Cushing's syndrome Archives

04 May 2026

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Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs)

A spotlight on NENs, A spotlight on NENs - Types, Patient Advocacy, Spotlight on NENs - Types SeriesAtypical carcinoid tumour, Atypical Thymic NET, Carcinoid, Carcinoid syndrome, Cushing's syndrome, MEN1 syndrome, Thymic NEN, Thymic Neuroendocrine Carcinoma (NEC), Typical Carcinoid, Typical Thymic NET

Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment. Thymic Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here. Always discuss your own situation, test results, and treatment options with your specialist team, including your thoracic, oncology, endocrine, or NET multidisciplinary team (MDT). If you have concerns about symptoms, progression, or treatment decisions, please seek guidance from your clinical team without delay. Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs) A rare but important member of the NEN…

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…

10 Oct 2024

By Ronny Allan

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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

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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 …

15 May 2024

By Ronny Allan

7 Comments

Carcinoid Syndrome – chicken or egg?

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyCarcinoid syndrome, Carcinoid tumour, Chemotherapy, Cushing's syndrome, Gastrin, Glucagon, Insulin, Lanreotide, Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Pancreatic polypeptide (PP), Somatostatin, Vasoactive intestinal peptide (VIP), Zollinger-Ellison Syndrome

We’ve all heard the age-old question about the chicken and the egg? Scientists claimed to have 'cracked' the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken's ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it! On a similar subject, I'm often confused when someone says they have been diagnosed with 'Carcinoid Syndrome' but not one of associated 'Neuroendocrine Tumours' - my instinct says that is…

22 Mar 2024

By Ronny Allan

15 Comments

Neuroendocrine Cancer – Horrible Hormones

Patient Advocacy24-hour urinary catacholamines and metanephrines, 5-HIAA, 5-Hydrotryptophan (5-HTP), Addison's disease, Adrenal insufficiency, Adrenaline, Adrenocorticotropic Hormone (ACTH), Aldosterone, Anaphylactic shock, Androgrens, Antihistamines, Appendiceal NET, Bradykinin, Calcitonin, Calcitonin gene-related peptide (CGRP), Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Catecholamines, Chromogranin A (CgA), Corticotrophin releasing hormone (CRH), Cushing's disease, Cushing's syndrome, Diarrhea, Endocrine, Enterochromaffin cells, Epinephrine, Estrogen, Fight or flight, Flushing, Ga68 PET/CT, Gastric NET, Gastrin, Glucagon, Histamine, Hormones, HPA axis, Hyperparathyroidism, Hypocortisolism, Hypotension, Hypothalamus, Insulin, Intraoperative hypertensive crisis, Islet cell, Islet of Langerhams, Kallikrein, Lanreotide, Lung NETs, Malabsorption, Mast cell, Medullary thyroid cancer (MTC), Metanephrines, Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine, Neuroendocrine neoplasm (NEN), Neurokinin A (NKA), Neuropeptide K, Neurotensin, Neurotransmitter, Norepinephrine, Nutrition, Octreotide, Octreotide scan, Ovarian NEN, Pancreastatin, Pancreatic NET (PanNET), Pancreatic polypeptide (PP), Paraganglioma, Pellagra, Peptide, Pheochromocytoma, PPoma, Prostaglandin, Pruritus, Serotonin, Somatostatin, Somatostatinoma, Substance P, Tachycardia, Tachykinin, Telotristat ethyl (Xermelo), Testosterone, The 5 E's, Tryptophan, Vasoactive intestinal peptide (VIP), Vasodilation, VIPoma, Xermelo (Telotristat ethyl)

Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos! Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you…

03 Mar 2022

By Ronny Allan

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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

Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment. Lung Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here. Always discuss your own situation, test results, and treatment options with your specialist team, including your thoracic, oncology, endocrine, or NET multidisciplinary team (MDT). If you have concerns about symptoms, progression, or treatment decisions, please seek guidance from your clinical team without delay. This 2026 updated spotlight summarises the latest understanding of Lung Neuroendocrine Neoplasms (NENs), including terminology,…

28 Jul 2020

By Ronny Allan

3 Comments

Paraneoplastic Syndromes – the NET Effect

Patient Advocacy, Survivorship, The NET Effect SeriesAcromegaly, Cushing's syndrome, Ectopic Cushing’s syndrome (ECS), Hypercalcemia, Hyperglycemia, Hypoglycemia, Neurologic paraneoplastic syndromes, Paraneoplastic syndromes, Syndrome of inappropriate antidiuretic hormone secretion (SIADH)

Although several hypotheses have been proposed regarding the pathogenesis of Paraneoplastic Syndromes (PNS), the precise mechanism that leads to the development of PNS remains largely unknown. In simple terms, pathogenesis means "the manner of development of a disease". Disclaimer. I read widely and noted various papers where there was clearly confusion about the classification of paraneoplastic in relation to Neuroendocrine Neoplasms. Some papers grouped known Neuroendocrine Tumour hormonal syndromes in, but others were more specific by filtering these into ectopic scenarios. I eventually filtered out papers based on the expertise of the authors and the common threads running in each…

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 -…

04 Apr 2016

By Ronny Allan

3 Comments

Somatostatin Analogues and delivery methods in the pipeline

Awareness, Clinical Trials and Research, Living with Neuroendocrine CancerAcromegaly, Adrenocorticotropic Hormone (ACTH), Bynfezia Pen, COR-003, COR-005, Cortisol, CRN01941, Cushing's disease, Cushing's syndrome, DP1038, Everolimus, Flushing, Generic drugs, Growth hormone (GH), Hypercortisolism, Insulin-like growth factor 1 (IGF-1), Lanreotide, Levoketoconazole (Recorlev), MTD201, MYCAPSSA , Neuroendocrine cancer, Neuroendocrine tumour (NET), Octreotide, Octreotide-RP, Pasireotide, Q-Octreotide, RECORLEV (levoketoconazole), SIGNIFOR® (Pasireotide), SOM230, Somatoprim, Somatostatin receptors (SSTR)

NOTE - THIS IS IN NEED OF AN UPDATE AND IS ON MY LIST OF THINGS TO DOThis is my live blog post covering new developments in the area of new Somatostatin Analogues and new delivery systems. AbstractAs most of you will be aware, there are currently two main types of Somatostatin Analogues (SSA) in use for the treatment of mainstream Neuroendocrine Tumours (NETs) - Octreotide and Lanreotide. You can click on the links for information on both of these well-known NET treatments. This post will focus on the not so well known and anything in the pipeline including different delivery…

Tag: Cushing’s syndrome

The role of corticosteroid medications (exogenous Cushing syndrome)

Your body’s own overproduction (endogenous Cushing syndrome)

Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs)

Neuroendocrine Cancer: Functional vs Non-functional

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

Weight – the NET Effect

Diabetes – The NET Effect

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

Carcinoid Syndrome – chicken or egg?

A Spotlight on Lung Neuroendocrine Neoplasms

Paraneoplastic Syndromes – the NET Effect

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Somatostatin Analogues and delivery methods in the pipeline