a pink blender expresses our hopes, and that feels good, even virtuous. But making a difference is more complicated than that.

It has been four decades since the former first lady Betty Ford went public with her breast-cancer diagnosis, shattering the stigma of the disease. It has been three decades since the founding of Komen. Two decades since the introduction of the pink ribbon. Yet all that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.

Peggy Orenstein is a contributing writer for the magazine and the author, most recently, of  “Cinderella Ate My Daughter: Dispatches From the Front Lines of the New Girlie-Girl Culture.”

Editor: Ilena Silverman

This article has been revised to reflect the following correction:

Correction: April 28, 2013

An article on Page 36 this weekend about breast cancer awareness misidentifies the reduction in the chance that a woman in her 50s will die of breast cancer over the next 10 years if she undergoes screening. It is .07 percentage points, not .07 percent.