“I’m Not Fighting Anymore So What Do I Do Now?” Young Women’s Challenges While Transitioning Out of Active Breast Cancer Treatment and into Survivorship

Abstract

Young women (18-45 years of age) with breast cancer often view the end of active treatment as a significant milestone. While completing treatment is largely celebrated, little is known about the immediate time after completing active treatment. The purpose of this qualitative, descriptive study was to explore the needs of young women survivors transitioning out of active breast cancer treatment and into survivorship. We used a qualitative design with convenience sampling of young women who completed active breast cancer treatment within the last 5 years to participate in semi-structured online focus groups from November 2020 to May 2021. Thematic analysis was used to reveal the needs as women transitioned out of active treatment and into survivorship. Thirty-three young women breast cancer survivors (75.8% White, 12.1% Black, 12.1% other) participated in 7 online focus groups each lasting approximately 90 min. Three dominant themes with accompanying subthemes emerged from the data: (1) “feeling like a different kind of woman” (physical [cognitive, weight, sexual] changes, emotional changes [defining normal, loss of purpose]); (2) lingering emotional trauma (active treatment, survivorship); and (3) recommendations (services needed, content needed). Participants in this study did not feel prepared for the physical and emotional changes associated with the transition from active treatment and into survivorship as identified in our 2 main themes of “feeling like a different kind of woman” and lingering emotional trauma. Participants recommended more thorough communication about expectations in survivorship focusing on physical aspects like cognitive, weight, and sexual changes as well emotional challenges like loss of identity in survivorship. More communication specific to young women could assist in the transition to survivorship.