A spotlight on NENs Archives

26 Apr 2026

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Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)

A spotlight on NENs, A spotlight on NENs - Types, Patient AdvocacyCarcinoid heart disease, Carcinoid syndrome, Hedinger syndrome, Ileum, Jejunum, Mesenteric Fibrosis, Retroperitoneal Fibrosis, Small intestine NET (SI NET), Terminal ileum

DisclaimerThis Spotlight is for general education and reassurance only. It cannot replace personalised advice from your own medical team, who understand your individual history, imaging, pathology, and treatment needs. Neuroendocrine tumours vary widely in behaviour, presentation, and management, and guidance may evolve as new evidence emerges. If you have questions about your diagnosis, symptoms, or treatment plan, please discuss them directly with your specialist NET team. Small intestine neuroendocrine neoplasms (siNENs) - (Jejunum + ileum — excluding duodenum) Small intestine neuroendocrine neoplasms (siNENs) arise in the mid‑gut, specifically the ileum and jejunum. These two segments form the core of “small intestine…

23 Apr 2026

By Ronny Allan

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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…

24 Jul 2025

By Ronny Allan

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My NET is different than yours

A spotlight on NENs, Awareness, Living with Neuroendocrine CancerCarcinoid syndrome, Carcinoid tumour, Heterogeneity, Heterogeneous, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

When you manage a large support group, you see a lot of posts. Many of them highlight a lack of knowledge about the heterogeneity of Neuroendocrine Neoplasms. The issue is not always with those answering the question but often it is the person asking the question. Sometimes intervention is needed to focus responses. So, what are the key issues? Read on..... If you read any authoritative source on this cancer, it will normally begin with “Neuroendocrine Neoplasms (NENs) are heterogeneous tumours ………….” “Heterogeneous” means consisting of dissimilar parts or elements, essentially meaning “mixed” or “diverse,” but I used the term…

26 Feb 2025

By Ronny Allan

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Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma

A spotlight on NENs, Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Blue Book, Carcinoid syndrome, Carcinoid tumour, Cushing's syndrome, Diagnosis, Ectopic Cushing’s syndrome (ECS), Gastrinoma, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Glucagonoma, Hormones, Incurable cancer, Insulinoma, Metastatic Neuroendocrine Cancer, Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN), NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Somatostatinoma, VIPoma

The riddle.For many years, I've been reading and blogging about Neuroendocrine Neoplasms, NENs for short. NEN is a relatively new term which came after my diagnosis. Nomenclature is still evolving and there is always something to learn. It's also true to say the term 'Neuroendocrine Neoplasms' is the same as saying 'Neuroendocrine Cancer'. These neoplasms are cancers that begin in specialised cells called 'neuroendocrine cells'. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells, particularly the latter. In face one NET specialist said "While the name “neuroendocrine” implies that these tumors involve both nerve cells and…

03 Dec 2023

By Ronny Allan

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A Spotlight on NET Syndromes – Carcinoid Syndrome

A spotlight on NENs, A spotlight on NENs - SyndromesCarcinoid syndrome, Diarrhea, Flushing

What is Carcinoid Syndrome? Carcinoid syndrome (CS) is the most frequent hormonal complication accompanying neuroendocrine neoplasms (NENs) and is defined by chronic diarrhoea and/or flushing in the presence of systemic elevated levels of serotonin or its metabolite 5-hydroxyindolacetic acid (5-HIAA). Importantly, other causes of these symptoms should be considered and investigated depending on the clinical presentation. CS is predominantly encountered in patients with well-differentiated NENs (neuroendocrine tumours, NETs) of intestinal origin, followed by lung NETs, and only in a minority of patients with pancreatic, ovarian, thymic, or unknown origin NETs. The main symptoms defining CS are skin flushing, secretory diarrhoea, bronchospasm, or…

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