It's been more than 30 years since a leaky left breast prompted then 43-year-old Sarah Ralls to visit the doctor for a mammogram, only to find out cancerous calcium deposits in the right breast were the real problem. It's also why the 74-year-old Gilbert resident is appalled at revised recommendations by a federal task force against routine breast cancer screening of women 40 to 49 years old and screening every other year instead of annually for women 50 to 74 years of age.
"I just couldn't believe what they were saying," Ralls said. "Cut it out? Without that mammogram, I wouldn't be here today."
Dr. Thomas J. Taylor, radiation oncologist at Banner Desert Medical Center in Mesa, is equally concerned.
"My initial reaction was, 'How silly. I've seen patients with breast cancer under 20 years of age," Taylor said. "As a clinician who's out treating people who have these cancers, I'm troubled by recommendations to not do screenings."
Reactions like these from breast cancer survivors, prominent cancer groups and radiologists have triggered a nationwide debate over the revised guidelines issued last month by the U.S. Preventive Services Task Force.
This week, lawmakers on the U.S. Congress House Subcommittee on Health held the first hearing on the recommendations, where task force leaders admitted they could have done a better job of communicating the guidelines.
"The task force communication of the mammography screening recommendation for women 40-49 was poor," Dr. Diana Petitti, professor of biomedical informatics at Arizona State University and vice chairwoman of the United States Preventive Services Task Force, told lawmakers in a prepared statement.
Through their statement, she and Ned Calonge, chairman of the task force, who also attended the hearing, said they were committed to improving how they communicate information, especially in situations where "there are benefits and there are harms and the net benefit is small."
In a related development, the U.S. Senate Thursday passed an amendment to the health care reform bill that would require insurance companies to cover mammograms and other screening tests for women for free. A final vote on the comprehensive bill is pending.
The move could help placate concerns expressed by Taylor and others including U.S. Rep. Frank Pallone, D-N.J., chairman of the health subcommittee, on whether insurance companies would latch on to the recommendations and stop paying for mammograms for women under 50.
"There's a huge discussion in medicine going on about the efficacy of screening for things like breast, prostate or lung cancers, because these are time consuming and expensive activities," Taylor said. "So when an influential group like this comes out with a report saying the little return that routine screening brings isn't necessary, it carries the risk of patients being denied coverage."
At the subcommittee hearing, Rep. John Shadegg, R-Ariz., joined other Republican lawmakers in citing these recommendations as an illustrative example of how government could ration health care. But the task force has denied putting cost savings as a factor in its recommendations, or that they were colored by politics.
Cancer groups including the American Cancer Society and the Susan G. Komen Race for the Cure have not changed their recommendations for women 40 and over, sticking to yearly mammograms.
According to Otis W. Brawley, chief medical officer of the American Cancer Society, in 2009, about 15,000 breast cancer deaths were avoided partly because of timely mammograms. The 40 to 49 age group accounts for about one out of six breast cancer diagnoses.
"An unfortunate consequence may be that fewer women will be getting screened, and for those who are unlucky and develop breast cancer, those cancers won't be caught early," Brawley noted in a prepared statement at the hearing. In the last 19 years, Brawley also noted, breast cancer deaths have dropped by 20 percent among women younger than 50.
But the task force has not been alone in recommending screening every other year. This year, the World Health Organization recommended mammography every one to two years for women age 50 to 69.
Chandler resident Tina Brown, executive director of Sistas of AZ, an advocacy group, and past board member of Susan G. Komen Race for the Cure, said as a black woman, she's especially concerned that the recommendations would take away access even more.
"It's one of the leading causes of cancer in our group because of lack of awareness, education and access," Brown said.
According to the American Cancer Society, the death rate per 100,000 between 2001 and 2005 among white women stood at 24.4, and 33.5 for black women.
Things are not as black and white for 43-year-old Gilbert resident Teri Martin, who had no family history of breast cancer but was diagnosed with the disease last Christmas. Hers was not detected on the mammogram; instead on an ultrasound. Still, she says, she was surprised by the guidelines.
Martin said because it's pretty common among women under 50 for the cancer to not show up on a mammogram because of dense breast tissue, she could see somewhat where the task force was coming from, but still, they should be "doing more, not less."
From the task force's perspective, psychological harms, unnecessary imaging tests and biopsies in women without cancer, and inconvenience due to false-positive screening results were the basis for their recommendations.
Petitti clarified at the hearing that what they meant was screening should not start automatically at age 40. Instead, it should be an individualized decision, weighing harms and benefits. It should not be denied, she said. She also explained another recommendation to clinicians against teaching women breast self-examination. But Petitti said the idea was not to tell women not to look at their bodies either. The recommendation was simply based on evidence that shows women taught to do a self-exam didn't show overall benefit to reducing mortality.
Patricia DeBruhl, oncology counselor at Banner Desert, had a false positive result through an MRI, and a follow-up negative on a mammography. She ended up having a biopsy anyway, which resulted in complications including a hematoma and an infection.
Still, she said she'd rather be safe than sorry.
"I'd rather have a false positive because the damage from a false negative is life-changing," DeBruhl said.