Overview
Gastric neuroendocrine tumor type 1 (also called gastric NET type 1, type 1 gastric carcinoid, or ECL-cell carcinoid type 1) is a rare, slow-growing tumor that forms in the stomach lining. These tumors grow from special hormone-producing cells called enterochromaffin-like (ECL) cells. Type 1 is the most common of the three types of gastric neuroendocrine tumors, making up about 70-80% of all gastric NETs. This type almost always develops in people who have a condition called chronic atrophic gastritis (often caused by an autoimmune process), which leads to very low stomach acid and high levels of a hormone called gastrin. Too much gastrin over a long time causes ECL cells to grow out of control, eventually forming small tumors. These tumors are usually small, multiple, and found in the upper part of the stomach. Most people with gastric NET type 1 have mild or no symptoms at first. Some may notice stomach discomfort, nausea, or signs of anemia. The good news is that type 1 gastric NETs are generally considered low-risk and rarely spread to other parts of the body. Treatment often involves regular monitoring with endoscopy, and in some cases, removal of the tumors through endoscopy or medication to lower gastrin levels. The overall outlook is very favorable compared to other stomach cancers.
Also known as:
Key symptoms:
Stomach pain or discomfortNauseaFatigue due to anemia (low red blood cells)Pale skin from anemiaFeeling full quickly after eatingUnintentional weight lossHeartburn or indigestionVitamin B12 deficiency symptoms such as tingling in hands or feetOccasional vomitingLoss of appetite
Sporadic
Usually appears on its own, not inherited from a parent
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Gastric neuroendocrine tumor type 1.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Gastric neuroendocrine tumor type 1.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to OBSOLETE: Gastric neuroendocrine tumor type 1.
Community
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Caregiver Resources
NORD Caregiver Resources
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Mental Health Support
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Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.How often do I need endoscopy, and what are you looking for each time?,Do my tumors need to be removed now, or can we monitor them?,Should I be tested for autoimmune atrophic gastritis or pernicious anemia?,Do I need vitamin B12 injections or supplements, and for how long?,Is there any chance this tumor could spread, and what signs should I watch for?,Should I or my family members be tested for inherited conditions like MEN1?,Are there any clinical trials or new treatments I should know about?
Common questions about OBSOLETE: Gastric neuroendocrine tumor type 1
What is OBSOLETE: Gastric neuroendocrine tumor type 1?
Gastric neuroendocrine tumor type 1 (also called gastric NET type 1, type 1 gastric carcinoid, or ECL-cell carcinoid type 1) is a rare, slow-growing tumor that forms in the stomach lining. These tumors grow from special hormone-producing cells called enterochromaffin-like (ECL) cells. Type 1 is the most common of the three types of gastric neuroendocrine tumors, making up about 70-80% of all gastric NETs. This type almost always develops in people who have a condition called chronic atrophic gastritis (often caused by an autoimmune process), which leads to very low stomach acid and high level
How is OBSOLETE: Gastric neuroendocrine tumor type 1 inherited?
OBSOLETE: Gastric neuroendocrine tumor type 1 follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does OBSOLETE: Gastric neuroendocrine tumor type 1 typically begin?
Typical onset of OBSOLETE: Gastric neuroendocrine tumor type 1 is adult. Age of onset can vary across affected individuals.