What Made Her Give Up Her Breasts: a Qualitative Study on Decisional Considerations for Contralateral Prophylactic Mastectomy among Breast Cancer Survivors Undergoing BRCA1/2 Genetic Testing

Ava Kwong,Annie T.W Chu

doi:10.7314/apjcp.2012.13.5.2241

Abstract

This qualitative study retrospectively examined the experience and psychological impact of contralateral prophylactic mastectomy (CPM) among Southern Chinese females with unilateral breast cancer history who underwent BRCA1/2 genetic testing. Limited knowledge is available on this topic especially among Asians; therefore, the aim of this study was to acquire insight from Chinese females' subjective perspectives. A total of 12 semi-structured in-depth interviews, with 11 female BRCA1/BRCA 2 mutated gene carriers and 1 non-carrier with a history of one-sided breast cancer and genetic testing performed by the Hong Kong Hereditary Breast Cancer Family Registry, who subsequently underwent CPM, were assessed using thematic analysis and a Stage Conceptual Model. Breast cancer history, procedures conducted, cosmetic satisfaction, pain, body image and sexuality issues, and cancer risk perception were discussed. Retrieval of medical records using a prospective database was also performed. All participants opted for prophylaxis due to their reservations concerning the efficacy of surveillance and worries of recurrent breast cancer risk. Most participants were satisfied with the overall results and their decision. One-fourth expressed different extents of regrets. Psychological relief and decreased breast cancer risk were stated as major benefits. Spouses' reactions and support were crucial for post-surgery sexual satisfaction and long-term adjustment. Our findings indicate that thorough education on cancer risk and realistic expectations of surgery outcomes are crucial for positive adjustment after CPM. Appropriate genetic counseling and pre-and post-surgery psychological counseling were necessary. This study adds valuable contextual insights into the experiences of living with breast cancer fear and the importance of involving spouses when counseling these patients.

Highlights

Women who carry a mutation of BRCA1 or BRCA 2 gene have an increased lifetime risk of breast cancer as high as 50-85% (Matloff et al, 2000; Antoniou et al, 2003; King et al, 2003)
Our findings indicate that thorough education on cancer risk and realistic expectations of surgery outcomes are crucial for positive adjustment after contralateral prophylactic mastectomy (CPM)
The present study found that BRCA1 mutated gene carriers estimated their risk of breast cancer to be, on average 20%, while BRCA 2 mutated gene carriers estimated their risk of breast cancer to be, on average 15.7 % after surgery

Summary

Introduction

Women who carry a mutation of BRCA1 or BRCA 2 gene have an increased lifetime risk of breast cancer as high as 50-85% (Matloff et al, 2000; Antoniou et al, 2003; King et al, 2003). Despite its known efficacy and benefit, such radical procedure involves complex decisional process and related psychological distress including types of mastectomies and choices of breast reconstructions; each with different pros and cons, recovery time, surgical, cosmetic, and psychosocial implications (Bebbington et al, 2003; Björkman et al, 2008). For those who had prior breast cancer history, the decision of going through CPM may stimulate previous experience and result in a more complicated decisional process and psychological reactions

Methods

Results

Conclusion