Living with Neuroendocrine tumor of pancreas
A tumor, also called an islet cell tumor, that forms from hormone-making cells, usually in the pancreas.
Understanding Neuroendocrine tumor of pancreas
It arises from cells that make hormones, so the tumor can make hormones too. It may be benign (not cancerous) or malignant (cancerous). Functional tumors cause symptoms by making extra hormones, such as gastrin, insulin, or glucagon. Nonfunctional tumors generally don't cause specific symptoms at first but may later, based on their location and size. GARD lists onset in adulthood.
Signs & symptoms
GARD doesn't list a symptom list. Symptoms depend on the type of hormone made.
- Symptoms from extra hormones, depending on type
- Symptoms from tumor size and location
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists, digestive system specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Pancreas Foundation and Neuroendocrine Tumor Research Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: National Pancreas Foundation, Neuroendocrine Tumor Research Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with National Pancreas Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Most pancreatic NETs are not inherited and occur in people with no family history. About 10% are linked to a hereditary tumor syndrome such as multiple endocrine neoplasia type 1 (MEN1), which is autosomal dominant.
Also known as: islet cell tumor; islet cell tumors - pancreas; islet cell tumors of the pancreas; islet cell tumour; islet cell tumours - pancreas; islet cell tumours of the pancreas
Patient organizations
- National Pancreas FoundationNeuroendocrine tumor of pancreas · United States
- Neuroendocrine Tumor Research FoundationNeuroendocrine tumor of pancreas · United States
- Pancreatic Cancer Action NetworkNeuroendocrine tumor of pancreas · United States
- International Neuroendocrine Cancer AllianceNeuroendocrine tumor of pancreas · United States
- Neuroendocrine Cancer Awareness NetworkNeuroendocrine tumor of pancreas · United States
- PancreaticaNeuroendocrine tumor of pancreas · United States
- The Healing NET FoundationNeuroendocrine tumor of pancreas · United States
- American Cancer SocietyPancreatic tumors · United States
You are more than your diagnosis
Perspectives from people navigating life with Neuroendocrine tumor of pancreas.
Explore research for Neuroendocrine tumor of pancreas
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