Mary Ivey didn't have a family history of breast cancer or a genetic mutation putting her at high risk for the disease. At 37, she was too young for an annual mammogram. But one day in March, she did a routine self-exam, as her doctor had instructed her, just in case.
She found a marble-sized lump in her left breast. It was cancer.
Now, Ivey bristles at a federal panel's new guidelines that say women shouldn't bother formally examining their breasts because the self-exam - emphasized as a key health tool for so many years - shows no evidence of saving lives. After all, she said, an exam saved hers.
"What does it hurt?" said Ivey, now 38, of Sparrows Point. "Women need to be aware of their own health; they need to be proactive and take care of themselves and do exams. We only go to the doctor once a year. Well, a year can be life or death."
The big news from the guidelines, announced this week from the U.S. Preventive Services Task Force, was that women of average breast cancer risk should start mammograms at age 50, not 40, and have them every two years. That set off a fierce dispute, puzzling and angering patient advocates and cancer specialists alike.
But the panel's secondary recommendation, that doctors shouldn't teach women self-exams, is even more worrisome to some observers.
For years, self-exams were considered essential in the fight against breast cancer. Physicians urged reluctant patients to do monthly exams. Women left doctors visits and clinics with a handy reminder- a waterproof instruction card emblazoned with a pink ribbon to hang on their shower heads.
Advocates of self-exams say there's no good reason not to do them. They're quick, and they're free. And in a city such as Baltimore, with many low-income women who don't have access to primary care doctors, they can be vital.
So why have recommendations changed? If women shouldn't have mammograms until age 50, why not teach them how to spot something earlier? What's the harm in a self-exam?
Studies show self-exams aren't helpful. Teaching women to do them doesn't decrease breast cancer deaths, according to the task force, an independent panel of medical experts who make recommendations on preventive medicine. Instead, the exams increase the likelihood of women finding harmless lumps, putting them at risk for unnecessary biopsies, treatment and psychological stress.
In fact, other groups have raised doubts for years about the exams and backed away from recommending them. The American Cancer Society stopped recommending them in 2003 and left them as optional. A year and a half ago, the Maryland affiliate of the Susan G. Komen for the Cure Foundation replaced its advice on self-exams with "breast self-awareness," a general message of "pay attention to your body." That includes looking out for not just lumps but also changes in the size, shape and color of one's breasts.
The advice draws on evidence from two huge clinical trials. One in China in 2002 and another in Russia a year later studied nearly 400,000 women over 15 years and found the exams didn't reduce mortality. The groups that did self-exams had twice as many biopsies with benign results as the groups who didn't examine themselves. The Chinese study concluded that doctors should tell women who do the exams that the technique is unproved.
Dr. David Grossman, a member of the task force, acknowledges that the new advice "cuts against the grain of what many women are taught their whole lives." The panel's 2002 guidelines said there wasn't enough evidence to recommend for or against self-exams.
"There really is enough data now to say your ability to detect a tumor is not that good and there is a great risk of getting unnecessary biopsies and unneeded radiation," he said. "The harms really outweigh the benefits."
But women who say self-exams saved their lives disagree.
Ivey, an emergency room nurse, has been treated at St. Joseph Medical Center in Towson, receiving a mastectomy and chemotherapy, and she will soon undergo radiation.
At the time of her diagnosis, Ivey, the mother of a toddler, was young and healthy. Breast cancer could never happen to her, she thought.
"It doesn't matter what your history is," she said. "You have to take charge of your own body."
For women without health care coverage, breast self-exams can be a powerful tool, said Dr. Stacy Garrett-Ray, a family physician and medical director for the Baltimore City Cancer Program, which offers free mammograms and other cancer screenings to women who can't afford them.
"If you are uninsured, it's the only thing you have," she said of self-exams. "That may be the one thing that makes you go in and seek care."
The cancer program sees many women in late stages of the disease because they have put off health care.
"They felt something in their own breast some months ago and they finally heard here's a program that can help you out and you don't have to pay for it," she said.
In 2004, Barbara Raksin found a lump while doing a self-exam in the shower. She made the discovery between annual mammograms. The extra couple of months, she thinks, made her prognosis better.
Raksin, 66, a nurse at Greater Baltimore Medical Center's breast center in Towson, has been teaching women to examine their breasts for two decades and doesn't plan on changing course. "The breast self-exam is really an important component, especially if they are going to change guidelines for mammograms," she said.
While a self-exam can't always detect a problem, it can be empowering, she said.
"When you know your own body, you know your body better than your own doctor," she said. "They are examining lots of women; you are examining you."
That self-awareness is crucial, said Dr. May Hsieh Blanchard, an obstetrician/gynecologist at the University of Maryland Medical Center who teaches women to do self-exams. The American College of Obstetricians and Gynecologists says the exams "can be performed."
Some women are uncomfortable doing exams, uncertain what they're looking for. Women not familiar with the exam might get anxious if they feel something unusual, mistaking normal breast changes for a tumor, Blanchard said. She thinks the panel's recommendations intend to avoid that confusion and the risk of unnecessary treatment.
"But on the other hand, if women were familiar with their breasts, maybe they wouldn't jump to their doctor's office and say, 'Oh no, there's something there,' " she said. "There's been a lot of efforts to get a patient more involved in his or her health care. That's where I worry, that patients don't take ownership and responsibility in monitoring themselves."
The exams are important for younger women, said Renee Libby of Federal Hill, 25, who started doing them at 18, after her mother's twin sister was diagnosed with breast cancer in her 40s. Soon after, another aunt was diagnosed.
"I do it for my peace of mind," she said. "If you don't start early with the self breast exams, you may not start at all."
Dr. Lawrence Fogelson, a Towson obstetrician/gynecologist, said the guidelines are simply advice to physicians - they won't change how he practices. In addition, unnecessary biopsies don't happen often in his experience. He said some women may undergo unnecessary ultrasounds, but many think those tests are worth it.
"There isn't a lot of harm," he said of self-exams. "And I don't think it hurts."