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Ellen Jordan was a week shy of her 45th birthday when a diagnostic mammogram and subsequent lumpectomy revealed she had Stage Two breast cancer.
Her treatment was aggressive: Surgery to remove 13 lymph nodes, to which the cancer had spread; radiation five times a week for six weeks and chemotherapy every two weeks for an eight-week session.
Three years later, she's cancer free. And alive.
Hers is a story Jordan thinks women should hear in light of the U.S. Preventative Services Task Force's announcement this week that only women between 50 and 74 should get mammograms -- and every two years at that.
"It's asinine," the 48-year-old Taylorsville woman said, "because if I had waited until I was 50, I'd be dead."
National organizations, including the American Cancer Society, are standing firm on their screening guidelines: Women 40 and older should get annual mammograms and clinical breast exams, Otis W. Brawley, the ACS' chief medical officer, said in a statement Monday.
But the mixed messages are creating confusion.
Brett Parkinson, medical director of the Breast Care Center at Intermountain Medical Center, said Tuesday several women had called to cancel their mammograms. One was persuaded to keep her appointment, while the others refused to come in. At the Huntsman Cancer Institute, meanwhile, patient outreach coordinators were busy fielding calls from patients.
Doctors want to stress that, for now at least, women should do nothing differently.
While the task force's results and recommendations are "provocative," more research is needed before the guidelines change, said Randall Burt, a professor of medicine at the University of Utah.
"I think these are nice studies. They give us good information," said Burt, who is also the senior director of prevention and outreach at Huntsman Cancer Institute. "But I want to wait to see what other organizations say after they have met and carefully considered this work."
The task force, an independent panel made up of primary care physicians, updated its guidelines after it commissioned a team of researchers to perform computer-simulation models. They looked at how women would fair if they received mammograms at different ages, and with varying frequency.
Women who receive routine mammograms die less frequently than women who don't, the models revealed. But the potential harms of screening -- including anxiety, procedures, and costs due to false-positive results -- didn't outweigh the benefits for women in the 40- to 49-year-old age group by much.
"They said it wasn't quite worth it -- it didn't save enough lives," said Parkinson, who points out that about one-fifth of breast cancers occur in women in their 40s. "What they're doing is they're quantifying things, and it's almost as if they're deciding how they're going to ration care."
Since 1990, when Parkinson began his medical career, breast cancer death rates have stooped 30 percent. Several studies suggest it's the result of routine mammograms. Changing the guidelines now, he said, is a major step backward that will result in later diagnoses of breast cancer, and more costly, invasive treatments.
"There will be deaths as a result of this," he said.
Doctors also worry the task force's new guidelines could be forced by third party payers -- insurance companies -- although treating the disease is far more costly than screening for it. Medicare in particular relies heavily on the government panel's recommendations.
"They [Medicare] are not going to accept these things from" the task force alone, Burt said. "But this group has thrown down the gauntlet."
For now, said Scott Leckman, a breast cancer surgeon at St. Mark's Hospital, the bottom line is this: Women need to keep getting routine mammograms. If they have questions, it's best to direct them to their doctor.
"Most women don't want to be that woman who is skipped over and missed," he said. "So I think these are good questions to be asking and, over time, these things will shake out and we may come to some consensus. But it's not going to be today."
What the U.S. Preventative Services Task Force says
Only women between 50 and 74 should get mammograms -- and every two years instead of annually.
Women and their doctors should base the decision to start mammography before age 50 on the risk for breast cancer and preferences about the benefits and harms.
What the American Cancer Society says
Women 40 and older should get a mammogram and clinical breast exam every year.
The bottom line
If you have questions or you're not sure which recommendations to follow, talk to your doctor, experts say.