When NET cancers run in families: inherited syndromes

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.

Hereditary syndromes linked to NETs

Some NETs are linked with a hereditary cancer or tumour syndrome. The main ones are:

• Multiple endocrine neoplasia (MEN Type 1) – often involves the pancreas, parathyroid glands and pituitary gland
• Multiple endocrine neoplasia (MEN Type 2) – often involves the thyroid (medullary thyroid cancer), adrenal glands (phaeochromocytoma) and parathyroid
• Von Hippel-Lindau disease
• Adrenal cortical carcinoma (ACC)
• Succinate dehydrogenase enzyme (SDH) syndromes, including SDHD
• Familial Medullary Thyroid Carcinoma (FMTC)

What to do if you're worried

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.