Knowledge Hub
Knowledge Hub
Most neuroendocrine cancers aren't inherited, but a small number are linked to hereditary syndromes like MEN1, MEN2 and VHL. Here's what to know.
Written by NECNZ team
It is not fully understood what causes neuroendocrine cancers. Researchers do not know why some neuroendocrine cells start growing abnormally. The risk factors for NETs are not well known and most NETs occur without any known cause.
Most neuroendocrine cancers are NOT passed down through families (inherited). But for a small number of patients, an abnormal gene that gets passed down through the family does increase the risk of developing a NET.
Some NETs are linked with a hereditary cancer or tumour syndrome. The main ones are:
Tell your doctor if you are aware of other family members who have developed cancers or endocrine problems – especially at unusually young ages, or in patterns that affect more than one generation.
If your doctor thinks an inherited syndrome is possible, they can refer you to a genetic counsellor. A genetic counsellor will help you understand what testing involves, what the results might mean for you and your whānau, and the choices you'll have along the way.
If you'd like to talk this through informally, get in touch with our team – we can help you think about what questions to bring to your specialist.
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A free, anonymous, NZ-specific 3-minute symptom check. Get a printable summary to take to your GP.
Patient Guide
This booklet has been developed to provide information about neuroendocrine tumours (NETs) for patients and their families.
Types of scans for NET Cancers
There are various types of scans that may or may not be suitable for your type of NETs. Here is a summary of some scans you might encounter.
Grades of Neuroendocrine (NET) Cancers
What G1, G2 and G3 mean for a neuroendocrine cancer diagnosis – plain-language explanation of grade, Ki-67, and how they shape treatment options.