Real-life decisions about mammograms

breaking news on breast cancer

When even the experts can't agree, how can you make a smart choice? Read how four women decided what's right for them.

When Danish researchers concluded last October that mammograms don't save lives, the news sparked heated debate that left millions of women wondering what to do. Press coverage died down after several national associations reaffirmed their support for screenings of women 40 and older. "Mammograms can find breast cancers when they're very small," says Robert Smith, Ph.D., director of cancer screening at the American Cancer Society. "And the smaller the tumor, the greater the chances for successful treatment."

But while the public debate has waned, the confusion hasn't. After all, national guidelines don't--and can't--reflect the personal risks and reactions of each woman. So we interviewed four women who made very different decisions about mammography--for very different reasons. Their stories show just how complicated the right choice can be.

"I'm afraid of doing nothing."
Carol Milano, 55, got her first mammogram at age 30 because she has a family history of breast cancer (a cousin died of the disease) and a set of fibrocystic breasts. "My gynecologist says it's really tough to tell what all my different lumps and bumps are," the New York-based author says. "Self-exams are useless for me."

For the last 25 years, Milano has gotten annual mammograms and clinical breast exams, plus sonograms for the past 15 years, to monitor her assorted lumps. And when a mammogram detected a suspicious mass about three years ago, her doctor ordered a biopsy. "It was negative," Milano says. Six months later, the doctor recommended another biopsy to make sure no tumor was lurking behind the scar tissue. "I screamed and yelled but really trusted him, so I finally agreed," Milano says. The second biopsy was negative, too.

The two biopsies only intensified Milano's fears about breast cancer--and left her with a scar about an inch and a half long. She was also frustrated by her doctor's order that she stay inactive while the incisions healed. "I've been running for 21 years, and I bike pretty regularly," Milano says.

Dense breasts run in Milano's family, so her sister and aunt get regular mammograms as well. And each has recently had suspicious results, prompting biopsies that turned up negative for cancer. Their experience is not uncommon: "Most women are not going to get breast cancer in their lifetimes," the ACS's Smith says. "But we need to test the many to find the few."

The threat of breast cancer feels very real to Milano, and the stress of having so many tests only compounds her fears. While she's done enough research to satisfy herself that mammograms are the right thing to do, she wishes there were a better alternative. "I hate mammograms-they're painful," she says. "And the debate about them makes me like them even less. But I don't know what else to do, and I'm afraid of doing nothing."

"My doctor knows how I feel, and she hasn't pushed it."
Liza Gross' 75-year-old mother recently died from breast cancer, but the 42-year-old science writer from Novato, California, is in no rush to get a mammogram herself. She worries that heavy promotion of a test scientists admit is flawed gives women a false sense of security. "What about all the women who have negative mammograms and think they're OK? Ten years ago, my mother had gotten her annual mammogram, and they said it was negative," she says. "Then, about three months later, she found a lump in her right breast while taking a shower. It was cancer that had metastasized to her lymph nodes." False negatives are so common, in fact, that lawsuits against radiologists who read mammograms are among the leading types of medical-malpractice litigation in the United States, says Leonard Berlin, M.D., chairman of radiology at Rush North Shore Medical Center and the author of a report on delayed diagnosis.

Even when a tumor is found on the film, it may be too late. "What the experts are calling early detection is really only slightly earlier detection," says breast-cancer expert Susan Love, M.D. Gross is concerned, too, about the risk associated with mammography itself. "Radiation is the only thing we definitely know causes breast cancer, and we're using it to detect breast cancer," she says. "Premenopausal women like me have breasts that are more sensitive to radiation." Love agrees that the radiation risk should not be ignored. "My concern is for women with a family history who start getting mammograms at 30. Even at this low dose, the radiation adds up," she says.

Gross clearly believes the benefits don't outweigh the risks. "The clincher was a Canadian study showing that women who got regular mammograms and clinical breast exams were no less likely to die than those who just got breast exams," she says. So she has opted to rely on monthly self-exams, plus yearly exams from a trained physician. "My doctor knows how I feel about mammograms, and she hasn't suggested that I get one," Gross says.

"I had no reason to think I would get cancer."
"I take this very personally, because a mammogram saved my life," 37-year-old Gina Vita says of the debate over testing. Although the Hingham, Massachusetts, office manager had no family history and no known risk factors, she went along with her doctor's request that she have a baseline mammogram at age 35. The test showed evidence of microcalcification--calcium clusters in the breast that can have a number of causes, including cancer. "Everyone was telling me that it was nothing, but my gut instinct said, 'No, prove it.'" Vita insisted on a needle biopsy, which showed that she had invasive cancer.

As terrifying as the diagnosis was, Vita felt lucky. "I was relieved because it was caught so early," she says. Breast cancer in young women is often aggressive, and she's convinced that without the mammogram, her cancer would have spread further before it was found, significantly lowering her chance of survival. Vita first opted for three lumpectomies but eventually underwent a mastectomy. Follow-up tests have shown that none of her lymph nodes were affected, so her prognosis is excellent.

Because 70 percent of women diagnosed with breast cancer have no known risk factors, Vita believes that mammograms are important for all women, not just those at high risk. "I had no reason to think I would ever get breast cancer," she says.

As a former X-ray technologist, Vita realizes that the procedure isn't foolproof. "I have an 8-year-old daughter, and I hope and pray that there will be some major breakthroughs before she's an adult," she says.

"I'm not saying 'never.'"
Leslie Laufman, M.D., an oncologist at Hematology Oncology Consultants in Columbus, Ohio, doesn't get annual mammograms even though at age 55, she's solidly in the age range when the test is supposed to be most valuable. "I'm not saying I never would," she says. "But I'm not getting them now, and I don't have any plans to."

Within the last six years, Laufman has been on two panels that reviewed evidence about mammography for the National Cancer Institute. After poring over hundreds of pages of research, she concluded that mammograms had been greatly oversold. "We are informing a lot of women of cancer diagnoses, but man), of them never needed to know they had cancer," she says. "Sometimes a mammogram will find a very fast-growing tumor, but for the most part, mammograms pick up very slow-growing cancers and noninvasive cancers," she says. For example, mammograms have greatly increased the number of women diagnosed with ductal carcinoma in situ (DCIS), a lesion in the milk ducts. With 30 years of follow-up, only about one in three DCIS lesions ever develops into invasive cancer. But because doctors can't tell which ones those are, Laufman says, nearly all women diagnosed are advised to have surgery, often followed by radiation and tamoxifen. Yet two-thirds of these women would have been perfectly fine without any treatment at all. "We say mammograms are helping us cure lots of cancers, but they're mostly the ones that didn't need to be cured," she says.

"I personally believe that for postmenopausal women who do not have dense breasts, having a mammogram every two to three years would be reasonable," Laufman says. "Having them more frequently than that hasn't been proven to be useful. It's difficult to prove they are useful at all for women in their 40s.

"Some of my colleagues in Columbus think I'm crazy to make public statements about this issue," she says. But the amount of testing and treatment concerns her because it leads to radiation exposure, unnecessary surgeries, and other negative outcomes, she says. To find life-threatening tumors, Laufman advocates clinical breast exams performed by trained professionals as an alternative to mammograms. "There's no downside to a physical exam," she says.

Another of Laufman's concerns is that, even in the best facilities, mammograms miss one out of five invasive cancers, especially in younger women. "A woman with an abnormality on a physical examination should not be reassured if her mammogram is normal. She needs to get a definite diagnosis. We doctors need to do a better job of reminding ourselves and informing women about the limitations of this test."

Laufman is also insulted by the medical community's attempt to distill the issue to a single message: Don't worry about the controversy, just get a mammogram. "As a woman, it frustrates me," she says. "The attitude is that women are too stupid to sort it out, so they need a simple, straightforward answer. I have a lot more faith in women than that."

what's your real risk?
"Women greatly overestimate their risk of getting breast cancer," says breast-cancer expert Susan Love, M.D. The oft-quoted statistic of a woman's 1-in-8 risk of developing breast cancer is a lifetime risk, not the risk of being diagnosed at any given moment. For instance, at age 40 a woman's risk of being diagnosed with invasive breast cancer over the next 10 years is just one in 67; by age 60, it increases to one in 29 over the next 10 years. By the time you reach age 90, there is a 1-in-8 chance that you would have developed breast cancer at some point in your lifetime.

how many lives are saved?
Most cancer organizations agree that mammograms are worthwhile for women 50 and older. But the benefit to younger women is still hotly debated. Here's wily:

Statistics show that 640 of every 10,000 women ages 40 to 49 who have a mammogram will receive an abnormal result and an average of two follow-up diagnostic tests, often including invasive procedures like biopsies. Of these women, 17 will turn out to have invasive breast cancer, and one death will be prevented.

Likewise, 680 of every 10,000 women ages 50 to 70 who get a mammogram will have an abnormal result, 180 will have a surgical biopsy, and 70 of them will turn out to have invasive breast cancer. These mammograms will prevent six breast-cancer deaths.

Carol Milano

Liza Gross

Gina Vita

Leslie Laufman, M.D.

ILLUSTRATION (BLACK & WHITE)

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By Christie Aschwanden

Contributing Editor Christie Aschwanden is a member of the National Association of Science Writers.

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