What is the gut microbiome? According to Cleveland Clinic, your gut microbiome is a microscopic world within the world of your larger body. The trillions of microorganisms that live there affect each other and their environment in various ways. They also appear to influence many aspects of your overall health, both within your digestive system […]
A culture of miniature neuroendocrine tumors. [Talya Dayton, copyright: Hubrecht Institute.] I’ll flesh this out in due course, but this is something I’d like to track. Pulmonary NETs don’t have as many treatments as Gastroenteropancreatic NETs (GEP NETs). Druggable growth dependencies and tumor evolution analysis in patient-derived organoids of neuroendocrine neoplasms from multiple body sites […]
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 […]
What is Carcinoid Syndrome? Carcinoid syndrome (CS) is the most frequent hormonal complication accompanying neuroendocrine neoplasms (NENs) and is defined by chronic diarrhoea and/or flushing in the presence of systemic elevated levels of serotonin or its metabolite 5-hydroxyindolacetic acid (5-HIAA). Importantly, other causes of these symptoms should be considered and investigated depending on the clinical presentation. CS […]
US Trial I was delighted to see this clinical trial which looks at the efficacy of PRRT (Lu177 dotatate) vs the efficacy of Everolimus (Afinitor). The latter is approved for the treatment of adult patients with progressive, well-differentiated non-functional, neuroendocrine tumors (NET) of gastrointestinal (GI) or lung origin with unresectable, locally advanced or metastatic disease […]
Since I started blogging, I’ve read dozens of articles on the subject of ‘cancer metaphors’ and in particular their use in describing cancer experiences with the words ‘fight’, ‘battle’ and other ‘military’ sounding terms. The authors say that perhaps this is not the best language to use. One author used the term ‘violence’ to describe these […]
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 […]
This ENETS guidance paper, developed by a multidisciplinary working group, provides up-to-date and practical advice on the diagnosis and management of digestive neuroendocrine carcinoma, based on recent developments and study results. These recommendations aim to pave the road for more standardized care for our patients resulting in improved outcomes. However, it’s true to say that […]
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 […]
When I first created my blog in April 2014, I had to find some material to lead up to my 84 mile walk (at the time, it was a temporary vehicle for the single purpose of raising money for charity). An idea I had probably led to the longer term survival of this blog after […]
Laughter is important. This is a remastered version of one of my early blog posts. It centred on a ‘get-well’ card I received recuperating in hospital after my first major surgery. The person who sent it knew I had a sense of humour, and it did make me smile. My surgeon’s secretary came to visit […]
The ENETS 2023 guideline for gNETs are combined with the guidelines for Duodenal NET (dNET) due to their close relationship in anatomical terms. Gastric neuroendocrine neoplasms (gNENs) are tumours with an increasing annual incidence and. The vast majority of gNENs are well-differentiated neuroendrocrine tumours (NETs), which are usually classified according to the background gastric pathology […]
The ENETS 2023 guideline for dNETs are combined with the guidelines for Gastric NET (gNET) due to their close relationship in anatomical terms. But there are functional linkages to the pancreas, therefore also links to that as above. The duodenum is technically part of the small intestine, and you can find that in most anatomy-based […]
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 […]
D Day I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, […]
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jennifer Eads talks about the tricky issue of when Genetic Testing Be Performed in […]
The Journey to the Hospital on 8th November didn’t go smoothly! I had to be admitted to hospital for my surgery on 8th Nov 2010, but the surgery was not taking place until 9th November. The technical reason for that is explained further below. Not a good start, 13 years ago today, Chris was driving […]
I’m sorry to hear that you have been diagnosed with Neuroendocrine Cancer. It’s normal to feel scared, angry, or sad when dealing with such a difficult situation. However, there are some ways to cope with these emotions and find some hope and optimism. Here are some tips that may help you think more positively during […]
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jonathan Strosberg is another favourite of mine, not only because he is a prodigious […]
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. “Dr Thor” is a favourite of mine. Worth pointing out that Dr Thor is giving […]
Another episode in the expert opinion series. I thought this might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Jonathan Strosberg MD from Moffitt Cancer Center Florida Jennifer Eads MD from University of Pennsylvania, […]
I thought this series might be useful for some of you after an interesting ‘google alert’ brought up these discussions. It comprises a roundtable discussion with known NET specialists and some big hitters too. Jonathan Strosberg MD from Moffitt Cancer Center Florida Jennifer Eads MD from University of Pennsylvania, Abramson Cancer Center Thorvadur R. Halfdanarson […]
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 started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know […]
There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places. In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009. But underneath that are some […]
There is very much a multi-disciplinary team (MDT) approach to treating Neuroendocrine Tumours (NET) in Europe and many other places. In Europe and the extra-Europe CoEs in Australia, Israel and the USA, this is centred on the establishment of the Centre of Excellence programme that has been running since 2009. But underneath that are some […]
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 […]
Remastered 24th Oct 2023 Original Blog 6th Sep 2014 (but talking in public about my 2010 experiences). Despite people’s expectations, diagnosing Cancer isn’t a two-minute job. There is a whole host of stuff to consider, and medical staff clearly want to get it 100% correct in order to plan and manage the patient’s treatment. I […]
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 […]
This title is a bit ‘tongue in cheek’ (….did you see what I did there?) I’m very happy to have had treatments for my stage IV cancer, I can think of far worse scenarios. When I was first diagnosed, the dreaded word ‘Chemo‘ was discussed. Actually, Chemo isn’t particularly effective in treating low grade Neuroendocrine […]
Exercise is a free prescription. Clearly, I need to be careful with that statement given my aversion for cancer myths but it was once prescribed to me to get me through an awful period in 2013. The vast majority of doctors will tell you exercise is good for us but like me they must realise […]
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 […]
Please read this before asking questions Histotripsy is a new treatment, but it’s an ablative technique rather than a drug. It can be equated to liver embolization or conventional tumour ablation but uses what would appear to be a more effective targeted therapy. It’s early days, the fact that it has been approved by FDA […]
I had minimal exposure to nurses throughout the first 55 years of my life. I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (you should’ve seen the other guy). Bar the odd mandatory injection, I avoided both boxing and nurses for many years after that. But now […]
When planning to walk Hadrian’s Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!). In true ‘Donald Rumsfeld style’, I considered all the ‘known unknowns’ and the ‘unknown unknowns’. Anybody who doesn’t is either reckless or supremely confident (the latter can sometimes […]
In 2013, just when I thought everything seemed to be under control, I was told I had a ‘lesion’ on the left upper lobe of my thyroid and that they had been monitoring it for a while. Of course at the time, you immediately assume NET. It was a bit of a shock as I […]
On 7th October 2023, another dartboard event, another first. I think I’ve lost count of my Covid 19 and Flu vaccinations, particularly the latter which has been going on for 20+ years. But this year was the first time I received both vaccinations at the same time. This is known in healthcare circles as ‘coadministration’ […]
I was looking through some old photographs and came across this one I thought you guys might like. It’s pre-diagnosis round 2008 (although I didn’t know cancer was growing inside me). As you can see, despite being an ogre, Shrek is actually quite a handsome chap! Moreover, Princess Fiona is as you would expect, beautiful […]
I love watching films and Tom Hanks is one of my favourite actors. He’s played such a wide range of parts and I’ve found every single one of his films enjoyable. I think the first one I remember was ‘Big’ – a cracking family film for all ages. When I saw the large floor piano […]
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 […]
We can survive without a gallbladder, but clearly it is a useful, functioning organ, and we are better off to keep it if we can. There are times when things can go wrong such as gallstones, sludge and blocked ducts, and then it may need to be removed. However……even though there wasn’t really anything wrong […]
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” […]
There has been controversy about the utility of Chromogranin A for many years now. Specialists have been critical about its use but to be fair even those less critical still confirm that alone it would not be trusted to formally diagnose Neuroendocrine Cancer. That said, it was still controversial when certain US guidelines were updated […]
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 […]
Whenever I get a chance to talk to a pharma involved in somatostatin analogue injection devices, I tell them one very important thing …… “To the patient, the injection delivery is almost as important as the drug”. I also add that my opinion is based on thousands of comments about the patient experience in my […]
