Neuroendocrine Tumors (NETs) are a family of cancers that cause tumors in the neuroendocrine system.




Neuroendocrine Tumours (NETs) are a family of cancers that cause tumours in the neuroendocrine system. The neuroendocrine system consists of nerve and gland cells. It produces hormones and releases them into the bloodstream. NETs are generated by cells that release the hormones. The majority of NETs are found in the intestine, pancreas and the lungs.(4)

  • Five out of every hundred thousand people are diagnosed with NETs each year. (1)
  • NETs are difficult to diagnose. For example, diagnosis of tumors in the stomach, intestine and pancreas (GEP-NET) can be delayed up to 10 years. (2)

  • Because NETs are slow-growing tumors, patients may survive for many months after diagnosis. (3)

  • 60-80% of patients are diagnosed at an advanced stage, often because of similarity of symptoms to other conditions. Therefore, although NET incidence is relatively low, prevalence is quite high. (1)

  • Important research into the heritability of NETs is ongoing and may have important conclusions in terms of diagnosis potential.
  • Some NETs are inherited disease driven by genes that spread the disease in families of affected members. Therefore screening for genetic causes and early recognition of the disease in gene carriers is an important aspect.

  • Within the family of NETs, some conditions are especially rare such as rare pancreatic tumors.

  • Some NETs also over secrete hormones in the circulation that are responsible for significant morbidity and mortality.

  • Among other problems, NETs can release large amounts of hormones into the blood, causing numerous problems such as diarrhea and flushing—a condition known as carcinoid syndrome. (5)

  • Although at least 40 different types of NETs have been identified, including benign forms, these tumors are relatively rare. They also are infamous for their diverse, or heterogeneous, behavior, even among those that form in the same anatomical location.(5)


Read more about NET facts and Policy recommendations here …





(1) Incidence and prevalence data presented by Prof. Martin Caplin in the European Parliament on 10th November 2015 – Incidence i.e. number of new cases per year 3-5/100,000 population, Prevalence i.e. number living with the disease 20/100,000
(2) Modlin and Gustafson refer to average of 5-7 years; Massironi to average 3-10 years
(3) Kufe DW, Pollock RE, Weichselbaum RR, et al. eds. Holland-Frei Cancer Medicine, 6th ed. Hamilton (ON): BC Decker; 2003
(4) NHS Choices patient information website accessed on February 18 2016
(5) New Therapy Benefits Patients with Neuroendocrine Tumors, National Cancer Institute at the National Institutes of Health, 2017.



Read the complete NET and Policy recommendations here …