Let’s be clear about Neuroendocrine Tumours – it’s a cancer!
Dear Readers Another week and another discussion about 'benign vs malignant' in my group. Let's put that into context and dispel one big myth. I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a 'catch-all' term for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). Notwithstanding the fact that there is a Grade 3 NET nowadays, the former is often described as 'slow-growing or 'indolent' in behaviour and the latter is almost always faster growing and a more aggressive cancer. NEC is also frequently…
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…
Chemo or not Chemo – that is the question
I often see certain drugs for the treatment of Neuroendocrine Tumours (NETs) described as "chemotherapy". Although since I wrote the first edition of this post in 2016, I don't see it as much today in 2024. Education is a wonderful thing! I think there must be some confusion with more modern drugs which are more targeted and work in a different way to Chemotherapy. According to Mayo Clinic: "In many ways, cytotoxic chemotherapy is "targeted" at specific molecules that regulate progression through the cell cycle; however, these targets are generally not specific for tumour cells. Because systemic cytotoxic chemotherapy targets…
Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?
Updated 25th August 2024 to add data on scenarios of liver and peritoneal metastases, plus a review of the Influence of Lymphatic, Microvascular and Perineural Invasion on Oncological Outcome in Patients with Neuroendocrine Tumors of the Small Intestine. It also incudes links to the European Neuroendocrine Tumor Society (ENETS) 2024 guidance paper for the management of well-differentiated small intestine neuroendocrine tumours Small Intestine Neuroendocrine Tumours (SI NET) are one of the most common types of Neuroendocrine Cancer, and also one of the most challenging to diagnose and then treat. Patients can have a very good outlook even when presenting with metastatic…
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…
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…
I can see my invisible illness
As I ponder my annual surveillance this summer and wonder what will be discussed, I also think about how far I've travelled and what I have been able to do. It's more than I thought I'd be able to do, I didn't expect to still be here. Often, I feel lucky. Perhaps an odd thing to say when I'm living with Stage IV cancer. But those cards were dealt in 2010, and I now play with a new deck where I do have some control over how those cards are played. As long as it's not a flush! No pity…
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 are not misdiagnoses, they are part of the…
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. Like many cysts in the human body, these incidental findings on diagnosis are pretty common. How Common are Renal CystsSimple renal cysts are very common, and the incidence increases with…
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…
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…
Clinical Trial: 177Lu-DOTATATE Modified Delivery Based on Individualized Dosimetry (LUMOD-ID)
What is the LUMOD-ID trial? This is a randomized controlled clinical trial evaluating the impact of forward planning dosimetry for Lutetium-177 DOTATATE (Lutathera, Novartis Pharmaceuticals), a radiopharmaceutical approved to treat neuroendocrine tumors by the U.S. FDA. The primary outcome measure is to determine objective response rate in patients with grade 1 or 2 gastroenteropancreatic neuroendocrine tumors (GEP-NET) treated with dosimetrically-determined LUTATHERA administration compared to active control. This is done at 6 months after treatment completion along with a secondary outcome correlation of hematologic toxicities every 6 months for 5 years. The remaining secondary outcome measures are after 5 years to…
Neuroendocrine Cancer – it takes guts
The majority of Neuroendocrine Tumours (NETs) are slow growing (well differentiated). However, many tumours can be silent (non-functioning) for some years before they start to 'function' and inform you of their presence. Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments. Moreover, in most cases, the appearance of a functional tumour often indicates the disease has metastasised and could now be incurable. Some tumours will grow and metastasise without syndromes, i.e. they are non-functional. These may become functional at some point in the future. However, with most slow-growing NETs, this…
14 years since diagnosis, I’m still here
I finally made 14 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 49 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, and…
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 questons 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 differeniated Lung NETs. I'm hoping it is a precurser to a set of updated Lung NEN guidelines. Although, as you will…
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…
Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors
Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine TumorsUpdated 31st July 2024 to add Phase 1 results and info regarding Phase 2. Clinical Trial: Triapine and Lutetium Lu 177 Dotatate for Neuroendocrine Tumors - What is PRRT?I'm guessing most of my readers know what Peptide Receptor Radiotherapy (PRRT) is. But for those new to this field, read more hereWhat is Triapine?Triapine is a ribonucleotide reductase (RNR) inhibitor, I.e. it helps repair DNA. When I research this drug, I can see it is used in numerous examples of clinical trials in an anti-cancer setting alongside radiotherapy and chemotherapy, in many cancers.Triapine in…
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…
Lanreotide for Lung NETs – SPINET Clinical Trial
Reviewed and updated 30th July 2024. Phase III trial data update. Update 30th July 2024. This trial had a low particpation repsonse. Experts cited the main reason was the increasing use of SSAs for Typical and Atypical Lung NETs in clinical practice; as such, patients were reluctant to enroll in this study, with the risk of receiving a placebo, when they could access the active treatment with a prescription. The above is unfortunate but perhaps the wording of some approvals caused confusion about scope. Together with pragmatic compassionate use in cliniclal practice this has perhaps had an adverse affect in…
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…
I’m still here
I wasn't supposed 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,…
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…
Diabetes – The NET Effect
Updated January 2026Originally published September 2018. My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream. Bubbling behind the scenes and clamouring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes with a score…
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…
Neuroendocrine Cancer: The Perfect Storm
The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UKAs 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 the route for…
Sometimes you just gotta climb that hill!
It was a little bit foggy, wet, windy and very cold and that was at the bottom of the hill we were looking up at. It wasn't a terribly big hill, but I knew it would need considerable effort and some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we simultaneously said, "do we really want to go up that in this weather?" Oh yes ....... no pain, no gain! So, we went up the hill and it hurt. Up there, it was wetter, windier and much…
Alcohol – the NET Effect
Opinion. First published in January 2016. Social Media is currently full of 'Dry January' articles and of course many charities will benefit as people will be motivated if they are abstaining from alcohol for a good cause. Nothing wrong with that and no doubt some individuals will also see it as a way to cut down or at least lessen the effects of a very wet December! I've never been a big drinker but I do like the odd beer now and then. When I was diagnosed with metastatic Neuroendocrine Tumours (NETs), I hadn't really thought much about how this might affect my body. It…
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…
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…
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 defense it was really…
Road ahead closed – Bowel Obstructions
OK - we've gone through diagnosis; we've gone through treatment and now we need to live with the consequences of cancer and its treatment. Not a day goes by when I don't feel some twinge or some minor pain, and I think 'what was that?'. Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older! The natural tendency is to think your cancer is causing these things.... easy to say, but very often not easy to prove. However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel…
Curium Submits New Drug Application for Lutetium Lu 177 Dotatate Injection
Curium Submits New Drug Application for Lutetium Lu 177 Dotatate Injection(St. Louis. – 09 July 2024) – Curium, a world leader in nuclear medicine, announced today that it has submitted its 505(b)(2) New Drug Application for Lutetium Lu 177 Dotatate Injection, which, if approved by the U.S. Food and Drug Administration (FDA), would be intended for the treatment of somatostatin receptor-positive gastroenteropancreatic neuroendocrine tumors (GEP-NETS). Curium’s submission represents a major step in its strategy to become a key player in the promising nuclear medicine therapeutic field.Curium has been developing its formulation over the past several years and has ensured that…
Did you hear the one about the constipated NET patient?
In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke. However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments. Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to…
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 (ignoring my health!). The symptoms of flushing were 6-9 months…
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…
“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…
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,…
I don’t look sick enough, sorry not sorry
Despite earlier diagnoses via more technology and screening, many people have a perception about people with cancer, it includes many things including but not limited to, lack of hair, ill in bed and being infused regularly with chemotherapy. Another perception is they die. All of that is clearly terrible but it's not the norm. Many people live with cancer, many people with cancer go to work many people go on holiday, many people with cancer do normal stuff. The cancer story is changing, more and more of us are going to come into contact with cancer, either through our own…
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…
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…
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,…
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…
Phase 3 CABINET Clinical Trial – Cabozantinib (Cabometyx) for Advanced Neuroendocrine Tumours
Please note this drug was approved and is now covered in a new blog - click here Clinical Trial history retained below for reference purposes BREAKING NEWS - 6th August 2024 Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors. Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors – The FDA assigned a Prescription Drug User Fee Act target action date of April 3, 2025 – – Application is based on results from…
A Review of June 2024 on RonnyAllan.NET
Here is the monthly summary of what we all achieved in June 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 June 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 course…
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…
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…
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…
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…
Neuroendocrine Cancer – were you irritated by your misdiagnosis?
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…