Navigating Neuroendocrine Tumors: New NCCN Guidelines for Patients

The National Comprehensive Cancer Network® (NCCN®) has published a brand new NCCN Guidelines for Patients focused on neuroendocrine tumor (NET).  These new guidelines offer up-to-date information to help patients and caregivers make knowledgeable medical decisions. The Neuroendocrine Tumor Research Foundation (NETRF) endorses the NCCN Guidelines for Patients: NET.

“These patient-centered guidelines help fill an important information gap,” said NETRF Chief Executive Officer Elyse Gellerman. “NETRF-funded patient surveys showed that 84 percent of patients’ information needs were not met at diagnosis. This publication helps give patients and families  access to reliable, accurate, up-to-date information.”

Woman reads laptop looking seriously

As with all NCCN patient guidelines, the information is based on the evidence and expert-consensus available in the clinical practice guidelines created by NCCN’s multidisciplinary panels from 27 leading academic cancer centers throughout the United States. The treatment recommendations are presented in user-friendly terms, complete with glossary, illustrations, and space for notes. The guidelines are intended to empower patients while also safeguarding them from misinformation.

“When people with neuroendocrine tumors seek information on what to expect, they often find a lot of confusing advice online,” explained Whitney S. Goldner, MD, Fred & Pamela Buffett Cancer Center, Vice-Chair of the NCCN Guidelines Panel for Neuroendocrine and Adrenal Tumors. “They might even know someone with a NET, but in a different location, leading them to expect symptoms and treatment courses that won’t apply to their circumstances.”

The most common types of NETs are found in the lung, airways, small intestine, rectum, appendix, and thymus. Another common type is found in the pancreas. In some locations, NETs can cause hormones to be released into the blood system.

“It really takes a multidisciplinary team to treat these tumors,” Dr. Goldner continued. “Everybody plays a different role in the care of NETs, including endocrinologists, medical oncologists, surgical oncologists, radiation oncologists and sometimes nuclear medicine radiologists. These guidelines help prepare patients for the group of people who will comprise their treatment team, and ensure they understand the need for specific testing and therapies for their tumor.”

While neuroendocrine tumors often occur in patients without any risk factors, there are some that result from hereditary, genetic syndromes. Awareness of NETs has increased over the past decade, helping doctors to correctly diagnose it more quickly. Advances in imaging have also led to more targeted therapies.

The NCCN Guidelines for Patients are available free-of-charge online at, or via the NCCN Patient Guides for Cancer app. Printed versions can be purchased at for a small fee.