Monday, May 20, 2013

Prophylactic Mastectomy: Angelina Jolie Opens a Door on a World of Challenging Decisions

Angelina Jolie’s brave announcement in the New York Times last week that she has undergone a prophylactic mastectomy and reconstruction because of her high hereditary risk of breast and ovarian cancer has resonated loudly with other women who come from families with high cancer rates. Being a carrier of a deleterious mutation in a BRCA1 or BRCA2 gene means that a woman faces a 56-87% risk of developing breast cancer and a 20-60% risk of developing ovarian cancer, both rates far above those faced by women in the general population. Many of the breast cancers occur at unusually early ages, so breast screening in women at high risk is recommended to begin at age 25 and women in screening programs are also advised to consider prophylactic mastectomy and prophylactic oophorectomy when they complete their childbearing.

 As the Cancer Genetics and Prevention Clinic Director of Psychology Research and Clinical Services and the author of Prophylactic Mastectomy: Insights from Women who Chose to Reduce Their Risk (Praeger, 2012), I have heard many women’s stories about how they came to the same decision Angelina made and how they have coped with the physical and psychological challenges which surgery created. The vast majority of women feel as Angelina said she did, grateful for the chance to avoid cancer and to be able to reassure her children that they would not lose her to that disease. Having lost a parent to cancer at a young age and having small children are two of the most common motivations for women to choose prophylactic mastectomy. What Angelina could not cover in her letter were the many dilemmas, challenges, decisions, problems and adaptations which a woman opting for prophylactic mastectomy faces along the way to her successful surgery and recovery. The 21 women I interviewed for the book talked openly about difficulties finding sympathetic doctors, countering well-meaning relatives who opposed the surgery, confronting innermost feelings about their breasts, figuring out how to explain this surgery to small children (one woman told her young children her surgery was like when their stuffed animals needed new stuffing!), and adjusting to a changed sexual experience and body image. The road to “saving my own life” or “feeling safe within my body” is often a bumpy one, leading to a good place, but sometimes requiring support from family, friends, and professionals along the way. Hats off to Angelina, for pointing the GPS down that road! She has made it much easier for other women to follow.

Andrea Farkas Patenaude, PhD, Director of Psychology Research and Clinical Services, Dana-Farber Cancer Institute, Author, Prophylactic Mastectomy: Insights from Women Who Chose to Reduce Their Risk (Praeger, 2012) 

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