November is Neuroendocrine Tumors Awareness Month
JOIN WITH AACR TO FIND BETTER WAYS TO PREVENT AND TREAT Neuroendocrine tumors
Neuroendocrine tumors (sometimes called carcinoids) are rare, slow-growing tumors that are found in organs throughout the body. In adults, neuroendocrine tumors usually start in the digestive tract, while in children and young adults they are more often found in the appendix or lungs. Neuroendocrine tumors grow from neuroendocrine cells, which send and receive messages through hormones to help control bodily functions.
Symptoms from neuroendocrine tumors can vary depending on their location. In some cases, such as with gastrointestinal neuroendocrine tumors, people may not experience symptoms in the early stages of the disease. In rare cases, patients may develop carcinoid syndrome, which can lead to flushing of the face and upper body, diarrhea, and/or difficulty breathing.
About 4 in 100,000 adults are estimated to be diagnosed with a neuroendocrine tumor each year. The estimated incidence of gastrointestinal neuroendocrine tumors, the most common form of neuroendocrine tumors in adults, is about 2 per 100,000 adults.
The number of people diagnosed with neuroendocrine tumors is increasing, partly due to the fact that more patients are having CT and MRI scans, and the quality of these scans is steadily improving. Scans taken for other reasons can sometimes detect neuroendocrine tumors.
Treatment options for neuroendocrine tumors include surgery, hormone therapy, chemotherapy, targeted therapy, and radioactive agents. The median overall survival for patients in the United States with neuroendocrine tumors is 11.8 years, varying based on how advanced the cancer was when diagnosed.
Risk factors for neuroendocrine tumors include having multiple endocrine neoplasia type 1 (MEN1) syndrome. Conditions that impact the production of stomach acid, such as atrophic gastritis, pernicious anemia, and Zollinger-Ellison syndrome, can increase the risk of neuroendocrine tumors in the gastrointestinal tract.
One Person’s Story
In January 2025, Alexandra Frost was diagnosed with with stage 3 neuroendocrine cancer when she was 37 years old. Over the next three months, she had two major surgeries to remove her gallbladder, appendix, and colon. As a health journalist, she wrote about her experience since her surgeries to adopt healthy habits that are recommended for cancer survivors to help them live longer and prevent the cancer from returning or progressing. Read about her experience in Cancer Today, the AACR’s magazine for patients and caregivers.
More on Neuroendocrine Tumors
The AACR Pediatric Cancer Progress Report 2025 details the expanding treatment options for pediatric patients, including for childhood gastrointestinal neuroendocrine tumors. In March 2025, the U.S. Food and Drug Administration approved the molecularly targeted therapeutic cabozantinib (Cabometyx) for treating children 12 years and older with pancreatic or non-pancreatic neuroendocrine tumors that have spread or are not surgically removable and have not responded to earlier treatments. Read the report to learn more about this treatment and other advances in treating childhood cancers.
How AACR Supports Neuroendocrine Cancer Research
In 2026, AACR awarded a Trailblazer Research Grant for Early-stage Investigators to Samir Zaidi, MD, PhD, of Yale School of Medicine, for his research on the mechanisms of lineage plasticity—the ability of tumor cells to adapt under pressure and develop resistance to therapies—that drive the progression of prostate adenocarcinoma to neuroendocrine prostate cancer (NEPC), an aggressive and lethal disease. “Receiving the 2026 AACR Trailblazer Grant will accelerate my research by enabling high-risk, mechanistic studies on lineage plasticity,” Zaidi said. “It will support the validation of novel therapeutic targets and microenvironmental drivers of plasticity, strengthen the translational impact of my work, and advance strategies to overcome therapy resistance in prostate cancer.”
for more information
Please see our page on gastrointestinal neuroendocrine tumors.
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