"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.

purposeMany people with breast cancer (PwBC) experience psychological distress, including fear of cancer recurrence (FCR). Clinical levels of FCR can negatively impact quality of life. While the FCR trajectory may vary according to age, stage at diagnosis, and imminent exams, FCR levels tend to remain relatively stable over time without intervention. Understanding FCR's impact and how PwBC cope with FCR can improve care. This study aimed to explore the nature of FCR and coping mechanisms by analyzing responses to open-ended survey questions from an FCR randomized controlled trial (RCT).

methodsThis qualitative study was part of a 3-arm RCT for PwBC (N = 390) reporting clinical FCR at eligibility screening. Enrolled PwBC completed a baseline survey, including three open-ended questions regarding FCR experiences. Following thematic analysis, responses were sorted by PwBC's baseline score on the 7-item Fear of Cancer Recurrence (FCR-7) scale, identifying trends by FCR level.

resultsN ≥ 347 PwBC completed the three open-ended survey questions. FCR impacted PwBC's lives across five key domains: emotional, behavioral, cognitive, relational, and professional life. Most identified at least one coping strategy, with strategies consistent across FCR-7 score levels. Higher FCR-7 scores were associated with listing more strategies, tending toward avoidant coping. PwBC sought strategies to improve their sense of purpose, belonging, and control.

conclusionThis study suggests many PwBC with clinical FCR are suffering without adequate means of coping. Clinicians should regularly discuss FCR with survivors. This discussion can foster education about actual risk and ways PwBC could reduce their risk of recurrence.