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

75 Background: The rate of contralateral prophylactic mastectomy (CPM) has increased but little is known about the sources of information women utilize to choose CPM. Methods: A 55-item survey validated with breast cancer survivors was administered to 136 patients before surgery from two institutions. Results: The median age was 58 years (range 30-85). Eighty-three (69.2%) were White. Seventy-five (58.6%) had a lumpectomy, 41 (32%) a unilateral mastectomy and 12 (9.4%) had a CPM. About 80% of women felt the information they were given about breast cancer treatment was consistent. Fifty-five patients (41.7%) sought out extra information beyond what the doctor gave them. Information with the strongest influence was websites, books recommended by their doctor (44%) and websites, books not recommended by their doctor (30.4%) was the second strongest influence. Women ranked their doctor’s spoken advice as the most important source of information (74.3%) compared to advice from individuals outside of medicine, online information, observing breast cancer survivors and advice from friends/family. Plastic surgeons and the spouse/partner had more influence on those <50 years old compared to >50 years old (p=0.03). When asked which individual outside of medicine influenced their decision, women chose breast cancer survivors as their top choice compared to their spouse/partner, church leaders and friends/relatives. However, 82 women (62.6%) stated that information provided by staff did not include any information about removing the healthy breast. Forty-one (36%) stated that no one discussed contralateral breast cancer risk and 67 (59%) stated that no one talked with them about the possibility that cancer could turn up somewhere else even if both breasts were removed. Conclusions: Women do not always receive information about CPM from their doctors but they still highly value their doctor’s advice. These findings highlight an opportunity for physicians to educate women about the utility of CPM as part of their surgical treatment.

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Contentment With Quality of Life Among Breast Cancer Survivors With and Without Contralateral Prophylactic Mastectomy

Journal of Clinical Oncology ◽

10.1200/jco.2005.01.9901 ◽

2006 ◽

Vol 24 (9) ◽

pp. 1350-1356 ◽

Cited By ~ 71

Author(s):

Ann M. Geiger ◽

Carmen N. West ◽

Larissa Nekhlyudov ◽

Lisa J. Herrinton ◽

In-Liu A. Liu ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

Cancer Survivors ◽

Breast Cancer Survivors ◽

Prophylactic Mastectomy ◽

Care Delivery ◽

Contralateral Prophylactic Mastectomy ◽

Psychosocial Outcomes ◽

Health Perception

Purpose To understand psychosocial outcomes after prophylactic removal of the contralateral breast in women with unilateral breast cancer. Methods We mailed surveys to women with contralateral prophylactic mastectomy after breast cancer diagnosis between 1979 and 1999 at six health care delivery systems, and to a smaller random sample of women with breast cancer without the procedure. Measures were modeled on instruments developed to assess contentment with quality of life, body image, sexual satisfaction, breast cancer concern, depression, and health perception. We examined associations between quality of life and the other domains using logistic regression. Results The response rate was 72.6%. Among 519 women who underwent contralateral prophylactic mastectomy, 86.5% were satisfied with their decision; 76.3% reported high contentment with quality of life compared with 75.4% of 61 women who did not undergo the procedure (P = .88). Among all case subjects, less contentment with quality of life was not associated with contralateral prophylactic mastectomy or demographic characteristics, but was associated with poor or fair general health perception (odds ratio [OR], 7.0; 95% CI, 3.4 to 14.1); possible depression (OR, 5.4; 95% CI, 3.1 to 9.2); dissatisfaction with appearance when dressed (OR, 3.5; 95% CI, 2.0 to 6.0); self-consciousness about appearance (OR, 2.0; 95% CI, 1.1 to 3.7); and avoiding thoughts about breast cancer (modest: OR, 2.2; 95% CI, 1.1 to 4.5; highest: OR, 1.7; 95% CI, 0.9 to 3.2). Conclusion Most women undergoing contralateral prophylactic mastectomy report satisfaction with their decision and experience psychosocial outcomes similar to breast cancer survivors without the procedure.

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Association Between Genetic Testing for Hereditary Breast Cancer and Contralateral Prophylactic Mastectomy Among Multiethnic Women Diagnosed With Early-Stage Breast Cancer

JCO Oncology Practice ◽

10.1200/op.21.00322 ◽

2021 ◽

Author(s):

Vicky Ro ◽

Julia E. McGuinness ◽

Boya Guo ◽

Meghna S. Trivedi ◽

Tarsha Jones ◽

...

Keyword(s):

Breast Cancer ◽

Genetic Testing ◽

Breast Cancer Survivors ◽

Genetic Test ◽

Prophylactic Mastectomy ◽

Early Stage ◽

Multivariable Analysis ◽

Contralateral Prophylactic Mastectomy ◽

Test Results ◽

Genetic Test Results

PURPOSE Increasing usage of multigene panel testing has identified more patients with pathogenic or likely pathogenic (P or LP) variants in low-moderate penetrance genes or variants of uncertain significance (VUS). Our study evaluates the association between genetic test results and contralateral prophylactic mastectomy (CPM) among patients with breast cancer. METHODS We conducted a retrospective cohort study among women diagnosed with unilateral stage 0-III breast cancer between 2013 and 2020 who underwent genetic testing. We examined whether genetic test results were associated with CPM using multivariable logistic regression models. RESULTS Among 707 racially or ethnically diverse women, most had benign or likely benign (B or LB) variants, whereas 12.5% had P or LP and 17.9% had VUS. Racial or ethnic minorities were twice as likely to receive VUS. Patients with P or LP variants had higher CPM rates than VUS or B or LB (64.8% v 25.8% v 25.9%), and highest among women with P or LP variants in high-penetrance genes (74.6%). On multivariable analysis, P or LP compared with B or LB variants were significantly associated with CPM (odds ratio = 4.24; 95% CI, 2.48 to 7.26). CONCLUSION Women with P or LP variants on genetic testing were over four times more likely to undergo CPM than B or LB. Those with VUS had similar CPM rates as B or LB. Our findings suggest appropriate genetic counseling and communication of cancer risk to multiethnic breast cancer survivors.

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