Understanding the Patient Journey in Extrapulmonary Neuroendocrine Carcinoma: A Podcast Manuscript

Extrapulmonary neuroendocrine carcinoma (epNEC) is a term that describes a group of rare, heterogeneous, and aggressive cancers. Because epNECs can have varying sites of origin, patients are often treated by a broad range of specialties, which can lead to challenges in diagnosis, referral, and prompt initiation of treatment. Furthermore, epNECs are often diagnosed when the disease is already metastatic. Currently, no treatments are specifically approved for epNEC and standard first-line treatment involves platinum-based chemotherapy. Cytotoxic chemotherapy and immunotherapy are often utilized for refractory disease but have limited benefits. Effective disease-specific treatments are needed. In this podcast, we discuss the patient journey associated with epNEC. We provide a brief introduction to the epidemiology and disease characteristics of epNEC, followed by discussions about diagnosis and treatment, highlighting challenges and unmet needs from the perspectives of a medical oncologist, patient, caregiver, and patient advocacy group founder. We also highlight the vital role played by patient advocacy groups in raising awareness, providing educational resources, and facilitating peer support. Overall, the journey for patients with epNEC could be improved by increasing awareness among healthcare providers, improving access to specialist centers, and developing novel targeted treatments.The podcast and transcript can be viewed below the abstract of the online version of the article. Alternatively, the podcast can be downloaded here: https://doi.org/10.6084/m9.figshare.34068396 . Supplementary file1 (MP4 431050 KB) Supplementary file2 (MP4 313150 KB).