Real-world impact of breast cancer recurrence: Understanding patient and caregiver perspectives in the United States through social media analysis.

e23277 Background: There is limited published evidence on the experiences of patients and caregivers in the USA related to early breast cancer (eBC) risk of recurrence (RoR). This analysis aimed to gain insight on patient and caregiver awareness of RoR, discussions with healthcare professionals (HCPs) about RoR, and its impact on treatment decisions and quality of life (QoL). Methods: Using Sprinklr, a social media data aggregator, de-identified data from publicly available posts between Nov 2023 and Oct 2024 from social media sites, forums, and blogs were analyzed. Results: From 2,201 posts screened, 828 were relevant to eBC and RoR. Patients contributed 697 posts (84%), caregivers 131 (16%). Patient age, mentioned in 189 posts, ranged from 20 to 80 yrs. Of 490 posts on phases of eBC experience, 32% were post-breast cancer surgery, 17% in remission, and 16% progressed to distant recurrence. Of 349 posts on cancer subtype, 42% were HR+/HER2−. Discussions with HCPs helped in understanding cumulative lifetime RoR, yet some patients felt RoR was understated and/or downplayed by oncologists, prompting them to seek validation and information online. Discordant information related to RoR caused distress among patients and caregivers, including confusion when tumor is upstaged or “cure” is communicated or perceived, concern about risk mitigation when testing suggests low to no benefit from chemotherapy, and shock of distant recurrence despite eBC standard of care. Patients expressed the need for more open dialogue with HCPs about RoR, as this impacts decisions related to treatment and survivorship. They also highlighted that ancillary supporters are often unaware of and can dismiss long-term RoR, leading to additional stress for the patient. Patients and caregivers discussed various risk reduction strategies, including therapies and lifestyle modifications. Patients had a largely positive perception of hormone therapy and mixed opinions on chemotherapy, but concerns about side effects led to some negative perceptions of both treatments. Other risk reducing therapies were discussed (e.g., CDK4/6i, PARPi) but much less frequently. QoL discussions (142 posts) highlighted emotional (96%: fear, sadness, anger), physical (6%: pain, fatigue, swelling), social (1%: strained relationships), and financial (1%: treatment cost) impact. Fear of recurrence (local and distant) was a major QoL disruptor, causing anxiety, sleep issues, and depression for patients and caregivers (106 posts). Conclusions: RoR substantially impacts eBC patient and caregiver QoL. Emotional distress, understated RoR and lack of RoR awareness along the care continuum underscore the need for more open and informative HCP-patient communication about short- and long-term RoR to provide better balance between fear and empowerment. This can help lead to more informed decision-making and improved QoL.