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Marlene H. Frost, RN, PhD; Daniel J. Schaid, PhD; Thomas A. Sellers, PhD; Jeffrey M. Slezak, BS; Phillip G. Arnold, MD; John E. Woods, MD; Paul M. Petty, MD; Joanne L. Johnson, RN; Diana L. Sitta, RN; Shannon K. McDonnell, MS; Teresa A. Rummans, MD; Robert B. Jenkins, MD, PhD; Jeff A. Sloan, PhD; Lynn C. Hartmann, MD

JAMA. 2000;284:319-324.

Context  Prophylactic mastectomy is a preventive option for women who wish to reduce their risk of breast cancer. There has been concern about possible negative psychological sequelae following this procedure. However, few data are available regarding long-term satisfaction and psychological and social function following this procedure.

Objective  To evaluate patients' long-term satisfaction and psychological and social function following prophylactic mastectomy.

Design, Setting, and Participants  Descriptive study of all women known to be alive (n = 609) who had a family history of breast cancer and elected to undergo bilateral prophylactic mastectomy at a large, tertiary US health care clinic between 1960 and 1993, 94% (n = 572) of whom completed a study questionnaire.

Main Outcome Measures  Satisfaction with procedure and effects on psychological and social function, based on responses to the study-specific questionnaire.

Results  Mean time from prophylactic mastectomy to last follow-up was 14.5 years. Most women (70%) were satisfied with the procedure; 11% were neutral; and 19% were dissatisfied. Among the psychological and social variables, the most striking finding was that 74% reported a diminished level of emotional concern about developing breast cancer. The majority of women reported no change/favorable effects in levels of emotional stability (68%/23%), level of stress (58%/28%), self-esteem (69%/13%), sexual relationships (73%/4%), and feelings of femininity (67%/8%). Forty-eight percent reported no change in their level of satisfaction with body appearance; 16% reported favorable effects. However, 9%, 14%, 18%, 23%, 25%, and 36% reported negative effects in these 6 variables, respectively.

Conclusions  This study suggests that positive outcomes following prophylactic mastectomy include decreased emotional concern about developing breast cancer and generally favorable psychological and social outcomes. These must be weighed against the irreversibility of the decision, potential problems with implants and reconstructive surgery, and occurrence of adverse psychological and social outcomes in some women.

Author Affiliations: Divisions of Medical Oncology (Drs Frost and Hartmann), Research Services (Ms Sitta), Biostatistics (Drs Schaid and Sloan, Mr Slezak, and Ms McDonnell), Plastic and Reconstructive Surgery (Drs Arnold, Woods, and Petty), and Clinical Epidemiology (Dr Sellers and Ms Johnson), Departments of Laboratory Medicine and Pathology (Dr Jenkins) and Psychiatry and Psychology (Dr Rummans), Mayo Clinic and Mayo Foundation, Rochester, Minn.

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