Whether you’ve just been diagnosed with NETs or have been living with the disease for years, there’s a lot of information to take in. Take a look below at our FAQs to help you find some of the answers you may be looking for.

 

What are gastrointestinal and pancreatic neuroendocrine tumors (GEP-NETs; also called NETs)?

Gastrointestinal and pancreatic neuroendocrine tumors are a rare form of cancer. Symptoms can vary widely depending on the type, size and location of the tumor. Some patients may show no symptoms at all, leading them to go for years without being correctly diagnosed. Although rare, the incidence of NETs has been increasing over time (a four-to-six fold increase in the last 30 years), due in large part to the ability to better test for and diagnose the disease.


What causes NETs?

NETs originate from neuroendocrine cells. These cells, which are mainly located in the gastrointestinal tract, are also scattered throughout the chest and abdomen, and release hormones into the bloodstream in response to a signal from the nervous system. When these cells are faulty, they produce an excess of hormones, which can cause various symptoms. Neuroendocrine tumors form in the lining of the gastrointestinal tract and are most often found in the appendix, small intestine, rectum and pancreas, and can travel to other parts of the body.


How common are NETs?

Although rare, the incidence of NETs has been increasing over time, with a four-to-six fold increase in the last 30 years. More than 12,000 people each year are diagnosed with carcinoid tumors, of which 8,000 occur in the GI tract. As many as 112,000 are currently living with NETs in the United States. Approximately five out of every 100,000 people in the U.S. are currently diagnosed.


What are the most common symptoms of NETs?

The symptoms of NETs can be vague and mimic those of other diseases including Crohn’s disease or irritable bowel syndrome. This variety of symptoms can contribute to a delay in diagnosis. The signs and symptoms of NETs originate from the tumors producing hormones. The most common symptoms include:

  • Diarrhea
  • Facial flushing (redness and warmth)
  • Asthma-like wheezing attacks
  • Rapid heartbeat
  • Nausea/vomiting
  • Abdominal pain

How are NETs diagnosed?

A physical exam, along with a series of blood and imaging tests, including a CAT scan, MRI (magnetic resonance imaging) and/or gastrointestinal endoscopy, will confirm the diagnosis of NETs and help doctors determine where the cancer originated, how advanced it is and where it may have spread throughout the body.


How difficult are NETs to diagnose?

It can take more than five years on average for someone with NETs to be diagnosed, as the symptoms can be vague and mimic many other conditions such as Crohn’s disease and irritable bowel syndrome. It’s therefore important to speak with your doctor at the first sign of symptoms. As with many diseases, the earlier you are diagnosed, the better.


Are NETs treatable?

NETs are treatable. NET tumors can be surgically removed depending on location and resectability. Still, there are other treatments available that have been shown to help control tumor growth and help address symptoms.


What are the treatment options for NETs?

It’s important to talk to your doctor to make sure you are getting the most effective treatment for you. Your doctor can tell you about treatment options that allow you to take action against the cancer. Once doctors determine where the cancer originated, how advanced it is and where it may have spread throughout the body, a variety of treatment options may be explored.

  • Surgery – Removal of all or part of the tumor, as well as the tissue around it, and sometimes even the organ that contains the cancer.
  • Radiation – High-energy X-rays used to kill cancer cells.
  • Chemotherapy – Medications used to destroy tumor cells, usually by stopping the cells’ ability to grow and divide.
  • Hormone therapy – Medications that are given to help control the tumor from growing or help relieve symptoms caused by the tumor.
  • Targeted Therapy – Medications that target the tumor’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival.

What are the risk factors for NETs?

While there are things that increase a person’s risk of developing NETs, having risk factors does not mean a person will develop the disease. Some risk factors are related to age, ethnic background, and gender. The average age of those who are diagnosed is in their early 60’s. This type of tumor is more common in African Americans than in whites, and slightly more common in women than in men. Some additional risk factors include: a family history of conditions which cause tumors to form in the endocrine or nervous systems, and certain conditions that affect the stomach’s ability to make stomach acid (including atrophic gastritis, pernicious anemia, multiple endocrine neoplasia type 1 syndrome, neurofibromatosis type 1 syndrome or Zollinger-Ellison syndrome).