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About GEP-NETS

What causes GEP-NETS?

No one knows exactly what causes GEP-NETs to grow, but generally, a change in the DNA of a cell starts a process whereby the cell doesn’t behave as normal.

This altered cell then divides and creates a copy of itself, which also has the faulty DNA. These cells carry on dividing and growing in number uncontrollably until there is a tumour or cluster of abnormal cells.1

The change in the DNA may be influenced by:1

Some substances in food, high energy radiation, certain chemicals, genetics (i.e. you get it from your parents), tobacco smoke, and ultraviolet radiation from the sun.

About 1 in 10 cases of GEP-NETs is related to a genetic condition.2 If you have been diagnosed with one of the below genetic conditions and you start to notice any new symptoms, talk to your doctor straight away:2

  • Multiple Endocrine Neoplasia 1 (MEN1)
  • Von Hippel Lindau (VHL)
  • Neurofibromatosis Type 1 (NF1)
  • Tuberous Sclerosis (TS)

References

  1. CRUK. Genes, DNA and Cancer. Available at: https://www.cancerresearchuk.org/about-cancer/what-is-cancer/genes-dna-and-cancer. Last accessed April 2025.
  2. O’Shea T, Druce M. When should genetic testing be performed in patients with neuroendocrine tumours? Rev Endocr Metab Disord. 2017; 18(4): 499–515.