National Center for Advancing and Translational Sciences Genetic and Rare Diseases Information Center, a program of the National Center for Advancing and Translational Sciences

Carcinoid tumor


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A carcinoid tumor is a type of neuroendocrine tumor that usually develops in the digestive (GI) tract (such as the stomach or intestines) or in the lungs. In some cases, a carcinoid tumor develops in another part of the body, such as the pancreas, testicle (in men), or ovary (in women). It is a slow-growing tumor that typically does not cause symptoms in the early stages, so a person may have the tumor for years before being diagnosed. In later stages, symptoms may vary depending on where the tumor is located.[1][2][3] Symptoms of a GI carcinoid tumor may only develop if the tumor has spread to the liver. The tumor may produce hormone-like substances that spread to the body and cause symptoms of carcinoid syndrome, such as flushing of the face and chest, diarrhea, and trouble breathing. People with a lung carcinoid tumor are less likely to have carcinoid syndrome, but may experience coughing, wheezing, or pneumonia.[2] The tumor may also cause various symptoms if it has spread to other parts of the body.

The cause of carcinoid tumors is unknown, but certain unavoidable risk factors may increase a person's chance of developing a carcinoid tumor.[2] In general, cancer develops when a cell randomly develops mutations in its DNA.[4] Surgery to remove the tumor is the main treatment and can typically cure the tumor if it has not spread to other parts of the body.[1] Other treatment options may include radiation therapy, chemotherapy, and targeted therapy.[2]
Last updated: 2/13/2018
The cause of carcinoid tumors is currently unknown. There are some unavoidable risk factors that may increase a person's risk of developing the tumor. It is important to note that people with several risk factors may never develop cancer, while others with no risk factors may develop cancer. Possible risk factors for carcinoid tumors include:[2][5][6]
Last updated: 2/13/2018

The resources below provide information about treatment options for this condition. If you have questions about which treatment is right for you, talk to your healthcare professional.

Management Guidelines

  • The North American Neuroendocrine Tumor Society has published several consensus guidelines relating to the medical treatment and management of neuroendocrine tumors. Guidelines are developed pursuant to National Institute of Health (NIH) standards and serve as important references for practicing physicians.

FDA-Approved Treatments

The medication(s) listed below have been approved by the Food and Drug Administration (FDA) as orphan products for treatment of this condition. Learn more orphan products.

If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.

If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.

You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.

Healthcare Resources

  • The Neuroendocrine Tumor Research Foundation has a Doctor Database for help finding a physician specializing in treating neuroendocrine tumors. They also provide a link to a list of multidisciplinary diagnosis and treatment centers on the same web page.

Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.

Clinical Research Resources

  • ClinicalTrials.gov lists trials that are related to Carcinoid tumor. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.

    Please note: Studies listed on the ClinicalTrials.gov website are listed for informational purposes only; being listed does not reflect an endorsement by GARD or the NIH. We strongly recommend that you talk with a trusted healthcare provider before choosing to participate in any clinical study.
  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query".

General Clinical Trials & Research

  • The Neuroendocrine Tumor Research Foundation is a non-profit organization to support neuroendocrine tumor (NET) research. Their mission is to accelerate scientific discovery that will help create new and more effective therapies for NETs. Each year they seek and fund basic, translational and clinical research proposals with the potential to further understanding of NETs and accelerate the development of diagnostic and therapeutic interventions for patients.

Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

Organizations Supporting this Disease

Organizations Providing General Support

These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

Where to Start

  • The American Cancer Society provides detailed guides on lung and gastrointestinal carcinoid tumors. Click on the above links to access this information.
  • Cancer.Net, a resource from the American Society of Clinical Oncology, provides information about this condition.
  • The Carcinoid Cancer Foundation, Inc. has an information page on carcinoid tumors and related neuroendocrine tumors. Click on Carcinoid Cancer Foundation, Inc. to view the information page.
  • MedlinePlus was designed by the National Library of Medicine to help you research your health questions, and it provides more information about this topic.
  • The National Cancer Institute provides the most current information on cancer for patients, health professionals, and the general public.
  • The Neuroendocrine Tumor Research Foundation provides information about Carcinoid tumor.

In-Depth Information

  • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
  • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
  • PubMed is a searchable database of medical literature and lists journal articles that discuss Carcinoid tumor. Click on the link to view a sample search on this topic.

Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question

  • In 2010 my brother was diagnosed with a carcinoid tumor in the rectum. Does this genetically or otherwise pre-dispose me to a carcinoid tumor? See answer


  1. Carcinoid Tumors. MedlinePlus. May 24, 2016; https://medlineplus.gov/carcinoidtumors.html.
  2. Carcinoid Tumor. Cancer.Net, American Society of Clinical Oncology. August, 2016; https://www.cancer.net/cancer-types/carcinoid-tumor/introduction.
  3. Newly Diagnosed: The Basics. The Carcinoid Cancer Foundation. http://www.carcinoid.org/for-patients/diagnosis/newly-diagnosed-the-basics/. Accessed 2/13/2018.
  4. Carcinoid Tumors. Mayo Clinic. December 3, 2015; https://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/symptoms-causes/syc-20351039.
  5. What Are the Risk Factors for Gastrointestinal Carcinoid Tumors?. American Cancer Society. February 26, 2015; https://www.cancer.org/cancer/gastrointestinal-carcinoid-tumor/causes-risks-prevention/risk-factors.html.
  6. What Are the Risk Factors for Lung Carcinoid Tumors?. American Cancer Society. February 5, 2015; https://www.cancer.org/cancer/lung-carcinoid-tumor/causes-risks-prevention/risk-factors.html.