About Neuroendocrine Tumors
Neuroendocrine cells act partly like nerve cells and partly like hormone-making cells, and they are scattered through the gut, pancreas and lungs. A tumor that grows from them is a neuroendocrine tumor. Tumors in the digestive tract were long called carcinoid tumors. Many NETs grow slowly, and the number diagnosed in the US has risen several-fold since the 1970s, partly because scans and scopes find more of them by chance.
Some NETs are functional, meaning they make extra hormones that cause symptoms. When hormones from a NET reach the bloodstream, usually after the tumor has spread to the liver, they can cause carcinoid syndrome: flushing, diarrhea and wheezing. Non-functional NETs cause symptoms only as they grow or spread.
Treatment depends on where the tumor started, its grade and whether scans show somatostatin receptors on it. Surgery can cure tumors found early. Lanreotide (Somatuline Depot) and octreotide (Sandostatin) injections ease hormone symptoms, and lanreotide also slows the growth of gut and pancreatic NETs. Lutathera, a radioactive drug that seeks out somatostatin receptors, is approved from age 12, and 2 more versions of the same lutetium-177 dotatate were approved in September 2026, Bexlutry and Bravnetsa. Daily pills include everolimus (Afinitor), sunitinib (Sutent) for pancreatic NETs and cabozantinib (Cabometyx), approved in March 2025. Xermelo (telotristat ethyl) treats carcinoid syndrome diarrhea that a somatostatin injection does not control.
Common Symptoms of Neuroendocrine Tumors
Recognizing the signs of Neuroendocrine Tumors early can lead to faster diagnosis and better outcomes. Symptoms may vary in severity from person to person. If you or a loved one are experiencing any of the following, consider speaking with a specialist.
- Flushing, a sudden redness and warmth of the face and neck (carcinoid syndrome)
- Diarrhea that keeps coming back
- Wheezing or trouble breathing, and a fast heartbeat
- Belly pain, bloating or weight loss without a known reason
- Blood in the stool or rectal pain, with tumors in the rectum
- No symptoms at all; many NETs are found by chance on a scan or scope done for something else
Who Neuroendocrine Tumors Affects
NETs are usually found in adults. In a 2025 analysis of US cancer registry data on neuroendocrine neoplasms, the average age at diagnosis was about 61, and 52% of people diagnosed were women. Most NETs are not inherited: about 5% of NETs of the gut, pancreas and lungs come from an inherited syndrome, rising to about 10% of pancreatic NETs, most often multiple endocrine neoplasia type 1 (MEN1), von Hippel-Lindau disease, neurofibromatosis type 1 or tuberous sclerosis.
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FDA-Approved Treatments for Neuroendocrine Tumors
There are currently 3 FDA-approved medications for Neuroendocrine Tumors. These therapies represent the current standard of care and may be used alongside or compared against investigational treatments in active clinical trials.
Source: openFDA drug labeling data. This list may not include all treatments. Always consult your doctor.
Help Paying for Neuroendocrine Tumors Treatment
Charity funds and drugmaker programs for Neuroendocrine Tumors, checked at the source.
- Somatuline Depot (Lanreotide) · IPSEN CARES
- Lutathera (Lutetium Lu 177 dotatate) · Novartis Patient Support
- Xermelo (Telotristat ethyl) · TerSera SupportSource
Side Effect Explorer
Real-world side effect reports from the FDA Adverse Event Reporting System (FAERS). Includes both FDA-approved drugs and investigational therapies from active clinical trials. Click any drug to see what patients reported.
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Genetic Testing
Genetic testing can confirm a diagnosis, guide treatment decisions, and identify family members who may be at risk.
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Trusted Neuroendocrine Tumors Resources
Reputable organizations and medical references for learning more about Neuroendocrine Tumors, including disease registries, foundation resources, and clinical guidelines.
- National Cancer Institute - Gastrointestinal Carcinoid Tumors Treatment (PDQ), Patient Version
- National Cancer Institute - Pancreatic Neuroendocrine Tumors Treatment (PDQ), Patient Version
- Dasari et al., Trends in the Incidence, Prevalence, and Survival Outcomes of Neuroendocrine Tumors in the United States, JAMA Oncology 2017
- Dasari et al., Epidemiology of Neuroendocrine Neoplasms in the US, JAMA Network Open 2025
- FDA - Cabozantinib approved for pancreatic and extra-pancreatic NETs (March 26, 2025)
- ITM - Complete response letter for ITM-11 (August 2026)