I look well but you should see my insides
I'm sat next to patients waiting on their chemotherapy treatment - the "Chemo Ward" sign above the door gives it away. I'm here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay. I look all around; the temporary beds and the waiting room are full and all I can see are people who don't look as well as I do. Some have hats or bandanas partly disguising the loss of hair. I feel for them.No matter how many visits I make, I can't help feeling out of place in a Cancer ward. I'm not…
I’m only as good as my last scan
"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. 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 not be used as a firm declaration of progression, stability or regression. Every picture tells a story…
Neuroendocrine – what’s that?
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…
The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?
But it works, I read it on the internet! “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 lighthearted 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…
‘Chinese Dumplings’ and Neuroendocrine Cancer
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…
Chemotherapy for Neuroendocrine Cancer
Edited and checked April 2024 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…
Carcinoid vs Neuroendocrine
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…
Neuroendocrine Cancer Online Patient Groups: frighteningly good or good at frightening?
OPINION 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…
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…
Chocolate – the NET effect
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…
The Human Anatomy of Neuroendocrine Cancer
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…
The trouble with the NET (Part 1) – Cancer Myths
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…
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…
Neuroendocrine Tumours (NET) – benign vs malignant
Reviewed and Updated 13th March 2024 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…
The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2022 classification changes)
- Updated 11th March 2024 - This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of Neuroendocrine Neoplasms is so significant, so gamechanging, that I have re-released the updated text. You may see these important publications called 'Blue Books'. Words are very important in Neuroendocrine Neoplasms (NENs). Nomenclature has important meaning and context more than most other cancers due to the heterogeneity of this group of neoplasms. Grade and Stage are two factors inextricably linked to the nomenclature and while there have been less changes in these…
February 2024 in Review – RonnyAllan.NET
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…
January 2024 in review – RonnyAllan.NET – Living with Neuroendocrine 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…
Scanxiety – I just don’t get it!
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…
There are no perfect answers about an imperfect cancer
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…
A review of November 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
November is always busier as I help spread awareness for 10th Nov (remembering that every day is 10th Nov on my site!). I also managed to push out quite a few blogs, some 'remasters' from 2014 but with their originality from that time. 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 in the snow soon! It's tough…
Neuroendocrine Cancer – Clinical Esoterica
The good news ....... things are improving, the latest US figures confirm two major changes:1. Most diagnoses are now early stage2. The disease is no longer rare and no longer an orphan diseaseOne of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or…
I woke up on World Neuroendocrine Cancer Day
1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery 15 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. …
A review of October 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
October was a strange month, due to a combination of holiday recovery from September and terrible weather in UK, I managed to push out quite a few blogs, many 'remasters' from 2014 but with their originality from that time. 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, albeit October was a one off. It's tough to keep up sometimes but I'm thankful to the loyal supporters who are on my blog site…
Every Day is World Neuroendocrine Cancer Day!
Opinion: In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me. Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery. Read about this here - I even woke up on November 10th after major surgery. You'll note the title of this post is "World Neuroendocrine Cancer Day" and that is because (so called) "NET Cancer Day" is not good awareness. It's a terrible joining of cancer words and does not make sense…
The right awareness can lead to speedier diagnoses and save lives
ORIGINAL POST (20th May 2014) I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away. I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog. I'm thinking the top viewing score to date is not because it mentioned Stephen Sutton (sad…
Blogging is a full-time job – and I walked right into it!
My very first blog post - 'remastered' in 2023!The original post as I published it on 29 Apr 2014This is a new skill so bear with me, please! The aim of this blog is to post a running commentary of a walk of Hadrian's Wall with my wife Chris.The walk commences 26 May 14 at Wallsend in East Newcastle and completes on the evening of 31 May 14 at Bowness-on-Solway.The walk is for two purposes:1. To raise awareness of Neuroendocrine Cancer2. To promote and fundraise for PLANETS Charity (Pancreatic, Liver And Neuroendocrine Tumours).As a lead-up to the actual walk itself, I'll…
The Big C – a subject nobody wants to talk about
When I launched my blog with the sole aim of fundraising for a walk along Hadrian's Wall, the first couple of posts I published were all about why Chris and I were doing this 84-mile walk. After that, it suddenly got difficult. I then had a brainwave ..... let's do an A to Z and I started with a short list (some letters had shorter lists than others (Q, J, Z etc). I've been gradually recycling these early posts as a way of updating their templates plus totally changing the content of most. This one was previously the "C words". …
Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy
Share this post please An awareness post from 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. Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays. In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! In some cases, it can be a little bit noisy. For example, some…
Dr Google will see you now
Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA 'Alexa' to look for me! I even dabble in artificial intelligence (AI) (but I tread carefully on both). However, you need to be very careful in acceptance of what is credible information and what isn't. As a relatively experienced health blogger and activist, I like to think of myself as 'internet savvy', so I occasionally find myself using 'Dr Google' to diagnose my own aches, pains and unusual feelings (and I confess to using it to help others). I…
My right-hand woman – Chris
There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life. I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was in 2010-2014 but I have a lot of people to thank for some excellent progress.…
Neuroendocrine Cancer Clinical Trial – Lutetium-177Lu (Satoreotide)
What is Satoreotide?It's an agonist treatment. i.e. a 'next generation' radiologand for Peptide receptor radionuclide therapy (PRRT) or more specifically the radiopharmaceutical that binds to both activated and unactivated somatostatin receptors which are upregulated on these tumours. There is far higher binding via this mechanism than standard octreotate. The technical name of the radiopharmaceutical is Satoreotide tetraxetan lutetium-177 (author's note, I'm guessing but it could be a variant of Lanreotide).Somatostatin type 2 (SST2) receptor is overexpressed in many around 80% of NETs, some NEC and in certain hard-to-treat cancers such as small cell lung cancer (SCLC) and neuroblastoma, an aggressive,…
A review of September 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
On my website RonnyAllan.NET, September was an interesting month because I had pushed out some blogs before I went on a planned overseas holiday from 6th - 25th Sep and then pushed out some more on return. This had the effect of producing higher figures than August. Normally holidays mean lower figures. 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. It's tough to keep up sometimes but I'm thankful to the loyal…
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"…
Cancer doesn’t take holidays (but I do)
Glen Etive Scotland in 2018 After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my 'big surgery', holidays were put on the back burner, there were too many problems and too many risks - not least of which was the lack of overseas insurance cover for my condition. After 2 years of treatment including several surgeries, I was feeling more confident and my body had become stronger, holidays were put back on the agenda, but nothing too strenuous, nothing too far away. We stuck to Europe over the period 2012-2014. However, in 2015,…
Update from Ronny Allan: No evidence of progressive disease at any site
Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site".Very pleased!With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing…
Exercise is Medicine
Exercise is medicine. Clearly I need to be careful with that statement given my aversion for cancer myths. However, those who know me will totally get where I'm coming from, they will know that there is no way I am saying it cures cancer. What I am saying is that the vast majority of doctors will tell you exercise is good for us but like me they must realise that it sometimes takes quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!).…
A review of August 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer
On my website RonnyAllan.NET, August was as quiet as July but in the second half, I accelerated publication of some posts. The month was also helped by the publication of a solid tumour clinical trial and the breaking news of the CABOZANITINIB trial for NETs (if you missed those see below). I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. 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. I am very grateful.Below,…
Is your glass half empty or half full?
Most people have probably heard of the saying "is your glass half empty or half full". If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way. I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to…
Neuroendocrine Cancer – normally slow but don’t be tricked!
An awareness post from Ronny Allan. There are a lot of scary diseases in this world but some of them are particularly sneaky. One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. Don't be fooled, it's the great pretender. 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…
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…
Living with an incurable cancer – does mind over matter help?
When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my own experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity. This blog you are reading now was only ever intended to be a temporary supporting tool for that hike and its build up; but I was persuaded by good reviews and viewing numbers to keep it going. That suddenly made it more difficult!In my early blogs, there were several 'no go areas' which were either too complex or potentially…
Phase 1 Clinical Trial AOH1996 for the Treatment of Refractory Solid Tumors
The City of Hope-developed small molecule AOH1996 targets a cancerous variant of the protein PCNA. In its mutated form, PCNA is critical in DNA replication and repair of all expanding tumors. Here we see untreated cancer cells (left) and cancer cells treated with AOH1996 (right) undergoing programmed cell death (violet). (Photo credit: City of Hope) This particular clinical trial for solid tumours has been widely reported in the news this week (July/august 2023). It is touted as a "cancer-killing pill" has appeared to "annihilate" solid tumours in early research - leaving healthy cells unaffected. Whether these are the words of…
A review of July 2023 on RonnyAllan.NET
On my website RonnyAllan.NET, July was a bit quieter mainly due to my holiday and other commitments. However, there was still significant support within and without the community. Below, I'll list the top performing blog posts in July, I can assure you there is some great information in there, and you may have missed some of my newest blogs which made it to the top 10. Number 1 is the story of US Representative Joaquin Castro, great diagnostic story and showing signs of being vocal about NET and the US healthcare system to a much wider audience - this is…
Summary of June 2023 on RonnyAllan.NET
Summary - June was a relatively quiet month on my website RonnyAllan.NET - mainly due to me being on holiday for much of it! However, a respectable 18,000 blog views are not to be sniffed at! The top 10 for June are now listed. Take a look please, open them up, read them, share them. 1 Sometimes, you gotta climb that hill, even if it hurts (ronnyallan.net) This must have struck a chord. It's not a story about physical fitness, it's a metaphor about the mental challenges of living with cancer. 2 Currently trending on RonnyAllan.NET - Ronny Allan -…
Summary of May 2023 on RonnyAllan.NET
Summary May produced the best statistics in 2023, mainly due to your support for my blog post on Maria Menounos whose announcement headlined as "Pancreatic Cancer" caused a storm within the Neuroendocrine Cancer community. Below, I'll list the top performing blog posts in May and no secret which one is listed first. Repeat after me: Maria Menounos has Neuroendocrine Cancer (ronnyallan.net) Clinical Trial: Novel Somatostatin Receptor Subtype 2 Antagonist Labelled With Terbium-161 (161Tb-DOTA-LM3) (Beta plus) - (ronnyallan.net) The Human Anatomy of Neuroendocrine Cancer - Ronny Allan - Living with Neuroendocrine Cancer A spotlight on Chromogranin A (ronnyallan.net) Neuroendocrine Cancer: Catch…
A spotlight on Chromogranin A
What is Chromogranin A? Chromogranin A (CgA) is an acidic protein released along with catecholamines from chromaffin cells and nerve terminals. This statement alone might explain why it's a good marker to use with Neuroendocrine Neoplasms. It is said to be a measure of tumour bulk. Depending on the test kit being used, you may also see test results for Chromogranin B (CgB) alongside CgA. CgB is said to be less affected by false positives and forms a useful adjunct to the more established chromogranin A measurement. The brand of test kit which includes CgB tends to be confined to…
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…