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

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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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Acknowledgments

We are very grateful to the all the women who took part this study. We wish to thank Heather Thorne, Eveline Niedermayr, the kConFab research nurses and staff, the heads and staff of the Family Cancer Clinics, the Clinical Follow Up Study (funded 2001-2009 by NHMRC and currently by the National Breast Cancer Foundation and Cancer Australia #628333) and the many families who contribute to kConFab, for their contributions to this resource. kConFab is supported by grants from the National Breast Cancer Foundation, the National Health and Medical Research Council (NHMRC) and by the Queensland Cancer Fund, the Cancer Councils of New South Wales, Victoria, Tasmania and South Australia, and the Cancer Foundation of Western Australia. The kConFab Psychosocial study has been funded by National Health and Medical Research Council (Project Grants 153824, 301930, 457316). NH would like to thank the Leverhulme Trust for its generous support in the form of a Study Abroad Fellowship and The Universities of Sydney (Centre of Medical Psychology and Evidence-based Decision-making (CeMPED), School of Psychology), Melbourne (the Centre for Health and Society) and Adelaide (Department of Psychology) for accommodating her while she was writing this paper. P Butow receives a Principal Research Fellowship from NHMRC; B Meiser receives a Career Development Award from the NHMRC.

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Authors and Affiliations

  1. Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle Upon Tyne, NE2 4AX, UK

    Nina Hallowell

  2. Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, Sydney, NSW, Australia

    Brandi Baylock, Louise Heiniger, Phyllis N. Butow, Deepa Patel & Melanie A. Price

  3. School of Psychology, The University of Sydney, Sydney, NSW, Australia

    Brandi Baylock, Louise Heiniger, Phyllis N. Butow, Deepa Patel & Melanie A. Price

  4. Prince of Wales Clinical School, University of New South Wales, Kensington, NSW, Australia

    Bettina Meiser

  5. School of Surgery, QEII Medical Centre, Perth, WA, 6009, Australia

    Christobel Saunders

Authors
  1. Nina Hallowell
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  2. Brandi Baylock
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  3. Louise Heiniger
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  4. Phyllis N. Butow
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  5. Deepa Patel
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  6. Bettina Meiser
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  7. Christobel Saunders
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  8. Melanie A. Price
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Consortia

kConFab Psychosocial Group on behalf of the kConFab Investigators

Corresponding author

Correspondence to Nina Hallowell.

Additional information

The members of the “kConFab Psychosocial Group on behalf of the kConFab Investigators” are given in “Appendix”.

Appendix

Appendix

The kConFab Psychosocial Group includes the following in addition to the authors listed in the author group: B Bennett & K Tucker, Department of Medical Oncology, Prince of Wales Hospital, Randwick, Australia. S-A McLachlan Department of Oncology and Department of Medicine, St Vincent’s Hospital, Melbourne, Australia; K-A Phillips, Department of Medicine, St Vincent’s Hospital, University of Melbourne, Melbourne, Australia; Division of Cancer Medicine, Peter MacCallum Cancer Centre, Victoria, Australia; School of Population Health, University of Melbourne; CC Tennant, Sydney Medical School (Northern), The University of Sydney, Sydney, Australia.

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Hallowell, N., Baylock, B., Heiniger, L. et al. Looking different, feeling different: women’s reactions to risk-reducing breast and ovarian surgery. Familial Cancer 11, 215–224 (2012). https://doi.org/10.1007/s10689-011-9504-4

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