Navigating care: understanding cancer patients’ experiences with systemic radionuclide therapy

Neuroendocrine tumors (NETs) are widely considered to be a rare disease, often diagnosed at a late stage due to the variety of symptoms. Systemic radionuclide therapy (SRT) with Lutathera (177Lu-Dotatate) is a promising treatment for this disease. However, little is known about patients' experiences with this approach and the radioactivity involved. Based on seven semi-structured interviews, this qualitative study explores how cancer patients perceive their journey to SRT, and the treatment and care they receive in clinics specialized in the delivery of 177Lu-Dotatate to target tumors. The interviews were conducted in France between 2020 and 2021. Six interviews included patients receiving SRT, and one was held with a patient representative for NETs. Three key themes emerged from the analysis: challenges in accessing SRT, including geographic and institutional barriers; the psychological and social impact of radiation-related isolation; and the role of patient-centered care in fostering trust and well-being. Patients reported difficulties navigating the healthcare system, emotional distress due to isolation during treatment, and the importance of support in mitigating these challenges. These findings highlight the need for increased access to SRT, as well as of patient-centered approaches to the various challenges directly and indirectly associated with SRT.