Dr. Charlie Nutting 2016 LungNET Conference, Jun 11 in Denver CO

This educational session presented by the SNMMI and its Patient Advocacy Advisory Board offers patients, caregivers, and advocates a unique opportunity to learn about the role of nuclear medicine in diagnosing and treating neuroendocrine tumors. Recorded August 15, 2020.

Lung cancer survivor, Sharon, shares her journey after being diagnosed with lung cancer that spread to her brain.

Support for this project provided by Regeneron and Sanofi Genzyme.

20-min overview of lung neuroendocrine tumors (NETs)
2:00 Measuring tumor grade
3:00 Typical carcinoids vs. atypical carcinoids
4:00 Carcinoid syndrome and other syndromes
7:05 DIPNECH
9:45 Treatments (Chemotherapy, hormone therapy, PRRT)

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Neuroendocrine tumors are a group of uncommon tumors that start in specialized cells in your neuroendocrine system. These cells combine the traits of nerve cells and hormone-producing endocrine cells. They link your endocrine system, which manages your hormones, and your nervous system. Neuroendocrine cells are scattered throughout your body.

NET has several types and sub-types with symptoms that might be mistaken for other less serious conditions. Once considered a rare cancer, more and more people are being diagnosed with NET thanks to improved diagnostic tests that identify NET more quickly. Early diagnosis and treatment continues to increase the number of people living for years with NET.

How do neuroendocrine cells work?
Neuroendocrine cells act like traffic cops monitoring busy intersections and telling drivers when to stop and go. Like them, your endocrine cells monitor signals from your nervous system. When they get the signal, your cells tell your endocrine system to release hormones. Hormones are chemicals that coordinate different body functions, let your body know what to do and when to do it.

But your neuroendocrine cells do more than watch signals and trigger hormone flow. They also make and release hormones that control activity in the organ where they’re located. For example, the neuroendocrine cells in your gut (digestive system) make hormones that drive production of digestive juices and coordinate the muscles that move food through your bowels.

Neuroendocrine tumors happen when your endocrine cells begin to divide and multiply uncontrollably, eventually becoming tumors that can affect the organs where the cells are located.

What are the different types of neuroendocrine tumors?
Neuroendocrine tumors are classified as primary or secondary tumors. A primary tumor is cancer that hasn’t spread to other areas of your body. A secondary tumor is a NET that has spread, usually to your lymph nodes in your lymphatic system, your liver or your bones.

NET types are based on their location. For example, a neuroendocrine tumor in your gut is a neuroendocrine tumor of the gastrointestinal tract. Here are the most common primary neuroendocrine tumor types:

Gastrointestinal (GI) tract. NETs develop most commonly in the GI tract, specifically in the large intestine (20%), small intestine (19%), and appendix (4%). The GI tract plays a central role in digesting foods and liquid and in processing waste. GI tract NETs used to be called carcinoid tumors.
Lung. The lung is the second most common location of NETs. About 30% of NETs occur in the bronchial system, which carries air to the lungs. Lung NETs also used to be called carcinoid tumors.
Pancreas. Approximately 7% of NETs can develop in the pancreas, a pear-shaped gland located in your abdomen between the stomach and the spine. Pancreas NETs (PNETS), which used be called islet cell tumors, represent about 7% of all pancreatic cancers.
Who do these tumors affect?
Almost anyone can develop neuroendocrine tumors, including children, but NETs are very rarely seen in children, teenagers and young adults. The average age at diagnosis is between ages 50 to 60. Females are slightly more likely than males to develop neuroendocrine tumors.

How common is this condition?
Neuroendocrine tumors affect about 5 in 100,000 people. More than 12,000 new cases are diagnosed each year and as many as 125,000 people with these tumors are living in the U.S. today.


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