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


This study was conducted within the Cancer Research Network, a National Cancer Institute-funded collaborative network of 11 healthcare delivery systems committed to the study of cancer prevention, detection, and treatment effectiveness.[27] Six health systems participated: Group Health, Washington; Harvard Pilgrim, Massachusetts; HealthPartners, Minnesota; and Kaiser Permanente in Oregon, Northern California, and Southern California. Approval from the institutional review boards at all sites was obtained.

Subjects included all women from each of the 6 systems, who were age 18 to 80 years and who had undergone either bilateral or contralateral prophylactic mastectomy between 1979 and 1999. Those who underwent a bilateral prophylactic mastectomy did so because they were at increased risk for breast cancer due to a family history of the disease. Those who underwent a contralateral prophylactic mastectomy did so after being diagnosed with unilateral breast cancer. Women were identified from automated enrollment, hospitalization, ambulatory care, and cancer registry data. Using chart review, we confirmed that all the mastectomies were done for prophylactic reasons. Further details on this cohort have been published elsewhere.[7,25] Medical charts, automated health plan data, and state mortality records were used to exclude deceased women from the study of psychosocial outcomes. At 5 sites, primary care physicians were contacted and could decline approval for patient participation in the outcomes study. Following the exclusion of subjects due to death, physician refusal, or invalid address, 967 women were identified for the survey: 195 with bilateral prophylactic mastectomy and 772 women with contralateral prophylactic mastectomy.

Women were surveyed by mail to examine psychosocial outcomes of prophylactic mastectomy. The first mailing of the self-administered survey was followed 3 weeks later by a second mailing and a telephone reminder 1 month after to women who did not respond to the mailings.[1,7,25,28] The survey was 7 pages long and contained questions about demographics, current quality of life, satisfaction with prophylactic mastectomy decision, breast cancer risk-related worry, body image, sexual satisfaction, and overall health perception. In addition, we included 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 (S. R., A. A., L. N.) independently reviewed the responses from the 2 open-ended questions. First, we compiled a list of key words based on the women's comments, and then we developed corresponding domains. Some domains followed the categories of the survey (satisfaction with the decision, body image, sexuality), whereas others emerged from subject responses (implants, reconstruction, social support). Women sometimes made multiple comments over several domains, resulting in multiple comment codes per woman. However, repeated sentiments were coded only once per individual. Discrepancies in coding were discussed until consensus was reached. Within each domain, comments were further examined to identify those that related to information. The coding scheme identified comments expressing both satisfaction and dissatisfaction with the information received.

χ 2 tests were conducted using SAS 8.0 to assess the association of informational needs with contralateral or bilateral prophylactic mastectomy status.


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