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The psychosocial impact of bilateral prophylactic mastectomy: prospective study using questionnaires and semistructured
Open accessAbstract
OBJECTIVES: To investigate the psychosocial impact of bilateral prophylactic mastectomy for women with increased risk of breast cancer and to identify, preoperatively, risk factors for postoperative distress. DESIGN: Prospective study using interviews and questionnaire assessments. SETTING: Participants' homes throughout the United Kingdom. PARTICIPANTS: 143 women with increased risk of developing breast cancer who were offered bilateral prophylactic mastectomy and who accepted or declined the surgery; a further 11 were offered surgery but deferred making a decision. MAIN OUTCOME MEASURES: Psychological and sexual morbidity. RESULTS: Psychological morbidity decreased significantly over time for the 79 women who chose to have surgery (accepters): 58% (41/71) preoperatively v 41% (29/71) 6 months postoperatively (difference in percentages 17%, 95% confidence interval 2% to 32%; P=0.04) and 60% (39/65) preoperatively v 29% (19/65) 18 months postoperatively (31%, 15% to 47%; P<0.001). Psychological morbidity in the 64 women who declined surgery (decliners) did not decrease significantly: 57% (31/54) at baseline v 43% (23/54) at 6 months (14%, 0% to 29%; P=0.08) and 57% (29/52) at baseline v 41% (21/52) at 18 months (16%; -2% to 33%; P=0.11). Greater than normal proneness to anxiety was more common in the decliners than in the accepters: 78% (45/58) v 56% (41/73) (22%, 6% to 38%; P=0.006). Accepters were more likely than decliners to believe it inevitable that they would develop breast cancer (32% (24/74) v 10% (6/58) (difference in percentages 22%, 9% to 35%; P=0.003)), and decliners were more likely to believe that screening could help (92% (55/60) v 74% (55/74) (18%, 5% to 31%; P=0.007)). Level of sexual discomfort and degree of sexual pleasure did not change significantly over time in either of the two groups. CONCLUSIONS: Bilateral prophylactic mastectomy may provide psychological benefits in women with a high risk of developing breast cancer.
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“These results are consistent with the findings of others [9,18,19], and indicate that the information provided at the family cancer clinic is complex, thus stressing the importance of repetitive but consistent information regarding the cancer risk by the different clinicians involved.”
From Standard psychological consultations and follow up for women at increased risk of hereditary breast cancer considering prophylactic mastectomy (2009) · cites this paper as [9]
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“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 [9]
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Prophylactic mastectomy for the prevention of breast cancer
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“It would be helpful to ascertain why there was a residual high level of cancer-related worry where women had risk-reducing surgery, as these data would appear to contradict other available evidence (Hatcher et al, 2001).”
ResultImpact of BRCA1/BRCA2 mutation testing on psychologic distress in a clinic-based sample.
Schwartz, M. D., Peshkin, B., Hughes, C., Main, D., Isaacs, C., & Lerman, C. (2002) · Journal of Clinical Oncology · doi:10.1200/jco.20.2.514 · Cited by 257
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“Hatcher, 2001 [26] Observational, prospective cohort Breast 143 Grp 1 median 38, Grp 2 median 40 F Prophylactic mastectomy status Studied women with increased risk of developing BC who were offered bilateral prophylactic mastectomy and who accepted or declined the surgery.”
Backgroundden Heijer, M., Seynaeve, C., Timman, R., Duivenvoorden, H. J., Vanheusden, K., Tilanus‐Linthorst, M. M. A., Menke‐Pluijmers, M. B. E., & Tibben, A. (2011) · European Journal of Cancer · doi:10.1016/j.ejca.2011.10.020 · Cited by 82
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Yanes, T., Willis, A. M., Meiser, B., Tucker, K., & Best, M. C. (2018) · European Journal of Human Genetics · doi:10.1038/s41431-018-0257-5 · Cited by 73
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“(40) UK n /154 at increased risk of developing breast cancer, participating in psychological study 51% mastectomy Unclear”
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A qualitative study looking at the psychosocial implications of bilateral prophylactic mastectomy
Hatcher, M. B., & Fallowfield, L. J. (2003) · The Breast · doi:10.1016/s0960-9776(02)00135-2 · Cited by 67
Self-citationQuality of Life After Bilateral Prophylactic Mastectomy
Geiger, A. M., Nekhlyudov, L., Herrinton, L. J., Rolnick, S. J., Greene, S. M., West, C. N., Harris, E. L., Elmore, J. G., Altschuler, A., Liu, I.-L. A., et al. (2006) · Annals of Surgical Oncology · doi:10.1245/s10434-006-9206-6 · Cited by 66
“Hatcher et al.11 compared similarly at-risk women with and without bilateral prophylactic mastectomy but did not assess overall quality of life.”
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Stefanek, M. E., Hartmann, L. C., & Nelson, W. (2001) · JNCI Journal of the National Cancer Institute · doi:10.1093/jnci/93.17.1297 · Cited by 66
Body Image After Bilateral Prophylactic Mastectomy: An Integrative Literature Review
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Bresser, P. J. C., Seynaeve, C., Gool, A. R. V., Niermeijer, M. F., Duivenvoorden, H. J., van Dooren, S., van Geel, A. N., Menke‐Pluijmers, M. B. E., Klijn, J. G. M., & Tibben, A. (2006) · European Journal of Cancer · doi:10.1016/j.ejca.2006.09.009 · Cited by 63
Surgical risk reduction: Prophylactic salpingo-oophorectomy and prophylactic mastectomy
Dowdy, S. C., Stefanek, M., & Hartmann, L. C. (2004) · American Journal of Obstetrics and Gynecology · doi:10.1016/j.ajog.2004.04.028 · Cited by 61
Reproductive Issues for Women With BRCA Mutations
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Women's Decision-Making Roles Regarding Contralateral Prophylactic Mastectomy
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Hereditary Cancer Syndromes—A Primer on Diagnosis and Management
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Challenging and Complex Decisions in the Management of the BRCA Mutation Carrier
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“Other studies have found no regrets and also no decreased QOL among women who decided to undergo RRM.(18,19) 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.”
Wakefield, C. E., Meiser, B., Homewood, J., Peate, M., Kirk, J., Warner, B., Lobb, E. A., Gaff, C., & Tucker, K. (2007) · Journal of Genetic Counseling · doi:10.1007/s10897-006-9068-x · Cited by 54
“Prophylactic mastectomy has well-established effects on physical and emotional symptoms, as does prophylactic salpingooophorectomy (Bebbington Hatcher et al., 2001; Fry et al., 2001; van Oostrom et al., 2003; Hallowell et al., 2004).”
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Hopwood, P., Howell, A., Lalloo, F. I., & Evans, D. G. (2003) · Public Health Genomics · doi:10.1159/000079383 · Cited by 50
“The use of risk accuracy as an outcome of genetic risk counselling has limitations, and it remains unclear whether accurate risk perceptions motivate appropriate health care behaviour and risk management decisions. Overestimation of risk has been reported in women considering preventive surgery [”
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“Early studies found no evidence of a negative sexual impact in 79 women who opted for RRM up to 18 months post-surgery [19] and only minor deteriorations in body image in 76 women who had RRM up to 3 years prior [20].”
BackgroundResultThe Changing Face of Mastectomy (from Mutilation to Aid to Breast Reconstruction)
Zurrida, S., Bassi, F. D., Arnone, P., Martella, S., del Castillo, A., Martini, R. R., Semenkiw, M. E., & Caldarella, P. (2011) · International Journal of Surgical Oncology · doi:10.1155/2011/980158 · Cited by 49
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“The removal of ‘healthy’ breasts is often seen as a ‘drastic’ or ‘radical’ procedure undertaken on the basis of fear [1,2].”
BackgroundBreast cancer-related preferences among women with and without BRCA mutations
Grann, V. R., Patel, P. R., Bharthuar, A., Jacobson, J. S., Warner, E., Anderson, K. N., Warner, E. A., Tsai, W., Hill, K. A., Neugut, A. I., et al. (2009) · Breast Cancer Research and Treatment · doi:10.1007/s10549-009-0373-6 · Cited by 41
“Controls preferred prophylactic surgery to cancer; women with mutations preferred oophorectomy to ovarian cancer but did not prefer mastectomy to breast cancer, perhaps because they were a selected group who had chose to participate in a screening study rather than having immediate prophylactic surgery [ 25 ].”
BackgroundMeiser, B., Butow, P. N., Price, M., Bennett, B. K., Berry, G., & Tucker, K. (2003) · Journal of Women s Health · doi:10.1089/154099903322447738 · Cited by 40
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
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
Haroun, I., Graham, T., Poll, A., Sun, P., Hill, K., Weitzner, E., Narod, S., & Warner, E. (2011) · Breast · doi:10.1016/j.breast.2011.01.006 · Cited by 39
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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
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“Recently, a study of 143 British women offered PM because of an increased risk of breast cancer indicated that psychosocial morbidity significantly declined in those 79 women that underwent surgery, in contrast to these 64 women who did not choose surgery [13].”
ResultEffects of cognitive behavioral counseling on body Image following mastectomy.
Fadaei, S., Janighorban, M., Mehrabi, T., Ahmadi, S. A., Mokarian, F., & Gukizade, A. (2011) · PubMed Central · Cited by 34
Reasons for undergoing cosmetic surgery: a retrospective study
Thorpe, S. J., Ahmed, B., & Steer, K. (2004) · Sexualities Evolution & Gender · doi:10.1080/14616660412331303857 · Cited by 34
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“In addition to the physical benefits of early detection, breast cancer screening has been shown to have positive effects on psychological well-being by reducing worry and anxiety.(78,79) Therefore, reducing barriers to screening could increase both the physical and psychological health of rural women.”
BackgroundVodermaier, A., Esplen, M. J., & Maheu, C. (2010) · Familial Cancer · doi:10.1007/s10689-010-9325-x · Cited by 32
Predictors of Quality of Life in Women with a Bilateral Prophylactic Mastectomy
Metcalfe, K., Esplen, M., Goel, V., & Narod, S. (2005) · The Breast Journal · doi:10.1111/j.1075-122x.2005.21546.x · Cited by 36
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“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].”
BackgroundResultContralateral Prophylactic Mastectomy: Caveat Emptor
Recht, A. (2009) · Journal of Clinical Oncology · doi:10.1200/jco.2008.21.0518 · Cited by 25
Intensive radiologic surveillance: a focus on the psychological issues.
Warner, E. (2004) · Annals of Oncology · doi:10.1093/annonc/mdh657 · Cited by 27
“The situation is further complicated by the fact that, as previously mentioned [16, 17], mutation carriers who i45”
BackgroundHeightened perception of breast cancer risk in young women at risk of familial breast cancer
kConFab Investigators, Glassey, R., O’Connor, M., Ives, A. D., Saunders, C. M., O’Sullivan, S., & Hardcastle, S. J. (2017) · Familial Cancer · doi:10.1007/s10689-017-0001-2 · Cited by 23
Prophylactic Mastectomy for Women withBRCA1andBRCA2Mutations — Facts and Controversy
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Rosenthal, M. S., & Pierce, H. (2005) · Thyroid · doi:10.1089/thy.2005.15.140 · Cited by 21
“In addition, mastectomies may be disfiguring, psy-chosocially traumatic, and difficult to accept as a prevention strategy (23,24).”
Segerer, R. K., Peschel, C., Kämmerer, U., Häussler, S., Wöckel, A., & Segerer, S. E. (2019) · Breast Care · doi:10.1159/000503370 · Cited by 19
Influences on decision-making for young women undergoing bilateral prophylactic mastectomy
Glassey, R., O’Connor, M., Ives, A. D., Saunders, C. M., & Hardcastle, S. J. (2017) · Patient Education and Counseling · doi:10.1016/j.pec.2017.08.008 · Cited by 19
Who is prone to high levels of distress after prophylactic mastectomy and/or salpingo-ovariectomy?
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Prophylactic Bilateral Mastectomy for Breast Cancer Prevention
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“Of the 451 women who underwent RRM, four developed post-surgery BCs (all in BRCA1/2 PV carriers) compared to 94 expected over a period of follow up of 7894 years, giving a risk reduction of 95.8%.”
BackgroundMethodResultInfluentialSiegel, A., Bremer, R. C., Klein, W. M. P., Savage, S. A., Loud, J. T., & Khincha, P. P. (2021) · Breast Cancer Research and Treatment · doi:10.1007/s10549-021-06410-5 · Cited by 16
The impact of prophylactic mastectomy on sexual well-being: a systematic review
Scotto, L., Pizzoli, S. F. M., Marzorati, C., Mazzocco, K., & Pravettoni, G. (2023) · Sexual Medicine Reviews · doi:10.1093/sxmrev/qead054 · Cited by 16
Have We Lost Sight of the Mirrors?
Freysteinson, W. M., & Cesario, S. K. (2008) · Holistic Nursing Practice · doi:10.1097/01.hnp.0000339343.80758.46 · Cited by 15
Current status of prophylactic mastectomy.
Ghosh, K., & Hartmann, L. C. (2002) · PubMed · Cited by 15
Validated Questionnaires in Female Sexual Function Assessment
Lorenz, T. K., Stephenson, K. R., & Meston, C. M. (2011) · Humana Press eBooks · doi:10.1007/978-1-60761-916-1_21 · Cited by 16
“While some studies have suggested that the SAQ is sensitive to changes in sexual pleasure following prophylactic mastectomies [15], others have suggested no difference in SAQ scores between women who did and did not accept surgery [16].”
ResultMeiser, B., Price, M. A., Butow, P. N., Karatas, J., Wilson, J., Heiniger, L. E., Baylock, B., Charles, M. A., McLachlan, S., & Phillips, K. (2012) · Familial Cancer · doi:10.1007/s10689-012-9585-8 · Cited by 14
When is contralateral mastectomy warranted in unilateral breast cancer?
Barry, M., & Sacchini, V. (2011) · Expert Review of Anticancer Therapy · doi:10.1586/era.11.100 · Cited by 14
Griffith, G., Edwards, R., Gray, J., Wilkinson, C., Turner, J., France, B., & Bennett, P. (2004) · British Journal of Cancer · doi:10.1038/sj.bjc.6601794 · Cited by 16
“…Test Wales (personal communication, 2002). cEstimated by this research team. dUp to 35 – 51% of women at increased risk of developing breast cancer (Hatcher et al, 2001; Meijers-Heijboer et al, 2003) have been found to have prophylactic mastectomy and 27 – 49% (Meijers-Heijboer et al, 2003;…”
BackgroundGlassey, R., Hardcastle, S. J., O'Connor, M., Ives, A., kConFab Investigators, & Saunders, C. (2018) · Psycho-Oncology · doi:10.1002/pon.4558 · Cited by 13
Wittmann, V., Látos, M., Horváth, Z., Simonka, Z., Paszt, A., Lázár, G., & Csabai, M. (2017) · Quality of Life Research · doi:10.1007/s11136-017-1563-z · Cited by 13
The Prevention of Hereditary Breast Cancer
Rodriquez, E., & Domchek, S. M. (2007) · Seminars in Oncology · doi:10.1053/j.seminoncol.2007.07.006 · Cited by 13
Landsbergen, K. M., Prins, J. B., Brunner, H. G., & Hoogerbrugge, N. (2010) · Familial Cancer · doi:10.1007/s10689-010-9387-9 · Cited by 11
“difficulties, a score above 26 indicates serious adaptation difficulties [18].”
BackgroundPress, N. A., Reynolds, S., Pinsky, L. E., Murthy, V. S., Leo, M. C., & Burke, W. (2005) · Social Science & Medicine · doi:10.1016/j.socscimed.2005.01.012 · Cited by 11
Comparing 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
Shapira, R., Turbitt, E., Erby, L. H., Biesecker, B. B., Klein, W. M. P., & Hooker, G. W. (2017) · Familial Cancer · doi:10.1007/s10689-017-0065-z · Cited by 10
Metadata
- Authors
- Hatcher, M. B.
- Affiliations
- The Royal Free Hospital (GB)
- Corresponding author
- Hatcher, M. B.
- Venue
- BMJ
- Publisher
- BMJ
- Published
- 2001-01-13
- Volume
- 322
- Issue
- 7278
- Pages
- 76-76
- ISSN
- 0959-8138 (ISSN-L)
- PMC
- PMC26594
- OpenAlex
- W2013619739
- Cited by
- 160
- References
- 21
- Citations by year
- 2026: 1 · 2025: 2 · 2024: 2 · 2023: 3 · 2022: 1 · 2021: 4 · 2020: 3 · 2019: 8 · 2018: 3 · 2017: 9 · 2016: 5 · 2015: 1 · 2014: 3 · 2013: 5 · 2012: 4
- FWCI
- 6.93
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- BMJ (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Sussex Research Online (University of Sussex) (submittedVersion)
- Figshare (submittedVersion)
- HighWire Press Open Archive (submittedVersion)
- 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
- bilateral prophylactic mastectomy, breast cancer risk, psychosocial impact, psychological morbidity, anxiety proneness, breast cancer screening, helplessness
- MeSH terms
- Adaptation, Psychological, Adult, Anxiety, Body Image, Breast Neoplasms, Female, Humans, Mastectomy, Middle Aged, Patient Acceptance of Health Care, Prospective Studies, Surveys and Questionnaires, Risk Factors, Sexual Behavior
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