This year was different. After Dr. Weiss went home, she got a call from the doctor’s office.
“They said, ‘Can you come back, now?’ ” she recalled. “I said I’d prefer not to, and they said, ‘Are you sure?’ And I realized at that moment that it was more serious.”
Dr. Weiss, who soon learned that she had an invasive Stage 1 cancer in her left breast, is not just any physician. A radiation oncologist and a specialist in breast cancer, she founded a popular Web site, breastcancer.org, for women seeking comprehensive information about the disease, and she considers herself a woman with a mission. She sees patients three days a week, but she devotes four days a week to the site, which draws millions of visitors from 250 countries each year. She is writing her third book on breast cancer for a general audience.
A year ago, when a federal task force issued new guidelines relaxing the recommendations for mammography screening, Dr. Weiss was one of their fiercest critics. Mammograms aren’t perfect, she said at the time, but they save lives. Now she says one may have saved hers.
In the annals of medicine, Dr. Weiss’s story is just that: a story, an individual experience of the kind scientists dismiss as anecdotal, no reason to rethink policy. But it underscores the lingering, uncomfortable questions about when and how often to undergo breast cancer screening, and how to balance the benefits of early diagnosis with the harms of mammography — including false positive results that can lead to unnecessary biopsies and overtreatment.
The new guidelines call for postponing routine screening for women at average risk to age 50, from 40, and recommend scans every other year instead of every year.
If Dr. Weiss had followed them, she might have skipped this year’s scan, giving the tumor more time to grow undetected; and if she had not had a trail of scans from her 40s, doctors would not have been able to compare the images and notice the tumor’s subtle emergence. (In fact, her risk is above average, because of her dense breast tissue and a family history. But she noted, “Most women who get breast cancer don’t have a family history — that’s a huge myth.”)
Yet even at the American Cancer Society, which continues to advise women to start regular mammograms at 40, experts acknowledge the limitations of screening.
“Most people think mammography is much more beneficial than it actually is,” said Dr. Otis Brawley, the society’s chief medical officer. “Even if you take the most liberal, most pro-mammogram argument, we need something better.”
Dr. Brawley says that on balance, mammography saves lives. But he notes that it misses some cancers, and that radiation from the scans will actually cause some cancers to develop.
In addition, some women will be called back repeatedly for additional procedures, scans and biopsies that ultimately rule out cancer but can be painful and anxiety-provoking. Mammograms also find some cancers that grow very slowly but look the same as any other cancerous tumor, leading to aggressive but unnecessary treatment.
The United States Preventive Services Task Force found that while mammograms saved lives over all — reducing the breast cancer death rate by 15 percent — the benefits fell off rapidly for younger women, who also bore the greatest burden of the harms. While one cancer death is prevented for every 1,339 women in their 50s and every 377 women in their 60s who undergo screening, 1,904 women in their 40s would need to be screened for 10 years to prevent a single cancer death.
The panel also discouraged breast self-exams and even physicians’ breast exams.
But though the recommendations received saturation coverage in the news media last year, little attention was given a month later, when the panel modified its message. Concerned that it had been misunderstood, the panel took the extraordinary step of amending the standard language of its recommendations and removed the critical word “against” as applied to routine mammography of women in their 40s.
It let stand the language recommending that the decision to start screening every other year “should be an individual one” that “takes patient context into account, including the patient’s values regarding the specific benefits and harms.”
“No one had read that second sentence — no one got beyond the words ‘recommend against’ routine screening in women 40 to 49,” said Dr. Bruce Ned Calonge, chairman of the task force, in a recent interview. “We didn’t say, ‘Don’t screen.’ The intent of the task force was to promote shared decision-making between physicians and women in that age interval.”
There are already some indications that primary-care doctors are cutting back on mammography referrals. A recent report by the Centers for Disease Control and Prevention said a third of breast cancer cases were diagnosed at late stages, when treatment is more difficult.
The trend is disturbing to Dr. Weiss, who says she fears that radical changes in the way women live — earlier puberty, rising obesity and alcohol consumption, environmental pollution, long-term use of oral contraceptives, later childbearing and less breast-feeding — could lead to more breast cancer emerging at younger ages.
Her own surgery went well. She did not need radiation or chemotherapy, because the cancer had not spread. She began hormone therapy and was soon back to her crowded full-time schedule.
Dr. Weiss, who lives in Wynnewood, Pa., has made some lifestyle changes since her diagnosis — filtering her tap water, no longer cooking in plastic, and buying hormone-free meat and organic fruit. She lost 15 pounds and became a Zumba dance-exercise enthusiast. She eats lots of leafy green vegetables, has cut down on wine and always tries to get a good night’s sleep.
“I’m sharing my story in order to encourage women to step forward and get that mammogram,” she said. “I’m lucky to have caught this early, and I want to use my situation as an example of the value of early detection.
“The thing is: every woman is at risk. And every woman needs to do everything she can to protect herself.”
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