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Long-term Satisfaction and Psychological and Social Function Following Bilateral Prophylactic Mastectomy
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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“Studies have shown that the majority of women undergoing PM experience reduced cancer worry post-surgery [Frost 2000] [Bresser 2006] [Geiger 2006]”
From Support needs and acceptability of psychological and peer consultation: Attitudes of 108 women who had undergone or were considering prophylactic mastectomy (2008) · cites this paper as Frost 2000
In the citing paper
“Studies have shown that the majority of women following PM reported decreased (hereditary) cancer related distress while other psychosocial functioning does not appear to be significantly affected in a negative way [5,8-10].”
From Standard psychological consultations and follow up for women at increased risk of hereditary breast cancer considering prophylactic mastectomy (2009) · cites this paper as [8]
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BackgroundInfluentialHeightened perception of breast cancer risk in young women at risk of familial breast cancer
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“Regarding satisfaction, the Mayo Clinic group [21] published a revision that evaluated satisfaction after prophylactic mastectomy in 639 patients with a positive family history.”
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Crabb, S., & LeCouteur, A. (2006) · Critical Public Health · doi:10.1080/09581590600601957 · Cited by 14
“Several recent studies have examined factors associated with women’s decisions to undergo mastectomy, and their reported satisfaction with the procedure after differing lengths of time (Stefanek et al., 1995; Stefanek et al., 1999; Frost et al., 2000; Meiser et al., 2000; Wagner et al., 2000).”
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“RRM has been associated with lowered general anxiety and reduced concern about breast cancer as early as in 2000 [32].”
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Barnes-Kedar, I., & Plon, S. E. (2002) · Obstetrics and Gynecology Clinics of North America · doi:10.1016/s0889-8545(01)00004-3 · Cited by 12
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“As it has been shown, women at high risk of breast cancer experienced significantly lower anxiety after surgery [32], whereas women who did not have surgery showed no such improvement [33].”
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“Although long-term satisfaction after prophylactic bilateral mastectomy has been reported to be as high as 70 % (72), the decision should remain an informed choice of the individual.”
BackgroundComparing Patient Satisfaction in Bilateral and Unilateral Breast Reconstruction
Sinno, S., Salvino, M. J., & Vandevender, D. K. (2014) · Plastic and Aesthetic Nursing · doi:10.1097/psn.0000000000000048 · Cited by 11
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“However, although overall satisfaction with BPM is reportedly high, surveys of women who undergo bilateral surgery have indicated that up to one-third report negative physical effects, and a significant minority of respondents have a lessened sense of sexuality after surgery.(37-39) In addition, the length of recovery…”
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“Although most women have been shown to be satisfied overall, in one study, 23% of women experienced negative effects on sexual relationships following RRM [9].”
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“High-risk screening (HRS) consisting of annual mammogram and MRI has been found to detect most breast cancers at a very early stage and is recommended to mBRCA who defer prophylactic mastectomy (6-8).”
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“Long-term follow-up indicates a 74% reduction in emotional concern regarding risk of developing breast cancer, but carries negative impact on feeling of femininity and satisfaction with body appearance (25% and 36% dissatisfaction, respectively) (24).”
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“The majority of women who elect risk-reducing mastectomy are satisfied with their decision [65].”
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Zhang, J., Kurian, A. W., Jo, B., Nouriani, B., Neri, E., Gross, J. J., & Spiegel, D. (2023) · Cancer Medicine · doi:10.1002/cam4.5963 · Cited by 8
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“5 years after surgery, 70% were satisfied with their decision to undergo CPM [26].”
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Counselling Framework for Germline BRCA1/2 and PALB2 Carriers Considering Risk-Reducing Mastectomy
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“Studies examining the long-term psychological impact of bilateral mastectomy in BRCA1/2 carriers tend to show sustained reductions in anxiety and cancer-related distress following surgery [99–101].”
BackgroundBreast Cancer Screening and Prophylactic Mastectomy for High-Risk Women in Romania
Filip, C. I., Catana, A. M., Kutasi, E., Roman, S. A., Militaru, M. S., Risteiu, G. A., & Dindelengan, G. C. (2024) · Medicina · doi:10.3390/medicina60040570 · Cited by 9
“In the United Kingdom, according to the NHS, prophylactic mastectomies are eligible without additional funding for all high-risk women [88,89].”
BackgroundNipple-sparing mastectomy in women at high risk of developing breast cancer
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Management of the asymptomatic BRCA mutation carrier
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“Some data indicate that PBM improves quality of life by reducing emotional concern for developing breast cancer.(85)”
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Breast Reconstruction in Women Under 30: A 10-Year Experience
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Understanding genetic analysis for breast cancer and its implications for plastic surgery
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“18,19 Preparing patients appropriately for what to expect in the postoperative period is an essential aspect of patient-centered care, and studies have shown that patients’ level of satisfaction with preoperative information strongly influences postoperative satisfaction with breasts and long-term…”
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“Frost et al. (2000) investigated long-term satisfaction of women following bilateral prophylactic surgery.”
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“In contrast, the surgical option of bilateral prophylactic mastectomy offers a more substantial risk reduction of 90%–95%,(2) but can require multiple surgeries if reconstruction is chosen and social and psychological implications are commonly experienced.(6,7) While tamoxifen has been offered to high‐risk women in Au…”
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Commentary: Bilateral risk-reducing mastectomy is the safest strategy in BRCA1 carriers
Glassey, R., Saunders, C. M., & Hardcastle, S. J. (2017) · Frontiers in Psychology · doi:10.3389/fpsyg.2017.00121 · Cited by 7
“As such, many are driven to undergo BPM out of fear without considering the consequences (Frost et al., 2000).”
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Prophylactic Mastectomy: An Appraisal
Zagouri, F., Chrysikos, D., Sergentanis, T. Ν., Γιαννακοπούλου, Γ., Zografos, C. G., PAPADIMITRIOU, C. A., & Zografos, G. (2013) · The American Surgeon · doi:10.1177/000313481307900233 · Cited by 6
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Beyond the wounds:The SCAR Projectas space for examining breast cancer and mastectomy experiences
Doh, H., & Pompper, D. (2015) · Social Semiotics · doi:10.1080/10350330.2015.1041792 · Cited by 7
“Because breasts serve as symbol of feminine identity, sexuality, and attractiveness, breast loss often negatively impacts selfconcept and body image (Frost et al. 2000), and distorts the mental picture of one’s physical appearance and sexuality (Roid and Fitts 1988).”
Background
Metadata
- 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
- 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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