Rare Endocrinology News
Disease Profile
Carcinoid tumor
Prevalence estimates on Rare Medical Network websites are calculated based on data available from numerous sources, including US and European government statistics, the NIH, Orphanet, and published epidemiologic studies. Rare disease population data is recognized to be highly variable, and based on a wide variety of source data and methodologies, so the prevalence data on this site should be assumed to be estimated and cannot be considered to be absolutely correct.
Unknown
Age of onset
Adult
ICD-10
-
Inheritance
Autosomal dominant A pathogenic variant in only one gene copy in each cell is sufficient to cause an autosomal dominant disease.
Autosomal recessive Pathogenic variants in both copies of each gene of the chromosome are needed to cause an autosomal recessive disease and observe the mutant phenotype.
X-linked
dominant X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.
dominant X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.
X-linked
recessive Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder.
recessive Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder.
Mitochondrial or multigenic Mitochondrial genetic disorders can be caused by changes (mutations) in either the mitochondrial DNA or nuclear DNA that lead to dysfunction of the mitochondria and inadequate production of energy.
Multigenic or multifactor Inheritance involving many factors, of which at least one is genetic but none is of overwhelming importance, as in the causation of a disease by multiple genetic and environmental factors.
Not applicable
Categories
Rare Cancers
Summary
A carcinoid
The cause of carcinoid tumors is unknown, but certain unavoidable
Cause
Family history of multiple endocrine neoplasia type 1 (MEN1). About 10% of gastrointestinal (GI) carcinoid tumors are thought to be associated with MEN1.- Family history of neurofibromatosis type 1 (NF1).
- Family history of other genetic
syndromes such as tuberous sclerosis complex and von Hippel Lindau disease. - Other stomach conditions. People with diseases that damage the stomach and reduce stomach acid levels (in particular, pernicious anemia) have a greater risk of developing stomach carcinoid tumors.
Race and gender. GI carcinoid tumors are more common among African Americans than among white people, and slightly more common among women than men. Lung carcinoid tumors are more common among white people than among people of other ethnicities.
Treatment
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.
- Everolimus(Brand name: Afinitor) Manufactured by Novartis Pharmaceuticals Corporation
FDA-approved indication: Treatment of adult patients with progressive, well differentiated, nonfunctional,neuroendocrine tumors(NET) of gastrointestinal (GI) or lung origin, (excluding pancreatic) with unresectable, locally advanced or metastatic disease.
National Library of Medicine Drug Information Portal
Medline Plus Health Information - Lutetium Lu 177 dotatate(Brand name: Lutathera) Manufactured by Advanced Accelerator Applications USA Inc
FDA-approved indication: Treatment of somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut tumors in adults.
National Library of Medicine Drug Information Portal - Gallium [Ga-68](Brand name: Netspot) Manufactured by Advanced Accelerator Applications, USA
FDA-approved indication: For use after radiolabeling with Ga 68, with positron emission tomography (PET) for localization of somatostatin receptor positive neuroendocrine tumors (NETs) in adult and pediatric patients.
National Library of Medicine Drug Information Portal - Octreotide(Brand name: Sandostatin LAR) Manufactured by Novartis Pharmaceuticals Corporation
FDA-approved indication: Reduction of growthhormone and IGF-1 (somatomedin C) in acromegaly.
National Library of Medicine Drug Information Portal
Medline Plus Health Information - Lanreotide(Brand name: Somatuline Depot (injection)) Manufactured by Ipsen, Inc
FDA-approved indication: Treatment of patients with unresectable,wellor moderately-differentiated locally advanced or metastatic gastroenteropancreatic neuroendocrine tumors to improve progression-free survival.
National Library of Medicine Drug Information Portal
Medline Plus Health Information
Organizations
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
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Carcinoid Cancer Foundation
118 N. Bedford Road, Suite 100
Mt. Kisco, NY 10549-2555
Toll-free: 1-888-722-3132
Telephone: +1-914-683-1001
Fax: +1-914-683-5919
Website: https://www.carcinoid.org/ -
Carcinoid NeuroEndocrine Tumour Society Canada (CNETS Canada)
1608 Blakely Drive
Cornwall, Ontario, K6J 5P4 Canada
Toll-free: 1-844-628-6788
Telephone: +1-416-628-3189
E-mail: [email protected], [email protected]
Website: https://cnetscanada.org/ -
NET Patient Foundation (UK and Ireland)
Holly House (2nd Floor)
74 Upper Holly Walk
Leamington Spa
Warwickshire, CV32 4JL United Kingdom
Toll-free: 0800 434 6476 (Helpline)
Telephone: 01926 883487 (General inquieries)
E-mail: [email protected]
Website: https://www.netpatientfoundation.org/ -
Neuroendocrine Cancer Awareness Network (NCAN)
3074 Brookchase Blvd
Fort Mill, SC 29707
Telephone: 866-850-9555
E-mail: [email protected], [email protected]
Website: https://www.netcancerawareness.org/ -
Neuroendocrine Tumor Research Foundation (NETRF)
321 Columbus Avenue, Suite 5R
Boston, MA 02116
Telephone: +1-617-946-1780
E-mail: [email protected]
Website: https://netrf.org/ -
North American Neuroendocrine Tumor Society (NANETS)
136 Everett Road
Albany, NY 12205
Telephone: (650) 762-6387
E-mail: [email protected]
Website: https://nanets.net/ -
Pancreatica
Cancer Patients Alliance
312 Fountain Avenue
Pacific Grove, CA 93950
Telephone: +1-831-658-0600
E-mail: [email protected]
Website: https://pancreatica.org/ -
The Healing NET Foundation
200 Hill Avenue
Suite 4
Nashville, TN 37210
Telephone: 615-3696463
E-mail: [email protected]
Website: https://www.thehealingnet.org/
Organizations Providing General Support
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American Cancer Society
250 Williams Street NW
Atlanta, GA 30329
Toll-free: 1-800-227-2345
Website: https://www.cancer.org
Learn more
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.
References
- Carcinoid Tumors. MedlinePlus. May 24, 2016; https://medlineplus.gov/carcinoidtumors.html.
- Carcinoid Tumor. Cancer.Net, American Society of Clinical Oncology. August, 2016; https://www.cancer.net/cancer-types/carcinoid-tumor/introduction.
- Newly Diagnosed: The Basics. The Carcinoid Cancer Foundation. https://www.carcinoid.org/for-patients/diagnosis/newly-diagnosed-the-basics/. Accessed 2/13/2018.
- Carcinoid Tumors. Mayo Clinic. December 3, 2015; https://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/symptoms-causes/syc-20351039.
- 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.
- 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.
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