ABSTRACT
PURPOSE: Molecularly targeted therapies have revolutionized non-small cell lung cancer (NSCLC) treatment. Many patients with metastatic NSCLC receiving targeted therapy may live several years with incurable cancer. We sought to describe how these metastatic cancer survivors and their caregivers experience uncertainty about the future and identify their unmet supportive care needs. METHODS: We conducted semi-structured interviews with patients with metastatic NSCLC receiving targeted therapy (n = 39) and their caregivers (n = 16). We used a framework approach to code and analyze the qualitative data. RESULTS: Metastatic lung cancer survivors described awareness of their mortality and the possibility that their cancer could progress at any time. Though some found ways to cope, many felt inadequately supported to manage their distress, especially since they were "doing fine medically." Survivors struggled with decisions about working and managing their finances given their uncertain life expectancy and sought trustworthy lung cancer information in plain language. They wished to compare experiences with other patients with their molecular subtype of NSCLC. Participants desired comprehensive cancer care that includes psychosocial support, preparation for the future, and ways to promote their own health, such as through lifestyle changes. CONCLUSIONS: Patients with metastatic NSCLC receiving targeted therapy and their caregivers experience distress related to living with uncertainty and desire more coping support, connection with peers, information, and healthy lifestyle guidance. IMPLICATIONS FOR CANCER SURVIVORS: Patients living with treatable yet incurable cancer and their caregivers are a growing population of cancer survivors. Recognition of their unmet needs may inform the development of tailored support services to help them live well with cancer.