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Breast Cancer Advocates Not Buying New Guidelines

Lindsay Ullman, 31 (left), celebrates with her mother, Dyana Peters, as they cross the finish line after their first 5K walk during the 2008 Susan G. Komen Northeast Ohio Race for the Cure. Ullman is battling breast cancer, and Peters is a one-year survivor.
Lisa DeJong
Lindsay Ullman, 31 (left), celebrates with her mother, Dyana Peters, as they cross the finish line after their first 5K walk during the 2008 Susan G. Komen Northeast Ohio Race for the Cure. Ullman is battling breast cancer, and Peters is a one-year survivor.

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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Allison Aubrey is a correspondent for NPR News, where her stories can be heard on Morning Edition and All Things Considered. She's also a contributor to the PBS NewsHour and is one of the hosts of NPR's Life Kit.