Some women at high risk of developing breast and ovarian cancers may face one of the most difficult decisions of their lives — whether or not to undergo removal of their breasts and ovaries to stave off these diseases. Doing so can reduce their risk of cancer significantly, but it also can have far-reaching consequences.
Deborah MacDonald aims to help women who undergo surgery that helps prevent breast and ovarian cancers. (Photo by p.cunningham)
Deborah MacDonald, Ph.D., R.N., A.P.N.G., assistant professor in the Division of Clinical Cancer Genetics, understands the issues these women may face, particularly if they are younger. Now, a five-year, $729,000 grant from the American Cancer Society will boost her drive to uncover and minimize the psychological and social challenges these younger women meet.
Many women who carry mutations in genes called BRCA1 and BRCA2 eventually develop breast and ovarian cancers. Women with a mutation in either of these genes have a 50 to 80 percent lifetime risk of breast cancer and a 15 to 50 percent chance of ovarian cancer — much higher than the lifetime risk of 12 percent and about 1.5 percent, respectively, for all women.
Because these women are at such high risk of cancer and often develop breast cancer in their 30s or 40s, they begin breast screening at a younger age than most women, and some decide to have their breasts removed to prevent the disease, according to MacDonald. Also, because there are no reliable tools to find ovarian cancer early, physicians recommend these women have their ovaries removed when they are done having children or before age 40. The surgery greatly reduces ovarian cancer risk and, particularly for premenopausal women, breast cancer risk, but the psychological and social cost of outsmarting the disease can be high.
“Early removal of healthy ovaries forces many women to accelerate or abandon childbearing and to enter menopause abruptly and at a younger age than their peers,” MacDonald said.
MacDonald and her colleagues at City of Hope have found that these women often struggle with the decision to undergo the surgery due to concerns about the impact on sexuality, intimacy, fertility and other factors related to early menopause. Unfortunately, researchers have not explored these issues to fully understand or meet these women’s needs, she said.
Supported by the grant and mentored by Betty Ferrell, Ph.D., R.N., professor in the Division of Nursing Research and Education, MacDonald will interview premenopausal women age 21 to 45 years from diverse ethnic backgrounds who have a BRCA mutation. Her aim: to explore their concerns and the factors affecting their psychosocial health, and then use the findings to create and test an educational tool to better inform and prepare these women for making decisions associated with their increased, hereditary cancer risk.
MacDonald also will collect follow up data to find out if and how the tool improves women’s psychological and social well-being. She noted that health professionals will be able to use the study findings immediately with their patients.
“Supporting psychosocial well-being contributes to adherence to cancer screening and care recommendations,” she said. “As genetic testing becomes available for other cancer-associated genes, supporting psychosocial needs will become increasingly important in cancer prevention, control and survivorship.”
In addition, findings arising from the study ultimately may be applied to other patients including breast cancer survivors and their families who do not carry BRCA mutations, she said.