Living Flat: Stories from Women of Color After Mastectomy.

Abstract

There remain persistent racial and ethnic disparities in the receipt of post-mastectomy breast reconstruction for breast cancer. Yet, patient-reported outcomes and advocacy efforts around living flat overwhelmingly have focused on white women. We sought to characterize the lived experiences among women of color living flat after mastectomy for breast cancer. Our community-partnered study included a sociodemographic and health questionnaire followed by semistructured interviews. Using an interview guide designed in an interdisciplinary manner, we explored themes related to culture and community after mastectomy. Women ≥ 18 years old who underwent mastectomy without reconstruction for breast cancer were included. Interviews were performed by formally trained community-based research fellows and conducted virtually over video conferencing, recorded, and transcribed. Data were analyzed on NVivo using an integrated (inductive and deductive) team-based approach. The final cohort included 20 women, 60% identified as Black, 20% as Asian, 10% as multiracial, 5% as Latina, and 5% as white. Key concepts included: (a) cancer stigma, (b) privacy around breasts, (c) finding support through shared experiences, (d) sacrifice of breast for life/health, (e) spirituality, (f) patients' familial roles and relationship to breast, and (g) societal expectations. Women described the intersection of cancer stigma and privacy around breasts influencing knowledge of family history and support during cancer treatment. Among women of color, breast cancer stigma and spirituality are key contributors to quality of life after mastectomy without breast reconstruction, domains not routinely included in contemporary patient-reported outcome measures. Representation of diverse experiences is critical to achieving equity.