Living with Somatostatinoma
A rare tumor of hormone-making cells, found mostly in the pancreas or small intestine, that causes digestive symptoms and weight loss.
Understanding Somatostatinoma
The tumor grows from delta cells. About 60 percent are found in the pancreas and 40 percent in the duodenum or jejunum (parts of the small intestine). Too much somatostatin can cause diarrhea, fatty stools, weight loss and low stomach acid. It usually appears between ages 40 and 60, and women are affected about twice as often as men.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Diarrhea
- Fat in the stool (steatorrhea)
- Weight loss
- Belly pain that comes and goes
- Nausea and vomiting
- Diabetes
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 Pancreatic Cancer Action Network 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 says the tumor arises from delta cells and makes too much somatostatin. It doesn't list a gene.
Also known as: delta cell tumor; delta cell tumour; somatostatin cell neoplasm; somatostatin cell tumor; somatostatin cell tumour; somatostatin producing tumor
Patient organizations
- Pancreatic Cancer Action NetworkSomatostatinoma · United States
- American Cancer SocietyPancreatic tumors · United States
You are more than your diagnosis
Perspectives from people navigating life with Somatostatinoma.
Explore research for Somatostatinoma
Explore actively recruiting Somatostatinoma studies with HealthSpark.
Find actively recruiting studies for Somatostatinoma with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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