Purpose: This qualitative phenomenological study explored the lived experiences of breast cancer patients and caregivers in navigating cancer-related information.
Methods: Semi-structured interviews were conducted with 16 participants (13 patients, 3 caregivers), most of whom were female (n = 13), highly educated, and reported strong digital and health literacy. Participants' ages ranged from 36 to 71 (M = 52). The majority were navigating invasive breast cancer, with a smaller number diagnosed with ductal carcinoma in situ. Interviews focused on participants' experiences with information access, evaluation, and use across the cancer journey. Data were analyzed thematically.
Results: Despite high education levels, participants described feeling unprepared and overwhelmed by the amount and complexity of cancer information at diagnosis. Three themes emerged: (1) Tension Between Physician Guidance and Patient Autonomy, highlighting mixed feelings about clinicians' discouragement of independent research; (2) Information Overload and the Need for Timely, Personalized Communication, with a preference for specific guidance over large volumes of information; and (3) Unmet Needs for Tailored, Inclusive, and Accessible Support, as participants, especially male and racialized individuals, struggled to find information and peer support reflecting their identities and experiences.
Conclusion: Findings reveal persistent information gaps underscoring the emotional and cognitive burdens of breast cancer information seeking.
Keywords: Breast cancer; Health information; Information seeking; Neoplasm; Patient education; Self-care.
© 2026. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.