Tag: Carcinoid crisis

In the simplest of terms, it is a dangerous change in blood pressure, heart rate, and breathing (technical term – cardiopulmonary hemodynamic instability). On an operating table under anaesthetics or an invasive procedure such as liver embolization, this can actually be life threatening. Incidentally, this happens with many other types of conditions (hormones and peptides do exist in other illnesses). However, with a patient already oversecreting these hormones and peptides, it could be a life or death situation.

As this kind of incident can happen in other syndromes, there’s a push to rename this to Neuroendocrine Crisis or Hormonal Crisis

28 Apr 2025

1 Comment

The 6 E’s

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Anxiety, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Diet, Flushing, Hormones, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Somatostatin analogues

An opinion post When I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after…

Read More

18 Jan 2025

0 Comments

Ronny Allan – Every picture tells a story

Ronny Allan – Every picture tells a story

Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, TreatmentAdvanced neuroendocrine cancer, Afinitor, Anxiety, Biopsy, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Clinical trial, COVID-19, Diagnosis, Diarrhea, Diet, Everolimus, Flushing, Ga68 PET/CT, Hormones, Incurable cancer, Lanreotide, Lung NETs, Lutathera, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Octreotide, Octreotide scan, Pancreatic NET (PanNET), Paraganglioma, Peptide receptor radionuclide therapy (PRRT), Pheochromocytoma, Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Surgery

I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text. This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s),…

Read More

15 Jan 2025

28 Comments

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

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…

Read More

01 Dec 2024

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…

Read More

23 Nov 2024

4 Comments

Carcinoid – What’s in a name?

Carcinoid – What’s in a name?

AwarenessCarcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Carcinoma, Metastatic Neuroendocrine Cancer, Neoplasm, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Noid

A quick primer on the word 'CARCINOID'. It originates from the term 'Carcinoma-like'. 'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'. This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion. The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour. That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed…

Read More

10 Nov 2024

0 Comments

I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Patient Advocacy, TreatmentCarcinoid crisis, Carcinoid syndrome, Retroperitoneal Fibrosis, Right hemicolectomy, Small intestine NET (SI NET), Surgery, Terminal ileum

1 year after 2 x surgery - at a ball organised by my surgeon Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after surgery 14 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and…

Read More

08 Nov 2024

0 Comments

48 hours in November 2010 – Awareness and Hope from Ronny Allan

48 hours in November 2010 – Awareness and Hope from Ronny Allan

Awareness, Inspiration, Patient Advocacy, Survivorship, TreatmentCarcinoid crisis, Carcinoid syndrome, Debulking surgery, Retroperitoneal Fibrosis, Small intestine NET (SI NET)

D Day D for Diagnosis. I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would…

Read More

22 Oct 2024

6 Comments

Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, TreatmentAdrenal medulla, Adrenaline, Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, Cardiopulmonary hemodynamic instability, Catecholamines, Chromaffin cells, Cortisol, Epi pens, Epinephrine, Hormonal crisis, Hormones, Hypertension, Hypotension, Intraoperative hypertensive crisis, NET syndromes, Neuroendocrine tumour (NET), Norepinephrine, Pheochromocytoma, Pressor amines, Serotonin, Somatostatin analogues, The 5 E's, Thorson-Bioerck syndrome, Vasoactive amines, Vasoactive peptides

Update February 2026. Before you read this, please note: Why Practice Is Changing Faster Than the Guidelines Modern peri‑operative management for neuroendocrine tumours is evolving rapidly, and several factors explain why clinical practice in some expert centres has moved ahead of formal guidelines: 1. New evidence challenges long‑held assumptions Recent surgical series — most prominently from OHSU Portland USA — show that prophylactic octreotide does not reliably prevent carcinoid crisis and that crises behave more like distributive shock, responding better to vasopressors than to somatostatin analogues. This directly contradicts decades of dogma. 2. Guidelines update slowly by design Bodies such…

Read More

09 Oct 2024

11 Comments

Neuroendocrine Cancer – Liver directed therapy

Neuroendocrine Cancer – Liver directed therapy

TreatmentAdvanced neuroendocrine cancer, Arterial embolization, Bland liver embolization, Carcinoid crisis, Cryoablation, Drug-Eluting Beads DEB-TACE, High-intensity focused ultrasound (HIFU), Hormonal crisis, Liver directed therapy, Liver embolization, Liver metastases, Metastatic Neuroendocrine Cancer, Radioembolization, Selective Internal Radiotherapy (SIRT), Trans arterial embolization (TAE), Transarterial chemo embolization (TACE), Transarterial radioembolization (TARE)

October 2024. Updated to include Drug-Eluting Beads TACE Neuroendocrine Neoplasms (NENs) present complex challenges to diagnosis and treatment. Even in metastatic cases spreading to the liver, there are some important differences compared to the more common types of gastrointestinal tumours and pancreatic adenocarcinomas, e.g. their sometimes-indolent nature and their ability to oversecrete hormones causing distinct clinical syndromes. Also, the tumours are known to be highly vascular which is a feature where growth inhibition and symptom relief may be achieved by specific 'blocking' agents - this is particularly the case with liver metastases in well-differentiated Neuroendocrine Tumours (NETs). Spread to the…

Read More

01 Sep 2024

20 Comments

Telotristat Ethyl (XERMELO) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues

Telotristat Ethyl (XERMELO) – an oral treatment for Carcinoid Syndrome Diarrhea not adequately controlled by Somatostatin Analogues

TreatmentCarcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Diarrhea, Hedinger syndrome, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Serotonin, Somatostatin analogues, Telotristat ethyl (Xermelo), TPH1, TPH2, Tryptophan hydroxylase (TPH), Xermelo (Telotristat ethyl)

Republished and reformatted and reviewed 1st September 2024. Original published 31st March 2016. What is Telotristat Ethyl? Telotristat Ethyl is a significant introduction to the treatment of Carcinoid Syndrome diarrhea. It's the first addition to the standard of care in more than 16 years and the first time an oral syndrome treatment has been developed. The drug was previously known as Telotristat Etiprate but was changed to Ethyl in Oct 2016. 'Etiprate' was previously a truncation of 'ethyl hippurate'. The brand name is XERMELO® Who is the drug for? The drug may be of benefit to those whose carcinoid syndrome diarrhea is not adequately…

Read More

27 Aug 2024

5 Comments

The 5 E’s (of Carcinoid Syndrome)

The 5 E’s (of Carcinoid Syndrome)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment5-HIAA, Alcohol, Alcohol flushing reaction, Carbocaine, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Diet, Epinephrine, Ethanol, Flushing, Hypertension, Intraoperative hypertensive crisis, Lanreotide, Liver metastases, Malabsorption, Marcaine, NET syndromes, Novocaine, Octreotide, Paraganglioma, Pheochromocytoma, Probiotic, Surgery, Syndrome, The 5 E's

The 5 Es was a good idea but the boundary was never properly defined. I don't believe it applies to all NETs (including patients) and I don't believe it is necessarily confined to carcinoid syndrome Original Post Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid…

Read More

21 Jul 2024

9 Comments

Neuroendocrine Cancer: The Perfect Storm

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid crisis, Carcinoid syndrome, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UKAs featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation)It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed. I'm one of the lucky ones, even though I still ended up with distant metastases. It does feel odd to say that having distant metastasis is lucky!I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's the route for…

Read More

07 Jul 2024

7 Comments

Please flush after use!

Please flush after use!

Awareness, Diet and Nutrition, Humour, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipBowel obstruction, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Flushing, Inflammatory bowel disease (IBD), Loperamide hydrochloride, Quality of LIfe (QoL), Stomach cramp, Surgery

Early in my journey, I was in a public toilet, the sign said "Please flush after use". I tried my hardest but my face would not turn red. I then clicked what the sign meant! OK, that did not happen but it does make for a good intro to the blog title. Over the years, I've read so many stories and answered so many questions about the quite natural act of using a toilet (.....some more repeatable than others). I think if there were a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours. I jest, clearly,…

Read More

14 Jun 2024

16 Comments

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

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 …

Read More

12 Jun 2024

4 Comments

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdrenaline, Amines, Ascending colon, Biogenic amines, Carcinoid crisis, Carcinoid syndrome, Catecholamines, Diet, Dopamine, Histamine, Hormones, Malabsorption, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Pressor amines, Probiotic, Quality of LIfe (QoL), Right hemicolectomy, Serotonin, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET), Somatostatin analogues, Surgery, Tryptophan, Tyramine, Vasoactive amines

Reviewed and updated 23rd January 2024 Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought? Background Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (listed below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another. Often the the best diet…

Read More

20 Apr 2024

41 Comments

Carcinoid vs Neuroendocrine

Carcinoid vs Neuroendocrine

Awareness, Patient AdvocacyAppendiceal NET, Benign tumour, Carcinoid, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, ENETS, Gastric NET, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Gastrointestinal NET (GI-NET), Hedinger syndrome, Karzinoide, Lung NETs, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Pathology, Pheochromocytoma, Rectal NET, Serotonin, Siegfried Oberndorfer, Small intestine NET (SI NET), World Health Organisation (WHO)

There's a constant debate regarding the validity of the term 'Carcinoid'. I've posted about this a few times and as far as I know, the debate has been raging for some years. This post was originally generated in April 2015 (and hasn't changed that much!). EDIT MARCH 2024. There is now a consolidated Endocrine/Neuroendocrine Tumour classification system (Blue Book). Still in print but you can see a summary of changes by clicking here. This change should provide some leverage to Neuroendocrine committees particularly about what things should be called. EDIT MARCH 2022. The latest classification system for Lung Neuroendocrine Neoplasms…

Read More

15 Apr 2024

8 Comments

Surgery – the gift that keeps on giving

Surgery – the gift that keeps on giving

Survivorship, TreatmentCarcinoid crisis, Carcinoid syndrome, Carcinoid tumour, Debulking surgery, Hotspot, Liver metastases, Right hemicolectomy, SI NET, Small intestine NET (SI NET), Surgery, Vascular

I first wrote this article in December 2014. My thoughts went back to my first surgery in 2010 when I was discharged 4 weeks before Christmas.I had been diagnosed with metastatic Neuroendocrine Cancer in July 2010 having been told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking can confer some survival advantage. Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by…

Read More

22 Mar 2024

15 Comments

Neuroendocrine Cancer – Horrible Hormones

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…

Read More

29 Jan 2024

4 Comments

Do we need a new model for Carcinoid Crisis in NETs?

Do we need a new model for Carcinoid Crisis in NETs?

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Anesthesia, Carcinoid crisis, Carcinoid syndrome, Cardiopulmonary hemodynamic instability, Distributive shock, Epinephrine, Octreotide, Vasosuppressors

Update February 2026. Before you read this, please note: Why Practice Is Changing Faster Than the Guidelines Modern peri‑operative management for neuroendocrine tumours is evolving rapidly, and several factors explain why clinical practice in some expert centres has moved ahead of formal guidelines: 1. New evidence challenges long‑held assumptions Recent surgical series — most prominently from OHSU Portland USA — show that prophylactic octreotide does not reliably prevent carcinoid crisis and that crises behave more like distributive shock, responding better to vasopressors than to somatostatin analogues. This directly contradicts decades of dogma. 2. Guidelines update slowly by design Bodies such…

Read More

20 Nov 2023

0 Comments

Neuroendocrine Cancer – Clinical Esoterica

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…

Read More

10 Nov 2023

10 Comments

I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment5-HIAA, Biopsy, Carcinoid crisis, Carcinoid syndrome, Diarrhea, Flushing, Hormones, Neuroendocrine cancer, Octreotide, Octreotide soak, Somatostatin analogues, Surgery

1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery 15 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. …

Read More

07 Nov 2023

2 Comments

8th November 2010 – on the way to hospital for surgery, alert the crash team!

8th November 2010 – on the way to hospital for surgery, alert the crash team!

TreatmentAdvanced neuroendocrine cancer, Carcinoid crisis, Carcinoid syndrome, Octreotide, Octreotide soak, Surgery

The Journey to the Hospital on 8th November didn’t go smoothly!I had to be admitted to hospital for my surgery on 8th Nov 2010, but the surgery was not taking place until 9th November. The technical reason for that is explained further below. Not a good start, 13 years ago today, Chris was driving me to the hospital for my first surgery, the "my big surgery" as I call it. It was "debulking" i.e. get as much as possible. In the end, the liver was left for another day.I had been working since being diagnosed and was still sending work emails…

Read More

31 Oct 2019

9 Comments

Neuroendocrine Cancer: Double, Double Toil and Trouble

Neuroendocrine Cancer: Double, Double Toil and Trouble

AwarenessAdvanced neuroendocrine cancer, Carcinoid crisis, Carcinoid syndrome, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Thorson-Bioerck syndrome

Double Neuroendocrine Cancer is a complex and difficult disease to diagnose, many people struggle with symptoms for some time before they are formally diagnosed. Some continue to struggle after diagnosis. There are many facets that can confound a physician - at diagnosis and beyond. Double Toil If it's not enough just to have tumours growing inside your body, this cancer can also be uncannily quiet delaying diagnosis. At the same time, the tumours can still be 'functional' and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart…

Read More

30 Oct 2018

9 Comments

Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew

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…

Read More

19 May 2017

5 Comments

ASCO 2017 – Let’s talk about NETs #ASCO17

ASCO 2017 – Let’s talk about NETs #ASCO17

Clinical Trials and Research5-HIAA, Advanced neuroendocrine cancer, American Society of Clinical Oncology (ASCO), Bone metastases, Cancer of unknown primary (CUP), CAPecitabine TEMozolomide (CAPTEM)., Carcinoid crisis, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, Chromogranin A (CgA), CLARINET, Comorbidity, DUNE trial, Durvalumab, ELECT study, Flushing, Ga68-OPS202, Grading, Hormones, Incurable cancer, Ki-67, Lanreotide, Liver metastases, Metastatic Neuroendocrine Cancer, Molecular markers, NETest, Neuroendocrine, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Pancreatic NET (PanNET), Peptide receptor radionuclide therapy (PRRT), Poorly differentiated, Pre-existing condition, PRRT, Quality of LIfe (QoL), Small intestine NET (SI NET), Somatostatin analogues, Stage, Surgery, Theranostics, Well differentiated

ASCO (American Society of Clinical Oncology) is one of the biggest cancer conferences in the world normally bringing together more than 30,000 oncology professionals from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field. As Neuroendorine Tumors is on a roll in terms of new treatments and continued research, we appear to be well represented with over 20 'extracts' submitted for review and display. This is fairly complex stuff but much of it will be familiar to many. I've filtered and extracted all the Neuroendocrine stuff into one list providing you with an…

Read More

01 Apr 2017

1 Comment

NETwork with Ronny © – Newsletter March 2017

NewslettersCarcinoid crisis, ENETS, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT, Telotristat ethyl (Xermelo)

Hi NETworkers! Welcome to my fifth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). The highlight of the month was my attendance at the first ever Joint Patient-Physician symposium at ENETS Barcelona. I remain thankful to INCA for the honour of attending and for the experience that came with it. It was also great to finally meet other NET advocates face to face for the first time. Some of them have been great supporters since the inception of my blog and community. March was a slower month in blogging terms due to…

Read More

01 Mar 2017

9 Comments

NETwork with Ronny © – Newsletter February 2017

NETwork with Ronny © – Newsletter February 2017

NewslettersCarcinoid crisis, ENETS, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT, Surgery, Telotristat ethyl (Xermelo)

Hi NETworkers! Welcome to my fourth 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). February was a slower month in blogging terms due to a major increase in contact from people privately asking for advice and others asking me to support external projects. I don't have an issue with private contact but please note my disclaimer. I also had a winter cold for a few days, so I relaxed a bit. Only a short month but I managed to accumulate the second biggest monthly blog views ever (January 2017 will be difficult to beat). Thank you all so much ♥ January's success…

Read More

01 Feb 2017

6 Comments

NETwork with Ronny © – Newsletter January 2017

NETwork with Ronny © – Newsletter January 2017

NewslettersCarcinoid crisis, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), PRRT

Hi NETworkers! Welcome to my third 'community' newsletter, the monthly summary of NET news, views and ICYMI (in case you missed it!). January was a month for breaking records. I recorded the biggest ever amount of views in any one day, any one week and now any one month and it will probably be a long time before they're broken again! This was mainly due to the fantastic support you showed for one particular blog post The Anatomy Of Neuroendocrine Cancer. Thank you all so much ♥ January was also a month for making new friends after being invited to speak to an…

Read More

27 Jan 2017

2 Comments

Endoscopy for NETs – taking the camera to the tumour

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Biopsy, Bronchoscopy, Camera pill, Capsule endoscopy, Carcinoid crisis, Carcinoid tumour, CLO test, Colonoscopy, Endoscopic retrograde cholangiopancreatography (ERCP), Endoscopic ultrasound (EUS), Endoscopy, Gastroscopy, Helicobacter pylori, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic cancer, Sigmoidoscopy, Surgery

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom. The mouth route is more accurately called a Gastroscopy…

Read More

01 Jan 2017

3 Comments

NETwork with Ronny © – Newsletter December 2016

NewslettersCarcinoid crisis, Lanreotide, Lung NETs, Lutathera, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide, Pheochromocytoma, PRRT, Somatostatin analogues

Hi NETworkers! Welcome to my second 'community' newsletter, the monthly summary of NET news in Dec 2016, views and ICYMI (in case you missed it!). December was a particularly special month. For the previous 3 months, I had been busily working behind the scenes and on my various social media presences to put on a good show for the 2016 WEGO Health Activist Awards. This paid off and I won the Best in Show 'Community' category in addition to being shortlisted as one of 5 finalists in the blog category. The community award was special because it means we all won the award as…

Read More

Our website use cookies to improve and personalize your experience and to display advertisements(if any). Our website may also include cookies from third parties like Google Adsense, Google Analytics, Youtube. By using the website, you consent to the use of cookies. We have updated our Privacy Policy. Please click on the button to check our Privacy Policy.

Ok, I Agree