Neuroendocrine tumors (NETs) have a low incidence and a wide range of primary sites and manifestations of disease progression. As a result, they are often poorly understood by patients and, sometimes, even by other members of their medical team. Providing patients with trusted resources on their particular NET can help to improve their disease awareness and knowledge.

NETs are rare by incidence, and I think that there is less awareness of NETs among primary care physicians, general oncologists, and other specialists compared with other diseases. So, because there is less awareness and familiarity, when a patient gets diagnosed with NETs, their physician(s) are often unable to answer their questions because they may have only ever seen 1 patient with NETs previously, or they may have never seen a patient with NETs before. I have heard from many patients who say that they feel like they have to educate themselves and their physicians. That is a tough burden for patients to carry.

Given that delayed diagnoses or misdiagnoses are common among patients with NETs, many individuals may also have a mistrust of the medical system. I think that trust building for patients with rare cancers such as NETs is important but really hard work because they may be coming from a place where they have lost faith in the medical system.

When I first meet a patient with a NET, we usually start by talking about the nomenclature and terminology of NETs, educating them on the language so that they can understand what they are reading. We make sure that they know what the grade, differentiation, and Ki-67 are, and what it means to have functional or nonfunctional NETs. We also discuss how NETs can have heterogeneity based on where the cancer started, even within the same tumor grade.

Something that can be very confusing for both patients and even physicians is understanding primary sites for NETs and what it means when a patient has metastatic cancer vs a new, different cancer type. NETs can originate just about anywhere in the body, with the most common origins being in the small intestine, pancreas, and lungs, and they can also metastasize. Further, some patients may have a NET of unknown primary origin, which is a situation in which we may not know where the cancer originates, and that is also important to describe.

I give patients a list of trusted resources that I know will provide them with accurate information. A starting point is to tell patients that .edu and .gov websites tend to be high-quality, vetted resources. In addition, a lot of universities have websites for their cancer centers, and cancer.gov and ClinicalTrials.gov sometimes have information, although it may be harder to find information on rare cancers such as NETs. Cancer.Net is the American Society of Clinical Oncology patient-facing website, and it also has helpful patient-focused information.

NET professional societies and patient organizations have trustworthy resources for both physicians and patients, as well. For physicians, the North American Neuroendocrine Tumor Society website is a great resource for clinical information. For patients, the Neuroendocrine Tumor Research Foundation sponsors a number of virtual and in-person patient events. Further, the Learn Advocate Connect Neuroendocrine Tumor Society is a patient organization that produces a lot of wonderful patient-focused webinars, podcasts, and other educational content. Finally, the Carcinoid Cancer Foundation holds an ongoing virtual Luncheon with the Experts event; this organization also does a great job.