The cause of NETs is still generally unknown. However, approximately 15 to 20 per cent are associated with inherited cancer susceptibility syndromes including:

  • Multiple endocrine neoplasia type 1 and type 2 (MEN 1 and 2)

There are many forms of MEN, the most common are type 1 and 2. The disease typically involves tumours forming in multiple endocrine glands that may or may not be cancerous. These can cause the glands to become overactive and overproduce hormones.

  • Von Hippel-Lindau syndrome (VHL)

VHL is an inherited condition where blood vessels grow abnormally. Growths may develop in the back of the eye, certain areas of the brain, spinal cord, adrenal glands and other parts of the body. 

This is a genetic condition that causes tumours to grow along your nerves.

These tumours most often affect the brain, skin, kidneys, heart, eyes and lungs. Tuberous sclerosis is present from birth, although it may not cause obvious problems immediately. It's estimated that around 1 in every 6,000 babies are born with the condition.

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