Finding the five‐year window: A qualitative study examining young women's decision‐making and experience of using tamoxifen to reduce BRCA1/2 breast cancer risk

Abstract

Objective Tamoxifen has been demonstrated to reduce breast cancer risk in high‐risk, premenopausal women. Yet, very few young women with hereditary breast and ovarian cancer syndrome in Australia use tamoxifen, despite this being a less‐invasive option compared to risk‐reducing mastectomy. This study aims to examine young women's decision‐making about and experience of taking tamoxifen to reduce their breast cancer risk. Methods Young women with a BRCA1/2 mutation participated in semi‐structured qualitative interviews, recruited mainly from a metropolitan clinical genetics service. Data were analysed using an inductive, team‐based approach to thematic analysis. Results Forty interviews with women aged 20–40 years with a BRCA1/2 mutation were conducted. Eleven women could not recall discussing tamoxifen with their healthcare provider or were too young to commence cancer risk management. Twenty‐three women chose not to use tamoxifen because it is contraindicated for pregnancy or because it did not offer immediate and great enough risk reduction compared to bilateral risk‐reducing mastectomy. Six women who were definite about not wanting to have children during the following 5‐year period chose to use tamoxifen, and most experienced none or transient side effects. Conclusions Decision‐making about tamoxifen was nuanced and informed by considerations characteristic of young adulthood, especially childbearing. Therefore, clinical discussions about tamoxifen with young women with a BRCA1/2 mutation must include consideration of their reproductive plans.

Breast cancer genetic mutation: Synthesis of women's experience

“…Differences in these adjustments were often related to where women were in their stage of life regarding relationships and children. Surgery was believed to be the only way to gain control and eliminate the threat of cancer (Becker, 2017; Dean & Fisher, 2019; Forrest et al, 2021; Puski et al, 2018; Ross Arguedas et al, 2020; West, 2016; Young et al, 2017). Concerns over femininity were apparent, but women expressed one's sense of worth was challenged in an attempt to keep on living (Ross Arguedas et al, 2020).…”

“…Those whose families were complete were more likely to proceed with oophorectomy (Forrest et al, 2021; Mahat‐Shamir & Possick, 2017 ) . Prioritisation of risk‐reducing surgery was individualised, with many not comprehending that BRCA poses a risk of both breast cancer and ovarian cancer (Ross Arguedas et al, 2020; Shilling et al, 2020).…”

“…Tamoxifen was taken by those not ready to have children or wanting to delay risk‐reducing surgery (Forrest et al, 2021). Reasons for not taking Tamoxifen included a belief that it did not offer enough risk reduction, or concerns regarding side effects (Forrest et al, 2021).…”

“…Tamoxifen was taken by those not ready to have children or wanting to delay risk‐reducing surgery (Forrest et al, 2021). Reasons for not taking Tamoxifen included a belief that it did not offer enough risk reduction, or concerns regarding side effects (Forrest et al, 2021). Insufficient knowledge of the use of Tamoxifen as chemoprevention for BRCA was common (Dean & Fisher, 2019; Forrest et al, 2021).…”

“…Tamoxifen was taken by those not ready to have children or wanting to delay risk-reducing surgery (Forrest et al, 2021). Reasons…”