1. One Tumor Produces Many Symptoms
A somatostatinoma is a cancerous tumor that usually grows on the pancreas or the small intestine. It produces large amounts of a natural chemical known as somatostatin. This chemical acts as a neurotransmitter and slows down certain actions in the body. When somatostatin levels in the blood become too high, a number of symptoms can occur, including gallbladder disease, diabetes mellitus, diarrhea and fat in the feces, low levels of hydrochloric acid in the stomach, and weight loss. Somatostatinomas are very uncommon--each year, about one in 40 million people are diagnosed with one. For this reason, they are often found by accident during a cholecystectomy--the removal of the gallbladder--or during an endoscopy, which is sometimes performed because of unexplained symptoms.
2. The Pancreas is Worse
By the time a somatostatinoma is discovered, it has usually spread, or metastatized, to the liver. On average, about eight in 10 of these tumors have already metastasized if they are on the pancreas, and about six in 10 have metastasized if they occur on the small intestine. Symptoms are usually more severe and occur more frequently when the somatostatinoma is growing on the pancreas.
3. There Are Effective Treatments
Although the diagnosis of a somatostatinoma is not a good one, physicians have had some success in treating them. Both oncologists and endocrinologists are usually involved in the treatment of a somatostatinoma. Four in 10 people who are diagnosed with a somatostatinoma will die one week to 14 months after the diagnosis, but six in 10 are alive six months to five years after the tumor is found. If the tumor has not spread to the liver, it can often be surgically removed. Because this type of tumor is so rare, there have not been a lot of clinical trials that have looked at treatment. However, if the tumor has spread, physicians have had success with a drug known as octreotide or with combinations of chemotherapeutic drugs. In addition to treating the tumor, your physician may prescribe medications to treat symptoms of the disease. For example, people whose bodies have stopped producing enough insulin because of the tumor might receive insulin, and other people might require a product to treat digestive symptoms like diarrhea. When a person with somatostatinoma syndrome is losing a lot of weight, this also has to be addressed through fluid replacement and nutrition.
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