Somatostatinoma: Causes, Symptoms, and Treatment

Medically reviewed by Harsha Moole, MD, Internal Medicine. Last reviewed: October 2, 2026.

What kind of doctor treats Somatostatinoma?

A primary care doctor usually starts by ordering early tests. If those tests point to a somatostatinoma, the patient is referred to a gastroenterologist and an endocrinologist. A surgeon often performs the operation, and cancer specialists may join the team if the tumor has spread.

What is a somatostatinoma?

A somatostatinoma is a rare tumor that forms in the pancreas or the upper small bowel. It makes too much of a hormone called somatostatin, a chemical messenger that slows down many other hormones in the body.

The pancreas is an organ behind the stomach that makes digestive juices and hormones. The duodenum is the first part of the small intestine. A somatostatinoma usually starts in one of these two places and belongs to a group of growths called neuroendocrine tumors. Most are cancerous, and many have already spread by the time they are found.

Symptoms

Somatostatin blocks other hormones, so too much of it causes problems with digestion and blood sugar. Common signs include diarrhea, greasy or floating stools, diabetes, gallstones, weight loss, and stomach pain. Symptoms often come on slowly, so the tumor may grow for years before anyone notices.

Causes and who gets it

Doctors do not fully know why these tumors form. Most happen by chance. A small number occur in people with a rare inherited condition called neurofibromatosis type 1. They tend to appear in middle-aged and older adults.

How doctors diagnose it

Diagnosis often happens by accident during tests for other problems. Doctors may use a CT scan or MRI, and blood or urine tests can show high levels of somatostatin. If a scan finds a growth, doctors take a biopsy to check whether the tumor is cancerous.

Treatment

Surgery is the main treatment. If the tumor has spread, doctors may add medicines that target the tumor cells or chemotherapy. The outlook depends on the tumor size, whether it has spread, and how early it is found.

When to see a doctor

Talk to a doctor if you have ongoing diarrhea, unexplained weight loss, new stomach pain, or blood sugar that stays high without a clear reason. These symptoms usually have common causes, but they deserve a checkup.

How a direct primary care or concierge doctor fits in

A direct primary care doctor charges a flat monthly fee instead of billing insurance, while a concierge doctor usually charges more and often works alongside insurance. Either one can order tests, track symptoms, coordinate care between specialists, and continue long-term follow-up after treatment.

Common questions

Is a somatostatinoma always cancer?

Not always. Some tumors stay in one place, while others can spread to the liver or nearby organs. Doctors check the tissue sample and scans to decide how to treat it.

Could my symptoms be something else?

Yes, very likely. Diarrhea, weight loss, and high blood sugar have many more common causes, such as infections, diet, or type 2 diabetes. Only testing can find the real reason.

How rare is this tumor?

It is one of the rarest neuroendocrine tumors, with only a few hundred cases described worldwide. That is why many doctors see only one case, if any, in their whole career.

Can it come back after surgery?

It can, which is why doctors recommend regular follow-up visits and scans after treatment. The chance of return depends on the tumor type and how complete the surgery was.

Sources

  1. NIH Genetic and Rare Diseases Information Center - Somatostatinoma
  2. NCBI Bookshelf - Somatostatinoma

Medical Disclaimer

This content is for general educational and informational purposes only and is not medical advice. It is not a substitute for professional medical advice, diagnosis, or treatment, and reading it does not create a doctor-patient relationship. Always seek the advice of your physician or another qualified health provider with any questions about a medical condition, and never disregard or delay seeking professional advice because of something you read here. If you think you may have a medical emergency, call 911 (or your local emergency number) immediately.