Survivors testify to value of self-exams

Standing in the wig room at That Special Woman, which caters to cancer patients, are, from left, Carol Burnett, owner Kris Beard, Deborah Roberts, and Nancy Carpenter. All four women discovered lumps through breast self-examinations.

Breast cancer survivor Deborah Roberts fumed as she read about a study that suggests breast self-examination does not save lives.

“I don't believe this. This is crazy,'” said the Toledo woman who discovered the lump that led to her successful cancer treatment eight years ago.

The study, which followed more than a quarter-million women in China for 10 years, showed that women who received detailed, aggressive, and continuing education about breast self-examination, were just as likely to die from breast cancer as those who had no education about self-exams.

For women in the United States, the study is one more puzzling assault on what were once the verities of breast-cancer prevention: Examine your breasts each month and get an annual mammogram. Catch it early and you have saved your own life.

Research is shaking those truths, first with the continuing debate about the effectiveness of mammograms in reducing breast-cancer mortality, especially in women under 50, and now with what many say is a solid blow to the do-it-yourself strategy.

Yet even among some experts, there is a reluctance to abandon tradition.

David B. Thomas, a cancer epidemiologist at the Fred Hutchinson Cancer Research Center in Seattle, is the lead author on the breast self-examination study published yesterDay in the Journal of the National Cancer Institute.

He is not advocating an end to self-exams.

“Under ideal circumstances, highly motivated women who are willing to practice it as it's supposed to be done, every month, they might be able to reduce their risks,'' Dr. Thomas said.

Toledo physicians are similarly cautious.

“The way I put it is, `I want you to do a breast self-exam. But do not consider that a substitute for my exam or a mammogram.' They all go together. It's a spectrum of care,” said Dr. Lance Talmage, director of the Center for Women's Health at Toledo Hospital.

Dr. Gerald Marsa, director of radiation oncology at St. Vincent Mercy Medical Center in Toledo, said doctors long have known there is little proof that self-exams save lives. But it cannot hurt and it might help.

“Screening by self-examination is a good back-up for mammograms,” he said.

Not only is scientific evidence supporting self-examination scant, the whole notion of early detection may be about to topple.

“Years and years of confident claims that early detection saves a lot of lives from breast cancer is not really true,'' said Dr. Barron Lerner, an associate professor of medicine at Columbia University and the author of The Breast Cancer Wars.

“I think there's almost zero data that breast self-examination works,'' he said. “The results of early detection of breast cancer are much more modest, and come with a price.

“I think women deserve to know that.''

The price is false positives, and unnecessary biopsies. Unnecessary biopsies were also a consequence of self-exam training in the China study.

But there's science, and then there's personal experience, and for Ms. Roberts and other cancer survivors, personal experience trumps all.

“You might not find [a lump] every month, but it's still important,” she said. Ms. Roberts works at That Special Woman, which markets clothes and prostheses to cancer patients and survivors. Her co-workers also discovered their breast cancers through self-examination.

“We thought that article was crazy,” Ms. Roberts said.

The breast self-exam study took place in Shanghai's textile factories. The region was an ideal place to isolate any benefits of breast self-examination because no mammography is available there.

Half of the 266,000 women in the study were given classes in self-examination. They also participated in discussion groups about self-exams, and were trained to detect lumps on silicone breasts. They were supervised performing self-examinations every six months for five or six years. In addition, educational posters were displayed in their factories. Instruction was repeated one year and three years after the initial educational sessions.

The other half of the group were given no instruction, and worked in factories where no posters or other information was made available.

The study showed no decrease in mortality in the self-exam group. Nor did the self-exam group find tumors any earlier than the untrained group. The women's cancer treatment was similar to treatment women receive in the United States, researchers said.

“One could interpret it in several ways,'' said Dr. Barnett Kramer, senior scientific advisor at the National Cancer Institute. “One is, breast self-examination is not a substitute for mammography or for careful clinical breast examination, and a corollary of that is, we need not spend a lot of resources trying to convince people that they must do a breast self-examination.

“We should place our emphasis on other forms of screening.''

Indeed, the National Cancer Institute advocates women over 40 receive annual mammograms, Dr. Kramer said.

But a body of other research puts the value of mammograms under question, particularly for women under 50.

“There is uncertainty out there. The literature does reflect that,'' Dr. Kramer said.

Still, breast-cancer mortality is clearly on the decline in the United States since the late 1980s. If breast self-examination is not behind that statistic, and mammograms are of doubtful help, what's causing the improvement?

“Most people would agree it's probably treatment; so tamoxifen and chemotherapy,'' said Dr. Lerner. “A percentage of the decline is due to mammography, but it's mostly due to treatments.''