Heightened perception of breast cancer risk in young women at risk of familial breast cancer
The objective of this study was to explore the factors that influence perceived personal risk of developing breast cancer (BC) in younger women (<35) who are considering or have undergone bilateral prophylactic mastectomy (BPM). Qualitative interviews guided by interpretative phenomenological analysis were conducted with 46 women who had a strong family history of BC and had either undergone (n = 26) or were considering (n = 20) BPM. Participants were recruited from Australia and New Zealand via hospitals, a genetics clinic, a research cohort, a registry and online. Three main themes were identified: information that increases fear of BC and death, underlying anxiety and fear and screening anxiety. A further two themes: relief following surgery and confusion about residual risk following surgery were identified. Younger women (<35) appeared to have heightened and sometimes inaccurate perceptions of their BC risk. They appeared less relieved of anxiety and fear of developing BC by BPM surgery, in comparison to previous research with older women (>40). Those who had undergone BPM seemed more anxious about their risk of developing BC than those who were still considering surgery. This research has important implications for practice, particularly improving communication of accurate risk statistics. Future research should examine why some women interpret information differently and explore the benefits of psychological consultation for very anxious women.
KeywordsProphylactic mastectomy Risk perception Young women Familial cancer
We wish to thank the women who participated in this study, Genetic Services of Western Australia and the two hospitals involved for their help in recruitment. We also thank The University of Western Australia who awarded a University Postgraduate Award to a PhD student for this research. This research was supported by Register4 through its members’ participation in research and/or provision of samples and information. We wish to thank Heather Thorne, Eveline Niedermayr, the kConFab research nurses and staff, the staff of the Family Cancer Clinics, and the Clinical Follow Up Study (which received funding from the NHMRC, the National Breast Cancer Foundation, Cancer Australia, and the National Institute of Health (USA)) for their contributions to this resource, and the families who contribute to kConFab. kConFab is supported by a grant from the National Breast Cancer Foundation, and previously by the National Health and Medical Research Council (NHMRC), the Queensland Cancer Fund, the Cancer Councils of New South Wales, Victoria, Tasmania, South Australia and Western Australia.
The funding body in the acknowledgements did not contribute to this manuscript.
Compliance with ethical standards
Conflict of interest
The authors declare that they have no conflict of interest.
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