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

Abstract

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.

Harmful communication behaviors in cancer care: A systematic review of patients and family caregivers perspectives

“…” 22 ). Continuous support may become more challenging in the future as more people with cancer live longer 116 due to improved (experimental) treatment (which also increases mental burden 117 ), expected decrease of clinicians 118 and increased use of digitalized healthcare systems 119 . Future research should focus on how to tackle this challenge, while still providing the best continuous support for patients and their family caregivers.…”

Evolving Landscape of Metastatic Cancer Survivorship: Reconsidering Clinical Care, Policy, and Research Priorities for the Modern Era

“…21 However, managing immunotherapy 5,6,[22][23][24] and targeted therapy-related toxicities pose some unique challenges, 25,26 together with managing uncertainty and fear of cancer progression in the setting of newer treatment approaches. 5,6,25,27,28 Unmet financial planning needs were also reported (eg, potential need to self-fund therapy, 5,6,29 returning to work, 6 and accessing disability support 30 ).…”

“…Despite therapeutic advances, most will eventually require end-of-life care. 28,37 People with metastatic cancer should be provided with tailored, realistic prognostic information to set accurate expectations [38][39][40] and facilitate informed decision making (eg, financial planning or return to work). When discussing prognosis and goals of care, clinicians should follow existing guidelines.…”

Managing cancer and living meaningfully (CALM): Implementation in Dutch cancer care

“…This shortage may grow, as the responsiveness of advanced disease to immunotherapy and targeted therapies has increased the numbers of patients living with advanced disease who may benefit from or require psychological support. These patients have reported the feeling of living in a twilight zone, oscillating between hope and despair, and struggling to adapt to a life with cancer 9 …”

“…These patients have reported the feeling of living in a twilight zone, oscillating between hope and despair, and struggling to adapt to a life with cancer. 9 Managing Cancer and Living Meaningfully (CALM), is a brief supportive-expressive psychotherapy designed to alleviate distress and improve the psychological wellbeing of individuals with advanced cancer. 8,10 It addresses four interrelated domains: (1) symptom management and communication with healthcare providers, (2) changes in self and relationships with close others, (3) sustaining a sense of meaning and purpose, (4) the future, hope and mortality.…”