Lessons from the margins: Narratives of black men living beyond prostate cancer

Although research on prostate cancer survivorship has grown, limited studies focus specifically on the lived experiences of Black prostate cancer survivors and how they navigate survivorship. This study explores how Black survivors describe their post-treatment experiences and examines how sharing these narratives may inform, support, and empower other Black men.

We conducted semi-structured interviews via phone and Zoom with 22 Black prostate cancer survivors who had completed treatment five to ten years post-diagnosis. Using a constructivist grounded theory approach, we identified emergent themes related to survivorship, self-advocacy, and information sharing. The study adhered to the Big Q Qualitative Reporting Guidelines (BQQRG) developed by Braun and Clarke.

Participants (n = 22) described a strong emphasis on self-directed health education, treatment adherence, and advocacy for early detection. Understanding personal and family health history was viewed as essential for effective communication with providers and informed decision-making. Survivors also stressed the importance of engaging Black youth and families through relevant education initatives to address differences in prostate cancer awareness.

Findings highlight the value of self-directed learning, patient-provider communication, and family health history awareness in supporting survivors among Black men. These narratives suggest that integrating survivor-led education and community-driven approaches may help reduce health differences and strengthen survivorship care pathways for Black men. This may also foster peer-to-peer learning, improve access to relevant health information, and strengthen trust within healthcare systems. Understanding survivors' perspectives on communication, advocacy, and support can inform interventions that enhance survivorship care and promote equitable health outcomes.