17 Comments “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 […]
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?“. […]
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 […]
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 […]
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 […]
OPINION – 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/Neuroendoceine […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
– 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 […]
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 […]
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 […]
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 […]
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 […]
One 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 […]
1 year after 2 x surgery Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after surgery 13 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 […]
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. […]
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 […]
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 […]
My very first blog post – ‘remastered’ in 2023! The original post as I published it on 29 Apr 2014 This 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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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” […]
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 […]
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. […]
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. […]
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 […]
September is Childhood Cancer Awareness Month! The newspapers and social media will no doubt be featuring many childhood cancer articles. You may not see one about NET though. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child […]
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 […]
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 […]
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. […]
The clouds are gathering. 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 […]
BREAKING NEWS – 24TH AUG 2023 Exelixis Announces Remarkable Efficacy in CABINET Trial for Advanced Neuroendocrine Tumors On August 24, 2023, Exelixis made an exciting announcement regarding the Phase 3 CABINET pivotal trial. This trial focused on evaluating the effectiveness of cabozantinib in treating advanced pancreatic and extra-pancreatic neuroendocrine tumors. The CABINET trial was a […]
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 […]
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) […]
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 […]
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. […]
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 […]
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: […]
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 […]
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, […]
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 […]
