Neuroendocrine cancer Archives

18 Jun 2026

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The Invisibility of Neuroendocrine Tumours (NET) – an awareness post by Ronny Allan

AwarenessAdvanced neuroendocrine cancer, Carcinoid syndrome, Carcinoid tumour, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

"Invisible cancer" typically refers to malignancies that evade early detection or disguise themselves as other common, non-life-threatening ailments. This term is very frequently associated with Neuroendocrine Tumours which are very often difficult to spot on standard imaging and blood tests. When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment. Something was wrong with me. But it wasn't stopping me do stuff. I'd look in the mirror doing my tie up, ironically the facial flushing was the disease staring me…

17 Apr 2026

By Ronny Allan

0 Comments

Neuroendocrine Cancer in UK – a growing crisis?

Patient AdvocacyIncidence, NET Centre of Excellence, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Prevalence

I was delighted to read about the efforts of Dr Arthur Scott, a Member of the UK Parliament (MP). He is a great advocate for cancer patients and recently introduced a rare cancer bill in the UK Parliament which will hopefully make a difference. The content was very interesting and I was drawn to several parts of his submission. "The label of “rare” can often be a dangerous misnomer in our healthcare system" Firstly, the description of 'rare' as a 'dangerous misnomer' when applied to a cancer which is now more prevalent than better known cancers such as Stomach and…

02 Jan 2026

By Ronny Allan

0 Comments

Ronny Allan – a review of my blog activity December 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Here is the monthly summary of December 2025 on RonnyAllan.NET - Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. December is normally a quiet month, often the quietist month of the year. However, this year, it was the best figures for the whole of 2025. I think it came on the back of a very productive November as most of them are awareness orientated posts. Some excellent technical stuff too. The month turned out 26,500 blog views. The selection of top posts really shows the breadth of subjects applicable to…

30 Dec 2025

By Ronny Allan

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A review of 2025 on RonnyAllan.NET

Awareness, Living with Neuroendocrine Cancer, Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

Summary of 2025 from Ronny It was a good year for my advocacy work but a difficult year personally which had some impact on my advocacy work. I had to spend quite a bit of time looking after my brother's affairs when he was diagnosed with dementia and is now living in residential care. That took a lot of my free time away, not that I resent it, it's just one of those things you just have to do, despite the stress it entails. I also have a glitch on my website affecting iPhones which I'm slowly working through. …

07 Dec 2025

By Ronny Allan

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Ronny Allan – just a wee Scottish guy with a computer

Awareness, Patient AdvocacyNeuroendocrine cancer

I was assessing performance of the awareness period in November 2025 on Facebook and was astonished to find the size of my reach on that platform. It appears I reached well over half a million people (572,700 to be exact) when adding up the performance of my 3 public Facebook pages (from left to right 16k, 3k and 8.5k followers). Clearly much of this performance was generated by people reading and sharing my work. But the most astonishing figures came from separating these views into followers (of my Facebook pages) and non-followers (a clear target for awareness). From the graphic…

28 Nov 2025

By Ronny Allan

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A sample of posts by Ronny Allan

Patient AdvocacyNeuroendocrine cancer

31 Oct 2025

By Ronny Allan

15 Comments

Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipCarcinoid syndrome, Chemotherapy, Diet, Genetic testing, Hormones, Incurable cancer, Malignant, Multidisciplinary team (MDT), Multiple Endocrine Neoplasia (MEN), NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Nutrition, Palliative care, Quality of LIfe (QoL), special, Surgery, Thorson-Bioerck syndrome, Tumor board, UKINETS

Scroll down to check out the doctors list just below Important note The accuracy of these lists depends on the accuracy of the sources. If you think the source is wrong, let them know, not me. However, you can also join my private Facebook group and someone in there will often be more up to date than the source! To the best of my knowledge, this the only attempt at a worldwide list of specialists. Finding experts Many people ask for a definition of a "NET Specialist". There's also discussions surrounding Multidisciplinary Teams (MDT)/Tumor Boards and Centres of Excellence (CoE).…

27 Oct 2025

By Ronny Allan

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Weekly roundup from Ronny 20th – 26th October 2025

NewslettersNeuroendocrine cancer

Weekly roundup from RonnyAllan.NET covering period 20th - 26th October 2025 A busy week! I continue to be diverted on personal stuff but still managed to publish many things. My biggest task which has been outstanding for a while, was published and commenting on the latest statistics on Neuroendocrine Neoplasms out of USA, the first SEER output since 2017. Heading - Neuroendocrine Neoplasms as a group are not rare - but then I have been saying that for 10 years. If you missed the conversation on Facebook - click here. New or updated blogs in the last 7 days: CABOMETYX®…

19 Oct 2025

By Ronny Allan

0 Comments

Weekly roundup from Ronny 13th – 19th October 2025

NewslettersNeuroendocrine cancer

Weekly roundup from RonnyAllan.NET covering period 13th - 19th October 2025 A busy week! I continue to be diverted on personal stuff but still managed to publish many things. My biggest task which has been outstanding for a while, was published and commenting on the latest statistics on Neuroendocrine Neoplasms out of USA, the first SEER output since 2017. Heading - Neuroendocrine Neoplasms as a group are not rare - but then I have been saying that for 10 years. If you missed the conversation on Facebook - click here. But a link to the article is also below. …

18 Oct 2025

By Ronny Allan

2 Comments

Neuroendocrine Cancer: a needle in a haystack?

Patient AdvocacyBiopsy, Cancer of unknown primary (CUP), Carcinoid tumour, DNA methylation-based profiling, Endoscopy, Ga68 PET/CT, Hormones, Incurable cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Somatostatin receptors (SSTR), Surgery

Reviewed and edited 6th April 2026 It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the US SEER database report issued in 2025 and also in many other places), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood. Neuroendocrine Cancer is a heterogenous…

13 Oct 2025

By Ronny Allan

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10 Random Blog posts Set 1 – RonnyAllan.NET

Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, The NET Effect Series, TreatmentNeuroendocrine cancer

10 Random Blog posts Set 1 - RonnyAllan.NET WelcomeA new series of random blogs that are not only informational, but also relevant. Carefully selected by the author.Thanks for reading. Feedback welcome. Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption The Cancer Legacy of Steve Jobs Cancer-related fatigue (CRF) - The NET Effect Jimmy Buffett 1946-2023 - Neuroendocrine Carcinoma (Merkel Cell Carcinoma) Cancer Ablation Meet Edison® Histotripsy System - powerful bubbles Lower grade higher stage NETs - slow motion, chronic and indolent? Neuroendocrine Cancer Awareness - let’s move into the 21st century Living with NETs - nobody…

25 Sep 2025

By Ronny Allan

8 Comments

Immunotherapy and Neuroendocrine Neoplasms

Clinical Trials and Research, TreatmentAdvanced neuroendocrine cancer, Anti-angiogenic therapy, Atezolizumab (Tecentriq), Avelumab (Bavencio), Avistan, Bavencio, Bevacizumab, Cisplatin, Colorectal cancer, DLL3, EGFR, Epidermal growth factor receptor (EGFR), Fluoropyrimidine, Head and Neck Cancer, Hodgkin lymphoma, Immunotherapy, Ipilimumab (Yervoy), Keytruda, Lanreotide, Melanoma, Microsatellite instability-high (MSI-H), Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nivolumab (Opdivo), Non-small cell lung cancer (NSCLC), Paraganglioma, PD-1/PD-L1 Inhibitors, PDR001, Pembrolizumab (Keytruda), Pemetrexed disodium, Pheochromocytoma, Solid tumour, Squamous cell carcinoma, Tecentriq (Atezolizumab), Tumour mutational burden (TMB), Typical lung NET, Yervoy

Updated 24th September 2025. Introduction There's a lot of Immunotherapy stuff out there! The picture regarding its use in Neuroendocrine Neoplasms is not clear and there is no general roadmap printed. I first heard of Immunotherapy for NETs following attendance at ENETS 2017 in Barcelona. The presentation that sticks out was one given by Dr Matthew Kulke, a well-known NET Specialist in Boston. My reaction to the presentation was one of 'expectation management' and caution i.e. it's too soon to know if we will get any success and when we will get it. He also hinted that it's more likely…

24 Jul 2025

By Ronny Allan

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My NET is different than yours

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

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

28 Apr 2025

By Ronny Allan

1 Comment

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…

26 Apr 2025

By Ronny Allan

6 Comments

Catch up on Ronny Allan’s Blog

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, TreatmentNeuroendocrine cancer

You guys lead busy lives but the aim of this article is to help you catch up. Below are the most read posts in the last 7 days. Click on anything that takes your fancy. Many thanks. To read any article, just click on the title/picture below Latest from Instagram https://www.instagram.com/neuroendocrine.cancer.ronny/ Select of category of posts you'd like to see 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), or conveyed by me on any social media or presentation, should be interpreted as…

05 Apr 2025

By Ronny Allan

3 Comments

The trouble with the NET (Part 5) – Cancer Diet Myths

Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series"Alternative medicine, Blood glucose, Cancer causes, Diet, Essiac therapy (Essiac tea), Gerson therapy, Glucose (cancer sugar myth), Green tea, Ketogenic diet, Laetrile (amygdalin or vitamin B17), Mushrooms, Neuroendocrine cancer

Updated 29th June 2025...... Keep reading. Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions. Even food and nutritional supplements fall into this area. Be cautious about believing information about, or paying for, any alternative cancer therapy on the internet. Common dietary myths (this is not a complete list!) There are numerous (alleged)…

15 Mar 2025

By Ronny Allan

29 Comments

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAcid reflux, Advanced neuroendocrine cancer, Amylase, Antiacids, Barrett's Esophagus, Bile acid malabsorption, Bile acid sequestrant, Carcinoid syndrome, Carcinoid tumour, Cholestyramine, Exocrine function (pancreas), Exocrine pancreatic insufficiency, Fecal elastase test, Fecal fat, H2 receptor antagonist (H2RA), Hormones, Lanreotide, Lipase, Malabsorption, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Nutrizym, Octreotide, Pancrease, Pancreatic cancer, Pancreatic insufficiency, Pancreatic NET (PanNET), Pancreatin, Pancrex, Pepcid (Famotidine), Protease, Proton pump inhibitors (PPI), Quality of LIfe (QoL), Small intestine bacterial overgrowth (SIBO), Somatostatin analogues, Steatorrhea, Surgery, Total gastrectomy, Total pancreatectomy, Zantac, Zollinger-Ellison Syndrome

After years of avoiding pancreatic enzyme replacement therapy (PERT) since a 2010 diagnosis, I finally asked for some on a trial basis at the end of 2017. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I've always known I've had some digestive issues related to malabsorption. However, I'm wasn't losing weight - this has been stable for some years (but see below). Plus, my key vitamin levels (B12 and D) were in range. However, I had been struggling with a lot of bloating issues, thus…

14 Mar 2025

By Ronny Allan

6 Comments

Letter from America

Awareness, Inspiration, Living with Neuroendocrine CancerNeuroendocrine cancer

I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail. Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA. Now ….. for those around the same age as me, you might have been attracted by the article header…

07 Mar 2025

By Ronny Allan

5 Comments

Neuroendocrine Cancer in England: One every 90 minutes

AwarenessIncidence, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), SEER

I've made no secret of the fact that I don't believe Neuroendocrine Cancer is rare and you can read why in some detail in my article Neuroendocrine Cancer - not as rare as you think. Better diagnostic technology, greater awareness and better recording of the correct disease in national cancer registries. The latest figures for Public Health England (covering ~90% of UK), indicate there are now approximately 6000 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, It is calculated from an incidence rate of approximately 9/100,000. This means NEN can now no longer be defined…

06 Mar 2025

By Ronny Allan

1 Comment

Health Union Accredits Ronny Allan as a Certified Patient Leader – February 2025

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Survivorship

Health Union accredits Ronny Allan This was announced in summer 2023 but it took me a while to engage due to my many commitments (including some big personal stuff to sort out) I had a false start, many things took priority for a while but early 2025, I was encouraged to complete it and finally crossed the line in February 2025. Read my Facebook announcement of certification - click here. My formal certificate was recently received, see below! Health Union Acquires WEGO Health - WEGO Health WEGO Health had the largest network of patient leaders in the world, clearly…

26 Feb 2025

By Ronny Allan

0 Comments

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

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

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

20 Feb 2025

By Ronny Allan

18 Comments

Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

Living with Neuroendocrine Cancer, Survivorship, The NET Effect Series, TreatmentAdvanced neuroendocrine cancer, Axillary nodes, Carcinoid syndrome, Carcinoid tumour, Distant metastatis, Hypothyroidism, Ki-67, Levothyroxine, Lung nodule, Lymphadenectomy, Lymphatic system, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nodule, Octreoscan (Octreotide scan), Quality of LIfe (QoL), Sternoclavicular joint, Supraclavicularfossa (SCF) lymph nodes, Surgery, Thyroid cancer

A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of…

19 Feb 2025

By Ronny Allan

2 Comments

The Other 5 E’s by Ronny Allan

Inspiration, Living with Neuroendocrine CancerAdvanced neuroendocrine cancer, Carcinoid syndrome, Diet, Hormones, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL), Somatostatin analogues, The 5 E's

I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say, "I can't" than it is to say, "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So, this is the story of my daytrip at the end of summer (and pretty much many days out). The 5 Es Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of…

18 Feb 2025

By Ronny Allan

2 Comments

Neuroendocrine Cancer Surgery 3: my distant lymph nodes

TreatmentDebulking surgery, Lymphadenectomy, Neuroendocrine cancer, Retroperitoneal Fibrosis, Supraclavicularfossa (SCF) lymph nodes

Updated 27th February 2026 My experience with lymph node surgery - 27th February 2012 As a metastatic Small Intestine NET case, I had the usual bulky chains of lymph node metastases in or around the mesentery that frequently appear with an abdominal primary. Most of these were removed during my primary resection. I still have some suspicious lymph nodes in the peri-aortic region, potentially responsible for my retroperitoneal fibrosis, another strange issue I live with.However, I also had some 'distant nodes' above the diaphragm. My surgeon described my 'distant' lymph node issues as an 'unusual disposition' of tumours. These were …

17 Feb 2025

By Ronny Allan

7 Comments

The NETest® – can it replace Chromogranin A and more?

A Spotlight on NENs - Testing Series, Clinical Trials and Research, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid tumour, Chromogranin A (CgA), Liquid biopsy, Metastatic Neuroendocrine Cancer, Molecular markers, NETest, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Tumour marker

See Summary below for a quick updateUpdate 8th Dec 2025. New York State Department of Health Grants Approval of Wren Laboratories’ NETest® 2.0 for Clinical Use Clinically Validated Performance In validation across 3,042 NET patients and 1,084 controls/other cancers, NETest 2.0 demonstrated: Sensitivity: 93% Specificity: 85% Positive predictive value: 95% Negative predictive value: 82% Overall accuracy: 91% These results support broad clinical utility, including: Accurate detection across all NET grades and stages Identification of minimal residual disease, recurrence, and progression Monitoring and prediction of therapeutic response, including 177Lu-PRRT Prognostic value for progression-free and overall survival Detection of neuroendocrine differentiation in select epithelial tumors Click…

16 Feb 2025

By Ronny Allan

2 Comments

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Afinitor, Benign tumour, Carcinoid syndrome, Carcinoid tumour, Chemotherapy, CT scan, Diarrhea, Everolimus, Ga68 PET/CT, Hormones, Incurable cancer, Lanreotide, Malignant, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreoscan (Octreotide scan), Octreotide, Pancreatic cancer, Pseudomyxoma peritonei (PMP), Quality of LIfe (QoL), Serotonin, Small intestine NET (SI NET), Somatostatin analogues, Sunitinib (Sutent), Surgery, Terminal cancer

Edited and refreshed 13th January 2026 There's a lot of inaccurate and out-of-date information out there. Some are just a lack of understanding, and some are caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasise Simply untrue. They are a heterogeneous group of tumours. Read more…

15 Feb 2025

By Ronny Allan

10 Comments

Genetics and Neuroendocrine Tumours

Awareness, Living with Neuroendocrine Cancer, SurvivorshipAutosomal dominant, Benign, Carney-Stratakis syndrome (CSS), Chromaffin cells, Familial medullary thyroid cancer (FMTC), Familial NET, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Genetic testing, Genetics, Germline genetic mutations, Hereditary cancer syndrome, Hormones, Incurable cancer, Lung NETs, Malignant, MEN1 syndrome, Metastatic Neuroendocrine Cancer, Multiple Endocrine Neoplasia (MEN), Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Neurofibromatosis type 1 (NF1), Paraganglioma, Pheochromocytoma, Pituitary NET (PitNET), Quality of LIfe (QoL), Tuberous sclerosis (TSC)

Hereditary genetics.....where to focus In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing as research advances and I cannot guarantee this post will contain all of them. Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumours…

14 Feb 2025

By Ronny Allan

0 Comments

Ronny Allan’s ‘PoNETry’ – An Ode to Lanreotide

Humour, Inspiration, Survivorship, TreatmentButt dart, Lanreotide, Neuroendocrine cancer, Neuroendocrine tumour (NET), Somatostatin analogues

Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Read about my experience with Lanreotide - click here Thanks for reading Ronny I also have PoNETry on Invisible Illness - click here Click here and answer all questions to join my private Facebook group Most recent posts - click to read

12 Feb 2025

By Ronny Allan

0 Comments

5 posts not to miss on Ronny Allan’s blog

Patient AdvocacyNeuroendocrine cancer

Just click on the pictues and read (and hopefully share!) I'm constantly fighting algorithms! Facebook is the worst, apparently only 10% of followers will get a notification of a new post on my pages. 10% !!! Because I am a blogger for a health condition, they put me amongst businesses. Clearly they want advertising revenue from business, I get that, Facebook has huge overheads. But I am here helping people and not reaching my community (unless I pay of course). However, if you are following my Facebook pages, add them to your favourites and you will help beat the algorithms.…

05 Feb 2025

By Ronny Allan

8 Comments

Living with Cancer – Worrier or Warrior?

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Scanxiety, Stress

If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article…

29 Jan 2025

By Ronny Allan

4 Comments

Phase 3 Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs

Clinical Trials and Research68Ga edotreotide (TOCscan®), Advanced neuroendocrine cancer, Afinitor, COMPETE trial, Edotreotide, EndolucinBeta, Everolimus, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Neuroendocrine cancer, Neuroendocrine tumour (NET), No-Carrier-Added Lutetium-177 (n.c.a. Lu177), Octreotide, Solucin ®, Somatostatin analogues, Somatostatin receptors (SSTR), TOCscan®

Update - 13th November 2025. ITM Announces FDA Acceptance of New Drug Application (NDA) and PDUFA Date for n.c.a. ¹⁷⁷Lu-edotreotide (ITM-11) in Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs) Garching / Munich, Germany, November 13, 2025 - ITM Isotope Technologies Munich SE (ITM), a leading radiopharmaceutical biotech company, today announced that the U.S. Food and Drug Administration (FDA) completed its filing review and accepted the company’s New Drug Application (NDA) for n.c.a. 177Lu-edotreotide (also known as ITM-11 or 177Lu-edotreotide). 177Lu-edotreotide is ITM’s proprietary, synthetic, targeted radiotherapeutic investigational agent for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). The FDA has set a Prescription Drug User Fee Act (PDUFA) goal…

26 Jan 2025

By Ronny Allan

5 Comments

There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

Awareness, Patient AdvocacyMetastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

Thousands of people are diagnosed with cancer every day. Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been ploughed into research and care services. Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and be under surveillance for a period (normally 5 years but this differ with different cancer types) and then be declared in remission, or even cured. The problem with certain cancer symptoms is that they are not…

24 Jan 2025

By Ronny Allan

16 Comments

Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?

Living with Neuroendocrine Cancer, Survivorship, Treatment64Cu-DOTATATE, Axillary nodes, Bone metastases, CT scan, Degenerative bone disease, Ga68 PET/CT, Liver metastases, NETSPOT, Neuroendocrine cancer, Octreotide scan, Overdiagnosis, Physiological uptake, Radionuclide, Retroperitoneal Fibrosis, SEER, SomaKit TOC, SSTR-PET, Subpectoral lymph node, Supraclavicularfossa (SCF) lymph nodes, Surveillance, Ureter

I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of the remnant disease. The third scan in 2013 highlighted an additional lesion in my thyroid (still under a watch and wait regime, biopsy inconclusive - but read on....). In 2018, my 6…

18 Jan 2025

By Ronny Allan

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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),…

16 Jan 2025

By Ronny Allan

3 Comments

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Patient Advocacy5-HIAA, Carcinoid syndrome, Complete blood count (CBC), CT scan, Diarrhea, Doctor Google (Dr. Google), Endoscopic ultrasound (EUS), Flushing, Full blood count (FBC), Ga68 PET/CT, Hormones, Incurable cancer, Magnetic resonance imaging (MRI) scan, NET syndromes, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreotide scan

Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if…

15 Jan 2025

By Ronny Allan

28 Comments

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

Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. 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…

14 Jan 2025

By Ronny Allan

8 Comments

Neuroendocrine Cancer – If you can see it, you can detect it!

Living with Neuroendocrine Cancer, Survivorship111In-DTPA-D-Phe1, 123I-Metaiodobenzylguanidine (mIBG), 131I-Metaiodobenzylguanidine (mIBG), 18F-FDG, 18F-FDOPA, Advanced neuroendocrine cancer, CT enterography, CT scan, Diagnosis, DOTA-NOC, DOTA-TATE, DOTA-TOC, Echocardiogram, Endoscopic ultrasound (EUS), Endoscopy, Explorer PET scan, Fluoro-18-L-Dihydroxyphenylalanine, Ga68 PET/CT, Magnetic resonance imaging (MRI) scan, Medullary thyroid cancer (MTC), Metastatic Neuroendocrine Cancer, Neuroblastoma, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Octreoscan (Octreotide scan), Octreotide scan, Paraganglioma, Pentetreotide, Pheochromocytoma, Somatostatin analogues, Somatostatin receptor scintigraphy (SRS), SPECT, SSTR-PET, Survivorship, Technetium-99m (Tc-99m), Ultrasound, X-ray

Updated December 2025 Background Scanning is a key diagnostic support and surveillance tool for any cancer. Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer. When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan…

13 Jan 2025

By Ronny Allan

2 Comments

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 2)

TreatmentCarcinoid tumour, CT guided aspiration, Debulking surgery, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Nutrition, SI NET, Small intestine NET (SI NET)

The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce (on the left on the picture below), I tolerated it well. My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1. If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed was the urine…

11 Jan 2025

By Ronny Allan

3 Comments

Neuroendocrine Cancer Surgery – Small Intestine NET, my own experience (part 1)

Survivorship, TreatmentDebulking surgery, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Nutrition, Octreotide, SI NET, Small intestine NET (SI NET)

8th - 26th November 2010 Memories of my 18-day stay in the hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days when morphine was in control. For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease. In fact, I now know from my own research that NETs are one of a small number of cancers for which surgical debulking can in many…

10 Jan 2025

By Ronny Allan

8 Comments

Nick Robinson – Neuroendocrine Cancer – the devil is in the detail

Awareness, Patient Advocacy, SurvivorshipAsthma, Atypical carcinoid tumour, Atypical Lung NET, Lung NETs, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine tumour (NET)

Originally published March 2015. Updated 10th February 2025 Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day. Nick is pretty good at painting politicians into a corner, trying to eek out what they really think, not the 'spin' which they are normally pretty good at. Like a lot of people, Nick's life changed when he was diagnosed with…

03 Dec 2024

By Ronny Allan

0 Comments

Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Inspiration, Patient AdvocacyAdvanced neuroendocrine cancer, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

I'm not one for wallowing in self-pity or accepting invites to pity parties. It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in the world because I'm…

01 Dec 2024

By Ronny Allan

23 Comments

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy131I-Metaiodobenzylguanidine (mIBG), 5-HIAA, 5-HT, 5-HTP, 5-Hydrotryptophan (5-HTP), 5-Hydroxyindoleacetic Acid (5-HIAA), 5-Hydroxytryptamine (5-HT), Adrenocorticotropic Hormone (ACTH), Biopsy, C-peptide, Calcitonin, Carcinoid crisis, Carcinoid heart disease, Carcinoid syndrome, Catecholamines, Chromaffin cells, Chromogranin, Chromogranin A (CgA), Chromogranin B (CgB), Chromogranin C (CgC), Cortisol, Electrolytes, Endocrine, Fasting Gut Endocrine Profile, Flushing, Gastric NET, Gastrin, Gastrin pH, Gastrinoma, Gastroesophageal reflux disease (GERD), Genetic testing, Glucagon, Glucagonoma, Hedinger syndrome, Histamine, Hormones, Hypertension, Insulin, Insulinoma, MEN1 syndrome, Metanephrines, Molecular markers, NETest, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Neurokinin A (NKA), NKA, NT-proBNP, Pancreastatin, Pancreatic cancer, Pancreatic NET (PanNET), Pancreatic polypeptide (PP), Pheochromocytoma, Plasma 5HIAA, PPoma, Proinsulin, Proton pump inhibitors (PPI), Red blood count (RBC), Renal insufficiency, Serotonin, Serum serotonin, Somatostatin, Somatostatinoma, Substance K, Substance P, Tachycardia, Tachykinin, VIPoma, Wheezing, Zollinger-Ellison Syndrome

Originally published 2016, updated October 2025 Background Some people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time. Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done…

29 Nov 2024

By Ronny Allan

7 Comments

It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyMetastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine tumour (NET), Quality of LIfe (QoL)

When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date. As a novice…

27 Nov 2024

By Ronny Allan

20 Comments

🔵 The Invisible Neuroendocrine Tumour Population

AwarenessCancer registries, Carcinoid tumour, Epidemiology, High grade neuroendocrine neoplasm (NEN), Incidence, Intermediate grade NET, Low Grade NETs, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pheochromocytoma, Prevalence

Introduction For years, patients, clinicians, and researchers have suspected that the true number of people living with neuroendocrine tumours (NETs) is far higher than official statistics suggest. Registry data only captures those who are diagnosed — but what about those who never receive a diagnosis at all? Autopsy studies, historical pathology series, and institutional observations provide a rare window into this invisible NET population. When viewed together, they reveal a consistent global pattern: NETs and related neuroendocrine tumours are under‑diagnosed, under‑recognised, and often present for years before anyone realises what they are. This refreshed article integrates 13 autopsy‑based datasets, two key epidemiologic messages, and updated…

24 Nov 2024

By Ronny Allan

29 Comments

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Carcinoid syndrome, Diet, ENETS, Hormones, Immunotherapy, Incurable cancer, Lanreotide, Malabsorption, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Nutrition, Octreotide, PRRT, Quality of LIfe (QoL), SEER, Somatostatin analogues, Surgery

Originally published March 2017 OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…

23 Nov 2024

By Ronny Allan

4 Comments

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…

06 Nov 2024

By Ronny Allan

0 Comments

Neuroendocrine Cancer – no sweat!

Living with Neuroendocrine CancerAntidepressant, Anxiety, Carcinoid syndrome, Diabetes, Flushing, Hyperhidrosis, Hyperthryroidism, Hypoglycemia, Menopause, Neuroendocrine cancer, Night sweat, Pheochromocytoma, Sleep hyperhidrosis, Sweating

I see so many questions and comments in my private group about sweating, in particular, 'night sweats' and it's prompted me to dig deeper, thus this article. When I look at a dozen decent sources of medical info, they all seem to bring up several common causes appearing on the different lists on each website I look at. I do see (so-called) carcinoid syndrome come up infrequently and perhaps the authors are lumping that in with hot flashes/flushing etc. But on authoritative NET sites (i.e. written by the NET scientific community), I do not see 'sweating' come up in the…

28 Oct 2024

By Ronny Allan

17 Comments

Things to do today

Inspiration, Living with Neuroendocrine Cancer, SurvivorshipAdvanced neuroendocrine cancer, Chronic condition, Incurable cancer, Invisible illness, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Quality of LIfe (QoL)

When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt. I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something…

27 Oct 2024

By Ronny Allan

0 Comments

I wish I had another cancer

Awareness, Inspiration, Patient AdvocacyNeuroendocrine cancer, Neuroendocrine carcinoma (NEC), Pancreatic cancer

AN OPINION POST I’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that). Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’. Ironically, although some cancers are almost certainly worse…

26 Oct 2024

By Ronny Allan

10 Comments

PRRT – The Sequel? Alpha-emitter PRRT for Neuroendocrine Tumours (NET)

Clinical Trials and Research212Pb-AR-RMX, Ac-225, Advanced neuroendocrine cancer, Carcinoid tumour, Incurable cancer, Metastatic Neuroendocrine Cancer, Neuroendocrine, Neuroendocrine cancer, Nuclear medicine, Peptide receptor radionuclide therapy (PRRT), PRRT, Radioimmunotherapy, Radionuclide, Somatostatin analogues, Targeted alpha-emitter therapy (TAT)

Updated and reviewed June 2026. Alpha‑emitter PRRT is emerging as the next major evolution of peptide receptor radionuclide therapy. Instead of using a beta‑emitting isotope such as 177Lu, these new approaches use alpha‑particle–emitting isotopes like 212Pb or 225Ac. The goal is simple: deliver more powerful DNA‑damaging radiation directly into tumour cells while keeping the impact on surrounding tissues as low as possible. This is still experimental, but the science is compelling — and the early clinical signals are strong enough that alpha‑emitter PRRT is now considered one of the most important areas to watch in NET research. How alpha‑emitter PRRT…

Tag: Neuroendocrine cancer