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Recognizing and Treating Carcinoid Tumors

by Daniel Joo and Nancy Lindholm

Knowledge image

What is carcinoid?
Carcinoid cancer is the term used to refer to tumors that originate in the nerve cells that produce hormones, also known as the neuroendocrine system. About half of these rare tumors begin in the digestive system – the stomach, small intestine, appendix, colon, or rectum. They can also appear in the lungs or, less frequently, in other organs, such as the pancreas or ovaries.

Currently, between 11,000 and 12,000 carcinoid tumors are diagnosed each year in the United States, but the number has been increasing by about six percent each year. These tumors are slightly more common in women than in men.

What effect does it have on my body?
Carcinoid tumors and other neuroendocrine tumors grow slowly in comparison to other cancers and may go undetected for years. However, they can cause problems by producing excess hormone-like substances.

Sometimes carcinoid tumors can spread and release high levels of hormones, resulting in carcinoid syndrome. The symptoms of carcinoid syndrome vary depending on what hormones are being released into the bloodstream, but may include flushing of the skin on the face and chest, diarrhea, and wheezing and shortness of breath.

Author of Article photo

Nancy Lindholm

What are the symptoms?
The symptoms associated with many cancers can also be signs of other, less serious diseases. The same is true of carcinoid cancer. Symptoms include:

  • Diarrhea
  • Flushing of the skin
  • Arthritis
  • Asthma
  • Abdominal cramping
  • Niacin deficiency
  • Swelling of the feet and ankles
  • Wheezing

As with any cancer, early detection and treatment of carcinoid is important. Please make an appointment to see your doctor if you suspect you may have carcinoid or a related neuroendocrine tumor.

How do I know for sure if it’s carcinoid cancer?
Doctors diagnose carcinoid cancer by performing a complete physical exam and by analyzing the results of a series of tests. These tests include

  • Blood tests that measure serotonin or CgA, which are substances secreted by carcinoid tumors.
  • Urine tests that look for 5-HIAA, a byproduct of serotonin that is secreted in the urine. It is important to note that the absence of 5-HIAA in urine does not prove you don’t have carcinoid since localized gastrointestinal carcinoid tumors often do not have positive urine 5-HIAA results.
  • Imaging tests, such as a CT or PET scan or radioactive scans.
  • A biopsy, in which a small piece of tumor is examined under a microscope. This is the only definitive method of diagnosing carcinoid.

How is this disease treated?
An important part of cancer treatment is establishing an accurate diagnosis, including the size and location of the tumor, whether it has spread, whether you have any other serious medical conditions that will complicate your care, and whether the tumor is interfering with your quality of life. These factors will help your medical team decide the most appropriate treatment approach. Treatments may include, but are not limited to, the following:

  • Chemotherapy, which is the delivery of anticancer medications using pills, injections, or infusion into a vein, or chemoembolization, which is the injection of chemotherapeutic medications into the arteries that supply blood to a tumor.
  • Hepatic Artery Embolization, which is the injection of materials into the hepatic arteries, which supply blood to the liver metastases.
  • Interferon, which boosts the body’s immune response.
  • Radiation, which uses high energy beams to target cells. There are two types: External beam radiation therapy, which is machine-directed radiation to specific tumor locations and selective internal radiation therapy, which delivers millions of microscopic radioactive spheres directly to the tumor.
  • Radiofrequency Ablation, which is a minimally invasive surgical technique that destroys the tumor with a radiofrequency current.
  • Somatostatin Analogs, which inhibit the secretion of hormones.
  • Surgery, which removes or reduces the tumor to increase your comfort.

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This information is provided by the Caring For Carcinoid Foundation. Please visit caringforcarcinoid.org for additional information, patient support, a clinical trials database, and more.