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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A majority of women who undergo prophylactic mastectomy experience reduced cancer worry after surgery.
“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
The majority of women following prophylactic mastectomy reported decreased hereditary cancer-related distress, while other psychosocial functioning does not appear to be significantly negatively affected.
“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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“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…”
Surgical risk reduction: Prophylactic salpingo-oophorectomy and prophylactic mastectomy
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Predictors and outcomes of contralateral prophylactic mastectomy among breast cancer survivors
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“In particular, prior research has suggested patients who opted for BLM or CPM after a specific physician recommendation fared worse than those who actively participated in the decision-making process or opted for these surgeries in the absence of a specific recommendation [17, 36].”
Reproductive Issues for Women With BRCA Mutations
Friedman, L. C. (2005) · JNCI Monographs · doi:10.1093/jncimonographs/lgi012 · Cited by 61 · see citing works
Women's Decision-Making Roles Regarding Contralateral Prophylactic Mastectomy
Nekhlyudov, L. (2005) · JNCI Monographs · doi:10.1093/jncimonographs/lgi038 · Cited by 60 · see citing works
Contralateral prophylactic mastectomy: current perspectives
Yao, K. A., Sisco, M., & Bedrosian, I. (2016) · International Journal of Women s Health · doi:10.2147/ijwh.s82816 · Cited by 59 · see citing works
“or unexpected subsequent procedures; 33% reported that CPM had a negative effect on body appearance.(75) Decreased”
McCarthy, C. M., Hamill, J. B., Kim, H. M., Qi, J., Wilkins, E. G., & Pusic, A. L. (2017) · Annals of Surgical Oncology · doi:10.1245/s10434-017-5915-2 · Cited by 60 · see citing works
“5 years after BPM.(15) Of their cohort, 93% completed postmastectomy reconstruction using implants, 5% underwent BPM alone, and 2% had unknown reconstruction status.”
InfluentialChallenging and Complex Decisions in the Management of the BRCA Mutation Carrier
Stan, D. L., Shuster, L. T., Wick, M. J., Swanson, C. L., Pruthi, S., & Bakkum-Gamez, J. N. (2013) · Journal of Women s Health · doi:10.1089/jwh.2013.4407 · Cited by 58 · see citing works
“A high level of general satisfaction after prophylactic surgery was reported in some studies and women who underwent surgery reported they would do the same again.(20,21) Reproductive concerns in BRCA mutation carriers may include guilt associated with transmission of HBOC to future generations, consideration of in vi…”
Determining Whether a Patient is Feeling Better: Pitfalls from the Science of Human Perception
Redelmeier, D., & Dickinson, V. M. (2011) · Journal of general internal medicine · doi:10.1007/s11606-011-1655-3 · Cited by 15 · see citing works
The Role of Prophylactic Surgery in Cancer Prevention
You, Y. N., Lakhani, V. T., & Wells, S. A. (2007) · World Journal of Surgery · doi:10.1007/s00268-006-0616-1 · Cited by 54 · see citing works
“In a survey of 595 patients who had chosen to undergo PM, 9%–25% reported adverse effects on emotional stability, stress, self-esteem, sexual relations, or femininity, and 36% felt dissatisfied with body appearance, although most (74%) reported substantial relief of emotional concern regarding cancer risk.(33) After P…”
Self-Image and Sexuality Issues among Young Women with Breast Cancer: Practical Recommendations
Hungr, C., Varela, V. S., & Bober, S. L. (2017) · Revista de investigaci�n Cl�nica · doi:10.24875/ric.17002200 · Cited by 53 · see citing works
Gahm, J., Jurell, G., Edsander-Nord, Å., & Wickman, M. (2008) · Journal of Plastic Reconstructive & Aesthetic Surgery · doi:10.1016/j.bjps.2008.11.014 · Cited by 52 · see citing works
Current surgical management of breast cancer
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A model for individualized risk prediction of contralateral breast cancer
Chowdhury, M., Euhus, D., Onega, T., Biswas, S., & Choudhary, P. K. (2016) · Breast Cancer Research and Treatment · doi:10.1007/s10549-016-4039-x · Cited by 51 · see citing works
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Descriptive Review of the Literature on Breast Cancer Outcomes: 1990 Through 2000
Mandelblatt, J. S. (2004) · JNCI Monographs · doi:10.1093/jncimonographs/lgh003 · Cited by 50 · see citing works
Horsman, D. E., Wilson, B. J., Avard, D. M., Meschino, W. S., Kim‐Sing, C., Plante, M., Eisen, A. F., Howley, H. E. A., & Simard, J. (2007) · Journal of Obstetrics and Gynaecology Canada · doi:10.1016/s1701-2163(16)32349-0 · Cited by 49 · see citing works
Decision Regret following Treatment for Localized Breast Cancer
Martinez, K. A., Li, Y., Resnicow, K., Graff, J. J., Hamilton, A. S., & Hawley, S. T. (2014) · Medical Decision Making · doi:10.1177/0272989x14564432 · Cited by 48 · see citing works
Bai, L., Arver, B. W., Johansson, H., Sandelin, K., Wickman, M., & Brandberg, Y. (2019) · The Breast · doi:10.1016/j.breast.2019.01.013 · Cited by 48 · see citing works
Anticipatory Loss and Early Mastectomy for Young Female BRCA1/2 Mutation Carriers
Hoskins, L. M., & Greene, M. H. (2012) · Qualitative Health Research · doi:10.1177/1049732312458182 · Cited by 47 · see citing works
“Finally, risk-reducing bilateral mastectomy (RRBM) has become an increasingly utilized option among cancerunaffected BRCA1/2 mutation carriers (Frost et al., 2000).”
BackgroundResultInfluentialPsychosocial Issues, Sexuality, and Cancer
Tan, G., Waldman, K. L., & Bostick, R. (2002) · Sexuality and Disability · doi:10.1023/a:1021661614318 · Cited by 47 · see citing works
“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…”
BackgroundTime 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 · see citing works
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“Indeed, research shows that RRS typically leads to reductions in perceived risk of developing cancer [7, 8] and reductions in cancerrelated distress [6, 9, 10].”
BackgroundResultPal, T., & Vadaparampil, S. T. (2012) · Cancer Control · doi:10.1177/107327481201900402 · Cited by 44 · see citing works
Patient Satisfaction and Quality of Life in DIEAP Flap versus Implant Breast Reconstruction
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The impact of a false-positive MRI on the choice for mastectomy in BRCA mutation carriers is limited
Hoogerbrugge, N., Kamm, Y. J. L., Bult, P., Landsbergen, K. M., Bongers, E. M. H. F., Brunner, H. G., Bonenkamp, H. J., de Hullu, J. A., Ligtenberg, M. J., & Boetes, C. (2007) · Annals of Oncology · doi:10.1093/annonc/mdm537 · Cited by 43 · see citing works
“The clinical indication for prophylactic mastectomy in BRCA mutation carriers remains controversial: the effects of prophylactic mastectomy on quality of life are not precisely known [14] and the gain in life expectancy may not be large [15].”
BackgroundD'Alonzo, M., Piva, E., Pecchio, S., Liberale, V., Modaffari, P., Ponzone, R., & Biglia, N. (2018) · Clinical Breast Cancer · doi:10.1016/j.clbc.2018.07.015 · Cited by 41 · see citing works
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“a tertiary care center who underwent bilateral mastectomy (Frost et al. 2000; Frost et al. 2005).”
BackgroundGlassey, R., Ives, A. D., Saunders, C. M., & Musiello, T. (2016) · The Breast · doi:10.1016/j.breast.2016.05.012 · Cited by 41 · see citing works
Dans, L. F., Silvestre, M. A. A., & Dans, A. L. (2010) · Journal of Clinical Epidemiology · doi:10.1016/j.jclinepi.2010.09.009 · Cited by 39 · see citing works
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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.”
BackgroundPatenaude, A. F., Orozco, S., Li, X., Kaelin, C. M., Gadd, M., Matory, Y., Mayzel, K., Roche, C. A., Smith, B. L., Farkas, W., et al. (2008) · Psycho-Oncology · doi:10.1002/pon.1279 · Cited by 38 · see citing works
“Little regret about undergoing PM has been reported, but regret was more often reported when patients felt providers had initiated the discussion of PM or when physician recommendation was the major reason given for undergoing surgery [13,16,17].”
A systematic review of women’s satisfaction and regret following risk-reducing mastectomy
Braude, L., Kirsten, L., Gilchrist, J., & Juraskova, I. (2017) · Patient Education and Counseling · doi:10.1016/j.pec.2017.06.032 · Cited by 39 · see citing works
Risk of breast and ovarian cancer in women with strong family histories.
Srivastava, A., McKinnon, W. C., & Wood, M. E. (2001) · PubMed · Cited by 38 · see citing works
Psychosocial and Behavioral Impact of Genetic Counseling and Testing
Vadaparampil, S. T., Miree, C. A., Wilson, C., & Jacobsen, P. B. (2007) · Breast Disease · doi:10.3233/bd-2007-27106 · Cited by 37 · see citing works
“cal and psychosocial functioning after surgery, one of the greatest benefits post surgery was the reduction in concern about developing breast cancer as indicated by decreased levels of cancer worry and perceived risk [3, 22,54].”
Bilateral Implant Breast Reconstruction
Antony, A. K., McCarthy, C. M., Disa, J. J., & Mehrara, B. J. (2013) · Annals of Plastic Surgery · doi:10.1097/sap.0b013e31826af03e · Cited by 37 · see citing works
High satisfaction rate ten years after bilateral prophylactic mastectomy - a longitudinal study
Wasteson, E., Sandelin, K., Brandberg, Y., Wickman, M., & Arver, B. W. (2010) · European Journal of Cancer Care · doi:10.1111/j.1365-2354.2010.01204.x · Cited by 36 · see citing works
Borreani, C., Manoukian, S., Bianchi, E., Brunelli, C., Peissel, B., Caruso, A., Morasso, G., & Pierotti, M. A. (2014) · Clinical Genetics · doi:10.1111/cge.12298 · Cited by 38 · see citing works
“(34), whereas satisfaction with the preventive strategy chosen was evaluated with tree ad hoc questions adapted from previous studies (14, 35, 36).”
MethodBrandberg, 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 · see citing works
- 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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