Neuroendocrine Tumors

About neuroendocrine tumors

Neuroendocrine tumors, or NET, are a rare type of cancer that originate in neuroendocrine cells throughout the body. They are most often found in the gastrointestinal tract, lungs or pancreas. Each year 5.25 out of every 100,000 people in the United States are diagnosed with NET. NET can be defined as functional or nonfunctional. Functional NET are characterized by symptoms caused by the oversecretion of hormones and other substances. Nonfunctional NET may be characterized by symptoms caused by tumor growth.

Symptoms appear once the tumor produces hormones or grows into surrounding tissues and organs. Non-specific signs and symptoms include, but are not limited to, abdominal pain, asthma-like wheezing, diarrhea, fatigue, nausea, weight loss, and unusual bleeding.

NET tend to grow slowly and can have no symptoms or vague symptoms that can be mistaken for other conditions. As a result, NET are often diagnosed at an advanced stage, meaning the cancer cells have spread to other parts of the body.

Treating neuroendocrine tumors

There are many considerations involved in determining a treatment plan for a patient with NET, including the stage of the disease, tumor size and location, and the patient's overall health.

For those with localized disease, surgery is the primary treatment option.
Targeted therapy taken orally also may be available depending on the type of NET a patient has.
Other options include radiation therapy, chemotherapy, and other medical therapies.

Given the nature of the disease, research suggests that patients with NET should be evaluated and managed by a team of specialists in multiple disciplines. Depending on the type and location of the primary (or original) tumor, a multidisciplinary team may include an endocrinologist, gastroenterologist, nurse, oncologist, pathologist, pulmonologist, and surgeon, among many others.

Questions to ask your doctor

What type of NET do I have?
Is my NET functional or nonfunctional?
Is my NET progressive? What does it mean to have progressive NET?
What stage is my NET?
What are my treatment choices?
What are the expected benefits of each kind of treatment?
What are the side effects of each treatment?
How will each treatment affect me?
Are there new treatments or clinical trials that I should consider?
Are there any dietary changes that may help with my symptoms?
What resources are available to support patients with NET and their loved ones?
Are there any patient groups in the area or online who can provide support and information?