Timely access to risk-reducing bilateral mastectomy: a systematic review of uptake, predictors, surgical waiting times and barriers

Background: Women with genetic mutations predisposing them to breast cancer have a much higher risk of young-onset aggressive breast cancer than the average population. Risk-reducing bilateral mastectomy (RRBM) greatly reduces this risk. However, women who decide on RRBM are often faced with delays in accessing surgery. Primary objectives: To document international data on uptake and predictors of RRBM, and time between identification of high-risk status and RRBM. Secondary objective: To explore barriers to timely surgery. Methods: MEDLINE, EMBASE, Scopus and PsycINFO were systematically searched for articles published between 1996 and 2024. Eligible abstracts (n = 433) were exported to an EndNote library for review. Discordance between reviewers was resolved by consensus. Ethics approval was not required for this systematic review of secondary data. Results: Nineteen articles underwent full-text review with 12 meeting the selection criteria, comprising 9851 breast cancer unaffected, high-risk women. All were observational cohort studies, comprising data audit/review over varying periods of time. Three studies were based in England, two in the USA and two in France, with one each from North America and Europe combined, Slovenia, Canada, Denmark and the Czech Republic. Four of the 12 studies were fully prospective, with one using both retrospective and prospective data collection. Uptake of RRBM ranged from 3.6 per cent (France) to 50 per cent (Denmark), and time to RRBM ranged from five months (USA) to 92 months (Denmark). Predictors of RRBM uptake are described and barriers to timely access included planned delay strategies and clinician attitudes. Discussion: Results showed wide variation in median waiting times, partly reflecting cultural differences. Pre-genetic testing treatment intentions were generally followed. Denmark had both the highest uptake and longest median time to RRBM, suggesting timing of surgery was not hindered by resource limitations. Conclusion: Reliable data about time between decision-making and surgery is lacking and could be improved with prospective national public databases.