What Are Neuroendocrine Tumors?

There exists a group of relatively rare tumors, called carcinoid and related neuroendocrine tumors, which can affect your health either by secreting chemicals which can cause intense flushing, diarrhea, uncontrolled high blood pressure, behavioral changes, severe stomach ulcers or skin rash, and either diabetes or very low levels of blood sugar. Many of these tumors do not produce an excess of any chemicals but cause symptoms by their growth impinging on normal tissues.

This tumor growth and development is formed by overgrowth of one type of cell: which can be malignant. If this overgrowth is somewhat limited and does not spread to other areas or threaten to squeeze out or replace adjacent structures, it is considered to be a benign tumor, which means it is not life threatening.

However, if the growth is more aggressive and threatens surrounding tissues or sends “seedlings” (metastases) to grow in distant areas then it has potential to be fatal and is considered malignant; that means it is a cancer.

NET Facts

  • Over 90% of all carcinoid/ NETs are incorrectly diagnosed and treated for the wrong disease
  • From initial onset of symptoms the average time to proper diagnosis exceeds five years
  • More than 12,000 new cases of carcinoid/ NETs are diagnosed each year
  • Physicians are often not aware of current diagnostic and treatment options
  • Many physicians still believe that carcinoid tumors are benign, slow growing and do not metastasize
  • Irritable Bowel Syndrome (IBS) and Crohn’s disease are the two most common misdiagnosed conditions for patients with midgut carcinoid
  • Abdominal pain, flusing, diarrhea, wheezing, bloating, heart palpitation, weakness, skin rash, heartburn and weight changes are the most prevalent carcinoid/ NET symptoms
  • At least 125,000 people are living with carcinoid/ NETs in the United States