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. 2020 Sep 29:18:20.
doi: 10.1186/s13053-020-00152-z. eCollection 2020.

Preferences for breast cancer prevention among women with a BRCA1 or BRCA2 mutation

Carol A Mansfield  1 , Kelly A Metcalfe  2 , Carrie Snyder  3   4 , Geoffrey J Lindeman  5   6   7   8 , Joshua Posner  1 , Sue Friedman  9 ; Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer; Henry T Lynch  3 , Steven A Narod  2 , D Gareth Evans  10 , Alexander Liede  11
Affiliations

Preferences for breast cancer prevention among women with a BRCA1 or BRCA2 mutation

Carol A Mansfield et al. Hered Cancer Clin Pract. .

Abstract

Background: Women with a BRCA1 or BRCA2 mutation have high lifetime risks of developing breast and ovarian cancer. The decision to embark on risk reduction strategies is a difficult and personal one. We surveyed an international group of women with BRCA mutations and measured choices and sequence of breast cancer risk reduction strategies.

Methods: Women with a BRCA1/2 mutation and no previous cancer diagnosis were recruited from the US, Canada, the UK, Australia, and from a national advocacy group. Using an online survey, we asked about cancer-risk reduction preferences including for one of two hypothetical medicines, randomly assigned, and women's recommendations for a hypothetical woman (Susan, either a 25- or 36-year-old). Sunburst diagrams were generated to illustrate hierarchy of choices.

Results: Among 598 respondents, mean age was 40.9 years (range 25-55 years). Timing of the survey was 4.8 years (mean) after learning their positive test result and 33% had risk-reducing bilateral salpingo-oophorectomy (RRBSO) and bilateral mastectomy (RRBM), while 19% had RRBSO only and 16% had RRBM only. Although 30% said they would take a hypothetical medicine, 6% reported taking a medicine resembling tamoxifen. Respondents were 1.5 times more likely to select a hypothetical medicine for risk reduction when Susan was 25 than when Susan was 36. Women assigned to 36-year-old Susan were more likely to choose a medicine if they had a family member diagnosed with breast cancer and personal experience taking tamoxifen.

Conclusions: Women revealed a willingness to undergo surgeries to achieve largest reduction in breast cancer risk, although this would not be recommended for a younger woman in her 20s. The goal of achieving the highest degree of cancer risk reduction is the primary driver for women with BRCA1 or BRCA2 mutations in selecting an intervention and a sequence of interventions, regardless of whether it is non-surgical or surgical.

Keywords: BRCA1; BRCA2; Choices; High-risk women; International study; Preferences; Prevention; Risk-reducing surgeries; Survey; Unaffected women.

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Conflict of interest statement

Competing interestsThis study was conducted by RTI Health Solutions under the direction of and funding by Amgen Inc., Thousand Oaks, California. CM is a current and JP is a former employee of RTI Health Solutions that were contracted by Amgen Inc. for the conduct of this study. AL was employed by Amgen at the time of the study and discloses salary and stock ownership. AL discloses current salary and stock ownership with AbbVie Inc. (North Chicago, Illinois) as of April 2019. GL has received research funding support from Amgen and has served on an Amgen Advisory Board. No other conflicts of interest are declared for remaining authors.

Figures

Fig. 1
Fig. 1
Treatment Choices With Denosumab-Like and a Tamoxifen-Like Medicines. a. Medicine 1, a Denosumab-Like Medicinea. b. Medicine 2, a Tamoxifen-Like Medicinea. a Illustration describes the choices used to elicit women’s preferences for breast cancer risk reduction
Fig. 2
Fig. 2
Respondent’s Choices for Herself. a. Path Selected Most Oftena. b. Path Starting With Medicine Selected Most Oftena. Q3M = quarterly; RRBM = risk-reducing bilateral mastectomy; RRBSO = bilateral salpingo oophorectomy. a Sunburst diagram used to visualize hierarchical data using concentric circles. The circle in the center represents the first choice (or root node) as indicated by respondents, with the hierarchy moving outward from the center indicating women’s second, third, and fourth choices. Online, dynamic versions of Sunburst diagrams can be found at https://docs.novisci.com/sunburst+breast+cancer+treatment+survey/
Fig. 3
Fig. 3
Respondent’s Choices for Susan (25 Years Old). a. Path Selected Most Oftena. b. Path Starting With Medicine Selected Most Oftena. Q3M = quarterly; RRBM = risk-reducing bilateral mastectomy; RRBSO = bilateral salpingo oophorectomy. a Sunburst diagram used to visualize hierarchical data using concentric circles. The circle in the center represents the first choice (or root node) as indicated by respondents, with the hierarchy moving outward from the center indicating women’s second, third, and fourth choices. Online, dynamic versions of Sunburst diagrams can be found at https://docs.novisci.com/sunburst+breast+cancer+treatment+survey/
Fig. 4
Fig. 4
Respondent’s Choices for Susan (36 Years Old). a. Path Selected Most Oftena. b. Path Starting With Medicine Selected Most Oftena. Q3M = quarterly; RRBM = risk-reducing bilateral mastectomy; RRBSO = bilateral salpingo oophorectomy. a Sunburst diagram used to visualize hierarchical data using concentric circles. The circle in the center represents the first choice (or root node) as indicated by respondents, with the hierarchy moving outward from the center indicating women’s second, third, and fourth choices. Online, dynamic versions of Sunburst diagrams can be found at https://docs.novisci.com/sunburst+breast+cancer+treatment+survey/
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