The false narratives of pink ribbon month, redux

Christie Aschwanden is an award-winning freelance writer and editor. She is a contributing editor for Runner’s World and was a contributing editor for Health from 2000 to 2010. She has been a contributing writer for Skiing and her articles and essays have appeared in more than 50 other publications including The New York TimesThe Los Angeles Times, The Washington PostO—the Oprah MagazineMen’s JournalSlate, NPR, Mother Jones, National Wildlife, Backpacker, Reader’s Digest, Self, WebMD, Science, Cell and New Scientist. Christie has also written and edited books and reports for the World Health Organization, the National Institutes of Health and other national and international organizations. She has been interviewed about her work by the BBC and other media. Christie’s coffee table book about chicken breeds, Beautiful Chickens, was published in 2012. She lives in western Colorado.

Christie Aschwanden’s “The false narratives of pink ribbon month, redux” was originally published on the science blog, The Last Word On Nothing. It is a followup to her earlier essay, The real scandal: science denialism at Susan G. Komen for the Cure ®.

Back in February, a scandal broke out at Susan G. Komen for the Cure®, the breast cancer advocacy group with the trademarked pink ribbon. That scandal centered around the group’s decision to stop funding Planned Parenthood’s cancer screening efforts.  But the flap over Planned Parenthood obscured an even more scandalous problem at Komen — the group’s outright denialism of tumor biology.

I wrote about the problem here on February 8. On August 2, Dartmouth researchers Steven Woloshin and Lisa M Schwartz published an editorial echoing the points in my post. Komen’s response? Silence.

Schwartz tells me, “We never heard from Komen.” If leaders at the group read the Dartmouth paper, they didn’t seem to draw many lessons. According to Schwartz, the group’s new website, I Am the Cure, contains no survival statistics.

“They now seem to be highlighting breast cancer in young people (1 of their 5 quiz questions is about how women in 20′s can get breast cancer),” Schwartz says, “And one of their big ads is about a college senior with metastatic cancer.” There’s nothing wrong with giving a voice to young women facing breast cancer, but it’s deceptive to imply that these stories are typical. The median age at diagnosis is 61.

The deceptive ad that I criticized in February continues to be featured on the Komen website. With National Breast Cancer Awareness Month once again upon us, it seems like a good time to revisit the issue. What follows is my original post from February.

-Christie


Is breast cancer threatening your life? This Susan G. Komen for the Cure® ad leaves no doubt about who’s to blame —you are. Over the last week or so, critics have found many reasons to fault Susan G. Komen for the Cure®. The scrutiny began with the revelation that the group was halting its grants to Planned Parenthood.  The decision seemed like a punitive act that would harm low-income women (the money had funded health services like clinical breast exams), and Komen’s public entry into the culture wars came as a shock to supporters who’d viewed the group as nonpartisan.*

Chatter on the intertubes quickly blamed the move on Komen’s new Vice-President of Public Policy, Karen Handel, a failed GOP candidate who ran for governor in Georgia on a platform that called for defunding Planned Parenthood.** Komen’s founder, Ambassador Nancy Brinker, awkwardly attempted to explain the decision, and yesterday, Handel resigned her position. (Whether she’ll receive a golden parachute remains unclear, but former CEO Hala Moddelmog received $277,864 in 2010, despite her resignation at the end of 2009.) The Planned Parenthood debacle brought renewed attention to other controversies that have hounded Komen in recent years—like its “lawsuits for the cure” program that spent nearly $1 million suing groups like “cupcakes for the cure” and “kites for the cure” over their daring attempts to use the now-trademarked phrase “for the cure.” Critics also pointed to Komen’s relentless marketing of pink ribbon-themed products, including a Komen-branded perfume alleged to contain carcinogens, and pink buckets of fried chicken, a campaign that led one rival breast cancer advocacy group to ask, “what the cluck?”

But these problems are minuscule compared to Komen’s biggest failing—its near outright denial of tumor biology. The pink arrow ads they ran in magazines a few months back provide a prime example. “What’s key to surviving breast cancer? YOU. Get screened now,” the ad says. The unmistakeable takeaway? It’s your fault if you die of cancer. The blurb below the big arrow explains why. “Early detection saves lives. The 5-year survival rate for breast cancer when caught early is 98%. When it’s not? 23%.

If only it were that simple. As I’ve written previously here, the notion that breast cancer is a uniformly progressive disease that starts small and only grows and spreads if you don’t stop it in time is flat out wrong. I call it breast cancer’s false narrative, and it’s a fairy tale that Komen has relentlessly perpetuated.

It was a mistake that most everyone made in the early days. When mammography was new and breast cancer had not yet become a discussion for the dinner table, it really did seem like all it would take to stop breast cancer was awareness and vigilant screening. The thing about the false narrative is that it makes intuitive sense–a tumor starts as one rogue cell that grows out of control, eventually becoming a palpable tumor that gets bigger and bigger until it escapes its local environment and becomes metastatic, the deadly trait that’s necessary to kill you. And this story has a grain of truth to it—it’s just that it’s far more complicated than that.

Years of research have led scientists to discover that breast tumors are not all alike. Some are fast moving and aggressive, others are never fated to metastasize. The problem is that right now we don’t have a surefire way to predict in advance whether a cancer will spread or how aggressive it might become. (Scientists are working on the problem though.)

Some breast cancers will never become invasive and don’t need treatment. These are the ones most apt to be found on a screening mammogram, and they’re the ones that make people such devoted advocates of mammography. H. Gilbert Welch of the Dartmouth Institute for Health Policy and Clinical Practice, calls this the overdiagnosis paradox. Overdiagnosis is what happens when a mammogram finds an indolent cancer. A healthy person whose life was never threatened by breast cancer is suddenly turned into a cancer survivor. She thinks the mammogram saved her life, and so she becomes an advocate of the test.

Some cancers behave just the opposite of these slow-growing, indolent ones. Researchers now know that some cancers are extremely aggressive from the start. There’s simply no such thing as “early” detection for these cancers. By the time they’re detectable by any of our existing methods, they’ve already metastasized. These are the really awful, most deadly cancers, and screening mammograms*** will not stop them.

Then there are cancers that fall somewhere in between the two extremes. These are the ones most likely to be helped by screening mammography, and they’re the lives that mammography saves. How many? For women age 50 to 70, routine screening mammography decreases mortality by 15 to 20% (numbers are lower for younger women). One thousand women in their 50′s have to be screened for 10 years for a single life to be saved.

So let’s recap. Getting “screened now,” as the Komen ad instructs can lead to three possible outcomes. One, it finds a cancer than never needed finding. You go from being a healthy person to a cancer survivor, and if you got the mammogram because of Komen’s prodding, you probably become a Komen supporter. Perhaps a staunch one, because hey—they saved your life and now you have a happy story to share with other supporters.

Another possibility is that the mammogram finds a cancer that’s the really bad kind, but you die anyway. You probably don’t die later than you would have without the mammogram, but it might look that way because of a problem called “lead time bias.”

The third possibility is that you find a cancer that’s amenable to treatment and instead of dying like you would without treatment, your life is saved. Here again, you’re grateful to Komen, and in this case, your life truly was saved.

Right now, breast cancer screening sucks. It’s not very effective, and if you measure it solely based on the number of lives saved versus healthy people unnecessarily subjected to cancer treatments, it seems to cause more harm than good. For every life saved, about 10 more lives are unnecessarily turned upside down by a cancer diagnosis that will only harm them. In a study published online in November, Danish researchers concluded that, “Avoiding getting screening mammograms reduces the risk of becoming a breast cancer patient by one-third.”

But it’s not quite that simple. Some people really are helped by mammography screening, and if you’re the one helped, it’s hard to discount that one life. Right now mammography is the best tool we have. Welch, who has spent more time than probably anyone else in America studying this issue, has deemed the decision about whether or not to get breast cancer screening a “close call.”

Reasonable women can decide that for them, the potential benefits outweigh the risks. Other reasonable women will decide that for them, the risks outweigh the potential benefits.

Komen isn’t wrong to encourage women to consider mammography. But they’re dead wrong to imply that “the key to surviving breast cancer” is “you” and the difference between a 98% survival rate and a 23% one is vigilance on the part of the victim. This message flies in the face of basic cancer biology.

Between 2004 to 2009, Komen allocated 47% of it $1.54 billion toward education and screening.  Much of its education messaging promotes the same false narrative as its ads, which means they are not only not furthering the search for a cure, they are harming the cause. By implying that the solution to breast cancer is screening, Komen distracts attention from the real problem, which is that way too many women (and men) are still dying of breast cancer, and screening is not saving them. We still can’t prevent breast cancer, because we don’t know what causes it.

To explain why Komen’s fixation on an unscientific story matters, I want to introduce you to Rachel Cheetham Moro. Moro was a cancer blogger, but she won’t be weighing in on this latest Komen controversy, because she died Monday of metastatic breast cancer. Before she left us, she had plenty to say about the false narrative Komen was peddling. Last October she wroteHow dare Komen so FALSELY suggest that a screening mammogram is all it takes to avoid metastatic breast cancer? How dare Komen so CRUELLY suggest that “not getting screened for breast cancer in time” would be THE reason and the FAULT of the person with metastatic disease who misses out on all the experiences and joyous events of a long and healthy life that so many others take for granted? How dare you, Komen? How dare you?

In August of 2009, I wrote about the overdiagnosis problem for the Los Angeles Times. I happened to be attending a conference with several executives from Komen. When I asked them about overdiagnosis, they were dumbfounded. They had no idea what I was talking about. Nor did they seem very interested. (Interestingly enough, two of these women were breast cancer survivors, and told me they’d found their cancers on their own–in the shower or the like–without a self-exam or mammogram.) VP of health sciences Elizabeth Thompson told me that they just needed to keep plugging their message— “early detection saves lives.”

By contrast, Komen’s chief scientific advisor, Eric Winer of the Dana-Farber Cancer Institute, was fully aware of the problem. He told me that “As painful as it is to admit, we have oversold mammography to the American public.” That was more than two years ago. Why is Komen clinging to their denialist message? They owe Moro an answer.

Footnotes:

*In fact, Komen has a long and cozy association with the Republican Party. George W. Bush rewarded founder Nancy Brinker’s generous donations to the GOP—more than $175,000 since 1990—by awarding her an ambassadorship to Hungary in 2001 and later, the position of chief protocol officer. The Komen board has a couple women of color and several democrats, but is predominately rich, white GOP donors.

**Apparently, some abortion foes think that eliminating Planned Parenthood would also abolish abortion. Will Saletan at Slate debunks this notion by explaining that the way to drive Planned Parenthood out of the abortion business is to give them more money.

***It’s important to distinguish a screening mammogram from a diagnostic one. Screening mammograms are done on women without any symptoms. A diagnostic mammogram is done to check out a suspicious lump. Disagreements over mammograms center over whether and how often women should have screening mammograms. Diagnostic mammograms are not in dispute. If you find a lump, you need a diagnostic mammogram.

For more on this issue, read Barbara Ehrenreich’s 2001 famous Harper’s piece, Welcome to Cancerland.

Photos: Race for the Cure banner by Ladybugbkt (via Flickr) Fnck cancer by Michaelhyman300 (via Flickr)

 

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3 comments to The false narratives of pink ribbon month, redux

  • mama zen

    I have to say that I respectly disagree with you. I was diagnosed with DCIS at the age of 48, following a suspicious finding on mammogram. DCIS may be one of those cancers that you say will never harm me or even need treatment. As a matter of fact, the radiologist sent me home with a recommendation to wait and have a follow up in 6months. knowing my family history of cancer, I was not comfortable with this suggestion. I subsequently had a biopsy which should the most aggressive form of cells in my tumor. I also learned I am BRCA2. The moral of my story is that a mammogram led to my early detection, my learning of my genetic predisposition as well as that of my 2 sisters. Did this mammogram save my life? Potentially!

    I am also thoroughly disgusted with the same individuals who say PSA testing is not necessary. My father died 3 years ago from prostate ca. He was the beneficiary of a cavalier attitude toward his disease. He was the BRCA 2 gene mutation carrier. So if you are mot a breast ca survivor or a carrier of a gene mutation I think you need to get off your soap box u til you have some actual experience in the situation before you judge anyone

  • allie

    awesome article, thanks for sharing this valuable information. i’m going to give a presentation on this general topic in school, my university is having a campaign right now “state loves boobies”
    yaaaaa….

  • allie

    re: mama zen,
    your treatment saved your life.
    the mammogram helped you to find out that you needed treatment.
    but it wasn’t the mammogram. just as a matter of logic.

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