What Women Wish They Knew Before Prophylactic Mastectomy

Sharon J. Rolnick, PhD, MPH; Andrea Altschuler, PhD; Larissa Nekhlyudov, MD; Joann G. Elmore, MD; Sarah M. Greene, MPH; Emily L. Harris, PhD; Lisa J. Herrinton, PhD; Mary B. Barton, MD; Ann M. Geiger, PhD; * Suzanne W. Fletcher, MD


Cancer Nurs. 2007;30(4):285-291. 

In This Article

Abstract and Introduction

Although prophylactic mastectomy significantly reduces the incidence and recurrence of breast cancer, little is known about women's information needs before the procedure. We surveyed 967 women, from 6 healthcare systems, with bilateral or contralateral prophylactic mastectomy performed between 1979 and 1999. There were 2 open-ended questions: "What one thing do you wish you had known before your prophylactic mastectomy" and "Is there anything else you would like to share with us?" Three researchers categorized responses, and informational needs were ascertained. Seventy-one percent (684 women) responded, of which 81% answered one or both open-ended questions. There were 386 comments (made by 293 women) that related to information needs; 79% of women had bilateral prophylactic mastectomy and 58% had contralateral prophylactic mastectomy. Most concerns (69%) were related to reconstruction: the longevity; look and feel of implants, pain, numbness, scarring, and reconstruction options. Many women wished they had seen photographs to better prepare them for the final result. Our findings suggest that information needs of many women undergoing prophylactic mastectomy, particularly those selecting bilateral prophylactic mastectomy, have not been sufficiently addressed. Clinicians and health educators should be aware of patient needs and must counsel women accordingly.

Although prophylactic mastectomy is a highly invasive procedure, women select this surgery to lower their breast cancer risk. Some may be at high risk for breast cancer due to family history of the disease, others may have obtained screening for BRCA 1 and 2 mutations and been found to be positive.[1,2,3,4,5,6] For women with a history of unilateral breast cancer facing the possibility of subsequent cancer in the contralateral breast, prophylactic mastectomy has been shown to reduce breast cancer risk.[7,8,9,10] In addition, studies of bilateral prophylactic mastectomy have found reductions in subsequent breast cancer incidence of 90% and greater.[2,3] It may also provide gains in life expectancy.[4,8,11] Thus, although the surgery is invasive and irreversible, the risk reduction it affords is often appealing.

Although there is a growing literature on information needs among cancer patients and where they can obtain information,[12,13,14,15,16,17,18,19] there are limited data on the specific information women would like to know when considering prophylactic mastectomy. Researchers have examined satisfaction after both bilateral and contralateral prophylactic mastectomy[20,21] as well as regret related to contralateral prophylactic mastectomy.[11,22,23] One report stated that women who obtained bilateral prophylactic mastectomy wanted more information, but few specifics were offered.[22] Studies claim women benefit from knowledge about the procedure and what to expect following their surgery, often related to cosmetic results,[20,24] but no one has directly asked women what they wish they had known. We used a large, community-based population of women undergoing bilateral or contralateral prophylactic mastectomy, who were initially studied to assess the efficacy of prophylactic mastectomy[1,7] and then were surveyed to examine psychosocial outcomes and quality of life.[25,26] In the survey, we included open-ended questions to ask women specifically what they wish they had known prior to selecting prophylactic mastectomy. This article reports on the information needs women expressed.


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