A spotlight on Multiple Endocrine Neoplasia (MEN)
First published 2015, updated for 2025.OverviewWe all know that Neuroendocrine Tumours (NETs) and their syndromes are complex but there is even more complexity to be found in a group of related disorders known as Multiple Endocrine Neoplasia (MEN). I recommend all NET patients should try to understand the basics of MEN and vice versa, particularly as both conditions seem to come with a plethora of endocrine-related effects.MEN patients will normally have a tumour in at least two endocrine glands - thus the terms 'Multiple' and 'Endocrine' (tumours can also develop in other organs and tissues). Neoplasia is just another name…
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
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…
Neuroendocrine Cancer: Troublesome Thyroids
In 2013, just when I thought everything seemed to be under control, I was told I had a 'lesion' on the left upper lobe of my thyroid and that they had been monitoring it for a while. Of course at the time, you immediately assume NET. It was a bit of a shock as I had already been subjected to some radical surgery and wondered if this was just part of the relentless march of metastatic NET disease. However, that would be a simple explanation.The thyroid gland does get mentioned frequently in NET patient discussions but many of the conversations…
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…