What patients with advanced cancer experience as helpful in navigating their life with a long-term response: a qualitative study.

PURPOSE: Despite improved survival for people with advanced cancer due to new medical treatments, a growing group of long-term responders (LTRs) has to learn to live with uncertainties that affect several life domains. At the core of their experience, they neither feel like a patient nor feel healthy. Despite growing awareness of LTRs' experiences, learning more about how they cope with their long-term response can provide insight into how to best support them. Our study aimed to gain a deeper understanding what LTRs experience as helpful in navigating life with a long-term response. METHODS: We conducted an exploratory qualitative study using thematic data analysis. Semi-structured in-depth interviews were conducted with 17 participants with advanced melanoma or lung cancer with confirmed response or long-term stable disease while on immuno- or targeted therapy. RESULTS: LTRs reported several strategies to navigate life with a long-term response, for example, by involving the social environment, seeing uncertainty as an opportunity, and being present in the moment. This helped them to reclaim a sense of control, alter their perspective, and reshape their lives according to their values. CONCLUSION: Using different coping strategies enables LTRs to acknowledge both their sick and healthy side. Striking a healthy balance between being oriented on feeling sick or feeling healthy can help LTRs and their close others to navigate life with a long-term response. Healthcare professionals can provide support by recognizing whether LTRs are oriented at feeling sick or healthy, and by actively involving close others during medical appointments.

Living in the twilight zone: a qualitative study on the experiences of patients with advanced cancer obtaining long-term response to immunotherapy or targeted therapy.

PURPOSE: The introduction of immunotherapy and targeted therapy has drastically improved the life expectancy of patients with advanced cancer. Despite improved survival, obtaining long-term response can be highly distressing and comes with uncertainties that affect several life domains. The aim of this study is to gain a deeper understanding of long-term responders' lived experiences with obtaining long-term response to immunotherapy or targeted therapy. METHODS: We conducted an exploratory qualitative study using thematic data analysis. Semi-structured in-depth interviews were conducted with 17 patients with advanced melanoma or lung cancer who had a confirmed response to or long-term stable disease while on immunotherapy or targeted therapy. RESULTS: Long-term responders are living in a twilight zone, where they neither feel like a patient, nor feel healthy. This impacts their self-image, interactions with their social environment, and feelings of uncertainty. Due to their uncertain life perspective, long-term responders are going back and forth between hope and despair, while they are longing for their 'old' life, several barriers, such as protective behavior of the social environment, force them to adjust to a life with cancer. CONCLUSION: Long-term responders are facing many challenges, such as searching for a renewed identity, dealing with ongoing uncertainty, and having to adapt to a new normal. This emphasizes the importance of providing this new patient group with tailored information and support. IMPLICATIONS FOR CANCER SURVIVORS: Healthcare professionals can support patients by normalizing their feelings and providing space for varying emotions. Using patient-tailored scan frequencies could help temper fear of progression.