Tag: Familial NET

Cancer that occurs in families more often than would be expected by chance. These cancers often occur at an early age, and may indicate the presence of a gene mutation that increases the risk of cancer. They may also be a sign of shared environmental or lifestyle factors.

15 Feb 2025

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Genetics and Neuroendocrine Tumours

Genetics and Neuroendocrine Tumours

Awareness, Living with Neuroendocrine Cancer, SurvivorshipAutosomal dominant, Benign, Carney-Stratakis syndrome (CSS), Chromaffin cells, Familial medullary thyroid cancer (FMTC), Familial NET, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Genetic testing, Genetics, Germline genetic mutations, Hereditary cancer syndrome, Hormones, Incurable cancer, Lung NETs, Malignant, MEN1 syndrome, Metastatic Neuroendocrine Cancer, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Neurofibromatosis type 1 (NF1), Paraganglioma, Pheochromocytoma, Pituitary NET (PitNET), Quality of LIfe (QoL), Tuberous sclerosis (TSC)

Hereditary genetics.....where to focus In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing as research advances and I cannot guarantee this post will contain all of them. Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumours…

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14 Dec 2016

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Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series123I-Metaiodobenzylguanidine (mIBG), 131I-Metaiodobenzylguanidine (mIBG), 18F-FDG, 18F-FDOPA, 24-hour urinary catacholamines and metanephrines, Adrenal glands, Adrenal medulla, Adrenaline, Adrenocortical Carcinoma (ACC), Anxiety, AZEDRA, Catecholamines, EPAS1, Epinephrine, Familial NET, FH, Ga68 PET/CT, Genetics, Hormonal crisis, Hormones, Hyperadrenergic, Hypertension, Intraoperative hypertensive crisis, Iobenguane I 131, MDH2, MEN2 syndrome, MIBG scan, Multiple Endocrine Neoplasia (MEN), Nausea, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), NF1, Octreotide scan, Palpitation, Pheochromocytoma, RET, Scan, SDHA, SDHAF2(SDH5), SDHB, SDHC, SDHD, Somatostatin analogues, Surgery, Sweating, Tachycardia, The 5 E's, Vanillylmandelic acid (VMA), Von Hippel-Lindau (VHL) Syndrome

Updated 19th August 2025 I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types? As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why. If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge. So, let's get definitions out…

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