By Anna C. Greene, PhD, NETRF Chief Scientific Officer
Same organ, different disease
Words matter in cancer, especially when the name of an organ becomes shorthand for a disease.
Organ-based descriptions can be useful for saying where a cancer began, but they do not always tell us what kind of cancer it is. For rarer cancers that arise in the same organ as a much more common cancer, that shorthand can be misleading and, in some cases, harmful. Pancreatic neuroendocrine tumors are a clear example.
A pancreatic neuroendocrine tumor, or PanNET, begins in the pancreas. But it is not a form of pancreatic ductal adenocarcinoma, or PDAC, the disease most people mean when they use the term “pancreatic cancer.” It is a different type of cancer altogether.
Calling a PanNET simply “pancreatic cancer” can direct patients toward information about a disease they do not have, including different survival statistics, treatment approaches, expectations, specialists, and research. That is why precision here is not semantic. It can affect what happens after diagnosis.
PanNETs arise from neuroendocrine cells, whereas PDAC arises from cells of the exocrine pancreas. They have different biology, classification, patterns of disease, and treatment approaches.
The organ tells us where the tumor started. The cell tells us what it is.
Getting the diagnosis right should help lead patients to the right expertise, the right community, and research focused on their disease.
Find a NET specialist
One of the most important things a person with a PanNET can do is make sure a neuroendocrine tumor expert is involved in their care.
PanNETs require specialized expertise across pathology, imaging, surgery, nuclear medicine, systemic therapy, management of hormone-related symptoms, and long-term disease management. Depending on the individual tumor and patient, treatment may include somatostatin analogs, peptide receptor radionuclide therapy (PRRT), targeted therapies, NET-specific chemotherapy regimens, surgery, liver-directed treatments, or, in some circumstances, observation.
That is why people with PanNETs should seek care from, or at minimum consult with, a multidisciplinary team experienced in neuroendocrine tumors. A NET specialist can work with a patient’s local oncologist and other physicians, but neuroendocrine expertise should be part of the conversation.
Understanding that a PanNET is a neuroendocrine cancer helps patients ask an essential question: Is there a NET expert on my team?
NETRF’s Find a Specialist resource can help patients identify NET specialists and multidisciplinary programs.
Find your community
A PanNET diagnosis can also be isolating.
Many people have never heard of a neuroendocrine tumor. When patients tell others that they have cancer in the pancreas, people may assume they mean pancreatic adenocarcinoma. Patients can then find themselves repeatedly explaining why their cancer, treatment, prognosis, or disease course may look very different.
Finding the neuroendocrine cancer community can make a meaningful difference.
Other people living with NETs understand the unfamiliar terminology, repeated scans, treatment decisions, uncertainty, and, for some, the experience of living with cancer over many years. That shared understanding can provide important practical, social, and emotional support.
NETRF helps patients and caregivers connect with that community through education and resources designed specifically for people with NETs.
Know Your NETs 2026, our annual patient and caregiver education conference, is available to watch on YouTube. The program brings together NET experts, patients, and caregivers to discuss the latest science and treatments, treatment decision-making, and the practical realities of living with neuroendocrine cancer.
Our NETWise podcast provides another way to hear directly from NET experts and patient voices. NETWise Episode 10: Pancreatic NETs focuses specifically on PanNETs.
Understanding the exact diagnosis does more than point patients toward the right medical information. It can help them find people who understand the disease they are living with.
PanNETs require dedicated research funding
Disease identity is critical to research.
PDAC and PanNET research ask different scientific questions. They require different disease models, biomarkers, therapeutic targets, clinical trials, and expertise.
Yet broad organ-based research categories can make it difficult to see how much attention is being directed specifically toward PanNETs. NIH, for example, reports “Pancreatic Cancer” as a research spending category but does not provide a corresponding PanNET-specific category.
That makes it difficult to determine how much federal investment is actually supporting research focused specifically on PanNET biology and treatment.
For a relatively small research field, that visibility matters. Researchers, patients, advocates, and funders need to be able to see what is being studied, where the gaps remain, and which questions need greater investment. This is why dedicated neuroendocrine cancer research funding is so important. NETRF is the largest global funder dedicated specifically to neuroendocrine cancer research. We support research across neuroendocrine cancers, including studies focused on PanNET biology, progression, classification, and treatment. That disease-specific focus allows PanNET research to be visible as PanNET research. It also helps build the field by attracting investigators, supporting new ideas, developing research models and tools, and fostering collaboration among scientists committed to understanding neuroendocrine cancer. When the disease is defined precisely, the research questions can be defined precisely too.
Call it by its name
A PanNET begins in the pancreas. Its scientific and clinical identity is neuroendocrine.
Recognizing that distinction helps patients understand the cancer they actually have. It helps them find a NET specialist and multidisciplinary team. It connects them with a community that understands their experience. And it makes the research needs of PanNETs visible.
That’s why it’s important to refer to PanNETs as a neuroendocrine cancer.
Knowing the difference can help lead patients to the right care, the right community, and research focused on the cancer they actually have.
Note: This article uses well-differentiated pancreatic neuroendocrine tumors as an illustrative example, but similar issues can arise with neuroendocrine neoplasms in other organs, including the lung and stomach. In each case, the organ of origin is only part of the diagnosis; the neuroendocrine identity of the tumor also matters. Within the pancreas itself, neuroendocrine neoplasms are not all the same. This article focuses on well-differentiated PanNETs. Poorly differentiated pancreatic neuroendocrine carcinomas, or pancreatic NECs, are also neuroendocrine cancers, but they represent a distinct diagnosis with different biology and treatment considerations.
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Explore our Patient Knowledge Center for additional information and resources for people living with neuroendocrine cancer and their caregivers. Learn more about the science NETRF supports by exploring our Research Portfolio.