Cited by 66BRCA gene mutations in cancerWomen's cancer prevention and managementCancer survivorship and care

Looking different, feeling different: women’s reactions to risk-reducing breast and ovarian surgery

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kConFab Psychosocial Group on behalf of the kConFab Investigators, Hallowell, Nina, Baylock, Brandi, Heiniger, Louise, Butow, Phyllis N., Patel, Deepa, Meiser, Bettina, Saunders, Christobel +1 more·2012·Familial Cancer

Abstract

Most studies of quality of life following risk-reducing bilateral salpingo-oophorectomy (RRSO) and mastectomy (RRM) for inherited breast and ovarian cancer susceptibility were conducted before counseling protocols were established and included women at varying times since surgery. This study aimed to overcome these deficiencies and to provide current data on outcomes for this growing group of women. Semi-structured interviews were used to explore the experiences of an Australian cohort of 40 high-risk women 3 years after they underwent RRM and/or RRSO. Data were analyzed using the method of constant comparison. 19/40 women underwent RRSO, 8/40 RRM and 13/40 both procedures. Two themes-looking different and feeling different-captured the psychosocial impact of surgery upon interviewees. All regarded RR surgery as a positive experience and were relieved at having their risks of cancer substantially reduced; however, reducing risk by removing these body parts is not without costs. In addition to relief interviewees also reported experiencing a range of negative emotions and a range of unexpected bodily sensations following surgery and reflected upon both positive and negative changes in their appearance. Women said they had been unprepared for the lack of sensation in reconstructed breasts and/or the severity of menopausal symptoms, which often had a negative impact upon sexuality. At-risk women regard RR surgery as a positive way to manage cancer risk. However, although women who currently undergo RR surgery are informed about its sequelae, few are entirely prepared for the reality of undergoing this procedure. We recommend that women who undergo these procedures should be provided with information supported by psychosocial input before and after RR surgery.

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  • Preventive surgery is highly effective in reducing breast cancer risk, but the decision-making process remains difficult for many women because of the physical and psychological consequences of these interventions.

    “although preventive surgery is highly effective in reducing breast cancer risk, the decision-making process remains difficult for many women because of the physical and psychological consequences of these interventions [30].”

    From Fear of cancer recurrence in breast cancer survivors carrying a BRCA1 or 2 genetic mutation : a cross-sectional study (2024) · cites this paper as [30]

    The Introduction states that risk-reducing mastectomy and/or oophorectomy significantly decreases breast and ovarian cancer incidence. The Discussion and Clinical implications describe physical and psychosocial consequences, including effects women did not fully anticipate. The paper does not establish that these consequences make the decision-making process difficult for many women; its study focuses on their experiences after surgery. (LLM, conf=0.84)

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Authors
kConFab Psychosocial Group on behalf of the kConFab Investigators, Hallowell, N., Baylock, B., Heiniger, L., Butow, P. N., Patel, D., Meiser, B., Saunders, C., & Price, M. A.
Affiliations
  • Newcastle University (GB)
  • The University of Sydney (AU)
  • UNSW Sydney (AU)
Corresponding author
Hallowell, Nina
Venue
Familial Cancer
Published
2011-12-24
Volume
11
Issue
2
Pages
215-224
ISSN
  • 1389-9600 (ISSN-L)
  • 1573-7292
OpenAlex
W2091707270
Cited by
66
References
43
Citations by year
2026: 1 · 2025: 3 · 2024: 4 · 2023: 2 · 2022: 3 · 2021: 7 · 2020: 5 · 2019: 3 · 2018: 9 · 2017: 9 · 2016: 5 · 2015: 5 · 2014: 5 · 2013: 4 · 2012: 1
FWCI
2.00
Type
journal article
Language
en
Open access
Licence
Locations
  • Familial Cancer (publishedVersion)
  • PubMed (publishedVersion)
  • UNSWorks (University of New South Wales, Sydney, Australia) (submittedVersion, cc-by-nc-nd)
  • UWA Profiles and Research Repository (UWA) (submittedVersion)
  • The Sydney eScholarship Repository (The University of Sydney) (submittedVersion)
  • Newcastle University ePrints (Newcastle Univesity)
Funders
  • National Breast Cancer Foundation
  • Cancer Australia (628333)
  • Coordenação de Aperfeiçoamento de Pessoal de Nível Superior
  • Medical Research Council
  • National Health and Medical Research Council
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 › Oncology › Cancer survivorship and care
Keywords
prophylactic surgery, bilateral salpingo-oophorectomy, prophylactic mastectomy, psychosocial impact, quality of life, body image, menopausal symptoms, sexuality, breast reconstruction, patient readiness
MeSH terms
Adult, Aged, Body Image, Counseling, Emotions, Fallopian Tubes, Female, Humans, Interview, Psychological, Mastectomy, Menopause, Middle Aged, Ovarian Neoplasms, Ovariectomy, Prospective Studies, Mammaplasty, Expressed Emotion, BRCA1 Protein, BRCA2 Protein

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