MEN1 syndrome Archives

23 Apr 2026

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A Spotlight on Pancreatic Neuroendocrine Neoplasms

A spotlight on NENs, A spotlight on NENs - Types, Patient AdvocacyATRX, DAXX, Gastrinoma, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Genetics, Glucagonoma, Insulinoma, MEN1 syndrome, Neurofibromatosis type 1 (NF1), Pancreatic NEC, Pancreatic NET (PanNET), PPoma, Somatostatinoma, Tuberous sclerosis (TSC), VIPoma, Von Hippel-Lindau (VHL) Syndrome

DisclaimerThe information in this Spotlight is for general education only. It cannot replace advice from your own medical team, who know your individual situation, test results, and treatment options. Neuroendocrine Neoplasms and related conditions are complex and research is evolving; guidance, classifications, and statistics may change over time. Always discuss any questions or concerns with your specialist team before making decisions about tests, treatments, or monitoring. Pancreatic neuroendocrine neoplasms comprise Pancreatic NETs (well differentiated) and Pancreatic NEC (poorly differentiated) 1. What they are Pancreatic NENs arise anywhere in the head, neck, body, or tail of the pancreas and include: Well‑differentiated…

15 Feb 2025

By Ronny Allan

10 Comments

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…

01 Dec 2024

By Ronny Allan

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Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy131I-Metaiodobenzylguanidine (mIBG), 5-HIAA, 5-HT, 5-HTP, 5-Hydrotryptophan (5-HTP), 5-Hydroxyindoleacetic Acid (5-HIAA), 5-Hydroxytryptamine (5-HT), Adrenocorticotropic Hormone (ACTH), Biopsy, C-peptide, Calcitonin, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Catecholamines, Chromaffin cells, Chromogranin, Chromogranin A (CgA), Chromogranin B (CgB), Chromogranin C (CgC), Cortisol, Electrolytes, Endocrine, Fasting Gut Endocrine Profile, Flushing, Gastric NET, Gastrin, Gastrin pH, Gastrinoma, Gastroesophageal reflux disease (GERD), Genetic testing, Glucagon, Glucagonoma, Hedinger syndrome, Histamine, Hormones, Hypertension, Insulin, Insulinoma, MEN1 syndrome, Metanephrines, Molecular markers, NETest, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Neurokinin A (NKA), NKA, NT-proBNP, Pancreastatin, Pancreatic cancer, Pancreatic NET (PanNET), Pancreatic polypeptide (PP), Pheochromocytoma, Plasma 5HIAA, PPoma, Proinsulin, Proton pump inhibitors (PPI), Red blood count (RBC), Renal insufficiency, Serotonin, Serum serotonin, Somatostatin, Somatostatinoma, Substance K, Substance P, Tachycardia, Tachykinin, VIPoma, Wheezing, Zollinger-Ellison Syndrome

Originally published 2016, updated October 2025 Background Some 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…

21 Nov 2024

By Ronny Allan

6 Comments

A spotlight on Multiple Endocrine Neoplasia (MEN)

Awareness, Living with Neuroendocrine CancerCDKN1B, Endocrine, Familial medullary thyroid cancer (FMTC), Genetics, Hereditary cancer syndrome, MEN1 syndrome, MEN2 syndrome, MEN2A syndrome, MEN2B syndrome, MEN4 syndrome, MEN5 syndrome, MENX, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Paraganglioma, Parathyroid gland, Pheochromocytoma, Pituitary gland

First published 2015, updated for 2025. Overview We 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…

19 Sep 2024

By Ronny Allan

5 Comments

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

GeneralAppendiceal NET, Familial medullary thyroid cancer (FMTC), Hereditary pheochromocytoma/paraganglioma syndromes, MEN1 syndrome, MEN2 syndrome, MEN2A syndrome, MEN2B syndrome, Neuroendocrine cancer, Paraganglioma, Pheochromocytoma, Von Hippel-Lindau (VHL) Syndrome

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…

14 Jun 2024

By Ronny Allan

16 Comments

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

A spotlight on NENs - Syndromes, Awareness5-HIAA, Achlorhydria, Adrenocorticotropic Hormone (ACTH), Alcohol, Angioma, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Carney-Stratakis syndrome (CSS), Cerebellum, Cushing's disease, Cushing's syndrome, Dermatitis, Diet, Familial medullary thyroid cancer (FMTC), Fat malabsorption, Functional tumour, Gastrinoma, Glucagon, Glucagonoma, Haemangioblastoma, Hedinger syndrome, Hereditary pheochromocytoma/paraganglioma syndromes, Hypercalcemia, Hypercortisolism, Hypokalemia, Insulinoma, Medullary thyroid cancer (MTC), MEN1 syndrome, MEN2 syndrome, MEN2A syndrome, MEN2B syndrome, NET syndromes, Neuroendocrine cancer, Non-functional tumour, Paraganglioma, Paraneoplastic syndromes, Pheochromocytoma, Pituitary gland, PPoma, SDHA, SDHAF2, SDHB, SDHC, Somatostatin analogues, Somatostatinoma, Surgery, Sweet's syndrome, The 5 E's, Verner-Morrison syndrome, VIPoma, Von Hippel-Lindau (VHL) Syndrome, Von Recklinghausen's disease, Wermer syndrome, Whipple's triad

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 be the difference between having a 'functional' condition or a non-functional' condition. This frequently makes NET …

11 Mar 2024

By Ronny Allan

25 Comments

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

Patient AdvocacyBlue Book, Cancer grading, Cancer staging, Carcinoid tumour, Differentiation, ENETS, Grade, High grade neuroendocrine tumour (NET), Intermediate grade NET, Ki-67, Large cell neuroendocrine carcinoma (LCNEC), Low Grade NETs, MEN1 syndrome, Mitotic count, Mitotic rate, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pathology, Poorly differentiated, Proliferative rate, Small cell neuroendocrine carcinoma (SCNEC), Stage, Surgery, TNM staging system, Well differentiated

Updated 1st April 2026 This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of for Digestive Systems is about to be published. You may see these important publications called 'Blue Books'. The main changes worth mentioning here is the addition of two new types of Gastric NETs - Types IV and V, a genetic mutation and PPI related respectively. A larger update will be added when the publication is available online. The WHO Classification of Endocrine and Neuroendocrine Tumours Words are very important in NENs To enable…

09 Oct 2023

By Ronny Allan

7 Comments

Neuroendocrine Cancer: Troublesome Thyroids (Updated 2026 Edition)

Awareness, Living with Neuroendocrine Cancer, Survivorship, TreatmentAnaplastic, Axillary nodes, Calcitonin, Calcium, Core Biopsy, Familial medullary thyroid cancer (FMTC), Fine needle aspiration (FNA), Follicular cell, Ga68 PET/CT, Graves’ disease, Hashimoto's disease, Hurthle cell neoplasm, Hyperthryroidism, Hypothyroidism, Levothyroxine, Medullary thyroid cancer (MTC), MEN1 syndrome, Multiple Endocrine Neoplasia (MEN), Overactive thyroid, Papillary thyroid cancer, Parathyroid gland, SCF node, Supraclavicularfossa, Thyroid, Thyroid cancer, Thyroid stimulating hormone (TSH), Thyroxine (T4), Triiodothyronine (T3), Underactive thyroid

Thyroid information disclaimerThis content is for general education and reassurance only. It is not a substitute for personalised medical advice, diagnosis, or treatment. Thyroid nodules, thyroid function tests, cytology categories (Bethesda/THY), and molecular tests (such as ThyroSeq, Afirma, or ThyroidPrint) all require interpretation by qualified clinicians who know your full medical history, imaging, pathology, and symptoms. Thyroid disease is common and highly individual. Most nodules are benign, and many thyroid abnormalities are incidental findings — especially in people who undergo frequent imaging. Decisions about biopsy, molecular testing, surgery, or surveillance should always be made with your endocrinologist, surgeon, or multidisciplinary…

24 Nov 2022

By Ronny Allan

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Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient AdvocacyCarney-Stratakis syndrome (CSS), Familial medullary thyroid cancer (FMTC), Genetics, Hereditary pheochromocytoma/paraganglioma syndromes, Medullary thyroid cancer (MTC), MEN1 syndrome, MEN2 syndrome, MEN2A syndrome, MEN2B syndrome, MEN4 syndrome, Neurofibromatosis type 1 (NF1), Paraganglioma, Pheochromocytoma, Tuberous sclerosis (TSC), Von Hippel-Lindau (VHL) Syndrome

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…

10 Sep 2022

By Ronny Allan

2 Comments

Awareness Post – Neuroendocrine Cancer in children and adolescents

Awareness, InspirationMEN1 syndrome, MEN2A syndrome, MEN2B syndrome, Multiple Endocrine Neoplasia (MEN), Neuroblastoma, Paraganglioma

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…

03 Mar 2022

By Ronny Allan

0 Comments

A Spotlight on Lung Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types SeriesAtypical carcinoid tumour, Atypical Lung NET, Combined Neuroendocrine Carcinoma, Cushing's syndrome, DIPNECH, Large cell neuroendocrine carcinoma (LCNEC), Lung NETs, MEN1 syndrome, Neuroendocrine carcinoma (NEC), Small cell lung cancer (SCLC), Syndrome of inappropriate antidiuretic hormone secretion (SIADH), Typical lung NET

WHO Classification of Tumours, 5th Edition, Volume 5: Thoracic Tumours The 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…

23 Dec 2020

By Ronny Allan

2 Comments

Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Clinical Trials and Research, Patient AdvocacyCancer of unknown primary (CUP), DNA, DNA methylation-based profiling, MEN1 syndrome, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Pathology, Von Hippel-Lindau (VHL) Syndrome

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…

15 Jun 2016

By Ronny Allan

4 Comments

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Awareness, Living with Neuroendocrine CancerCushing's disease, Cushing's syndrome, Endocrine, MEN1 syndrome, Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine, Neuroendocrine cancer, Parathyroid gland, Thymic NEN

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 -…

Tag: MEN1 syndrome