OBSOLETE: Gastric neuroendocrine tumor type 1

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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

Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for OBSOLETE: Gastric neuroendocrine tumor type 1.

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No actively recruiting trials found for OBSOLETE: Gastric neuroendocrine tumor type 1 at this time.

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No specialists are currently listed for OBSOLETE: Gastric neuroendocrine tumor type 1.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to OBSOLETE: Gastric neuroendocrine tumor type 1.

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Community

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Caregiver Resources

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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.