Understanding experiences of recognising and reporting signs of recurrence following breast cancer: mapping behavioural determinants to optimise follow-up care

Abstract Purpose Approximately 20% of people affected by breast cancer experience recurrence. Shifts to personalised stratified follow-up (PSFU) in the United Kingdom and internationally require individuals to initiate further appointments themselves if they suspect recurrence. We explored (a) breast cancer survivors’ experiences in recognising and reporting signs of recurrence; (b) behavioural determinants underpinning recurrence-related self-management; and (c) views on interventions to optimise PSFU pathways. Methods Qualitative interviews and focus groups were conducted with breast cancer survivors (n = 28). Data were analysed using thematic analysis and mapped onto the Theoretical Domains Framework and the Capability-Opportunity-Motivation-Behaviour model. Results Participants reported limited information and support from healthcare professionals regarding recurrence recognition and reporting, alongside barriers to help-seeking. Key behavioural determinants of recurrence-related self-management behaviours included knowledge, skills, confidence, and the environmental context, influencing symptom recognition, breast self-surveillance and help-seeking behaviour. Participants with invasive lobular carcinoma reported specific challenges, including lower confidence and trust in healthcare professionals and mammographic screening, heightening recurrence fears. Conclusion As PSFU or similar risk-stratified pathways become increasingly common globally, cancer survivors are expected to play a greater role in recognising and reporting potential recurrence. These findings inform how recurrence support can be optimally incorporated into PSFU pathways, which may be applicable to other cancer survivor groups. Key targets for interventions to optimise PSFU are highlighted. Improved recurrence education, self-surveillance support, clear guidance on help seeking and clinician training may increase confidence during survivorship. Tailored interventions are needed for individuals with invasive lobular carcinoma, who face unique challenges.