Abstract PS1-04-17: Real-world patient (pt) and caregiver experiences with breast cancer (BC) risk of recurrence (ROR) in the US: Results of an Online Survey and Social Media Analysis

Abstract Background: While most new HR+/HER2− BC cases are diagnosed (dx) as early BC (EBC), recurrences are an urgent concern as approximately 50% of recurrences occur in ≤5 years despite standard-of-care endocrine therapy and this risk can persist for decades after dx. Little has been published on the awareness and understanding of BC ROR from the pt and caregiver perspective and how this may influence shared decision-making and quality of life (QoL). Here, we present the results of an online survey of pts and subsequent social media analysis (SMA) of pts and caregivers including important insights on ROR. Methods: Female pts from France, Germany, Italy, the UK, and the US were invited to participate in a survey developed with input from medical experts and pt advocates on the Carenity platform, an online pt community, between Dec 1, 2021 and Jan 24, 2022; results from the US are presented. Additionally, deidentified data from publicly available posts by US pts and caregivers on social media sites, forums, and blogs between Apr 1, 2023 and Mar 31, 2025 were analyzed using the Sprinklr social media aggregator. Results: Of 220 US pts who responded to the Carenity survey, 57 (26%) reported being dx with HR+/HER2− BC, 39% with HER2+, and 22% with triple negative BC (TNBC). Among pts with HR+/HER2− BC, 38 pts (67%) were initially dx with EBC (stage I-III); of those, 11 pts (29%) recurred as metastatic BC (MBC). In the SMA, a screen of 3440 posts found 1622 relevant to EBC and ROR; 82% of conversations were driven by pts. In the Carenity survey, many pts initially dx with HR+/HER2− EBC wished they had received more relevant information on chances/duration of survival (32%) or emotional support options (26%) from their healthcare provider (HCP) at the time of dx, some of whom indicated they received no information at dx (chances/duration of survival: 22%; emotional support options: 67%). Many pts who reflected back on initial dx and wanted but had not received information on chances/duration of survival (75%) or emotional support options (40%) experienced a metastatic recurrence. This was reinforced by the SMA which identified recurrence rate and peer support as topics pts were seeking more information on. Posts related to ROR highlight pt and caregiver concerns about late recurrences, limited long-term monitoring, and persistent worries about unexpected recurrences. Pts also expressed feelings of being overwhelmed by the fear of BC recurrence. Within the Carenity survey, limiting risk of cancer metastasis and living as long as possible ranked high among treatment (tx) expectations. Similar themes emerged from the SMA, in which ROR was identified as one of the top aspects leading to positive perceptions of available tx. Surveyed pts with HR+/HER2− BC felt they had less access to services and support programs compared to pts with HER2+ or TNBC. In the SMA, pts discussed challenges and stressors associated with the lack of ROR knowledge within their support systems. Conclusions: Pts prioritize reducing ROR when ranking their tx options yet lack sufficient information and understanding about ROR. This is especially important for those with HR+/HER2− EBC whose risk includes early and late recurrence, a majority of which are metastatic recurrences. Conversations between HCPs and pts can be complex, further complicated by the number of HCPs communicating ROR to a single pt, varying degrees of pt health literacy, and impact to pt QoL. These analyses shed light on the need for greater knowledge and education about ROR, while also ensuring pts are offered support services to help address the impact of ROR on QoL for both pts and loved ones, from initial dx, throughout tx, and beyond. Citation Format: H. S. Rugo, M. Chase, M. Rutt, M. Smith, S. Weldon, E. Pain, G. Vadnerkar, T. Sen, S. Padhi, N. Nadimpalli, L. Santarsiero, C. Auld, N. Harbeck, A. B. Chagpar. Real-world patient (pt) and caregiver experiences with breast cancer (BC) risk of recurrence (ROR) in the US: Results of an Online Survey and Social Media Analysis [abstract]. In: Proceedings of the San Antonio Breast Cancer Symposium 2025; 2025 Dec 9-12; San Antonio, TX. Philadelphia (PA): AACR; Clin Cancer Res 2026;32(4 Suppl):Abstract nr PS1-04-17.