Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy

Marlene H. Frost, Daniel J Schaid, Thomas A. Sellers, Jeffrey M. Slezak, Philip G. Arnold, John E. Woods, Paul M. Petty, Joanne L. Johnson, Diana L. Sitta, Shannon K. McDonnell, Teresa A. Rummans, Robert Brian Jenkins, Jeff A Sloan, Lynn C. Hartmann

Research output: Contribution to journalArticle

245 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)319-324
Number of pages6
JournalJournal of the American Medical Association
Volume284
Issue number3
StatePublished - Jul 19 2000

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Psychology
Breast Neoplasms
Reconstructive Surgical Procedures
Femininity
Prophylactic Mastectomy
Self Concept
Emotions
Outcome Assessment (Health Care)
Delivery of Health Care
Surveys and Questionnaires

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Frost, M. H., Schaid, D. J., Sellers, T. A., Slezak, J. M., Arnold, P. G., Woods, J. E., ... Hartmann, L. C. (2000). Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. Journal of the American Medical Association, 284(3), 319-324.

Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. / Frost, Marlene H.; Schaid, Daniel J; Sellers, Thomas A.; Slezak, Jeffrey M.; Arnold, Philip G.; Woods, John E.; Petty, Paul M.; Johnson, Joanne L.; Sitta, Diana L.; McDonnell, Shannon K.; Rummans, Teresa A.; Jenkins, Robert Brian; Sloan, Jeff A; Hartmann, Lynn C.

In: Journal of the American Medical Association, Vol. 284, No. 3, 19.07.2000, p. 319-324.

Research output: Contribution to journalArticle

Frost, MH, Schaid, DJ, Sellers, TA, Slezak, JM, Arnold, PG, Woods, JE, Petty, PM, Johnson, JL, Sitta, DL, McDonnell, SK, Rummans, TA, Jenkins, RB, Sloan, JA & Hartmann, LC 2000, 'Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy', Journal of the American Medical Association, vol. 284, no. 3, pp. 319-324.
Frost, Marlene H. ; Schaid, Daniel J ; Sellers, Thomas A. ; Slezak, Jeffrey M. ; Arnold, Philip G. ; Woods, John E. ; Petty, Paul M. ; Johnson, Joanne L. ; Sitta, Diana L. ; McDonnell, Shannon K. ; Rummans, Teresa A. ; Jenkins, Robert Brian ; Sloan, Jeff A ; Hartmann, Lynn C. / Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy. In: Journal of the American Medical Association. 2000 ; Vol. 284, No. 3. pp. 319-324.
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abstract = "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 = "Frost, {Marlene H.} and Schaid, {Daniel J} and Sellers, {Thomas A.} and Slezak, {Jeffrey M.} and Arnold, {Philip G.} and Woods, {John E.} and Petty, {Paul M.} and Johnson, {Joanne L.} and Sitta, {Diana L.} and McDonnell, {Shannon K.} and Rummans, {Teresa A.} and Jenkins, {Robert Brian} and Sloan, {Jeff A} and Hartmann, {Lynn C.}",
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AU - Schaid, Daniel J

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AU - Arnold, Philip G.

AU - Woods, John E.

AU - Petty, Paul M.

AU - Johnson, Joanne L.

AU - Sitta, Diana L.

AU - McDonnell, Shannon K.

AU - Rummans, Teresa A.

AU - Jenkins, Robert Brian

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AU - Hartmann, Lynn C.

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N2 - 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.

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