Familial Cancer

, Volume 11, Issue 2, pp 215–224

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

  • Nina Hallowell
  • Brandi Baylock
  • Louise Heiniger
  • Phyllis N. Butow
  • Deepa Patel
  • Bettina Meiser
  • Christobel Saunders
  • kConFab Psychosocial Group on behalf of the kConFab Investigators
  • Melanie A. Price
Original Article

DOI: 10.1007/s10689-011-9504-4

Cite this article as:
Hallowell, N., Baylock, B., Heiniger, L. et al. Familial Cancer (2012) 11: 215. doi:10.1007/s10689-011-9504-4

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.

Keywords

BRCA1 and BRCA2 Breast and ovarian cancer Risk-reducing surgery Qualitative Sexuality and body image 

Copyright information

© Springer Science+Business Media B.V. 2011

Authors and Affiliations

  • Nina Hallowell
    • 1
  • Brandi Baylock
    • 2
    • 3
  • Louise Heiniger
    • 2
    • 3
  • Phyllis N. Butow
    • 2
    • 3
  • Deepa Patel
    • 2
    • 3
  • Bettina Meiser
    • 4
  • Christobel Saunders
    • 5
  • kConFab Psychosocial Group on behalf of the kConFab Investigators
  • Melanie A. Price
    • 2
    • 3
  1. 1.Institute of Health and SocietyNewcastle UniversityNewcastle Upon TyneUK
  2. 2.Centre for Medical Psychology and Evidence-based Decision-making (CeMPED)The University of SydneySydneyAustralia
  3. 3.School of PsychologyThe University of SydneySydneyAustralia
  4. 4.Prince of Wales Clinical SchoolUniversity of New South WalesKensingtonAustralia
  5. 5.School of SurgeryQEII Medical CentrePerthAustralia

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