Cited by 325BRCA gene mutations in cancerWomen's cancer prevention and managementBreast Implant and Reconstruction

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Long-term Satisfaction and Psychological and Social Function Following Bilateral Prophylactic Mastectomy

Frost, Marlene H.·2000·JAMA

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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. JAMA. 2000;284:319-324

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“Highly satisfied 17 (53) 8 (73) 25 (58) Very satisfied 8 (25) 2 (18) 10 (23) Moderately satisfied 4 (13) 1 (9) 5 ( 12 ) Satisfied 1 (3) 0 1 (2) Disappointed 2 (6) 0 2 (5) Very disappointed 0 0 0 Willing to undergo reconstruction again 31 (96) 11 (100) 42 (98) *Contralateral therapeutic mastectomy was performed in pati…”
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Impact of Bilateral Prophylactic Mastectomy and Immediate Reconstruction on Health-Related Quality of Life in Women at High Risk for Breast Carcinoma: Results of the Mastectomy Reconstruction Outcomes Consortium Study
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“5 years after BPM.(15) Of their cohort, 93% completed postmastectomy reconstruction using implants, 5% underwent BPM alone, and 2% had unknown reconstruction status.”
Influential
Challenging and Complex Decisions in the Management of the BRCA Mutation Carrier
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“Finally, risk-reducing bilateral mastectomy (RRBM) has become an increasingly utilized option among cancerunaffected BRCA1/2 mutation carriers (Frost et al., 2000).”
BackgroundResultInfluential
Psychosocial Issues, Sexuality, and Cancer
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“Interestingly, the majority of women electing to have bilateral prophylactic mastectomies for health reasons (rather than feeling forced into it as a victim of a life-threatening disease) either report “no changes or an improvement in the level of emotional stability, level of stress, self-esteem, sexual relationships…”
Background
Time to prophylactic surgery in BRCA1/2 carriers depends on psychological and other characteristics
Julian‐Reynier, C., Bouhnik, A., Mouret-Fourme, E., Gauthier‐Villars, M., Berthet, P., Lasset, C., Fricker, J., Caron, O., Gesta, P., Luporsi, É., et al. (2010) · Genetics in Medicine · doi:10.1097/gim.0b013e3181f48d1c · Cited by 46
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Satisfaction and Impact on Quality of Life of Clinical and Instrumental Surveillance and Prophylactic Surgery in BRCA-mutation Carriers
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“a tertiary care center who underwent bilateral mastectomy (Frost et al. 2000; Frost et al. 2005).”
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“appearance satisfaction, feelings of femininity, and sexual relationship in the prophylactic setting.(18) Thus, the consequences of more extensive surgery beyond that required to treat the cancer and the impact for survivorship need to be identified.”
Background
Support needs and acceptability of psychological and peer consultation: Attitudes of 108 women who had undergone or were considering prophylactic mastectomy
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A systematic review of women’s satisfaction and regret following risk-reducing mastectomy
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Bilateral Implant Breast Reconstruction
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High satisfaction rate ten years after bilateral prophylactic mastectomy - a longitudinal study
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The psychological impact of breast and ovarian cancer preventive options in BRCA1 and BRCA2 mutation carriers
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“(34), whereas satisfaction with the preventive strategy chosen was evaluated with tree ad hoc questions adapted from previous studies (14, 35, 36).”
Method
Less correspondence between expectations before and cosmetic results after risk-reducing mastectomy in women who are mutation carriers: A prospective study
Brandberg, Y., Arver, B. W., Johansson, H., Wickman, M., Sandelin, K., & Liljegren, A. (2011) · European Journal of Surgical Oncology · doi:10.1016/j.ejso.2011.10.010 · Cited by 36

Authors: Frost, M. H.
Affiliations: Mayo Clinic (US)
Corresponding author: Frost, Marlene H.
Venue: JAMA
Publisher: American Medical Association (AMA)
Published: 2000-07-19
Volume: 284
Issue: 3
Pages: 319
ISSN: 0002-9955 (ISSN-L)
0098-7484
DOI: 10.1001/jama.284.3.319
OpenAlex: W2104836626
Cited by: 325
References: 14
Citations by year: 2026: 5 · 2025: 3 · 2024: 5 · 2023: 7 · 2022: 8 · 2021: 14 · 2020: 10 · 2019: 10 · 2018: 16 · 2017: 20 · 2016: 12 · 2015: 7 · 2014: 10 · 2013: 9 · 2012: 14
FWCI: 9.72
Type: journal article
Language: en
Open access: closed
Locations: JAMA (publishedVersion)
PubMed (publishedVersion)
Funders: U.S. Public Health Service (R01-80181)
Topics: Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › BRCA gene mutations in cancer
Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Women's cancer prevention and management
Health Sciences › Medicine › Surgery › Breast Implant and Reconstruction
Keywords: prophylactic mastectomy, bilateral mastectomy, breast cancer prevention, patient satisfaction, psychological outcomes, social functioning, self-esteem, body image, family history of breast cancer, long-term outcomes
MeSH terms: Adaptation, Psychological, Adult, Breast Neoplasms, Female, Follow-Up Studies, Humans, Mastectomy, Middle Aged, Social Behavior, Linear Models, Patient Satisfaction, Statistics, Nonparametric

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Long-term Satisfaction and Psychological and Social Function Following Bilateral Prophylactic Mastectomy

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