The Untold Story of Late Effects: A Qualitative Analysis of Breast Cancer Survivors’ Emotional Responses to Late Effects

Abstract Purpose Breast cancer survivors are at increased risk of adverse outcomes, called late effects, years after the completion of active treatment. Late effects can significantly impair physical functioning. The current study aimed to explore breast cancer survivors’ experiences, perceptions and concerns about late effects.Methods 36 women treated for breast cancer in the last 10 years participated in semi-structured telephone interviews. Participant views were sought with respect to knowledge, experience and perceived longer-term risk. A thematic analysis was conducted.Results Four themes emerged from the data: (1) late effects awareness, (2) framing and coping, (3) uncertainty and (4) management. There was a range of emotional responses to late effects however many participants reported being unaware of their risk of late effects. Participants conceptualised late effects as any long-term effect of treatment regardless of the time of onset. Women reported living with constant uncertainty and feared cancer recurrence. Many were focused on managing long-term treatment side effects, rather than late effects.Conclusion Many women undergo treatment and remain unaware of associated late effect risks. National guidelines recommend patients be informed about late effects however the results of this study suggest a gap between policy and practice. Evidence-based interventions are needed to equip women with strategies to physically and emotionally manage late effects.