Newly Diagnosed #1: The Basics

Carcinoid cancer and related neuroendocrine tumors (NETs) are small, often slow-growing tumors found mostly in the gastrointestinal system and the lung, 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.

Carcinoid tumors and other 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. Carcinoid 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 carcinoid tumors 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, carcinoid tumors 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 carcinoid 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. Carcinoid 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 Carcinoid Cancer written by Dr. Richard Warner. This document is a good place to start your research. This is a detailed description of the entire spectrum of carcinoid cancer (tumor) its diagnosis, treatments and prognosis. THERE IS HOPE. 

Spanish version of
"Review of Carcinoid Disease" by Richard R.P. Warner, MD
Un Análisis del Cáncer Carcinoide (version en espagñol)

What are Neuroendocrine tumors?
AGA Forum > Neuroendocrine tumors: timely diagnosis and optimal intervention
For a moderated panel discussion by US carcinoid/NET specialists.

    * NOTE: for more detailed description of the varous neuroendocrine tumors go to next page and view Information on Carcinoid and Related Neuroendocrine Tumors (These articles are somewhat technical)

Novartis Oncology online program for people with carcinoid cancer.   This program, Carcinoid Link, provides enrollees with a series of customized E-mails and online support resources to educate them about metastatic carcinoid cancer.  Immediately upon enrollment, participants will also receive an article about the importance of biochemical marker monitoring, including excerpts from an in-depth interview with carcinoid specialist Dr. Larry Kvols. Please click on the link below to learn more about Carcinoid Link and how to sign up online.  Please feel free to forward this link to all of your members so they can benefit from the program as well.

Additional resources and downloadable materials

    *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

    * Carcinoid Awareness Items; Zebra Pins, car magnets, stuffed zebra
      For more information, to view and how to purchase Click Here

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