Women’s Breast Cancer Survey Shows Disbelief in Risk

As much as breast cancer has been in the news lately, with a tonnage of stories about the pluses and minuses of mammograms, about Angelina Jolie’s decision to undergo prophylactic (preventive) mastectomy, you might think women understand their risks of developing the disease pretty well.

They don’t. Or, perhaps more accurately, they don’t want to.

The University of Michigan Comprehensive Cancer Center conducted a study that was published recently in the journal Patient Education and Counseling. It concluded that, despite using a risk-assessment tool that factors in family history and personal habits, 1 in 5 women don’t believe their personal risk of breast cancer.

The study is part of a larger study that looks at how to improve patients’ understanding of risk information.

Many of the respondents said a “gut instinct” told them that the number was off; it’s interesting that many women believed that their risk should have been higher.

The problem with this lack of trust, with people not believing a logical, scientific indicator is that they could miss out on appropriate prevention strategies, if they willfully underestimate their risk, or live with undue fear of cancer if they overestimate.

Most of the women who didn’t believe their risk numbers said they didn’t feel the assessment took into account their family history of cancer or their personal health habits, despite the fact that it included relevant questions about family and individual history.

“If people don’t believe their risk numbers, it does not allow them to make informed medical decisions,” said Angela Fagerlin, Ph.D., associate professor of internal medicine at the University of Michigan Medical School, in a university media release. Fagerlin was senior study author, and is a research scientist at the VA Ann Arbor Center for Clinical Management Research.

“Women who believe their risk is not high might skip chemoprevention strategies that could significantly reduce their risk. And women who think their risk should be higher could potentially undergo treatments that might not be medically appropriate, which can have long-term ramifications,” she said.

In the U.S. this year, about 234,580 people will be diagnosed with breast cancer, according to the American Cancer Society, and 40,030 will die from it. By comparison, an estimated 226,160 cases of lung cancer were diagnosed in 2012 and about 160,340 people died from it.

The study subjects were nearly 700 women at above-average risk of developing breast cancer. They completed a web-based decision aid that included questions about age, ethnicity, personal history of breast cancer and number of first-degree relatives who had had breast cancer. After the data were crunched, they were told their five-year risk of developing breast cancer and given information about prevention strategies.

After receiving that information, the women were asked to recall their risk of breast cancer within the next five years. If they answered incorrectly, they were asked why, and their responses included that they forgot, made a rounding error or disagreed with the number. One in 5 of the women who misreported their risk said they disagreed with the numbers.

That group’s most common reason for disagreeing with their assessed risk was that their family history made them either more or less likely to develop breast cancer. Many believed that because an aunt or father had cancer, their risk was increased. In fact, only first-degree female relatives – mother, sister, daughter – affect someone’s breast cancer risk. Others felt a lack of family history meant their cancer risk should be very low.

One in 3 of the women who rejected the analysis said their gut instinct was that the risk numbers just seemed too high or too low.

“We’ve put so much fear in people about breast cancer so they feel at high risk,” lead study author Laura D. Scherer, Ph.D., said in the news release.

“We have a trend toward personalized medicine and individualized medicine, but if people don’t believe their personalized risk numbers, they’re not going to get the best medical care for them,” she said.

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