Tag: Carcinoid syndrome

A syndrome connected with (mainly) serotonin secreting tumours in certain locations (mainly small intestine, lung, stomach, appendix, rectum). The key symptoms include diarrhoea, flushing of the skin (particularly the face), stomach cramping, heart problems such as palpitations, and wheezing. The syndrome is actually caused by the release of a number of hormones, in particular Serotonin, Bradykinin, Tachykinin (Substance P), Histamine, and Prostaglandins.

Carcinoid syndrome occurs when biologically active amines and peptides enter the systemic circulation escaping the first pass metabolism of the liver. Normally, these bioactive products are inactivated by the liver. However, in cases of neuroendocrine tumors with liver metastasis, either these bioactive products are directly released into the systemic circulation, or they escape inactivation due to deranged liver function.

01 Jul 2024

4 Comments

Neuroendocrine Cancer: No one gets it until they get it!

Neuroendocrine Cancer: No one gets it until they get it!

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

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous group of cancers ranging from some quite indolent versions…

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29 Jun 2024

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Pancreatic NET with carcinoid syndrome – not as common as you think

Pancreatic NET with carcinoid syndrome – not as common as you think

Patient AdvocacyCarcinoid syndrome, Diarrhea, Flushing, Pancreatic NET (PanNET)

Why do I need to write about this? I've been watching confusion surrounding symptomatic pancreatic NETs for years and it never ceases to amaze me that people automatically think "carcinoid syndrome". Despite the fact that pancreatic NETs were never included in the category of "carcinoid tumours"; and despite the fact that there are at least 6 or 7 known pancreatic NET hormonal syndromes, this myth persists. Don't misunderstand me though, a serotonin secreting pancreatic NET is possible, it's just not nearly as common as it's made out in patient groups and on some websites. It's a highly unusual scenario. Why…

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27 Jun 2024

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Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, C‑Reactive Protein (CRP), Coeliac disease, Cognitive behavioural therapies (CBT), Constipation, Erythrocyte sedimentation rate (ESR), Gastroenterologist, Haemoglobin (hemoglobin), Hormones, IBS-C, IBS-D, IBS-M, Incomplete emptying, Irritable bowel syndrome (IBS), Metastatic Neuroendocrine Cancer, Misdiagnosis, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL)

Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (irritable bowel syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs. I see it mentioned on my site a lot, often by people who are quite irritated (pun intended) by a previous diagnosis which perhaps should have led to their actual diagnosis of NET. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future? In preparation for writing this blog post, I…

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22 Jun 2024

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Neuroendocrine Cancer: Those who know, know!

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Quality of LIfe (QoL)

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions…

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21 Jun 2024

7 Comments

Neuroendocrine Cancer – not average, just mean

Neuroendocrine Cancer – not average, just mean

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Chemotherapy, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Prognosis, Quality of LIfe (QoL), Remission, Somatostatin analogues

Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene. Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of…

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20 Jun 2024

21 Comments

Somatostatin Receptors

Somatostatin Receptors

Awareness, TreatmentCarcinoid syndrome, Carcinoid tumour, Gamma camera, Hormones, Lanreotide, Octreotide, Octreotide scan, Pasireotide, Peptide receptor radionuclide therapy (PRRT), PRRT, Radiolabelled somatostatin analogue, SIGNIFOR® (Pasireotide), Somatostatin analogues, Somatostatin receptors (SSTR), Standardised uptake value (SUV), Yttrium 90 (Y90)

Don't understand Somatostatin Receptors? Join the club! I got my head around the term 'Somatostatin' and 'Somatostatin Analogues' some time ago but the term 'Somatostatin Receptor' (SSTR) is still a bit of a mystery. SSTRs do come up in conversation quite often and I'm fed up of nodding sagely hoping it will eventually become clear! On analysis it looks like a technical subject - and therefore a challenge. I've taken a logical approach working from 'Somatostatin' to 'Somatostatin Analogue' before commencing on the 'receptor' bit. It is intentionally brief and (hopefully) simplistic! Somatostatin It's important to understand this hormone and…

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14 Jun 2024

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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 …

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12 Jun 2024

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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…

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11 Jun 2024

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Neuroendocrine Cancer: My 15 year experience with Lanreotide Ipsen

Neuroendocrine Cancer: My 15 year experience with Lanreotide Ipsen

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment5-HIAA, Advanced neuroendocrine cancer, Butt dart, Carcinoid syndrome, CLARINET, Diabetes, Flushing, Granulinoma, Hormones, Lanreotide, Lung NETs, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Octreotide, Octreotide scan, Peptide, Somatostatin analogues, Somatuline Autogel (US: depot), SPINET, Surgery

On 9th December 2025, I celebrated 15 years of Lanreotide - click here to read about that. Update 12th May 2026. I received injection number 200! Click here to read more. Update 11th Jan 2024. Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen. Clearly to distinguish its product from the generics now rolling out. Not seen similar yet for Somatuline Depot (US). Please note the remainder of this blog covers Lanreotide Ipsen, generics are covered here. My Lanreotide Experience When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be…

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03 Jun 2024

8 Comments

Living with Cancer – Turning points

Living with Cancer – Turning points

Awareness, Inspiration, Living with Neuroendocrine CancerCarcinoid syndrome, Hypothyroidism, Lanreotide, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Thyroid

In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of 'Hadrian's Wall' in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more. A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the…

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29 May 2024

7 Comments

I bet my flush beats yours?

I bet my flush beats yours?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment5-HIAA, Bradykinin, Broken capillaries, Calcitonin gene-related peptide (CGRP), Carcinoid syndrome, Carcinoid tumour, Estrogen, Flushing, Functional tumour, Gonadotropin-releasing hormone (GnRH), Histamine, Hormones, Hypokalemia, Luteinizing hormone (LH), Mastocytosis, Medullary thyroid cancer (MTC), Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Noradrenaline, Nutrition, Octreotide, Pheochromocytoma, Prostaglandin, Quality of LIfe (QoL), Rosacea, Serotonin, Substance P, Surgery, Tachykinin, The 5 E's, VIPoma, Watery diarrhea

Background Neuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some. Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms. Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, diagnoses of NET can be…

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28 May 2024

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Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Diet and NutritionAntibiotics, Carcinoid syndrome, Carcinoid tumour, Diarrhea, Diet, Dysbiosis, FODMAP, Gut, Gut Flora, Hydrogen breath test, Inflammatory bowel disease (IBD), Lactulose, Malabsorption, Midgut, Neuroendocrine, Neuroendocrine cancer, Nutrition, Probiotic, Proton pump inhibitors (PPI), Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET), Surgery

In this article, I'm discussing the use of probiotics to combat several issues including the general health of the 'gut' including IBS like symptoms, and the potential issue of small intestine bacterial overgrowth (SIBO), all of which may be related in some way to Neuroendocrine Tumours. That said, these issue may be regular conditions, nothing to do with NET. Nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients and nutrition and gut health can become more important issues. It is also a key factor in maintaining a decent quality of life and for most countries without…

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23 May 2024

20 Comments

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, TreatmentB12, Bile acid diarrhea, Bile acid malabsorption, Bile acid sequestrant, Bile acids, Bile salt, Carcinoid syndrome, Digestive enzymes, Endocrine, Fat malabsorption, Fat soluble vitamins, Gallbladder, Gut Flora, Hormones, Iron Deficiency Anaemia, Lanreotide, Liver, Malabsorption, Neuroendocrine, Neuroendocrine cancer, Nutrition, Octreotide, Pancreatic cancer, Pancreatic NET (PanNET), Pernicious anaemia, Probiotic, Quality of LIfe (QoL), Side effect, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET), Somatostatin analogues, Steatorrhea, Surgery, Vitamin ADEK, Vitamin B12, Water soluble vitamins

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that…

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23 May 2024

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Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Diet and NutritionAnorexia, Carcinoid syndrome, Fat soluble vitamins, Fatigue, Malabsorption, Mineral, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Nutrition, Vitamin A, Vitamin ADEK, Vitamin B complex, Vitamin B1, Vitamin B12, Vitamin B2, Vitamin B3, Vitamin B5, Vitamin B6, Vitamin B7, Vitamin B9, Vitamin C, Vitamin D, Vitamin E, Vitamin K, Water soluble vitamins

Disclaimer: This Spotlight is for general information only and should not be used as a substitute for personalised medical advice. Neuroendocrine neoplasms (NENs) are diverse, and individual cases vary. Always discuss your specific situation, test results, and treatment options with your own specialist team. Content reflects current evidence and classifications at the time of writing and may evolve as new data emerge. Always speak to your specialist before taking vitamin and mineral supplements. Featuring Tara Whyand Vitamin deficiency is common in the general population so your issue may not be related to NET. But read on to learn…

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17 May 2024

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Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, National Institute for Health and Care Excellence (NICE), Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

Orginal post - 25th Nov 2014.The papers and social media seem to be full of awareness and early diagnosis articles this month. This coincided with World Neuroendocrine Cancer Day on 10 Nov and Pancreatic Cancer day on 13 Nov. Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types. These issues also made it to the conventional media outlets of newspapers, radio and television. Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of…

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15 May 2024

7 Comments

Carcinoid Syndrome – chicken or egg?

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…

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14 May 2024

8 Comments

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Living with Neuroendocrine Cancer, Treatment5-HT, Advanced neuroendocrine cancer, Carcinoid heart disease, Carcinoid syndrome, Carcinoid tumour, Dermal fibrosis, Desmoplasia, Hedinger syndrome, Hormones, Hydrocele, Hydronephrosis, Intestinal ischaemia, Mesentery, Neuroendocrine cancer, Neuroendocrine tumour (NET), Peritoneal carcinomatosis, Pleural Fibrosis, Pulmonary fibrosis, Retroperitoneal Fibrosis, Retroperitoneum, Scleroderma, Serotonin, SI NET, Small intestine NET (SI NET)

What happened to me? Since I was diagnosed in 2010, I've always known about a fibrosis issue in my retroperitoneal area. It was identified on the very first CT scan which triggered my diagnosis. Here's how the radiologist described it - "There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness". Followed by a statement saying that it was "almost certainly malignant". The second and third scans would go on to describe as "retroperitoneal fibrosis" and "a plaque-like substance". Interestingly the fibrosis itself does not appear…

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13 May 2024

8 Comments

Neuroendocrine Cancer – a difficult jigsaw

Neuroendocrine Cancer – a difficult jigsaw

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAcid reflux, Carcinoid syndrome, Diabetes, Early Diagnosis, Endocrine, Hormones, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Quality of LIfe (QoL), Surgery, Symptom

A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn't associated with NETs.Although I chuckled and raised an eyebrow at the request, inside I was genuinely humbled that someone thought I was capable of achieving this herculean task. I actually gave it quite a bit of thought to the point of compiling a matrix of types of NET, main symptoms, cross-referenced with the symptoms of the most common reported comorbidities/secondary illnesses. After…

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11 May 2024

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Neuroendocrine Cancer: Beware But Be Aware

Neuroendocrine Cancer: Beware But Be Aware

AwarenessAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Diagnosis, Diarrhea, Flushing, Hormones, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer. Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations),…

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05 May 2024

27 Comments

Neuroendocrine Cancer – don’t break my heart!

Neuroendocrine Cancer – don’t break my heart!

Awareness, Living with Neuroendocrine Cancer, Survivorship, TreatmentCarcinoid heart disease, Carcinoid syndrome, ECG, Echocardiogram, Heart disease, Hedinger syndrome, Hormones, Neuroendocrine, Neuroendocrine cancer, NT-proBNP, Patent foramen ovale (PFO), Quality of LIfe (QoL), Serotonin, SI NET, Small intestine NET (SI NET), Somatostatin analogues, Surgery

Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome. Some doctors may refer to this as a functional tumour. Neuroendocrine Tumours secreting excess amounts of serotonin sufficiently to develop a syndrome currently called Carcinoid Syndrome, which if not diagnosed and treated early enough, or the levels of serotonin ae not controlled following diagnosis, can lead to an additional complication known as Hedinger Syndrome (also known as Carcinoid Heart Disease (CHD)). However, late diagnoses can present with CHD already in place and in some cases, may have led to…

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02 May 2024

10 Comments

Surgery for NETs – Chop Chop

Surgery for NETs – Chop Chop

TreatmentAdjuvant surgery, Advanced neuroendocrine cancer, Carcinoid syndrome, Cytoreductive, Debulking surgery, Enucleation, Liver metastases, Neuroendocrine tumour (NET), Pancreatic NET (PanNET), SI NET, Small intestine NET (SI NET), Somatostatin analogues

May 2024. a refurbish from some of my early work in 2015. I'm fairly sure not a lot has changed in surgery over the years. At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other…

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28 Apr 2024

34 Comments

Neuroendocrine – what’s that?

Neuroendocrine – what’s that?

Awareness, Patient AdvocacyBowel cancer, Carcinoid syndrome, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Hormones, Lung Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Pancreatic cancer, Quality of LIfe (QoL)

I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?". Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again! Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and…

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26 Apr 2024

11 Comments

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", SurvivorshipAlternative medicine, Alternative therapies, Carcinoid syndrome, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Pancreatic cancer, Quality of LIfe (QoL)

“But it works… I read it on the internet!” You may remember my article entitled The trouble with the NET (Part 1) which was a light-hearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media. Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer. They also post them on social media increasing…

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24 Apr 2024

8 Comments

‘Chinese Dumplings’ and Neuroendocrine Cancer

‘Chinese Dumplings’ and Neuroendocrine Cancer

Treatment5-Fluorouracil (5-FU), Carcinoid syndrome, Carcinoid tumour, Chemo bath, Chemotherapy, Chinese dumplings, Hyperthermic intraperitoneal chemotherapy (HIPEC), Intraoperative chemotherapy, Intraoperative radiotherapy (IORT), Lymphadenectomy, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Pseudomyxoma peritonei (PMP), Surgery

Update of one of my posts from 2015 which was interesting in that year. This is not really about a treatment which is available everywhere but was a novel approach by one of the world's most gifted and innovative NET surgeons. Please note this is not a nutrition post! One of my daily alerts brought up this very interesting article published in the Journal of Gastrointestinal Oncology in June 2015. I personally found it fascinating. Moreover, it gave me some hope that specialists are out there looking for novel treatments to help with the difficult fight against Neuroendocrine Cancer.This is an article about…

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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…

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19 Apr 2024

10 Comments

Things are not always how they seem

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, SurvivorshipCarcinoid syndrome, Invisible illness, Quality of LIfe (QoL), Stomach cramp

In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border. It was a fantastic experience, and we met some really interesting people on our 6-day journey. On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I was with Chris and other people were also present, so I kept quiet. I later discovered this lady was autistic and I was, therefore, relieved I hadn't responded to her initial rudeness. However, it got me thinking about the number of times I had perhaps been too hasty to judge people…

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18 Apr 2024

24 Comments

Neuroendocrine Cancer Online Patient Groups: frighteningly good or good at frightening?

Neuroendocrine Cancer Online Patient Groups: frighteningly good or good at frightening?

Awareness, Patient AdvocacyAnxiety, Carcinoid syndrome, Neuroendocrine cancer, Quality of LIfe (QoL)

When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'. I found it quite 'cliquey' and I should have listened to the initial advice of that fellow patient! So, I left it after the reigning clique found I didn't want…

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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…

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12 Apr 2024

10 Comments

Chocolate – the NET effect

Chocolate – the NET effect

Diet and Nutrition, Humour, The NET Effect SeriesAmines, Carcinoid syndrome, Diet, Neuroendocrine, Neuroendocrine cancer, Nutrition, Surgery, Type 2 diabetes

I've always had a 'sweet tooth' and the softer the sweet the better - toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts, 'tablet' and macaroon bars (both from Scotland), are all on my list of favourites. In terms of desserts, I love those too - ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn't complete without a biscuit (or three....). Don't get me wrong, I'm not stuffing my face with sweet stuff 24/7, however I do need my sugar 'fix' now and then. I'm not a…

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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…

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18 Mar 2024

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Neuroendocrine Cancer: If your doctors don’t suspect something, they won’t detect anything!

Neuroendocrine Cancer: If your doctors don’t suspect something, they won’t detect anything!

Awareness, Patient AdvocacyCarcinoid syndrome, Carcinoid tumour, Diagnosis, Flushing, Iron Deficiency Anaemia, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Pheochromocytoma

One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default…

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06 Feb 2024

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Histamine – NET or NOT?

Histamine – NET or NOT?

Patient Advocacy, The NET Effect Series5-HT, Carcinoid syndrome, Duodenal NET (dNET), Gastric NET, Gastrin, Gastrinoma, Histamine, Hypergastrinemia, Lung NETs, Pancreatic NET (PanNET)

Histamine is mentioned a lot in both patient groups and in literature as somehow connected with NETs, particularly with so called carcinoid syndrome (CS). In fact, various putative mediators, including serotonin, catecholamines, brady- and tachykinins, kallikrein, histamine, motilin, and prostaglandins, have been suggested as potential causative factors for the symptoms and complications associated with CS. It is generally believed that most of these tumour-derived secretory products are inactivated by hepatocytes and, therefore, only cause symptoms when they either bypass or are secreted outside of the portal vein drainage system. I wanted to focus on Histamine in this article. But what is the…

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29 Jan 2024

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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…

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20 Jan 2024

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European Neuroendocrine Tumor Society (ENETS) 2022 Guidance Paper for Carcinoid Syndrome and Carcinoid Heart Disease

European Neuroendocrine Tumor Society (ENETS) 2022 Guidance Paper for Carcinoid Syndrome and Carcinoid Heart Disease

A spotlight on NENs - Syndromes, Latest ENETS GuidelinesCarcinoid heart disease, Carcinoid syndrome, Hedinger syndrome

Author's commentMy 'Spotlight' on Carcinoid Syndrome may be easier reading for some but for those who wanted to dive into NET Specialist authored guidelines, this set from ENETS will be of use.Scope. Carcinoid Syndrome (CS) and Carcinoid Heart Disease (CHD) formally known as Hedinger Syndrome) are related in that the latter is a rare and complex cardiac complication occurring in patients with advanced NETs and CS. CS is predominantly encountered in patients with well-differentiated NETs of intestinal origin, followed by lung NETs, and only in a minority of patients with pancreatic, ovarian, thymic, or unknown origin (UKO) NETs. It follows…

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21 Dec 2023

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Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome

Clinical Trial of Paltusotine, an oral somatostatin analogue for the Treatment of Carcinoid Syndrome

Clinical Trials and ResearchAcromegaly, Adrenocorticotropic Hormone (ACTH), Biased agonist, Carcinoid syndrome, Clinical trial, CRN00808, Cushing's disease, Hyperinsulinism, Lanreotide, Neuroendocrine tumour (NET), Octreotide, Sandostatin, Somatostatin analogues, Somatostatin receptors (SSTR)

What is Paltusotine Paltusotine is the first oral, once-daily, selectively targeted somatostatin receptor type 2 (SST2) agonist being developed for the treatment of acromegaly and carcinoid syndrome. The method of operation appears to be similar in that it wants to bind to somatostatin receptor 2 (SST2). In the meantime, see short video and note that the drug for Acromegaly is more advanced in pipeline terms (now in Phase 3). In terms of the effect on NETs, these tumours typically over express SST2, somatostatin type 2 receptors. Both SST2 and 3 are involved in apoptosis of neuroendocrine tumour cells.” Paltusotine’s high level…

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18 Dec 2023

6 Comments

Midgut neuroendocrine tumor patients have a depleted gut microbiome with a discriminative signature

Midgut neuroendocrine tumor patients have a depleted gut microbiome with a discriminative signature

Clinical Trials and Research, Patient AdvocacyCarcinoid syndrome, Gut Flora, Midgut, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET)

What is the gut microbiome? According to Cleveland Clinic, your gut microbiome is a microscopic world within the world of your larger body. The trillions of microorganisms that live there affect each other and their environment in various ways. They also appear to influence many aspects of your overall health, both within your digestive system and outside of it. If you read their summary here, you can understand some of the implications of this study. However, as the study concluded, midgut NET patients have an altered gut microbiome which could suggest a role in NET development and provide novel targets…

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03 Dec 2023

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A Spotlight on NET Syndromes – Carcinoid Syndrome

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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20 Nov 2023

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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…

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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. …

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09 Nov 2023

6 Comments

Piss off Cancer, it’s been 13 years since my “big surgery”

Piss off Cancer, it’s been 13 years since my “big surgery”

Awareness, InspirationAdvanced neuroendocrine cancer, Carcinoid syndrome, Incurable cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Small intestine NET (SI NET)

D Day 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 eventually kill me without intervention,…

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07 Nov 2023

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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…

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29 Oct 2023

2 Comments

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

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…

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24 Oct 2023

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No flushes please!

No flushes please!

Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Flushing

Remastered 24th Oct 2023 Original Blog 6th Sep 2014 (but talking in public about my 2010 experiences). Despite people's expectations, diagnosing Cancer isn't a two-minute job. There is a whole host of stuff to consider, and medical staff clearly want to get it 100% correct in order to plan and manage the patient's treatment. I wrote a blog on 26 July "celebrating" 4 years since diagnosis - it's worth a read, check it out by clicking here. Continuing with the 'four years on' theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis.…

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15 Oct 2023

11 Comments

Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

AwarenessCarcinoid syndrome, Carcinoid tumour, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Syndrome

Share this post please An awareness post from Ronny Allan The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned. However, some cancers are in the 'difficult to diagnose' category. Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays. In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! In some cases, it can be a little bit noisy. For example, some…

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11 Oct 2023

3 Comments

My stomach sometimes cramps my style

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, SurvivorshipCarcinoid syndrome, Carcinoid tumour, Flushing, Metastatic Neuroendocrine Cancer, Probiotic, Quality of LIfe (QoL), Somatostatin analogues, Stomach cramp

When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!). In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'. Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......). This major undertaking was within 4 years of my diagnosis and within two years of 3 surgeries and I was borderline stable. I wanted to get it done while I was able! As a Cancer patient, there were some issues…

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06 Oct 2023

1 Comment

Just got (a) shot in the buttocks

Just got (a) shot in the buttocks

Humour, Inspiration, Patient Advocacy, TreatmentCarcinoid syndrome, Flushing, Lanreotide, Octreotide, Somatostatin analogues, Surgery

I love watching films and Tom Hanks is one of my favourite actors. He's played such a wide range of parts and I've found every single one of his films enjoyable. I think the first one I remember was 'Big' - a cracking family film for all ages. When I saw the large floor piano keyboard in Schwartz toy store in New York, I had to give it a go (video or photo to follow if I can find it!). On the opposite side of the scale, he's also been in some quite gory films such as 'Saving Private Ryan'…

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27 Sep 2023

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Neuroendocrine Cancer: Question, Clarify, Confirm

Neuroendocrine Cancer: Question, Clarify, Confirm

Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not. And I don't always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date. I attempted to pin this down in my much read "10 questions to ask your specialist"…

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04 Sep 2023

12 Comments

Exercise is Medicine

Exercise is Medicine

Inspiration, Survivorship, Travel with RonnyCarcinoid syndrome, Hormones, Lanreotide, Neuroendocrine cancer

Exercise is medicine. Clearly I need to be careful with that statement given my aversion for cancer myths. However, those who know me will totally get where I'm coming from, they will know that there is no way I am saying it cures cancer. What I am saying is that the vast majority of doctors will tell you exercise is good for us but like me they must realise that it sometimes takes quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!).…

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28 Aug 2023

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Neuroendocrine Cancer – normally slow but don’t be tricked!

Neuroendocrine Cancer – normally slow but don’t be tricked!

AwarenessAdvanced neuroendocrine cancer, Carcinoid heart disease, Carcinoid syndrome, Hormones, Incurable cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Paraganglioma, Pheochromocytoma, Quality of LIfe (QoL)

An awareness post from Ronny Allan. There are a lot of scary diseases in this world but some of them are particularly sneaky. One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. Don't be fooled, it's the great pretender. It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other…

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26 Jul 2023

4 Comments

13 years – I’m still here!

13 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Diagnosis, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine tumour (NET), Small intestine NET (SI NET)

I finally made 13 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 48 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…

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