Carcinoid cancer and related neuroendocrine tumors (NETs) are small, slow growing tumors found mostly in the lungs  and gastrointestinal system, but can be in other parts of the body such as the pancreas. Since most of these grow very slowly, compared to other cancers, it usually takes many years before they become sizable or cause symptoms.

NETs usually originate in hormone-producing cells that line the small intestine or other cells of the digestive tract. They can also occur in the pancreas, testes, ovaries, or lungs. Neuroendocrine tumors can produce an excess of hormonelike substances, such as serotonin, bradykinin, histamine, and prostaglandins. Excess levels of these substances can sometimes result in a diverse set of symptoms called carcinoid syndrome. Other NETs can produce other hormonal substances causing a variety of other syndromes.

When NETs occur in the digestive tract or pancreas, the substances they produce are released into a blood vessel that flows directly to the liver (portal vein), where enzymes destroy them. Therefore, NETs that originate in the digestive tract generally do not produce symptoms unless the tumors have spread to the liver. The hormones secreted by other NETs, particularly those in the pancreas, do not necessarily require spread to the liver to cause symptoms.

When neuroendocrine tumors have spread to the liver, the liver is unable to process the substances before they begin circulating throughout the body. Depending on which substances are being released by the tumors, the person will have the various symptoms of carcinoid syndrome, insulinoma syndrome, Zollinger Ellison syndrome, VIPoma syndrome, etc. Neuroendocrine tumors of the lungs, testes, and ovaries also cause symptoms without having spread, because the substances they produce bypass the liver and can sometimes circulate widely in the bloodstream.

A good place to start:

A Review of Neuroendocrine Cancer This document is a good place to start your research. This is a detailed description of the entire spectrum of neuroendocrine cancer (tumor) its diagnosis, treatments and prognosis. THERE IS HOPE.

Spanish version of
“Review of Neuroendocrine Cancer”
Un Análisis del Cáncer Neuroendocrine (version en español)

What are neuroendocrine tumors?
For detailed descriptions of the various neuroendocrine tumors view Information on Carcinoid and Related Neuroendocrine Tumors (These articles are somewhat technical)

Did You Know (a one-page fact sheet about neuroendocrine tumors, please print and share)

Guide to Understanding Carcinoid Syndrome, know the signs and learn more about treatment options, patients share their experiences with carcinoid syndrome

Novartis Oncology is an online program for people with neuroendocrine cancer that has additional resources and downloadable materials.

Excellent infographic from Ipsen about gastroenteropancreatic tumors, GEP-NETs, click hereIPSEN Cares is a program that provides information about IPSEN Coverage, Access, Reimbursement & Education Support. Click here for more information.

Carcinoid Heart Disease (patient story)
Double Trouble — Patient’s rare cancer causes heart valve damage
This site (the “Service”) is an online information and communications service provided by Mayo Foundation for Medical Education and Research.

For additional information about carcinoid cancer and other neuroendocrine tumors, please continue on to Newly Diagnosed 2.


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