123 Real-World Patient and Caregiver Experiences With Breast Cancer (BC) Risk of Recurrence (ROR) in the US: Results of an Online Survey and Social Media Analysis

Background

Most hormone receptor–positive (HR+)/HER2-negative (HER2–) breast cancer cases are diagnosed as early breast cancer,and recurrences are an urgent concern. Little has been published on awareness and understanding of risk of recurrence (ROR) from the patient and caregiver perspective. We present results of an online survey of patients and subsequent social media analysis (SMA) of patients and caregivers including important insights on ROR.

Methods

Female patients were invited to participate in a survey on the Carenity platform; results from the US are presented. Deidentified data from publicly available posts by US patients and caregivers on social media sites, forums, and blogs were analyzed.

Results

Of 220 US patients who responded to the Carenity survey, 57 (26%) reported being diagnosed with HR+/HER2− breast cancer. Among patients with HR+/HER2− breast cancer 38 patients (67%) were initially diagnosed with early breast cancer (stage I-III); of those, 11 patients (29%) recurred as metastatic breast cancer. In the SMA, a screen of 3440 posts found 1622 relevant to early breast cancer and ROR; 82% by patients.

In the survey, many patients initially diagnosed with HR+/HER2− early breast cancer wished they received more information on chances/duration of survival (32%) or emotional support options (26%) at diagnosis, some of whom received no information (chances/duration of survival: 22%; emotional support options: 67%). Many patients who reflected on diagnosis and wanted but had not received information on chances/duration of survival (75%) or emotional support options (40%) experienced metastatic recurrence. This was reinforced by the SMA.

Posts related to ROR highlight patient and caregiver concerns about late recurrences, limited long-term monitoring, unexpected recurrences, and fear of recurrence.

Within the survey, limiting risk of cancer metastasis and living as long as possible ranked high among treatment expectations. Reduced ROR was identified as one of the top aspects leading to positive perceptions of treatments in the SMA.

Surveyed patients with HR+/HER2− breast cancer felt they had less access to services and support programs compared to patients with HER2+/triple-negative breast cancer. In the SMA, patients discussed challenges and stressors associated with the lack of ROR knowledge within support systems.

Conclusions

Patients prioritize reducing ROR when ranking treatment options yet lack sufficient information and understanding about ROR. These analyses shed light on the need for greater knowledge and education about ROR, while also ensuring patients are offered support services.

Previously presented at 2025 San Antonio Breast Cancer Symposium (SABCS): Rugo, H, et al. December 9-12, 2025; San Antonio, TX. Poster PS1-04-17. Reused with permission.