Insulinoma 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…

22 Mar 2025

By Ronny Allan

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Neuroendocrine Cancer: Functional vs Non-functional

A spotlight on NENs - Syndromes, Patient Advocacy, Spotlight on NENs - Types SeriesCarcinoid syndrome, Cushing's syndrome, Ectopic Cushing’s syndrome (ECS), Functional tumour, Gastrinoma, Glucagonoma, Insulinoma, NET syndromes, Non-functional tumour, Somatostatinoma, VIPoma

The terms functional and non-functional come up a lot in documents describing Neuroendocrine Cancer. They also feature highly in patient groups. But what do these terms actually mean? Functional / Non-FunctionalNeuroendocrine Tumours are treatable for most but the difficult part can be arriving at a diagnosis. Moreover, some Neuroendocrine Tumours (NETs) can be silently growing and as they grow slowly, the 'silence' can go on for some years. Even with a syndrome, the root cause can remain disguised as the symptoms are similar to many day-to-day illnesses. There can be the odd exception but in general terms, NETs are either functional (with…

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…

15 Jan 2025

By Ronny Allan

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Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

TreatmentAdvanced neuroendocrine cancer, Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, ELECT study, Flushing, Gastrinoma, Glucagonoma, Hormones, Insulinoma, Lanreotide, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Quality of LIfe (QoL), Somatostatin analogues, Somatuline Autogel (US: depot), VIPoma

Updated and reviewed 15th January 2025. Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved. So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone over secretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors. They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there are always outliers where such effects are displayed. Somatostatin is actually a naturally…

01 Dec 2024

By Ronny Allan

23 Comments

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…

10 Oct 2024

By Ronny Allan

5 Comments

Weight – the NET Effect

Diet and Nutrition, Survivorship, The NET Effect SeriesCarcinoid syndrome, Carcinoid tumour, Cushing's disease, Cushing's syndrome, Diabetes, Gastrinoma, Hemoglobin, Hypercortisolism, Hyperthryroidism, Hypothyroidism, Insulinoma, Iron Deficiency Anaemia, Lanreotide, Levothyroxine, Malabsorption, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Pheochromocytoma, Quality of LIfe (QoL), Somatostatin analogues, Somatostatinoma, Surgery, VIPoma, Zollinger-Ellison Syndrome

Foreword After my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment. Fast forward 4 years, I had to buy some more suits as my weight was going back on. Fast forward 14 years and…

24 Jul 2024

By Ronny Allan

3 Comments

Diabetes – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, The NET Effect SeriesAdrenocorticotropic Hormone (ACTH), Afinitor, Blood glucose, Cortisol, Cushing's syndrome, Diabetes, Distal pancreatectomy, Everolimus, Exocrine function (pancreas), Glucagon, Glucagonoma, Glycated Hemoglobin (A1C), HbA1c, Hyperglycemia, Hypoglycemia, Insulin, Insulinoma, Lanreotide, NET syndromes, Octreotide, Pancreas, Pancreatic enzyme replacement therapy (PERT), Pancreatogenic diabetes, Pancreoprivic diabetes, Prediabetes, Somatostatin analogues, Somatostatinoma, Sunitinib (Sutent), Total pancreatectomy, Type 1 diabetes, Type 2 diabetes, Type 3c diabetes, Type 3c diabetes mellitus (T3cDM), Whipple procedure

Updated January 2026Originally published September 2018. My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream. Bubbling behind the scenes and clamouring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes with a score…

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 …

20 Nov 2023

By Ronny Allan

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Neuroendocrine Cancer – Clinical Esoterica

AwarenessCarcinoid crisis, Carcinoid syndrome, Desmoplasia, Gastrinoma, Glucagonoma, Hedinger syndrome, Hormones, Incurable cancer, Insulinoma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Paraganglioma, Pheochromocytoma, PPoma, Serotonin, Somatostatinoma, Thorson-Bioerck syndrome, Vasoactive intestinal peptide (VIP), Verner-Morrison syndrome, VIPoma, Whipple's triad, Zollinger-Ellison Syndrome

One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after. Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In addition to common symptoms of flushing and diarrhea, others include…

29 Oct 2023

By Ronny Allan

2 Comments

European Neuroendocrine Tumor Society 2023 guidance paper for functioning pancreatic neuroendocrine tumour syndromes

Latest ENETS GuidelinesACTHoma, Calcitoninoma, Carcinoid syndrome, Functional tumour, Gastrinoma, GHRHoma, Glucagonoma, Insulinoma, Pancreatic NET (PanNET), PPoma, PTHrPoma, Somatostatinoma, VIPoma

There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places. In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009. But underneath that are some excellent MDTs not yet accredited who may still utilise ENETs guidelines to treat and manage their patients. This 2023 guideline paper sets the scene for an important and complex group of tumours - pancreatic NETs. It's well known and accepted that the minority of pancreatic…

24 Apr 2023

By Ronny Allan

5 Comments

The NET Detectives

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Gastrinoma, Glucagonoma, Insulinoma, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), PPoma, Somatostatinoma, Vasoactive intestinal peptide (VIP), VIPoma

The NET Detectives is an awareness post. Detecting NETs In general, it's probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary. In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don't have a range of imaging devices on site, referrals are often necessary to investigate more. I don't believe it's right to say this referral is a misdiagnosis, it's just another stage in…

12 Dec 2022

By Ronny Allan

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Stereotactic body radiation therapy (SBRT) in the treatment of Neuroendocrine Neoplasms

Clinical Trials and Research, TreatmentClinical trial, Ectopic Cushing’s syndrome (ECS), Glucagonoma, Insulinoma, Lung NETs, Pancreatic NET (PanNET), Stereotactic body radiotherapy (SBRT)

What is Stereotactic Body Radiation Therapy (SBRT)? External beam radiotherapy has been around for decades, but the technology has evolved dramatically. Today’s treatments involve new techniques, new machines, and new imaging methods, and these terms are often mixed together in ways that confuse patients. When people talk about “SBRT,” “CyberKnife,” or “Proton Beam,” they are often referring to completely different layers of radiotherapy — a technique, a platform, or a type of radiation. Some names are even brand‑specific. Understanding which layer each term belongs to makes the whole field much easier to navigate. SBRT is an external beam radiotherapy technique,…

30 Oct 2018

By Ronny Allan

9 Comments

Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew

AwarenessCarcinoid crisis, Carcinoid syndrome, Desmoplasia, Gastrinoma, Glucagonoma, Hedinger syndrome, Hormones, Incurable cancer, Insulinoma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Paraganglioma, Pheochromocytoma, PPoma, Serotonin, Somatostatinoma, Thorson-Bioerck syndrome, Vasoactive intestinal peptide (VIP), Verner-Morrison syndrome, VIPoma, Whipple's triad, Zollinger-Ellison Syndrome

It’s a difficult disease to diagnose, e.g. many people struggle with undiagnosed syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Many continue to struggle after. They hide in plain sight – sometimes the syndromes can provide clues ……… but they can still fool your doctors. Let's change that with more awareness which can lead to earlier diagnosis. Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In…

05 Oct 2016

By Ronny Allan

20 Comments

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Survivorship, TreatmentAlternative medicine, Diet, Glucagon, Glucagonoma, Hypoglycemia, Insulinoma, Liver metastases, Metastatic Neuroendocrine Cancer, Neuroendocrine, Nutrition, Pancreatic cancer, Pancreatic NET (PanNET)

Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That's interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary - click here to read…

Tag: Insulinoma