By Karen Cook
There is an overwhelming lack of resources for healthy women with a gene mutation predisposing them to breast and ovarian cancer, suggests research completed by a PhD nursing student at the University of Calgary.
Pnina Mor, a midwife from Jerusalem, focused her study on Ashkenazi Jewish women. Her research concluded that this population of women, who are predisposed to carry a BRCA1 or BRCA2 gene mutation, are largely ignored by the mainstream health-care system. Mor says the women suffer psychological and social challenges once they test positive for the genetic mutation, even if they aren’t actually diagnosed with cancer.
“Cancer and its medical and psychological impact on women are well represented in medical, nursing, social and feminist studies and literature,” says Mor. “But there is a paucity of research related to these healthy mutation carriers.”
Jacky Price, who is of Jewish descent, is a healthy carrier of the breast cancer gene. And while she knows she is at greater risk of breast or ovarian cancer, she says psychosocial and health-care support is often difficult to find.
Hereditary Breast and Ovarian Cancer (HBOC) Society of Alberta Executive Director Joanne Riediger-Duebel says Mor’s research results cross all ethnicities and are not specific just to the Jewish community. A better understanding of this population’s concerns would be helpful in developing strategies to assist them.
“In our experience, many women who receive a positive result from this testing feel very vulnerable and isolated and often don’t know where to turn in a health-care system that focuses on treating illness.”
Riediger-Duebel adds that Alberta is making strides in developing resources, including the peer support and education programs provided by the HBOC Society.