Multifaceted aspects of living with long-term metastatic breast cancer.

Abstract

362 Background: Metastatic breast cancer (MBC) has many ongoing physical, emotional, and information challenges, making supportive services a critical component of care. While many patients report favorable quality of life (QoL), their reflections on their cancer journey reveal nuanced experiences. Understanding patients’ perspectives provides valuable insight into improving education and supportive care delivery. Methods: Participants (n=241) were enrolled in the ‘Symptoms and Needs of Metastatic Breast Cancer Survivors’ study at The Ohio State University (OSU) between 2021-2024. Participants had been diagnosed with MBC for ≥1 year with any cancer subtype (ER/PR/HER2). Participants completed a one-time online survey, which assessed QoL, supportive care needs, and reflections on their cancer diagnosis and treatment. Participants were also asked two questions: “What do you know now about your cancer and/or your treatment that you wished you would have known earlier?” and “Is there anything else you would like to share regarding your journey?” Responses were analyzed using the OSU Medical Center protected version of Microsoft’s AI-powered assistant CoPilot to ensure data security. Study coordinators provided prompts, based on the Graneheim and Lundman approach, to completing an inductive qualitative content analysis. Results: Participants were on average age 60 (±12.7) and 5.3 (±4.8) years from their stage 4 diagnosis. QoL was reported as good (39%), very good (40%) or excellent (14%) by the majority of participants, while only 7% rated their QoL as fair. Three themes emerged from the reflection questions: 1) Reframing metastatic breast cancer as a chronic, not terminal illness; 2) Psychological and existential burden of living with uncertainty; and 3) Faith, meaning making and resilience. Participants frequently described a shift over time from viewing MBC as a terminal diagnosis to understanding it as a condition that could be managed long-term: “I enjoy every day and keep only those people in my life that bring me joy.” “MBC is not curable, but it is not an immediate death sentence either.” However, despite generally high QoL, many expressed ongoing emotional strain and uncertainty about disease progression and the future: “This is a draining diagnosis.” “Some days you forget you have it and other days it's all you can think of.” At the same time, respondents highlighted the importance of personal coping strategies, including faith, redefining priorities, and cultivating resilience, which supported adaptation and sustained well-being: “My faith is my rock.” “I feel blessed to have had the care and support that I have received.” Conclusions: Collectively, these narratives highlight both the enduring challenges and adaptive processes that characterize the lived experience of MBC survivors and their treatment journey. Strategies to optimize supportive services and the management of uncertainty are needed.