The 5 E’s (of Carcinoid Syndrome)

The 5 E’s (of Carcinoid Syndrome)

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

Don’t worry, I really am OK!

I read an interesting article in the BBC entitled "Why people keep quiet about their battle with cancer" and a similar article from Fred Hutch in USA "Why people keep quiet about their battle with cancer" is also interesting reading. The usual range of reactions and fears can be found in these stories and it made me think about my own experience. I think there are two key themes involved here: Talking about Cancer Managing your illness Firstly, as I have an international audience, I thought I'd introduce what might not be a well-known British trait - the 'stiff upper lip'.  For the uninitiated, I'm…
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2024 Update from Ronny Allan: Reassuringly stable!

2024 Update from Ronny Allan: Reassuringly stable!

In every surveillance session I’ve had since diagnosis, there was always something to report.  Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings).  However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me.  That sentence alone probably translates to “stable“. After a surveillance event in 2021, I was awarded the accolade of “reassuringly stable“, a status which I was happy to accept! In 2022, despite evidence of disease, I was stable!  In 2023, I was given the headline of "No evidence…
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Incidental findings and Incidentalomas – NET or NOT

Incidental findings and Incidentalomas – NET or NOT

Incidental findings and Incidentalomas - NET or NOT During my diagnostics, I presented to my general practitioner as someone with symptoms of iron deficiency anaemia with some weight loss (not a lot but some).  The GP at this point had no alternative but to refer me to secondary care where they had the tools to investigate further - e.g. imaging and endoscopies. The use of laboratory testing and imaging devices are there to not only back up the a doctor's clinical hypotheses but also to test them, i.e. these laboratory tests and imaging checks may lead to others. Differential checks…
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Renal Cysts – something or nothing?

Renal Cysts – something or nothing?

When I was diagnosed and subjected to several CT scans, each one noted the existence of a renal cyst.  I was told it was nothing to worry about although I did find the size worrying on the basis I didn't think the average kidney could be so big to house a 55mm cyst!  That was back in 2010 and they still mention that cyst today, but it no longer worries me other than it is now 67mm.  Like many cysts in the human body, these incidental findings on diagnosis are pretty common. How Common are Renal Cysts Simple renal cysts…
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Biopsies – tissue is the issue!

Biopsies – tissue is the issue!

First published 19th July 2023.  Major update on 6th August 2024 to including key marker and histopathological tissue biomarkers used in Neuroendocrine Neoplasms (NENs).  My diagnostic background On 19th July 2010, I had a liver biopsy.  This followed some low haemoglobin (Hb) and some weight loss reported to my GP surgery in May, I met with a specialist on 8th July and after sending me straight for a CT scan on the same day, the output from that CT confirmed something was drastically wrong. Clearly CT scans don't diagnose cancer including grade, so I eventually had to have a liver…
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Clinical management of typical and atypical carcinoids/neuroendocrine tumors in ENETS centres of excellence (CoE): Survey from the ENETS lung NET task force

Clinical management of typical and atypical carcinoids/neuroendocrine tumors in ENETS centres of excellence (CoE): Survey from the ENETS lung NET task force

Continuing with the output of updated clinical guidelines from ENETS, this paper is unlike the others so far in 2022/23/24 where the guidelines were set against several clinical questions for particular scenarios (presumably common in the NET patient population).  So far, the clinical guidelines have centred on Gastroenteropancreatic Neuroendocrine Neoplasms (GEP NENs) (Neuroendocrine Carcinoma (NEC) and Neuroendocrine Tumours (NET)). The latest output comes in a different format than the GEP NEN output but is based on Lung NETs, i.e. well differentiated Lung NETs. I'm hoping it is a precursor to a set of updated Lung NEN guidelines.  Although, as you…
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Neuroendocrine Cancer:  Glossary of Terms

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…
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A Review of July 2024 on RonnyAllan.NET

A Review of July 2024 on RonnyAllan.NET

Here is the monthly summary of what we all achieved in July 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 and other social media sites. I was literally  on holiday for the enture month of July but still managed over 25,000 blog views. I wish I could do more but there's just little old me!  And Chris too of…
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The Hidden Pheochromocytoma

The Hidden Pheochromocytoma

I've written a few times about Pheochromocytomas and Paragangliomas, allegedly rare types of Neuroendocrine Tumour (NET).  I've also written about various hidden diagnoses of NET cases where they are eventually found in living patients having been 'hidden' within other diseases, i.e. misclassified in cancer registries or even not classified as cancer at all.  If you read any medical site (including hospitals which treat Pheochromocytoma) you will note statements along the lines of "mostly benign" - so it's possible the incidence rate is vastly understated on this factor alone. The other interesting data I found is that many are not discovered…
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I’m still here

I’m still here

I didn't expect to be here but I am I was diagnosed with metastatic Neuroendocrine Tumours (NETs) on 26th July 2010.  Until I arrived at my 5th anniversary, I hadn't thought much about how (or if) I should mark these occasions.  I never thought I would dwell on such things as 'Cancerversaries' but I now totally get why many patients and survivors do. There are several types of 'Cancerversary' that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis,…
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A Neuroendocrine Cancer diagnosis:  I didn’t even feel ill

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…
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I’m not sick, I just have cancer

I’m not sick, I just have cancer

Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call…
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Neuroendocrine Cancer: The Perfect Storm

Neuroendocrine Cancer: The Perfect Storm

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

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

I first published this blog post after the dust settled on the media coverage of the death and funeral of Neuroendocrine Cancer patient Aretha Franklin.  I was saddened by the death of this icon of the music industry but more determined to speak out about the need for our community to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and incredibly, including doctors. About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the…
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European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumours

European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumours

Small Intestine NETs The latest European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumours As someone who was diagnosed with metastatic small intestine NETs in 2010, I've clearly written many words about my own experience and how I was treated.  However, I've also researched extensively about these issues including previous guidelines for the management of these common but complex tumours. They are mostly indolent, but they can be aggressive; they are legendary spreaders, often in silence. They can cause  damage before and after diagnosis, and it is these tumours that are predominately…
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Poker Face or Cancer Card?

Poker Face or Cancer Card?

  Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me from getting on with whatever I needed to do. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defence it was…
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FDA has approved lutetium Lu 177 dotatate injection (Bexlutry) for the treatment of adult patients with SSTR+ GEP-NETs

FDA has approved lutetium Lu 177 dotatate injection (Bexlutry) for the treatment of adult patients with SSTR+ GEP-NETs

Update 15th September 2026 The FDA has approved lutetium Lu 177 dotatate injection (Bexlutry) for the treatment of adult patients with somatostatin receptor (SSTR)–positive gastroenteropancreatic neuroendocrine tumors (GEP-NETs), including foregut, midgut, and hindgut NETs. Further update to follow. Update 1st July 2026. This approval was being held up by legal processes after a patent dispute brought by Novartis subsidiary Advanced Accelerator Applications over their respective lutetium-177 (Lu-177) dotatate products. However, a court victory on 17th June 2026 paves the way for Curium’s plans to provide targeted radioligand therapy to U.S. patients with GEP-NETs. A new PDUFA (Prescription Drug User Fee…
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Living with NETs – nobody said it was easy

Living with NETs – nobody said it was easy

I've been living with NETs since 26th July 2010 ....... well, since at least the earliest day I can use on clinical record. Clearly, I had been living with NETs before that, I just didn't know for how long and I never will - it no longer matters. The clues were there but why would I make a correlation to a disease I had never head of? I have no recollections of difficulties before diagnosis as I was cracking on with my successful post military career, doing OK, extremely busy (and therefore ignoring my health!). The symptoms of flushing were…
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Understanding your Somatostatin Receptor (SSTR) PET/CT Scan Results

Understanding your Somatostatin Receptor (SSTR) PET/CT Scan Results

Background In my online patient group, there is constant discussion about the meaning of both pictures and words on scan reports.  The one that seems to cause the most confusion is PET scans, mainly somatostatin receptor (SSTR) PETs such as Ga68 and Cu64 variants. Worth adding that it's the addition of a nuclear tracer that makes PETs seem different. Generally speaking, the PET hardware is essentially the same.  Most have a built-in CT scan, much less frequently an MRI scan. Confusion is often triggered by healthcare system processes where the patient receives the report before the appointment to discuss the…
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“What are you doing this afternoon”

“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…
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Please flush after use!

Please flush after use!

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

Neuroendocrine Cancer – the diarrhea jigsaw

Reviewed and updated 5th July 2024 Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma, PPoma. Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load. There are other reasons that might be causing or contributing, including (but not…
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The Heterogeneity of Neuroendocrine Neoplasms

The Heterogeneity of Neuroendocrine Neoplasms

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are a group of 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. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only…
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The 10 most read articles of all time on RonnyAllan.NET

The 10 most read articles of all time on RonnyAllan.NET

Welcome These 10 posts make up around 16% of the total views of over 700 posts.  I guess people like them!   But have you read them?  I shortlisted them here for your perusal. Enjoy! As of Sep 1st 2025. Click on the article blue bold text to read, and please feel free to share. Does not include the home page which is currently running at around 87,000 views. Neuroendocrine Cancer - normally slow but always sneaky - an awareness post from Ronny Allan with 65,433 views Neuroendocrine Cancer? - Where to find a NET Centre/Specialist Worldwide with 62,675 views The Classification,…
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The 50 shades of Neuroendocrine Neoplasms

The 50 shades of Neuroendocrine Neoplasms

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are a group of 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. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only…
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Neuroendocrine Cancer: No one gets it until they get it!

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

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

Neuroendocrine Cancer: the blue dot needs to be bigger, but it must be the right message

Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010.  But it should be further forward, much further forward.  In some areas, we appear to be going backwards. It's not where it should be because some people, some organisations, including some so-called advocacy organisations, at least one regional scientific organisation and some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message.  I respectfully suggest they stop it as I believe they are doing patients and NET awareness a disservice. A recent…
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Pancreatic NET with carcinoid syndrome – not as common as you think

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

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

Sometimes you gotta climb that hill …….. twice!

Climbing hills are tough, but within my limits, I make the effort and always enjoy the end product, the views and the feeling of accomplishment.  The lead picture is a before and after, 2018 and June 2024.  Some things are different including dress choice, the weather and my hair colour! Believe it or not, at 68 years old, I'm fitter on the 2024 version! In some ways, my diagnosis and subsequent tests and checks were much easier than the treatment, particularly the surgeries.  My first one was really tough with an 18 day stay and at times, I felt quite…
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Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

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

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

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Nothing in Neuroendocrine Cancer is ever black or white.  One great example is diet and nutrition. I've lost count of the number of diet related questions I receive online or are posted in my private Facebook support group.  The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer".  The answer is almost impossible because everyone is different - even generalisations can be way off for many causing unnecessary changes and/or worries. Here are a few of the reasons why these things can get muddled: 1. Not everyone has access to a NET…
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Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

This subject comes up a lot in patient groups. The heterogeneity of Neuroendocrine Neoplasms (a term for both well differentiated NET and poorly differentiated NEC) tends to be forgotten as people start to make blanket statements as if it applies to every single NET patient. It becomes a rather circular discussion where certain readers might even be unnecessarily misled about their outcome casually suggested by someone who knows nothing about their diagnostic and treatment history. Part of the problem is the official cancer terms built in the 1970s remain in use today, but they do not fit the vast changes…
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Low and High Residue Foods

Low and High Residue Foods

It's clear that no single diet is suitable for everyone, there are just too many variables in Neuroendocrine Cancer. They are a heterogeneous grouping of cancers with different issues; and to a certain extent, different types and different circumstances can throw up different problems.  If you’re not careful, you can go into the 'nth degree' on this subject, so tailored advice from a well-versed registered dietitian is always the preferred option.  I wanted to look at particular circumstances in this article as a low residue diet may be unsuitable for many Neuroendocrine Cancer patients. A low residue diet is sometimes…
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The trouble with the NET (Part 4) – Cancer can be fatal but so can fake cures

The trouble with the NET (Part 4) – Cancer can be fatal but so can fake cures

Message from Ronny in 2026.  Fake health news is now being spread on an industrial scale. I will try my best to counter that on my public pages and in my private where I see some members who have unwittingly believed what they read.  No matter where you look on social media, there are millions of sites claiming that 'this' and 'that' can cure cancer.  If you analyse some of the things that can apparently 'cure' cancer, you will normally find that behind these fantasies, there is someone selling something, a book, a video, a product. I was also interested…
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Neuroendocrine Cancer: Those who know, know!

Neuroendocrine Cancer: Those who know, know!

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

Neuroendocrine Cancer – not average, just mean

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

Metastatic Neuroendocrine Tumours – Incurable but treatable

When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer".  Fortunately, my wife…
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Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

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

Reviewed and updated 23rd January 2024 Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought? Background Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (listed below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another. Often the the best diet…
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Try these 5 blog posts

Try these 5 blog posts

Just click on the pictues and read(and hopefully 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), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a clinical service, trial/study or therapy does…
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Ryan Gonzales – wrestling with Pancreatic Neuroendocrine Cancer

Ryan Gonzales – wrestling with Pancreatic Neuroendocrine Cancer

Great story from Ryan who was diagnosed with stage IV Pancreatic NET in 2022.  Ryan is a wrestler and a wrestler coach.  He's therefore used to facing tough situations.  His podcast sponsor has used some fine words which I will leave you to read.  I see many patients facing up to these situatons on a day to day basis but I think it's great that Ryan is telling his story to help others. Ryan is married with 4 children, so, like many of my readers, he has a lot to live for. I wish him the very best as he…
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A Review of May 2024 on RonnyAllan.NET

A Review of May 2024 on RonnyAllan.NET

Here is the monthly summary of what we all achieved in May 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.  Every share spreads awareness and you potentially save someone's life. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. I wish I could do more but there's just little old me!  And Chris too of course for those following my exploits on…
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NHS England’s new Cancer Vaccine Launch Pad

NHS England’s new Cancer Vaccine Launch Pad

Update August 2025.  Patients in England with advanced head and neck cancer are being fast-tracked into a ground-breaking mRNA cancer vaccine trial, as the NHS expands its Cancer Vaccine Launch Pad (CVLP) to accelerate access to cutting-edge treatments. Update April 2025.  Melanoma patients in England get fast-track access to cancer vaccineUpdate March 2025. The UK government announced their intention to abolish NHS England and bring it back under the Department for Health and Social Care (DHSC) (i.e. a merger).  The change programme will take up to 2 years.  In the meantime, the blog will be updated with new nomenclature when further information is…
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I bet my flush beats yours?

I bet my flush beats yours?

Background Neuroendocrine Tumours (NETs) can sometimes present with one or more vague symptoms which occasionally results in a lengthy diagnostic phase for some.  Sure, there can be issues with doctor experience and knowledge that can add to the problem. However, some people do present with multiple vague and confusing symptoms and some people have comorbidities that have similar symptoms.  Textbook diagnostics just don't make sense, sometimes even when the doctor suspects a NET i.e. classic symptoms of 'something' but with negative markers for NETs. Clearly, those are extreme cases and just like other complex diseases, diagnoses of NET can be…
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The trouble with the NET (Part 3) – Miracle Cures

The trouble with the NET (Part 3) – Miracle Cures

Since I started blogging, I've had to become quite savvy at forming headlines for my posts as the wording can be a factor in whether someone reads it or not. A post picture can also influence.  There's a third factor and that is credibility - I'd like to think I've worked hard to earn that level of trust in my 'product'. I use the NET to talk about NETs!  I'm a genuine guy with a genuine purpose and I don't want to sell you anything - my 'product' is free. However, the 'NET' can also provide 'misinformation'. Unfortunately 'misinformation' also includes…
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Other people get cancer, not me

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'.…
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Neuroendocrine Neoplasms – not as rare as you think

Neuroendocrine Neoplasms – not as rare as you think

Update as at 9th June 2026 - see "Meanwhile in Canada ...." sectionUpdate as at 5th October 2025 - USA - Prevalence of Neuroendocrine Neoplasms breaches the Orphan Disease threshold for the first time (officially) In this cross-sectional study evaluating 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this…
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Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

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

Carcinoid Syndrome – chicken or egg?

We’ve all heard the age-old question about the chicken and the egg?  Scientists claimed to have 'cracked' the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken's ovaries. Therefore, an egg can exist only if it has been inside a chicken. There you have it! On a similar subject, I'm often confused when someone says they have been diagnosed with 'Carcinoid Syndrome' but not one of associated 'Neuroendocrine Tumours' - my instinct says that is…
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Neuroendocrine Cancer – a difficult jigsaw

Neuroendocrine Cancer – a difficult jigsaw

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