“Every day is just kind of weighing my options.” Perspectives of young adult cancer survivors dealing with the uncertainty of the COVID-19 global pandemic

PURPOSE: We explored adolescent and young adult cancer survivor (AYA) experiences with COVID-19 to understand the impact of living through a pandemic, unmet needs, and coping strategies. METHODS: AYAs were recruited nationally, completed an online survey, and attended one of six online focus groups. We used qualitative content analysis to analyze focus group data. RESULTS: Thirty-nine AYAs completed the survey, and 24 also participated in the focus groups. In the survey, AYAs responded that COVID-19 increased anxiety about their health or their family’s health, feelings of isolation, and worries about job security. Overarching focus group themes included AYA behavioral responses to the pandemic similar to their peers, the added burden of cancer, and unexpected advantages of a cancer history. When discussing the added burden of cancer, subthemes included difficulties and delays in medical care, mental health stressors, and compounding uncertainty. Unexpected advantages of a cancer history included relying on coping strategies developed during active treatment and resiliency from practicing social distancing during treatment. CONCLUSIONS: AYAs have struggled in the early pandemic in ways similar to their peers but with compounding uncertainty regarding their unknown risk due to cancer history. Healthcare providers and systems can better support AYAs by providing additional psychosocial supports, developing strategies to triage good candidates for telehealth, and providing information about cancer survivor-specific risks for COVID-19. IMPLICATIONS FOR CANCER SURVIVORS: Our findings indicate a need for psychosocial supports that address managing anxiety and uncertainty. AYAs may be able to draw on their cancer experiences to navigate the COVID-19 pandemic. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11764-021-01069-9.