Ronny Allan - Living with Neuroendocrine Cancer - Page 7 of 15 - Ronny Allan - International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping patients and their advocates

30 Apr 2024

17 Comments

I’m only as good as my last scan

Living with Neuroendocrine Cancer, SurvivorshipCancer grading, Cancer staging, Cancer surveillance, Carcinoid tumour, CT scan, Ga68 PET/CT, Magnetic resonance imaging (MRI) scan, Metastatic Neuroendocrine Cancer, NETSPOT, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Quality of LIfe (QoL), Scan, Scanxiety

"I'm only as good as my last scan". I once received this comment in response to one of my posts. I thought it was a very pragmatic thing for someone to say and it emphasises the importance of scans in advanced metastatic cases or those early in their diagnosis. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5-HIAA are clearly useful (for me) but in an ongoing surveillance scenario, they alone would…

29 Apr 2024

By Ronny Allan

6 Comments

Happy 10th birthday to my Blog Ronny Allan – Living with Neuroendocrine Cancer (RonnyAllan.NET)

Awareness, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyCancer survivor, Survivorship

On 29th April 2014, I release my first post entitled "What's it all about" i.e. why on earth am I writing a blog! It was simple in those days, I just wanted your money :-) I was fundraising as many diagnosed cancer patients and their supporters frequently do. In my own case, I was fundraising for my local NET charity who were raising money to support NET patients in various ways. Their latest challenge at that time was getting access to intraoperatrive radiotherapy machine (IORT), something that could help 'blast' small cells and tumours in places near to the 'operative…

28 Apr 2024

By Ronny Allan

34 Comments

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…

26 Apr 2024

By Ronny Allan

11 Comments

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…

24 Apr 2024

By Ronny Allan

8 Comments

‘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…

22 Apr 2024

By Ronny Allan

0 Comments

“An odd disposition of tumours” – less common metastases in Small Intestine and Pancreatic NETs

Clinical Trials and Research, Patient AdvocacyAdvanced neuroendocrine cancer, Axillary nodes, Bone metastases, Distant metastatis, Supraclavicularfossa (SCF) lymph nodes

Every day is a learning day in NET! When I was diagnosed in 2010, my Oncologist sent me for a specialist scan that would help confirm my staging definition and to document anything that might not have shown up on CT. This was described as an Octreotide Scan (somatostatin receptor scintigraphy) (now mostly replaced by Somatostatin Receptor PET (SSTR PET) e.g. Ga68/Cu64). Lo and behold, the 3 day Octreotide scan lit up some odd places which seemed to be unconnected to my small intestine primary. I was already stage IV due to the presence of liver metastases and this was…

21 Apr 2024

By Ronny Allan

9 Comments

Chemotherapy for Neuroendocrine Cancer

Treatment5-Fluorouracil (5-FU), Afinitor, Cancer research, Capecitabine (Xeloda), CAPecitabine TEMozolomide (CAPTEM)., CAPTEM, Carboplatin, Chemotherapy, Cisplatin, Etoposide, Everolimus, FCarboSt, FOLFIRI, FOLFOX, High Grade NEC, Irinotecan (Campto), Mixed Neuroendocrine Non-Neuroendocrine Neoplasms (MiNEN), Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Paclitaxel (Taxol), Poorly differentiated, PRRT, Somatostatin analogues, Streptozotocin (Zanosar), Sunitinib (Sutent), Temozolomide (Temodal), Vepesid), Well differentiated, XELOX. Oxaliplatin (Eloxatin)

Edited and checked March 2026 One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a 'standard of care' or first-line treatment, unlike many other cancers. One exception is high grade (Grade 3) where it is very often a first and/or second-line therapy. This is particularly the case with poorly differentiated Neuroendocrine disease, by default labelled as Neuroendocrine Carcinoma (NEC). Many people think Chemotherapy has a short life span due to recent advances in medical science, some citing Immunotherapy as its replacement. However, it's far too early to write off chemotherapy which is still…

20 Apr 2024

By Ronny Allan

41 Comments

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…

19 Apr 2024

By Ronny Allan

10 Comments

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…

18 Apr 2024

By Ronny Allan

24 Comments

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…

16 Apr 2024

By Ronny Allan

19 Comments

Colonoscopy Comedy

Humour, Living with Neuroendocrine CancerColonoscopy, Diagnosis, Gastroenterologist, Neuroendocrine cancer, Neuroendocrine tumour (NET), Surgery

Last year I wrote a series of articles on the 'coping' side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I've had, I sometimes have a little laugh even although I wasn't laughing at the time! My favourite 'treatment laugh' is the 'suppository story' which occurred in hospital shortly after my first major surgery - it wasn't funny at the time, but…

15 Apr 2024

By Ronny Allan

8 Comments

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…

14 Apr 2024

By Ronny Allan

0 Comments

Piss off cancer, it’s 13 years since my liver surgery!

Patient Advocacy, Survivorship, TreatmentAdvanced neuroendocrine cancer, Cancer survivor, Laparoscopic surgery, Liver metastases, Small intestine NET (SI NET), Surgery

I'm still here 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, grading, and 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, didn’t have…

12 Apr 2024

By Ronny Allan

10 Comments

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…

10 Apr 2024

By Ronny Allan

1 Comment

FEB 2026 – TRIAL DISCONTINUED Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive Neuroendocrine Tumours

Clinical Trials and Research, Treatment212Pb, 212Pb-AR-RMX, Clinical trial, Peptide receptor radionuclide therapy (PRRT), PRRT, Targeted alpha-emitter therapy (TAT)

A Phase 2 Open Label Study to Evaluate the Safety and Effectiveness of 212Pb-DOTAMTATE (alpha-emitter) in Subjects With Somatostatin Receptor Positive Neuroendocrine Tumours Update 4th February 2026. The company quietly discontinues AlphaMedix. Read more Trial Discontinued Update 2nd November 2025 - NANETS output. Efficacy, Safety of 212Pb-DOTAMTATE in PRRT-Naive Patients With GEP-NETs This is a follow on from the 8th October 2025 update below. Commentary by Dr Mary Maluccio from NOLA NETs. The figures looks great and you can read it or listen to her talking. Click here for that. The phase 3 trials will be PRRT niave patients ony…

01 Apr 2024

By Ronny Allan

0 Comments

A Review of March 2024 on RonnyAllan.NET

Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer

I'm thankful to the loyal supporters on my blog site and the other social media sites day and night (and I do note some doing both!). I really am very grateful. You know who you are - take a bow! Here is my monthly summary of what we all achieved in March 2024. Something new, something blue and some borrowed too! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog…

31 Mar 2024

By Ronny Allan

0 Comments

From Whipple to Waikiki by Jerry Chezick. Surf’s up!

InspirationNeuroendocrine tumour (NET), Pancreatic NET (PanNET), Survivorship, Whipple procedure

An essay by Jerry CrezickJerry is a Pancreatic Neuroendocrine Tumor (NET) patient recovering after a Whipple operation carreid out early 2022. He soon realised he had a big challenge on his hands. Read his story of recovery helped by learning to surf! First posted in my private Facebook patient support group. Gerry kindly agreed to let me post here. Honest, open and inspiring stuff"Finally I realized, I had to become the World Expert on MY Body"I've recently passed the 2-year anniversary of my Whipple.About 9 months before, I experienced a total knee replacement and figured, if I could endure that…

29 Mar 2024

By Ronny Allan

1 Comment

Diagnosed with Neuroendocrine Tumours: Hurry up and wait

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentDiagnosis, Distant metastatis, Intermediate grade NET, Liver embolization, Low Grade NETs, Metastatic Neuroendocrine Cancer, Multidisciplinary team (MDT), Octreotide, Octreotide scan, Small intestine NET (SI NET), Surgery

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when…

26 Mar 2024

By Ronny Allan

2 Comments

Tick off that bucket list

Inspiration, Patient AdvocacyAdvanced neuroendocrine cancer

In 2002, I was reading a Sunday newspaper and found myself drawn to an article about hiking the 2000 year old Hadrian's Wall. The walk along Hadrian’s Wall Path is an 84 mile (135 Km) National Trail stretching coast to coast across northern England, from Wallsend, Newcastle upon Tyne in the east to Bowness-on-Solway on the west coast. It generally follows the line of Hadrian’s Wall, along the way passing through some of the most beautiful parts of northern England – from rolling fields and rugged moorland to the vibrant cities of Newcastle and Carlisle. As someone interested in history,…

25 Mar 2024

By Ronny Allan

3 Comments

Four years on

Awareness, InspirationAdvanced neuroendocrine cancer, Cancer surveillance, Cancer survivor

Edit 2024: One of my early posts was entitled "Four years on". I guess I was starting to recognise 'cancerversaries', perhaps realising I might get throuh the ordeal, or at least for longer than I thought. 2014 was also the year I retired after working since the age of 16! My first task was to walk the 84 miles of Hadrian's Wall. Then at year 5 (2015), I started the "I'm still here" series of posts and took it from there. Original Text from 26th July 2014. On Saturday, I glanced at the calendar on my phone and recognised the date as…

23 Mar 2024

By Ronny Allan

32 Comments

The Human Anatomy of Neuroendocrine Cancer

AwarenessAretha Franklin, Bowel cancer, Lung Cancer, Misdiagnosis, Neuroendocrine, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pancreatic cancer, Surgery

OPINION. Sometimes when I'm searching for cancer information, I'm presented with a 'picklist' of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list .....some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates then have to shout quite loud for recognition and understanding. One of the key facets of Neuroendocrine Neoplasms (NENs) is that they are not tied to a particular part of the human anatomy. Unlike (say) lung cancer, where the primary is in the lung, or…

22 Mar 2024

By Ronny Allan

15 Comments

Neuroendocrine Cancer – Horrible Hormones

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

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

20 Mar 2024

By Ronny Allan

23 Comments

The trouble with the NET (Part 1) – Cancer Myths

Awareness, Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", SurvivorshipAlternative medicine, Alternative therapies, Cancer causes, Neuroendocrine cancer

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. In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey. In a similar study in UK, the NHS blamed social media…

19 Mar 2024

By Ronny Allan

2 Comments

So what next?

Inspiration, Survivorship, Travel with RonnyAdvanced neuroendocrine cancer, Survivor

See the Sycamore Gap section in the post Original posts 3rd June 2014. Well we did it! Chris and I finished our 84 mile Hadrian's Wall challenge on Saturday 31 May 2014 around 1630 hours at Bowness-on-Solway. The final leg from Carlisle was listed as 14.5 miles but on our app it was more like 16 miles. We headed straight to the only pub in the village for a celebratory pint! Very happy to be finished :-)We had trained for 4 months for this challenge but it was tougher than we had imagined, particularly the effect on our feet. That's not…

18 Mar 2024

By Ronny Allan

3 Comments

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…

17 Mar 2024

By Ronny Allan

1 Comment

Things are not always how they seem – Part 2

Awareness

I met quite a few interesting people during my walk along the 2000 year old Hadrian's Wall in 2014. On Day 3, Chris and I were accompanied by our friend Dave on that day, we noticed a couple heading up the hill that we were progressing down. We also couldn't help noticing the male of the duo was continually stopping to talk to others on the way down, and we were no exception. Interestingly, his wife kept overtaking him at these points not saying a word. He got chatting to me and Dave and we worked out he was Irish. …

16 Mar 2024

By Ronny Allan

20 Comments

Neuroendocrine Tumours (NET) – benign vs malignant

Awareness, Patient AdvocacyAdenoma, Advanced neuroendocrine cancer, Benign tumour, Cancerous tumour, Carcinoid tumour, Carcinoma, High grade neuroendocrine tumour (NET), Low Grade NETs, Malignant, Metastatic Neuroendocrine Cancer, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Poorly differentiated, Surgery, Well differentiated

Reviewed and Updated 14th March 2026 One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question. It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET…

11 Mar 2024

By Ronny Allan

25 Comments

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

Patient AdvocacyBlue Book, Cancer grading, Cancer staging, Carcinoid tumour, Differentiation, ENETS, Grade, High grade neuroendocrine tumour (NET), Intermediate grade NET, Ki-67, Large cell neuroendocrine carcinoma (LCNEC), Low Grade NETs, MEN1 syndrome, Mitotic count, Mitotic rate, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET), Pathology, Poorly differentiated, Proliferative rate, Small cell neuroendocrine carcinoma (SCNEC), Stage, Surgery, TNM staging system, Well differentiated

Updated 1st April 2026 This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of for Digestive Systems is about to be published. You may see these important publications called 'Blue Books'. The main changes worth mentioning here is the addition of two new types of Gastric NETs - Types IV and V, a genetic mutation and PPI related respectively. A larger update will be added when the publication is available online. The WHO Classification of Endocrine and Neuroendocrine Tumours Words are very important in NENs To enable…

04 Mar 2024

By Ronny Allan

0 Comments

Living with Cancer? Take a break if you need one

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAnxiety, Cancer related fatigue, Depression, Incurable cancer

It's natural to feel low, worried or stressed when we're unwell, and someone with a long-term condition is more likely to experience mental health issues. I once read an article where it suggested that up to 40% of cancer patients suffer from varying degrees of sub-clinical depression. Caring for your mind is when you have a physical health issue can make a big difference to your overall wellbeing so it's worth making the effort to improve if applicable. I learned early on that when you live with any long term illness, getting through the day can be tough. For some…

01 Mar 2024

By Ronny Allan

0 Comments

February 2024 in Review – RonnyAllan.NET

NewslettersNeuroendocrine cancer

It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other sites day and night (and I do note some doing both!). I am very grateful. You know who you are - take a bow! Here is a summary of what we all achieved in February 2024. Something new, something blue and some borrowed too! Others include the ENETS Guideline series, a work in progress. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks…

25 Feb 2024

By Ronny Allan

0 Comments

Staging of Neuroendocrine Neoplasms (NENs)

Patient AdvocacyEpidemiology, Stage, TNM staging system

Stage of cancer What is stage? The extent of a cancer in the body. Staging is usually based on the size of the tumour, whether lymph nodes contain cancer, and whether the cancer has spread from the original site to other parts of the body. What are the stage numbers? Most types of cancers have 4 stages, numbered from 1 to 4 indicating a rising spread as the number is bigger. Some cancers have a stage 0 but I don't believe this applies to Neuroendocrine Neoplasms (NENs). Often doctors write the stage down in Roman numerals, so you may see…

14 Feb 2024

By Ronny Allan

2 Comments

Diagnosed with Cancer? You may get a flood of sympathy and oodles of empathy but be careful with the tsunami of advice

Patient Advocacy, Ronny Allan's "The Trouble with the NET Series"Alternative medicine, Alternative therapies

Some might think this is an odd post for someone with a massive online patient group for cancer. Well, putting aside my disclaimers, group rules about 'advice' and the strong moderation approach, I totally agree with you (thus my approach to running a group). In the past, I have written about the dangers of advice from those who mean well but in inadvertently give you not so good advice. I even wrote a critique about patient support groups in my own area of Neuroendocrine Cancer where I suggested they could be frighteningly good but also good at frightening. However, while…

12 Feb 2024

By Ronny Allan

0 Comments

Lower grade higher stage NETs – slow motion, chronic and indolent?

Awareness, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Stage, Well differentiated

ContextI write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a catch all for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). The latter is almost always an aggressive cancer and less common than its less aggressive NET relative (when Small Cell Lung Cancer is not included in the math). That said, the higher grades of NET can also be quite aggressive but very often still with a better outlook than NEC. Well differentiated NETs, particularly at the lower end of the scale tend have a…

06 Feb 2024

By Ronny Allan

0 Comments

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…

01 Feb 2024

By Ronny Allan

0 Comments

January 2024 in review – RonnyAllan.NET – Living with Neuroendocrine Cancer

NewslettersNeuroendocrine cancer

Welcome to 2024 once again and here is a summary of what we all achieved in January 2024. Something new, something blue and some borrowed too! Others include the ENETS Guideline series, a work in progress. I'm thankful to those who supported these posts, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites, we might be heading off soon! It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site and the other…

01 Feb 2024

By Ronny Allan

4 Comments

Things not to say to someone with cancer

Inspiration, SurvivorshipCancer, Cancer survivor, Invisible illness

This topic comes up regularly on patient forums, twitter, Facebook..... in fact everywhere! Personally, I don't tend to get too excited about it, although there can be extremes. Most people (not all) are just stumped to know exactly what to say. Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never…

29 Jan 2024

By Ronny Allan

4 Comments

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…

25 Jan 2024

By Ronny Allan

28 Comments

Scanxiety – I just don’t get it!

Inspiration, SurvivorshipNeuroendocrine cancer, Quality of LIfe (QoL), Scan, Scanxiety

OPINION ...... but read the post before you form your own based on the post title The internet is full of blogs and articles about a subject which is described as 'scanxiety' - the joining of the words 'scan' and 'anxiety'. I also noted some authors using the words 'scanxiety' and 'anxiety' interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names - at the end of the day, it's just anxiety regardless of whether it is waiting…

22 Jan 2024

By Ronny Allan

0 Comments

Sequencing of Somatostatin-Receptor–Based Therapies in Neuroendocrine Tumor Patients

Patient Advocacy, TreatmentPeptide receptor radionuclide therapy (PRRT), Somatostatin analogues, Somatostatin receptors (SSTR)

There can be no doubt that the discovery of somatostatin receptors as a means to treat Neuroendocrine Tumours has been a huge success. Additionally, scientists looked at a theranostic angle and provided somatostatin receptor based imaging for diagnosis and surveillance purposes. Many patients are prescribed somatostatin anlaogues shortly after diagnosis and this has led to a reduction in the morbidity that comes from active carcinoid syndrome and has reduced the incidence of carcinoid heart disease. More recently, the introduction of somatostatin receptor based PETs, taking over from the elderly Octreotide scans, has meant speedier and higher quality identification of NETs…

20 Jan 2024

By Ronny Allan

0 Comments

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…

19 Jan 2024

By Ronny Allan

0 Comments

Clinical Trial – Lutathera NETTER-2 Important Update

Clinical Trials and Research, TreatmentLutathera, Peptide receptor radionuclide therapy (PRRT), Radioligand therapy

UPDATE - June 5th 2024. [177Lu]Lu-DOTA-TATE plus long-acting octreotide versus high‑dose long-acting octreotide for the treatment of newly diagnosed, advanced grade 2–3, well-differentiated, gastroenteropancreatic neuroendocrine tumours (NETTER-2): an open-label, randomised, phase 3 study Summary There are currently no standard first-line treatment options for patients with higher grade 2–3, well-differentiated, advanced, gastroenteropancreatic neuroendocrine tumours. We aimed to investigate the efficacy and safety of first-line [177Lu]Lu-DOTA-TATE (177Lu-Dotatate) treatment.MethodsNETTER-2 was an open-label, randomised, parallel-group, superiority, phase 3 trial. We enrolled patients (aged ≥15 years) with newly diagnosed higher grade 2 (Ki67 ≥10% and ≤20%) and grade 3 (Ki67 >20% and ≤55%), somatostatin receptor-positive…

16 Jan 2024

By Ronny Allan

0 Comments

Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide Versus Observation in High-Risk Pancreatic Neuroendocrine Tumors (SWOG S2104)

Clinical Trials and ResearchCAPTEM, Pancreatic NET (PanNET)

What is SWOG S2104? A Randomized Phase II Trial of Postoperative Adjuvant Capecitabine and Temozolomide Versus Observation in High-Risk Pancreatic Neuroendocrine TumorsPancreatic neuroendocrine tumors (pNETS) account for about 1-2% of all the pancreas tumors for which resection is the only curative intent modality, however, despite surgery, many patients will experience recurrence. Tumor size, positive lymph nodes and higher grade are prognostic factors for recurrence. The U.S. Neuroendocrine Tumor Study Group published a predictive score (Zaidi score but also see inclusion criteria) demonstrating that tumors with a score ≥6 had a 33% likelihood of recurrence by 24 months. Furthermore, it is…

12 Jan 2024

By Ronny Allan

1 Comment

FDA Tentatively Approves Generic PRRT Lutetium Lu 177 Dotatate (177Lu-PNT2003) in GEP-NETs (plus news of a new SSTR PET!)

TreatmentGastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Generic drugs, Peptide receptor radionuclide therapy (PRRT), Radiolabelled somatostatin analogue, Somatostatin receptors (SSTR), SSTR-PET

We have generic somatostatin analogues, generic targeted therapy e.g. Afinitor, and I guess it was only a matter of time until we got generic PRRT (Radioligand Therapy) e.g. generic Lutetium Lu177 dotatate. This news begins that process which is also based on a clinical trial which took place in Canada (195 participants) and which now appears to be complete. The announcement comes from US but if this is realised, you can expect it to be available in many other countries and continents where there is a market. This may even drive down prices and/or increase availability. "PNT2003: The First Radioequivalent…

02 Jan 2024

By Ronny Allan

0 Comments

Me and the other big C December 2023

Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, COVID-19, Ground glass opacities

When covid-19 first hit the scenes early 2020, it was a bit of a shock, a bit of a worry, but most people (including yours truly) thought it would be over in a few months. So it was a bit of a shock when I tested positive in Dec 2023 shortly after getting back from a trip to London. Strangely, Chris was not affected. After I tested positive, we effectively isolated each other and took precautions.Back in 2020. we both had bad colds/flu in March 2020 but we will never find out if that was covid or not. I wrote…

01 Jan 2024

By Ronny Allan

0 Comments

RonnyAllan.NET – a review of 2023

NewslettersAdvanced neuroendocrine cancer

ReviewIn 2023, I managed to push beyond the 2022 totals, that was a major boost for me given December was a write off due to illnes. To be honest, I’m still flabbergasted by reaching one million views in 2018, and then reach 2 million in December 2020. I'm a third of the way to 3 million at 1 Jan 2024. It just kinda happened, there wasn't a plan! It's mindboggling. I'm grateful for every single view though.2023 was a challenging year, mainly because the pandemic continues to have some latent impact on my social media including in terms of growth. 2020…

29 Dec 2023

By Ronny Allan

0 Comments

A review of December 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

NewslettersAdvanced neuroendocrine cancer

December is always quieter than other months for obovus reasions, although I do try to maintain normality. The month started well and then turned into an absolute disaster. A death in the family followed by my second Covid-19 infection and at the time of writing, although now testing negative, I am still strugging with what feels like a regular and lingering chest infection. I'm thankful to those who supported me througout December, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites,…

21 Dec 2023

By Ronny Allan

5 Comments

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…

18 Dec 2023

By Ronny Allan

6 Comments

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…

12 Dec 2023

By Ronny Allan

0 Comments

Novel Therapeutic Target for Pulmonary Neuroendocrine Tumours Uncovered

Clinical Trials and ResearchLung NETs

A culture of miniature neuroendocrine tumors. [Talya Dayton, copyright: Hubrecht Institute.] I'll flesh this out in due course, but this is something I'd like to track. Pulmonary NETs don't have as many treatments as Gastroenteropancreatic NETs (GEP NETs). Thanks for reading. Druggable growth dependencies and tumor evolution analysis in patient-derived organoids of neuroendocrine neoplasms from multiple body sites Talya L. Dayton Nicolas Alcala Laura Moonen Matthieu Foll Lynnette Fernández-Cuesta Hans Clevers Show all authors Show footnotes Open AccessDOI: https://doi.org/10.1016/j.ccell.2023.11.007Quick summary - click here Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of…

11 Dec 2023

By Ronny Allan

0 Comments

There are no perfect answers about an imperfect cancer

Awareness, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Heterogeneous, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............". The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements. This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy.This represents a challenge for regular healthcare professionals but also for Neuroendocrine Neoplasm specialists who are answering many questions asked by patients and their loved ones on a daily basis. I very much suspect this challenge is the same for many types of…