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

Lookup NU author(s): Dr Nina Hallowell

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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.


Publication metadata

Author(s): Hallowell N, Baylock B, Heiniger L, Butow PN, Patel D, Meiser B, Saunders C, Price MA, kConFab Psychosocial Grp, kConFab Investigators

Publication type: Article

Publication status: Published

Journal: Familial Cancer

Year: 2012

Volume: 11

Issue: 2

Pages: 215-224

Print publication date: 23/12/2011

ISSN (print): 1389-9600

ISSN (electronic): 1573-7292

Publisher: Springer

URL: http://dx.doi.org/10.1007/s10689-011-9504-4

DOI: 10.1007/s10689-011-9504-4


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Funding

Funder referenceFunder name
Cancer Council of New South Wales
Cancer Council of South Australia
Cancer Council of Tasmania
Cancer Foundation of Western Australia
Leverhulme Trust
National Breast Cancer Foundation
Queensland Cancer Fund
Cancer Council of Victoria
301930NHMRC
457316NHMRC
153824NHMRC
628333Cancer Australia

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