“Getting Out of a Dark Place”: a qualitative exploration of the impact, current coping, and what people with breast cancer hope to gain by participating in a fear of recurrence clinical trial

Abstract Purpose Many breast cancer survivors (BCS) experience high levels of psychological distress, including fear of cancer recurrence (FCR). Clinical levels of FCR can negatively impact quality of life and tend to remain stable without intervention. Identifying the impact of FCR on BCS’ lives and how BCS cope with FCR can inform effective care of BCS with FCR. This study’s purpose was to explore the nature of FCR by analyzing qualitative data from an FCR randomized controlled trial (RCT). Methods This qualitative study was part of a 3-arm RCT for BCS (N = 390) reporting clinical FCR at eligibility screening(R01CA255480). Enrolled BCS completed a baseline survey, including three open-ended questions regarding FCR experiences. Following thematic analysis, responses were sorted by BCS’ baseline score on the 7-item Fear of Cancer Recurrence (FCR-7) scale, identifying trends by FCR level. Results Persistent FCR tended to impact BCS’ daily lives across five key domains: emotional, behavioral, cognitive, relational, and professional life. Most participants identified at least one coping strategy, with strategies consistent across FCR-7 score levels. The number of strategies listed tended to increase and tended toward avoidant coping with higher FCR-7 scores. BCS were seeking strategies designed to gain a greater sense of purpose, sense of belonging, and sense of control. Conclusion This study suggests many BCS with clinical FCR are suffering without adequate means of coping. Clinicians are encouraged to regularly ask survivors about FCR and its impact. The discussion can foster education about actual risk and ways BCS could reduce their risk of recurrence.