Living with Pancreatic insulin-producing neuroendocrine tumor
A rare tumor in the pancreas that makes too much insulin, causing low blood sugar.
Understanding Pancreatic insulin-producing neuroendocrine tumor
The tumor makes too much insulin, which lowers blood sugar. About 90 percent of insulinomas are benign (not cancer). It can occur at any age. People with certain genetic syndromes, such as multiple endocrine neoplasia type 1 or von Hippel-Lindau syndrome, are at higher risk.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Sweating
- Pounding heartbeat (palpitations)
- Tremor
- Hunger and weight gain
- Confusion or changes in awareness
- Seizures
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 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
- 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
In most cases, GARD says the cause is unknown. People with some genetic syndromes, such as multiple endocrine neoplasia type 1, are at higher risk.
Also known as: beta cell neoplasm; beta cell tumor; beta cell tumor of pancreas; beta cell tumor of the pancreas; beta cell tumour; beta cell tumour of pancreas
Patient organizations
- National Pancreas FoundationPancreatic insulin-producing neuroendocrine tumor · United States
- Pancreatic Cancer Action NetworkPancreatic insulin-producing neuroendocrine tumor · United States
- PancreaticaPancreatic insulin-producing neuroendocrine tumor · United States
- American Cancer SocietyPancreatic tumors · United States
You are more than your diagnosis
Perspectives from people navigating life with Pancreatic insulin-producing neuroendocrine tumor.
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- Recruiting studies from ClinicalTrials.gov
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