Piss off cancer – I’m 68
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 at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what…
European Neuroendocrine Tumor Society 2023 guidance paper for functioning pancreatic neuroendocrine tumour syndromes
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 excellent MDTs not yet accredited who may still utilise ENETs guidelines to treat and manage their patients. This 2023 guideline paper sets the scene for an important and complex group of tumours - pancreatic NETs. It's well known and accepted that the minority of pancreatic NETs…
European Neuroendocrine Tumour Society (ENETS) 2023 guidance paper for nonfunctioning pancreatic neuroendocrine tumours
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 excellent MDTs not yet accredited who may still utilise ENETs guidelines to treat and manage their patients. This 2023 guideline paper sets the scene for an important and complex group of tumours - pancreatic NETs. It's well known and accepted that the majority of pancreatic…
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…
No flushes please!
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 wrote a blog on 26 July "celebrating" 4 years since diagnosis - it's worth a read, check it out by clicking here. Continuing with the 'four years on' theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis.…
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…
My treatment is a pain in the butt!
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 Cancer, although I've heard of cases where it has made a difference. It's mainly used in high grade (Grade 3) but also in Grade 2, particularly at the higher end of the grading scale of KI67/Mitotic Count. I was pleased later when that was dismissed as…
Exercise – it’s a free prescription
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 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!). In fact, my blog was actually created to document my return to fitness and…
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…
Meet Edison® Histotripsy System – powerful bubbles
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 (see wording below) is about all we know but this blog will be kept live. I get asked a lot of questions but some of the detail NET patients tend to ask is simply not available to me. 1. Where can I get this treatment? …
Always thank your Nurse – sometimes they’re the only one between you and a hearse!
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 ...... You may remember I discussed how my cancer was diagnosed following a fairly innocuous conversation at my GP's Surgery in May 2010, see blog post 'Diagnosis - I'm no longer in control'. That nurse was professional, thorough and she clearly went the extra mile…
My stomach sometimes cramps my style
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 be the same as the former......). This major undertaking was within 4 years of my diagnosis and within two years of 3 surgeries and I was borderline stable. I wanted to get it done while I was able! As a Cancer patient, there were some…
Neuroendocrine Cancer: Troublesome Thyroids
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 had already been subjected to some radical surgery and wondered if this was just part of the relentless march of metastatic NET disease. However, that would be a simple explanation.The thyroid gland does get mentioned frequently in NET patient discussions but many of the conversations…
Another dartboard event, another first
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' and is widespread practice. Both references below (UK and US) confirm this strategy. Coadministration of Covid-19 and Flu is new on the basis that Covid-19 is relatively new. Clearly a sign of the times but from what I've read and studied, it's safe and effective…
Shrek and Princess Fiona
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 and radiant. There's a bit of a story behind this picture as Chris (Princess Fiona) was in fact not very well at the time. This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (mad ex…
Just got (a) shot in the buttocks
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 keyboard in Schwartz toy store in New York, I had to give it a go (video or photo to follow if I can find it!). On the opposite side of the scale, he's also been in some quite gory films such as 'Saving Private Ryan'…
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.…
Who needs a gallbladder anyway?
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 with my gallbladder in 2010/2011, I was convinced it had to go.For info, gallstones incidence in the general population makes it considerably more common than NETs so it follows that some NET patients will have a gallstone issue totally unrelated to their NET. Gallstones are…
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,…