Living with Glucagonoma syndrome
A usually cancerous pancreas tumor that makes too much glucagon and can cause a skin rash, diarrhea, diabetes, and weight loss.
Understanding Glucagonoma syndrome
The tumor is a neuroendocrine tumor that starts in pancreatic alpha cells. It may be linked with a skin rash called necrolytic migratory erythema, diarrhea, diabetes, an inflamed tongue, weight loss, trouble absorbing nutrients, and anemia. It is usually noticed in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- A spreading skin rash (necrolytic migratory erythema)
- Diabetes
- Diarrhea
- Weight loss and poor appetite
- Inflamed tongue and mouth sores
- Anemia and fatigue
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.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Hormone specialists (endocrinologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 Pancreatica 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
GARD doesn't describe a cause for this condition yet. It describes a tumor that arises from the pancreas's alpha cells.
Also known as: glucagonoma; pancreatic glucagonoma
Patient organizations
- PancreaticaGlucagonoma syndrome · United States
- Pancreatic Cancer Action NetworkPancreatic tumors · United States
- American Cancer SocietyPancreatic tumors · United States
You are more than your diagnosis
Perspectives from people navigating life with Glucagonoma syndrome.
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