Breast self-examination: What it means and why the thinking about it has changed

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Publication Date: 
Tue, 2012-07-17

The Canadian Task Force on Preventive Health Care released its guideline on screening for breast cancer for average-risk women (aged 40 to 79) in late 2011. The guideline updated screening recommendations made by the Task Force’s predecessor, the Canadian Task Force on the Periodic Health Examination, in 2001. The focus of the guideline is on mammography screening, but the guideline authors also recommended against clinical breast examination (by physicians) and breast self-examination by patients. The Task Force issues guidelines for primary care (family) doctors on a range of preventive care issues. In this article, journalist Ann Silversides wades through the recent controversies about the guideline, explaining the issues and summarizing the evidence and current thinking about breast self-examination. See also: Mammography screening: weighing the pros and cons for women's health.

By Ann Silversides

Many women were puzzled and even angry when the Canadian Task Force on Preventive Health Care recommended against breast self-examination as part of its 2011 guideline on breast cancer screening.

Why advise against a procedure that appears to facilitate self-care, isn’t costly, and doesn’t seem to have a downside? The advice seems to fly in the face of what we know: that many women themselves discover cancer because they notice a change in their breasts.   

Poor communication from the Task Force and in media reports explains much of the confusion about the recommendation.

The Task Force made the same recommendation against breast self-examination (BSE) back in 2001 and, in the intervening decade, several leading Canadian women’s health advocates—who used to champion BSE—ceased teaching or actively recommending it to their female patients.

Even Our Bodies Ourselves, the influential women’s health publication, revised its position on BSE—ceasing to endorse it—in the most recent 2011 edition.

What’s going on here?

For one thing, much of the reaction to the Task Force recommendation stems from different interpretations of the meaning of the term “breast self-examination.”

For many women, the term simply means checking their breasts for any changes. But to Canadian health professionals, BSE refers to a formal procedure—to be taught to women—that involves checking for breast changes in particular ways at the same time every month.

Dr. Ruth Wilson, director of health policy for the College of Family Physicians of Canada, emphasizes that it is “really important to distinguish between a woman who finds a lump in the shower and the practice of regular, monthly self-examination.”

But the Task Force didn’t spell out that distinction in its communications with women. The Task Force’s two-page FAQ for Patients features a “STOP” sign graphic (a hand with a slash through it) next to the recommendation “against routine BSE.”

Such loaded imagery leaves many with the impression that any examination of their breasts should be avoided. This was also the message that many women took away from media coverage of the issue.

Dr. Marcello Tonelli, spokesperson for the Task Force and co-author of the 2011 recommendations on breast cancer screening, stressed in an interview that the Task Force is “not telling women don’t examine your breasts, or don’t know your breasts.”

Instead, the recommendation against BSE is based on evidence showing that “devoting resources and time for doctors and programs in a structured way to teach women about BSE doesn’t seem to improve the health of women,” Tonelli said.

Notwithstanding Tonelli’s explanation, the FAQ for Patients (with its dramatic “STOP” graphic) goes on to state that studies found evidence of “increased harm” from BSE.

The FAQs do not include any suggestion that women should check with their health practitioners if they notice changes in their breasts, even though this has long been supported by advocates in the women’s health movement and by many physicians.

CBC radio host Kathleen Petty was in the shower when she looked down and spotted a change in her breast. “I had all these sort of big plans and then everything stopped. And it all stopped in the shower.”
“It’s not an unusual story,” she matter-of-factly told a CBC colleague in a televised interview in December 2011.  
Petty’s big plans involved a move from Ottawa to host the CBC’s morning radio program in Calgary.
But the abnormality that she spotted turned out to be cancer; instead of moving, she remained in Ottawa to undergo treatment. Read full story 

Most breast cancers and changes in breasts “are discovered by women themselves, frequently while bathing,” says Dr. Donna Stewart, Lillian Love Chair in Women's Health at the University Health Network and the University of Toronto.
Of course, the changes that women identify aren’t always symptoms of breast cancer. But a large proportion of women do themselves find changes that turn out to be cancer. Estimates are that between 40 and 75 per cent of breast cancers are discovered this way, and the clinical experience of many family physicians suggests the higher percentage is more accurate.  

Whatever the method of discovery, women are discovering breast cancer symptoms earlier (or visiting doctors sooner) than in the past when some combination of fear, shyness and shame likely prevented them from seeking medical attention, notes Canadian physician and epidemiologist Dr. Cornelia Baines.

Dr. Steven Narod, a leading Canadian breast cancer researcher, says that at Women’s College Hospital (WCH) in Toronto where he works, the average size of a cancerous lump felt by women (or their physicians) has gone down from 2.5 cm to about 2 cm over the last 20 years.

And that change—the identification of a “palpable” breast cancer when it is smaller—has had a large impact on mortality rates, he says. Put simply, women come to see doctors much sooner than they used to, allowing for treatment at an earlier stage. In contrast, the size of breast cancer lumps identified by a mammogram at Women’s College Hospital hasn’t changed since 1986, Narod says.

Reasons some former BSE boosters have changed their minds
Doctors and women’s health advocates who used to champion BSE cite a variety of reasons for changing their minds.  
Baines was a co-investigator of the Canadian National Breast Screening Study, which published its first results in 1990 and she has subsequently published a number of related studies. One study she co-authored in 1997 indicated that the practice of BSE may improve early detection of breast cancer and Baines publicly took exception to the 2001 Task Force recommendation against BSE.

Since then, she has changed her mind. Her reasoning?  “The only way you get BSE to be really useful is if you have really highly qualified trainers, repeatedly training highly motivated women. Is that realistic? No,” she said in an interview.

Instead she says that women should notice change—especially if their breasts become asymmetrical or if, when lying on their side, their breast feels thicker. “We notice change in other parts of our anatomy without doing regular exams. If ever asymmetry or change knocks on your door, go to the doctor,” Baines advises.  

The medical director of the Women’s Health Clinic in Winnipeg has also changed her thinking about BSE, but for different reasons.

“Most things that women find when they’re young and doing BSE are nothing, not important,” Dr. Carol Scurfield said in an interview. “But once someone has found something they are concerned about it’s really hard for them, and for you as a health care practitioner, to say, ‘let’s just ignore it.’”

That means “the practitioner feels obligated to do something, and then you get mammography and radiation [from the mammogram] and then you get a biopsy for nothing.” Scurfield also pointed out that after a woman has had a biopsy, it might be more difficult to read a subsequent mammogram.

She adds that in her experience, BSE did not prove that useful in detecting breast cancer. “Even when we were preaching BSE, the vast majority of women that actually showed up with issues did so because they found it in the shower accidently or happened to glance in the mirror and notice a change.”

Scurfield says it’s “important to teach women about their breasts and to tell them about the kinds of things they might notice that they should have checked out. We have to teach them that. We just don’t need to teach them this [BSE] is the law.”

Dr. Susan Love, author of Dr. Susan Love’s Breast Book, also stresses that women should become familiar with their breasts so they can notice any change and follow up with their doctor, but her reasons for not promoting BSE raise yet other issues.  

Love argues in her book that BSE “alienates women from their breasts instead of making them more comfortable with them.” With BSE “you’re hunting for something . . . [It] has been set up as a way to monitor your breasts for cancer,” she wrote.  

In the end, it was the evidence from scientific studies that convinced the authors of Our Bodies Ourselves to drop their longstanding endorsement of BSE. Those studies “have not found that women who perform BSEs are any less likely to die of breast cancer than women who don’t perform them” states the 2011 edition. It continues:  “However, exploring your breasts is a good way to get to know your body and become familiar with what is normal for you.”

The science behind the recommendation
The Task Force recommendations against teaching BSE—in 2001 and 2011—are based primarily on two large randomized controlled trials (RCTs) from Russia and Shanghai that were published in 1987 and 1997. RCTs are considered the ‘gold standard’ of trials for evidence-based medicine.  

The trials demonstrated no reduction in breast cancer mortality associated with BSE. They also concluded there was evidence of harm in the form of an increased rate of unnecessary (benign) breast biopsies because of the practice.

While many breast cancer researchers and specialists, including Drs. Baines and Love, have come to the same ultimate conclusion—not to teach women BSE—their reasons are not necessarily based on evidence from the randomized controlled trials. In fact, Baines and Love argue that the trials were flawed or the results misconstrued.

The most commonly cited clinical trial is the Shanghai trial, in which women factory workers were taught formal BSE. Baines argues that its results were contaminated because, over the two-year trial period, women were increasingly transferred from one factory to another—between the BSE and control groups. Love also takes issue with the Shanghai trial, pointing out in her book that, in the control group, some women found their own cancer. This supports the idea that women should be familiar with their breasts, she wrote.

For his part, Narod calls the Shanghai trial good, but idiosyncratic. “The problem is that everybody thinks the answer is written in stone, and there is very little new research into BSE… I could be wrong, but I think it is way too premature, based on too little evidence, to suggest that it is harmful and doesn’t work. My gut feeling is that it works.”

In fact, the 2001 Canadian Task Force recommended that further research be conducted on BSE. And in an interview in The Lancet, the lead author of the 2001 recommendation, Dr. Nancy Baxter, expressed concern that women might stop being aware of their breasts and “that is not the message we want to come out of this.”

While the randomized controlled trials on BSE attribute harm to unnecessary biopsies, Task Force spokesperson Tonelli said it’s not known whether there are any more unnecessary biopsies from BSE than from mammograms, because the Task Force did not compare these rates.  Instead, he stressed: “The key difference between mammography and BSE is that mammography appears to slightly reduce mortality while there is no evidence that BSE reduces mortality.”

The Cochrane Collaboration is a well-regarded independent group that examines the available evidence to support health care delivery decisions. In its review of the BSE trials, it also found no evidence of benefit from BSE in terms of an improvement in mortality.

Nonetheless the review concludes that women should know about the results of the randomized controlled trials “to enable them to make an informed decision.”

The Cochrane review continues: “Women should, however, be aware of any breast changes. It is possible that increased breast awareness may have contributed to the decrease in mortality from breast cancer that has been noted in some countries. Women should, therefore, be encouraged to seek medical advice if they detect any change in their breasts that may be breast cancer.”

In the examining room
Wilson says she used to be a “zealot” for BSE. She organized meetings in church basements and community centres to teach women how to perform the self-examination.

And she admits that she was surprised about the evidence of harm from the randomized controlled trials. As director of health policy for the College of Family Physicians of Canada, Wilson now supports the 2011 Task Force recommendations and has stopped teaching BSE.

“So, in practice what do I do? I say, ‘Do you examine your breasts regularly every month?’ If she says yes, I say, ‘Good for you. You might find a lump before I do.’ If she says no, I say ‘that’s just fine. There is no evidence that it would make a difference.’ I actually affirm a woman’s choice to do regular BSE or not. “

And if one of her patients finds a lump or a worrisome change in her breasts “we take it seriously,” she stresses.
Meanwhile Wilson says that, instead of taking time to teach BSE, she now devotes any extra time with patients to ask questions about health promoting activities such as smoking cessation and exercise.

Not just the women’s health movement
Surprisingly, the push for BSE predates the women’s health movement of the 1960s and 1970s. In 1950 the American Cancer Society and the National Cancer Institute “introduced a film, Breast Self-Examination, that was eventually viewed by more than 13 million women.” This is according to an essay published in the Canadian Medical Association Journal by Dr. Baron Lerner, author of The Breast Cancer Wars, a social and medical history (read the essay; read a review of this book).

Lerner writes that, in a report on the film, “Look magazine confidently reported that American women who performed BSE ‘can virtually conquer the fatal aspects of this disease by their own initiative.’”
He also notes that by 1951, the Canadian Cancer Society “was distributing the American Cancer Society leaflets about BSE and generating its own material.”

Ann Silversides is an independent journalist and author who specializes in health policy.

For more information about the recommendations, see the Canadian Task Force on Preventive Health Care website

And see the Task Force Patient FAQs