Childhood Cancer Awareness Month – Neuroendocrine Cancer featuring Elizabeth’s story

Childhood Cancer Awareness Month – Neuroendocrine Cancer featuring Elizabeth’s story

September is Childhood Cancer Awareness Month!  The newspapers and social media have been featuring many childhood cancer articles. It's known that NENs do occur in childhood, particularly those associated with familial/hereditary syndromes including (but not limited to), Multiple Endocrine Neoplasia (MEN), hereditary Pheochromoctyoma/Paraganglioma (PPGL), familial medullary thyroid carcinoma (FMTC); Von-Hippel Lindau (VHL) syndrome.  But I also see young people diagnosed with sporadic (not hereditary) appendiceal Neuroendocrine Tumours (NET), most often incidentially found following appendicitis investigations.  There are very rare instances of sporadic findings in regular NENs of varying primary types (including Neuroendocrine Carcinomas (NEC)).I dedicate this post to Elizabeth Rooney…
The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

The Syndromes of Neuroendocrine Cancer – Early Signs of a Late Diagnosis

Updated 14th June 2024 The Syndromes of Neuroendocrine Cancer - Early Signs of a Late Diagnosis There are some curious things about Neuroendocrine Cancer (NETs elsewhere in the text on the basis that a hormonal syndrome is extremely rare in Neuroendocrine Carcinoma (NEC)).  One of them is that it can very often exhibit one or more vague symptoms collectively known as a 'syndrome'.  Syndrome is an apt word to describe these complications as the most general meaning in medical terms is a group of symptoms that together are characteristic of a specific disorder or disease".  Having a syndrome can often…
GLP-1 receptor agonists (e.g. semaglutide) for adults with type 2 diabetes/weight loss – The Neuroendocrine Tumour (NET) Effect

GLP-1 receptor agonists (e.g. semaglutide) for adults with type 2 diabetes/weight loss – The Neuroendocrine Tumour (NET) Effect

BackgroundThis subject of semaglutide (e.g. Ozempic) is appearing regularly in my private Facebook group, and I can see there might be some confusion out there. But first, I wanted to state that this post is not about me saying semaglutide (or whatever brand names are included in this post) is something you should be taking or not. That is the responsibility of your doctors, in conjunction with you, the patient.  Nor is this post to be considered in any way a promotion for the drug or the manufacturer, I have no relationship or communications with the manufacturer, nor am I taking this…
Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Cancer is a genetic disorder. It happens when genes that manage cell activity mutate and create abnormal cells that divide and multiply, eventually disrupting how your body works.  Medical researchers estimate 5% to 12% of all cancers are caused by inherited genetic mutations that you can’t control. More frequently, cancer happens as an acquired genetic mutation. Acquired genetic mutations happen over the course of your life. This is a very general description of the close relationships between genetics and cancer but I wanted to focus below on hereditary syndromes and genetic disorders related to Neuroendocrine Neoplasms.  Definitions - the differences between Hereditary…
Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Updated 19th August 2025I 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 of the…