Practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care

Abstract

This serves as a white paper by the North American Neuroendocrine Tumor Society (NANETS) on the practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care. The authors involved in the development of this manuscript represent a multidisciplinary team of patient advocacy, palliative care, and hospice care practitioners, endocrinologist, and oncologists who performed a literature review and provided expert opinion on a series of questions often asked by our patients and patient caregivers affected by this disease. We hope this document serves as a starting point for oncologists, palliative care teams, hospice medical teams, insurers, drug manufacturers, caregivers, and patients to have a frank, well-informed discussion of what a patient needs to maximize quality of life during routine, disease-directed care as well as at the end-of-life.

Critical updates in neuroendocrine tumors: Version 9 American Joint Committee on Cancer staging system for gastroenteropancreatic neuroendocrine tumors

“…12 These advances in imaging have also allowed the field to move away from the routine use of blood-based biomarkers, which often lead to heightened patient and physician anxiety and unnecessary medical interventions. 13 As such, the use of serum chromogranin A for the diagnosis and monitoring of NETs is not recommended in AJCC version 9. In addition, AJCC version 9 recognizes the increasing role of endoscopy and endoscopic resection in the diagnosis and management of NETs, particularly in the stomach, duodenum, and colorectum.…”

“…Importantly, they are also used to select patients for peptide receptor radionuclide therapy, one of the most effective systemic treatments for metastatic GEP‐NETs 12 . These advances in imaging have also allowed the field to move away from the routine use of blood‐based biomarkers, which often lead to heightened patient and physician anxiety and unnecessary medical interventions 13 . As such, the use of serum chromogranin A for the diagnosis and monitoring of NETs is not recommended in AJCC version 9.…”

AJCC Cancer Staging System Version 9: Practice-Informing Updates for Gastroenteropancreatic Neuroendocrine Tumors

“…2 Advances in diagnostic and therapeutic technologies, particularly molecular neuroendocrine tumor (NET) imaging evaluating somatostatin receptor (SSTR) status, have allowed the field to move away from the routine use of non-sensitive or specific blood-based biomarkers such as serum chromogranin A for diagnosis and monitoring. 3 Additionally, AJCC version 9 recognizes the increasing role of endoscopy and endoscopic resection in diagnosis and management, particularly for tumors involving the stomach, duodenum, and rectum. 4 The AJCC version 9 staging system currently recognizes T1NXM0 tumors in the stomach, duodenum/ampulla, and colorectum as stage I.…”