Breast Cancer Advocates Not Buying New Guidelines
The message that breast cancer screening saves lives has taken root, and powerful breast cancer advocates who promote this message have earned women's trust. Perhaps that's why there's such a backlash against new recommendations from the U.S. Preventive Services Task Force that advise against routine screening for women under age 50.
"I'm angry," says Kathy Sims, 47, of Cicero, N.Y., who was diagnosed with breast cancer five years ago after a routine mammogram. She had no history of breast cancer in her family. "They found a 5-centimeter tumor that I never felt, nor did my OBGYN feel." Sims says she doesn't think she'd be alive today if it were not for the mammogram.
Numbers Can Be Confusing
The task force recommendations were based on science studies that evaluated the effectiveness of mammograms. In one study, researchers determined that for every 1,900 women in their 30s and 40s who are invited to have a mammogram, one death from breast cancer was prevented.
When public health types look at these numbers, they conclude that it's not necessary to test every woman, every year — given the risks that accompany testing, including false positives, anxiety and scar tissue from biopsies.
But here's the rub: Individual women don't tend to think like public health folks. The 1 in 1,900 figure means little to a woman who has a sister, cousin or friend with the disease.
"In my circle, I probably know 10 women who were diagnosed in their 40s," says Rochelle Ferris of Irvine, Calif. Doctors detected her breast cancer through a mammogram in her mid-40s. She shares the anger over the new guidelines. "I would never have gone for a mammogram if the doctors hadn't insisted on it," Ferris says.
Who Do Women Trust?
After her diagnosis, Ferris began participating in the annual walks sponsored by Susan G. Komen for the Cure, the group responsible for the "pink campaign" that has managed to meld its health advice and advocacy into a powerful brand that helps raise money, fund research and stitch together a community of breast cancer survivors.
Ferris says being part of a Susan G. Komen event makes survivors feel like a princess. "They parade you through the grounds with 7,000 people. They give you roses. They give you crowns," says Ferris. "It makes you feel very special."
This is an example of how the advocacy groups have built strong connections with survivors, says Allen Adamson, a branding expert with the firm Landor Associates in New York. "They talk with them, engage with them," and as a result, they've earned women's trust, he says.
Ferris and Sims both say they'd take the advice of the experts at Susan G. Komen for the Cure before they'd listen to the recommendation of the task force — an independent group appointed by the government that neither knows much about. Both women also say they'd also consult with their own personal physicians.
Though Susan G. Komen for the Cure has been criticized for "pink-washing," or turning the breast cancer cause into a powerful industry, the organization has credibility among survivors.
"Some have been critical of our efforts to mobilize millions of people in the fight against breast cancer," says founder Nancy Brinker. But the fact that many people have been pulled into the community gives her group influence.
Advocacy Group Doesn't Back Task Force Recommendations
Brinker says her organization does not support the task force recommendation to limit routine screening for women in their 40s. But her organization agrees that there is uncertainty about how well mammograms work in this age group.
"I'm sorry they've gotten stuck on telling women not to be screened," says Brinker. The message that's getting lost, she says, is the dire need for improved mammograms or replacing them altogether.
"The real issue is we need to find better, faster, cheaper, more specific and more diagnostic screening tools," Brinker says.
Breast cancer advocacy groups are not in lock step over the new recommendations. The National Breast Cancer Coalition (NBCC) supports the findings of the task force.
"It's a tricky issue," says Laura Nikolaides of the NBCC. Her group wants women to understand that there's a clear case to be made that risks of mammograms seem to outweigh benefits for women under 50. "To expose yourself yearly to radiation and to false positive and biopsies that maybe you don't need," she says ticking off the possible harms. "We're trying to get out in front of this message."
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ROBERT SIGEL, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Robert Siegel.
MELISSA BLOCK, host:
And I'm Melissa Block.
The new mammography recommendations that came out this week have sparked scientific debate. They've also struck many women in a very emotional place. For breast cancer survivors and the groups that advocate for them, the message that early screening can save lives is a powerful one.
NPR's Allison Aubrey reports on how they're reacting to this week's news.
ALLISON AUBREY: If you take a group of 1,900 women in their 40s and invite each of them to have a mammogram, studies show this will prevent one woman from dying of breast cancer - one. When public health types look at these numbers, they conclude that's a whole lot of testing for detecting so few cancers. So, why screen every woman, every year? But here's the rub: individual women don't think like public health folks. That one in 1,900 number means nothing to a woman who has a sister, a cousin or a friend with the disease.
Ms. ROCHELLE FERRIS: You know, in my circle, I probably know ten women who were diagnosed in their 40s.
AUBREY: Rochelle Ferris had breast cancer several years ago. She and fellow survivor Kathy Sims both say they were shocked when they heard about the new task force recommendations advising against routine screenings for women their age.
Ms. FARRIS: I was angry. I'm still angry. I'm angry because if I had taken that path and not had this mammogram, I wouldn't be here today.
AUBREY: The breast cancer community that Sims and Ferris both feel a strong connection with has been stitched together largely by the work of the Think Pink folks. The group Susan G. Komen for the Cure has managed to meld its health advice and advocacy into a powerful brand, which helps raise money, fund research, all the while making breast cancer survivors feel like princesses, at least that's the way Rochelle Ferris says she feels when she participates in the annual Walk For The Cure.
Ms. FERRIS: Oh, my gosh, they parade you through the grounds with 7,000 people. They give you roses, they give you crowns. You know, they have, you know, very famous entertainers come and sing. It's - yeah, it makes you feel very special.
AUBREY: Hearing all this, it may not be surprising that Ferris and Sims both say they trust the advice of this group, the breast cancer community they know and love, much more than they trust the new guidelines of the U.S. Preventive Services Task Force, a group they know nothing about. Of course, Farris says, she turned to her doctor for advice too, but the point here is when it comes to changing public opinion on a topic as sensitive as breast cancer, it really matters who is delivering the message.
Allen Adamson is a branding expert with the New York-based firm Landor. He says as he's watched the pink movement soar, he sees an incredibly effective operation.
Mr. ALLEN ADAMSON (Managing Director, Landor): The advocacy groups have done a great job in building a relationship with their constituents - talking to them, engaging with them, and being there for quite a while now. And so as such, they're a real brand, these women, these constituents trust and believe in.
AUBREY: This analysis is nothing but flattering to Nancy Brinker. She's the founder of the Susan G. Komen for the Cure, the woman behind all the pink. She told me that she knows there's been a lot of criticism of her group over the years for turning a cause into a powerful industry. But as a result, she's got a lot of influence and she plans to use it to push for new breast cancer screening techniques that could improve mammograms or replace them altogether.
Ms. NANCY BRINKER (Founder, Susan. G. Komen For The Cure): And the real issue is we need to find better, faster, cheaper, more specific and more diagnostic screening tools.
AUBREY: So, here's the interesting point: her group does disagree with the new task force recommendation. For now, they say women in their 40s should continue getting mammograms. But Brinker's group also recognizes, just as the task force did, that there is uncertainty about how well mammography works particularly for women younger than 50. This is a big point of consensus and if more women understand that this screening tool isn't perfect, it may help put the role of mammograms into better perspective.
Allison Aubrey, NPR News, Washington.
BLOCK: A little later this hour, we'll talk with two doctors with different views on breast cancer screening. Transcript provided by NPR, Copyright National Public Radio.
