UBC Reports | Vol. 49 | No. 4 | Apr.
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
By Hilary Thomson
Its like facing a loaded gun every day of your life.
Thats how Gail, a 38-year-old mother, describes the
anxiety of carrying a genetic marker for hereditary breast
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 Agencys 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 mothers family. She, her sister and their two
stepsisters all had breast cancer and frankly, I couldnt
see how I wouldnt 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,
As a woman trying to cope with her positive genetic test
result, Gail volunteered to use and evaluate the decision-making
Playing the odds is very, very risky, she says.
Im using the guide to make a clear, informed and
proactive decision now that I know what the odds are. Its
helping me make a decision on both a logical and emotional
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 guides 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.