Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma
The riddle.For many years, I've been reading and blogging about Neuroendocrine Neoplasms, NENs for short. NEN is a relatively new term which came after my diagnosis. Nomenclature is still evolving and there is always something to learn. It's also true to say the term 'Neuroendocrine Neoplasms' is the same as saying 'Neuroendocrine Cancer'. These neoplasms are cancers that begin in specialised cells called 'neuroendocrine cells'. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells, particularly the latter. In face one NET specialist said "While the name “neuroendocrine” implies that these tumors involve both nerve cells and…
Ronny Allan – Every picture tells a story
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),…
Neuroendocrine Cancer – If you can see it, you can detect it!
Updated December 2025BackgroundScanning 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 might resolve this' and…
F*** you cancer, I’m still here!
On 26 July 2010, had you said I'd be writing this 14 years later, I would have said no.I was diagnosed on 26th July 2010. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought. 10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think. Think great doctors, better treatments, better guidelines and sprinkle some luck on top. Some might say attitude helps but clearly scientific proof might be lacking…
Neuroendocrine Cancer – I didn’t hear it coming
A Neuroendocrine Cancer awareness post by Ronny Allan. The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned. However, some cancers are in the 'difficult to diagnose' category. Certain types of Neuroendocrine Tumours (NETs) are in this difficult to diagnose category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. However, in many cases which don't seem to make the statistics, it can be incredibly quiet leading to incidental diagnosis including at an advanced stage. It's SNEAKY! Every year the advocacy organisations push out skewed…
Neuroendocrine Cancer: Glossary of Terms
Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer sites. How to use this list: 1. If your term begins with an A, see the list of As etc. Ditto for B to Z. Select your term from the list, the definition will show along with any of my blogs where that term is mentioned – this adds context. . 2. Numerical terms are also listed. Please note I’m constantly working on the repository to clean up all definitions, adding and removing links where necessary, and…
A Neuroendocrine Cancer diagnosis: I didn’t even feel ill
I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp…
“What are you doing this afternoon”
On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, in my head, I wasn't actually ill..... two months…
Other people get cancer, not me
I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp speed'.…
Neuroendocrine Cancer: Beware But Be Aware
An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer. Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.It will grow in your body without you knowing. It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations),…
Colonoscopy Comedy
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…
Diagnosed with Neuroendocrine Tumours: Hurry up and wait
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…
Neuroendocrine Cancer: If your doctors don’t suspect something, they won’t detect anything!
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…
Never mind the Bollocks – here’s the cancer
I don't tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to be teased out. For those who follow my blog in detail, you may remember the post entitled "Neuroendocrine Cancer - Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences" (now named "a difficult jigsaw)As you can see from the title above, I got hooked on a bunch of 'synonyms' that represent the difficulty in sorting out what can be attributed to Neuroendocrine Tumours (NETs) and what might be something else. You'll note they all begin…
Neuroendocrine Cancer: Question, Clarify, Confirm
One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not. And I don't always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date. I attempted to pin this down in my much read "10 questions to ask your specialist"…
Diagnosis – I’m no longer in control
Diagnosis The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my General Practitioner (GP), referred to a specialist, had a bunch of tests, and now referred to an Oncologist. There were many hints along the way, but it did not reduce the out of body experience I was having that day. This happens to other people but not me. I felt in control Rewind 2 months to May 2010...... I was happily working, getting stuff done, making things work. I had sufficient autonomy…
Still here, just reshaped
The tallest tree in Wales had been damaged by a storm and was supposed to be cut down, but chainsaw artist Simon O'Rourke - Tree Carving found a better solution to symbolize the tree's last attempt to reach the sky. I suspect you could also call Simon a tree surgeon. I was reshaped too! In one of my diagnostic stories, I said that my body was slowly dying and that was just how it felt having been diagnosed with something that had not made some grand announcement. It slowly just crept into my life, occasionally giving small clues that it…
13 years – I’m still here!
I finally made 13 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 48 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…
NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence
NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny Allan What is a NET Specialist? "What is a NET Specialist" is a frequently asked question but there's no official definition of what constitutes a "NET Specialist", and it may differ from country to country/from region to region. Similarly, many people ask what makes a doctor an expert and that is a difficult question but let's just say specialist and expert are the same thing given there is no exam or special qualification to become one. In the broadest sense, a NET Specialist is a doctor…
Neuroendocrine Cancer: Catch them early, not late!
Diagnosing Neuroendocrine Neoplasms (NENs). It's no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can sometimes be difficult to see. Plus, many patients present with relatively routine day to day symptoms suggesting a myriad of day-to-day illnesses seen daily in every GP/PCP practice. But conversely, many are found incidentally while checking for something else, or in reaction to a visit to the ER/A&E or as a referral by primary care physicians for further checks at secondary facilities. A few examples: 1. Most appendiceal NETs are found when patients present with…
A spotlight on 5-HIAA
Background. It's important to note that not every type of Neuroendocrine Neoplasm will get the same tests due to the heterogenous nature of this cancer type. Some are more specific than others. A wide range of tests may be necessary at diagnosis if the type of NET is not clear. This post will cover one of the main tests to check for a common type of Neuroendocrine Tumour (NET) that is known to secrete excess amounts of the hormone Serotonin leading to symptoms indicative of Carcinoid Syndrome. These tumours are often labelled using the antiquated and misnomer term ‘Carcinoid Tumour’ but more…
RonnyAllan.NET – a review of 2022
ReviewIn 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost. It takes 3-4 years to get a million hits based on current performance. To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened! I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal but 2022 has seen some pickup. Some of it is due to less writing but much…
12 years – I’m still here!
I finally made 12 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 47 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…
Neuroendocrine Cancer: diagnostic dilemmas in July 2010
Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010. I guess one of the reasons I do this is to be thankful that I'm still alive but also, I have a sneaking suspicion that I'm still trying to remember small detail from that period. It had felt surreal ever since 8th July when the secondary care investigating doctor sent me for a CT scan leading to a biopsy on 19th July. That scan and subsequent biopsy were to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just…
Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021
Background. For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors. There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com)…
In the early days, I thought I was going to die
Opinion. It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability. BUT there is also the thought of dying of cancer. I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65. I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger…
Let’s Talk About NETs (#LetsTalkAboutNETs)
I do a lot of writing about NETs but I guess I've also done some talking too. Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings. Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides. Please note videos, presentation slides, and any Podcasts are in English. I'll list some of them below for your perusal. I will keep adding them so they're all in one place. Published TalksAnn Edgar Trust - 31st August 2022I was invited by Gordon Mackay who runs…
11 years – I’m still here!
I finally made 11 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in…
10 years, I’m still here
I finally made 10 years since I was diagnosed on 26th July 2010. A milestone I was not certain at the time I would reach. However, as things progressed, as treatment was administered, as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes and settled in my liver and beyond including, strangely, in my…
Don’t be cavalier with a cancer diagnosis
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. In fact it happened on 24th July 2010, 10 years to the date this post was published. (Spoiler alert - I'm still here).I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight,…
Breath test with the goal of detecting multiple cancers – ready to start trials
While it's a long way off becoming reality, this is quite an exciting clinical trial. I have no idea if it will pick up Neuroendocrine disease but initially, patients with suspected oesophageal and stomach cancers will be asked to try the test. Later it will be extended to include prostate, kidney, bladder, liver and pancreatic cancers. It's possible that Neuroendcorine tumours in these locations might be picked up or at least show up some abnormality that triggers further checks. The fact that Cancer Research UK is involved gives me some confidence as they tend to back the strong horses. I…
Neuroendocrine Cancer: Patient Power!
There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in…
Neuroendocrine Cancer – unexpected detours
I've mentioned 'luck' a few times in many of my 'cancerversary' milestones - these tend to make me reflect on my experience. Even though I was metastatic at diagnosis, I think of myself as lucky on the basis that my tumours were found by 'chance', or to be more accurate, found following an innocuous set of circumstances. This is a common diagnostic experience for many - but more people need that luck via better education and awareness. Click here to hear me talk about my diagnosis. As we know, Neuroendocrine Cancer can sometimes be very difficult to discover and diagnose.…