Neuroendocrine tumors (NETS) are rare cancers found in only about 2% of all individuals diagnosed with cancer each year. There are many varieties, with carcinoid being most common. Other NETS include islet cell, VIPoma, gastroma and insuloma.
Carcinoid and other NETS often release certain hormone-like substances into the bloodstream. Most cancers cause symptoms only in the organs they start in or spread to but carcinoid can cause symptoms throughout the body. Symptoms include diarrhea, flushing, wheezing, fast heartbeat and weight loss, in addition to the pain often experienced in the original location of the tumor.
NETS may appear almost anywhere but they are most often found in the abdominal region, pancreas and lungs. Because symptoms resemble those of other diseases, such as irritable bowel syndrome and Crohn's disease, they are often misdiagnosed for years. Blood tests such as serum chromogranin A or urinary 5HIAA can accurately diagnose these tumors.
Carcinoid and other NETS are typically slow-growing. There is often a false belief in the medical community that some of these NETS are benign. They are not! They can and will metastasize and they can be deadly. But advances in treatment have improved the length of survival in carcinoids and other NETS.