A review of new research by Denise Stewart

A recent small research study in Sweden examined the social and emotional implications of prophylactic mastectomy. Prophylactic mastectomy has been a choice for women to manage their breast cancer risk – where either one or both breasts are removed as a means of removing the tissue where breast cancer cells form. Angelina Jolie made news headlines with her choice of prophylactic mastectomy of both breasts, to manage her family’s genetic risk of breast cancer. In Angelina’s case she chose to have an immediate breast reconstruction. This option is not always available or chosen to many women.

The study of 43 women investigated the social, emotional and physical experiences associated with prophylactic mastectomy (PM), with no breast reconstruction and over a period of 2 years. The study compared the responses of the women receiving a 6 week physical therapy program and those women who did not.

At 2 years there was a very high experience by women in both groups of shoulder and/or thoracic spine stiffness (70%), pain (50%) and decreased motion (40%). 90% of the women experienced decreased sensation in their breast area and at least 50% reported that this decreased sensation affected them.

A reasonable number of women (>40%) reported experiencing feelings of being self- conscious, less attractive and less sexually attractive, less feminine and dissatisfaction with scars and their body.

The outcome of receiving 6 weekly treatment sessions by a physiotherapist over the first few months did not show any significant difference in the responses by women to these issues. The high report of pain and stiffness at 2 years indicates that women who have a prophylactic mastectomy may require longer term physical management strategies.

This is one of the very first studies investigating the long term physical, social and emotional impact of prophylactic mastectomy and is only a small study. Yet it offers women and breast cancer support services a better understanding of the extent of these issues and the importance of considering new support services that may help women better cope over time.