Neuroendocrine Cancer – tumour markers and hormone levels
Originally published 2016, updated October 2025BackgroundSome people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time. Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a…
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…
The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2022 classification changes)
- Updated 11th March 2024 - This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of Neuroendocrine Neoplasms is so significant, so gamechanging, that I have re-released the updated text. You may see these important publications called 'Blue Books'. Words are very important in Neuroendocrine Neoplasms (NENs). Nomenclature has important meaning and context more than most other cancers due to the heterogeneity of this group of neoplasms. Grade and Stage are two factors inextricably linked to the nomenclature and while there have been less changes in these…
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…
Awareness Post – Neuroendocrine Cancer in children and adolescents
September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many children's cancer articles. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. In 2020. this case came up in my google alerts and was related to a family who live not far from me in the south of England. An…
A Spotlight on Lung Neuroendocrine Neoplasms
WHO Classification of Tumours, 5th Edition, Volume 5: Thoracic TumoursThe aim of this spotlight is to provide a summary of the latest information on Lung Neuroendocrine Neoplasms (NEN) including the latest terminology, epidemiology data, and guidelines. This follows the publication of the Thoracic WHO classification 5th edition (2021): terminology and criteria for neuroendocrine neoplasms (Blue Book). This book has been anticipated to see if the panel compiling this follows the lead of the Gastroenteropancreatic Neuroendocrine Neoplasms (GEPNEN) editions issued in 2017 (Endocrine) and 2019 (Digestive systems) by removing the antiquated misnomer term ''Carcinoid" in line with the recommendations made by…
Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary
It's estimated that around 5-10% of Neuroendocrine Neoplasms (NENs) have an unknown primary - what that means is cancer cells have been found in the body but the place cancer began remains unknown. I wrote about this issue in more depth in my article "Needle in a haystack" - you can read that here. In that article, you will note that NET specialists through their knowledge and understanding of the behaviour of these comped tumours, can often drill down and gather various pieces of evidence to help narrow down the primary location. However, this new study would indicate they could…
Neuroendocrine Cancer – it can be ‘smoke and mirrors’
In a previous life, I used the term 'smoke and mirrors' quite a bit. I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail. Sometimes there was an element of 'covertness' or a 'hidden agenda'. It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late. Some of you will already be seeing where I'm going with this line of thinking -…