UBC Reports | Vol. 49 | No. 4 | Apr. 3, 2003

Choosing to Surgically Remove a Healthy Breast Can be a Life or Death Decision

UBC nurses are testing a new guide to make that decision easier

By Hilary Thomson

It’s like facing a loaded gun every day of your life.

That’s how Gail, a 38-year-old mother, describes the anxiety of carrying a genetic marker for hereditary breast cancer.

One option for Gail and other high-risk women is prophylactic mastectomy (PM), surgery that removes healthy breasts to virtually eliminate the chance of getting the disease.

To support women who are considering this option, UBC School of Nursing researchers Joan Bottorf and Mary McCullum have launched a study to evaluate a PM decision-making guide that they believe to be the only tool of its kind in Canada.

In a one-year study, they will ask 15 women to provide feedback on the draft guide that McCullum created as part of her graduate work at UBC. The 20-page booklet features links to research websites, surgical information, questions to consider, case studies, values scales and lists of pros and cons. Evaluators will be recruited from the BC Cancer Agency’s Hereditary Cancer Program (HCP) where McCullum works as a nurse educator.

“Every day, I see the anxiety and personal struggle of women trying to make this difficult decision. There are no resources just for them,” she says. “I would like to help women to be supported both intellectually and psychologically as they make this complex decision.”

About 10 per cent of breast cancer is hereditary in origin. In 2001, about 40 B.C. women chose to have PM to reduce their risk of breast cancer, according to the UBC Breast Reconstruction Program. PM has been an option since the 1960s, but with the advent of genetic testing, it is receiving more attention from women who have become aware of their risk level, says Bottorff. If a woman tests positive for the breast cancer gene, there is a 50-80 per cent chance she will get the disease.

Gail has been living with the fear of breast cancer for years.

“After my mom died of breast cancer 10 years ago, I could not stop thinking about the disease. It was so prevalent in my mother’s family. She, her sister and their two stepsisters all had breast cancer and frankly, I couldn’t see how I wouldn’t get it,” she says.

She decided to have genetic testing done through the HCP to alleviate some of the anxiety.

“I realized I needed to do something when a friend who had breast cancer described my constant obsessing as a vicious downward spiral that would rob me of all things valuable. It was one of the singular most defining moments of my life,” she says.

As a woman trying to cope with her positive genetic test result, Gail volunteered to use and evaluate the decision-making guide.

“Playing the odds is very, very risky,” she says. “I’m using the guide to make a clear, informed and proactive decision now that I know what the odds are. It’s helping me make a decision on both a logical and emotional level.”

Every year approximately 2,000 B.C. women develop breast cancer and more than 500 of them die of the disease, according to the BC Cancer Agency.

Next year, the research team of nine members from UBC, BC Cancer Agency, the University of Toronto and Vancouver General Hospital, part of Vancouver Coastal Health Authority, plan to conduct a multi-site Canada-wide study to further test the guide’s effectiveness.

Funding for this study was provided by Canadian Breast Cancer Foundation BC-Yukon Chapter.

For more information about hereditary breast cancer or this study, contact Mary MacCullum at 604.877.6000, local 2325.