Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it
My diagnosis came with many strange words including, "carcinoid" and "neuroendocrine" ......... can you spell that please, I said to the doctor. I had a low ki67 figure from a tissue sample taken percutaneously from my liver, it seemed pretty good that I was only 5 in a range of 0-100 but somehow the word 'indolent' did not seem to match the long list of metastases including the mesentery, the liver, the retroperitoneal cavity, the armpit, the clavicle. If that was not enough, there was also a long list of secondary effects including but not limited to "mesenteric fibrosis", "retroperitoneal…
Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness
Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Thanks for reading Ronny I also have one about Lanreotide (or "butt darts" in general) - click here Click here and answer all questions to join my private Facebook group Thanks for reading. Ronny Blog Facebook. Like this page please. Personal Facebook. Like this page please. Awareness Facebook Like this page please. Follow me on X (formerly twitter) Check out my online presentations Check out my WEGO Health Awards Check out my Glossary of Terms - click here Please Share this post for Neuroendocrine Cancer awareness and to…
Neuroendocrine Tumours (NET) – hiding in plain sight – an awareness post from Ronny Allan
When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment. It was hiding But it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor. And what would this doctor have said at the time? I was never misdiagnosed because I was never diagnosed with anything that wasn’t already there and documented.…
Ronny Allan – just a wee Scottish guy with a computer
I was assessing performance of the awareness period in November 2025 on Facebook and was astonished to find the size of my reach on that platform. It appears I reached well over half a million people (572,700 to be exact) when adding up the performance of my 3 public Facebook pages (from left to right 16k, 3k and 8.5k followers). Clearly much of this performance was generated by people reading and sharing my work. But the most astonishing figures came from separating these views into followers (of my Facebook pages) and non-followers (a clear target for awareness). From the graphic…
Bone metastases in Neuroendocrine Tumours (NET)
Bone metastases in Neuroendocrine Tumours (NET) Many of you will know that I am a stage IV small intestine NET and I have one bone metastasis (BM) reported. The initial evidence of this BM came from my very first Ga68 PET scan. It said "there is intense focal uptake of tracer in the right 11th rib". This rib is at the bottom of the ribcage at the back of the body. Along with rib 12, they're called 'floating ribs' as only one end is joined to another part of the cage. Closet organs to this rib is the posterior liver…
Piss off Cancer, it’s been 15 years since my “big surgery”
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, 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 would be listed on my death certificate. It’s amazing to think something that would eventually kill me…
The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century
USA - Prevalence of Neuroendocrine Neoplasms (NENs) breaches the Orphan Disease threshold for the first time (officially) The latest US SEER figures confirm that staggering increase in the prevalence of NENs. In that cross-sectional study which evaluated 145,477 NEN cases in the US, age-adjusted incidence rates increased 5.2-fold between 1975 and 2021, with an annual percentage change of 3% between 2000 and 2020, and the 20-year limited duration prevalence projected in the US population on January 1, 2021, was 243 896. Survival for all NENs improved, including for patients with distant-stage gastrointestinal and pancreatic NENs. And even this figure is understated…
Reframing Neuroendocrine Neoplasms Beyond “Rare”
Reframing Neuroendocrine Neoplasms: Beyond “Rare” Neuroendocrine neoplasms (NENs) have outgrown the “rare disease” label. e.g. Across the U.S., UK, and Australia, they now rank among the most commonly diagnosed cancers — yet they remain under-recognised in mainstream healthcare circles, often misdiagnosed in primary and secondary care, but continue to be medically complex requiring specialist input which often arrives late. The Global Reality - examples Country Status 🇺🇸 United States No longer qualifies as an orphan disease — prevalence now exceeds 243,000 cases. The FDA’s own phrasing—“orphan status to drugs and biologics for rare diseases that meet certain criteria”—makes it clear…
Every stripe is lost awareness
Sincer 2015, my message has not changed. My message continues to be justified because since then, many important voices in the NEN community have repeated it! However, there has been, and still remains, some instransigence, although some of that has now buckled in the face of the recent US SEER statistics. However, the buckling needs to spread and expand. Unfortuantely, some elements of the NEN communmity remain entrenched in old thinking, in flawed thinking. I can only describe them as negative disruptors, clinging on to this old thinking. It seems like they refuse to change their mind or plan to…
Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide
Scroll down to check out the doctors list just below Scroll down to also see information on "NET Aware" Dietitians. Important note The accuracy of these lists depends on the accuracy of the sources. If you think the source is wrong, let them know, not me. However, you can also join my private Facebook group and someone in there will often be more up to date than the source! Finding experts Many people ask for a definition of a "NET Specialist". There's also discussions surrounding Multidisciplinary Teams (MDT)/Tumor Boards and Centres of Excellence (CoE). Why are they important, who should…
Piss off cancer – I made it to 70!
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…
Neuroendocrine Cancer: a needle in a haystack?
Reviewed and edited 6th December 2024 It's no secret that Neuroendocrine Cancer can be difficult to diagnose. Although earlier diagnosis is improving (as reported in the US SEER database report issued in 2017 and also in many other places), there is still a lot of ground to cover. There are a number of reasons why these Neoplasms are often difficult to correctly and quickly diagnose including but not limited to: - they grow silently, they often produce vague symptoms which can be mistaken for much more common illnesses, and their complexity is not fully understood.Neuroendocrine Cancer is a heterogenous group…
10 Random Blog posts Set 1 – RonnyAllan.NET
10 Random Blog posts Set 1 - RonnyAllan.NET WelcomeA new series of random blogs that are not only informational, but also relevant. Carefully selected by the author.Thanks for reading. Feedback welcome. Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption The Cancer Legacy of Steve Jobs Cancer-related fatigue (CRF) - The NET Effect Jimmy Buffett 1946-2023 - Neuroendocrine Carcinoma (Merkel Cell Carcinoma) Cancer Ablation Meet Edison® Histotripsy System - powerful bubbles Lower grade higher stage NETs - slow motion, chronic and indolent? Neuroendocrine Cancer Awareness - let’s move into the 21st century Living with NETs - nobody…
The Treachery of Pheochromoctyomas and Paragangliomas – please think of it!
Something came up in my timeline this week and I really enjoyed reading it. I have many alerts set for various subjects including Pheochromocytomas and Paragangliomas. Often an old published article is republished making it to my alert system and it got pushed up the timeline. It did seem like it was up to date but I eventually spotted it was from 2006! I appreciated some of the content because it had confirmed many parts of my knowledge about these interesting tumours. Two things stood out in this 2006 document: Firstly, the mention of how many of these tumours are…
The 4 Cs – Causation, Correlation, Coincidence and Confounding Factors
I learn a lot in my private patient group. I also notice people jumping to conclusions on the cause of their issue when two variable things change at the same time. It is pretty normal (and even I do it) to want to know what is causing a symptom but working out the causes is not always easy. Treating the symptoms may be a more efficient use of time and energy. Healthcare professionals are better placed to work this stuff out but in 2025, the internet, google, and even artificial intelligence can help the resourceful patient/caregiver. But all of these…
Ronny Allan – a review of my blog activity August 2025
Here is the monthly summary of August 2025 on RonnyAllan.NET - Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the 10 posts to read. You can share the whole post or you can share those individual posts - each has a share button or you can copy and paste the internet link (url). Use your own words, invite them to subscribe to my…
Last week on Ronny Allan dot NET – 11-17 Aug 2025
It's been an amazing week on my Facebook pages with some knock on effect on my website. I have been working on (and focussing on) my main Facebook page and I appreciate the support from you guys. Sharing a facebook post has proven to be very powerful for some of my posts on that page (Neuroendocrine Cancer). Between us we attracted many people from outside the community and many who were not part of the community but now are. Thank you. On my website, I only added a couple of posts last week: 1. 2025 Surveillance Update from Ronny Allan:…
2025 Surveillance Update from Ronny Allan: “No evidence of progressive disease”
It's only a couple of weeks since I celebrated my 15th year since diagnosis of metastatic small intestine Neuroendocrine Tumour (NET) at Grade 2. Thinking back to that period of my life, I'm happy but also slightly amazed to be celebrating such a long milestone having been diagnosed with cancer at Stage IV. I think it's a sign of many things, including but not limited to, early intervention by inquisitive healthcare professionals following vague symptoms, early access to a NET multidisciplinary team (MDT). Of course, human resilience must also be a factor. I didn't take this diagnosis lying down, I…
I may look well, but you can’t see my battles!
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 please.…
![Clinical Trial: The Efficacy and Safety of [177Lu]Lu-DOTA-TATE in Patients With Grade 1 and Grade 2 Advanced GEP-NET (NETTER-3)](https://i0.wp.com/ronnyallan.net/wp-content/uploads/2025/08/netter-3.jpg?resize=400%2C280&ssl=1)
Clinical Trial: The Efficacy and Safety of [177Lu]Lu-DOTA-TATE in Patients With Grade 1 and Grade 2 Advanced GEP-NET (NETTER-3)
Why is this trial important? The output of NETTER-2, suggested Lutathera for GEP-Grade 2 and 3 NETs could be used as a first line treatment. In some areas this appeared to be controversial. The data from NETTER-1, which was focused on Grade 1 and 2 (less than ki67 of 10%), did not conclude the same, different aim. However, this appears to be the main aim of NETTER-3, to look at the data in the same way as NETTER-2 but for Grade 1 and 2 with similar criteria used on NETTER-1. You might say NETTER-3 is a follow on from NETTER-1…
Ronny Allan – a review of my blog activity July 2025
Here is the monthly summary of July 2025 on RonnyAllan.NET Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the 10 posts to read. You can share the whole post or you can share those individual posts - each has a share button or you can copy and paste the internet link (url). Use your own words, invite them to subscribe to my website and…
Weekly Roundup on RonnyAllan.NET – 28th July 2025
New or Repurposed/Republished blogs this weekClick pictures to read Click the picture to read the post Page - Neuroendocrine Cancer - featured post Go straight to the facebook post - click here or go straight to the relevant blog post - click here Page - Ronny Allan - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here Page - World Neuroendocrine Cancer Day - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here Now click on…
Ronny’s Weekly Roundup 14th – 20th July 2025
New or Repurposed/Republished blogs this weekClick pictures to read https://medicalstories.tv/ Page - Neuroendocrine Cancer - featured post Go straight to the facebook post - click here or go straight to the relevant blog post - click here Page - Ronny Allan - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here Page - World Neuroendocrine Cancer Day - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here https://ronnyallan.net
Ronny Allan’s Glossary of Terms (Basic Edition)
Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top cancer/Neuroendocrine Cancer sites. This version is a simple combination of an intelligent search (e.g. type first character to filter etc) plus a simple long list of all the terms in my repository. But each has a link which will direct you to the definition of the term plus where applicable, links to any of my articles where I have tagged this term (therefore providing added context).Please note I’m constantly working on the repository to clean up all definitions, adding…
RonnyAllan.NET – weekly round-up 7th – 13th July 2025
New or Repurposed/Republished blogs this weekClick pictures to read Page - Neuroendocrine Cancer - featured post Go straight to the facebook post - click here or go straight to the relevant blog post - click here Page - Neuroendocrine Cancer - featured post Click here to read about NET and diet Page - Ronny Allan - featured postGo straight to the facebook post - click here or go straight to the relevant blog post - click here Page - World Neuroendocrine Cancer Day - featured postGo straight to the facebook post - click here or go straight to the relevant…
Hot Saturday cycle ride
You're right, this is a strange title for Ronny to use on his blog........ However, I'm testing a different way to blog from my website to test something which has been annoying me (and others). Anyway, that's the explantion, now enjoy the pictures and story!The weather in UK is currently very hot (..... for UK!) so we decided on a slow cycle down to the nearest beach. It was a great and relaxing ride. We had already taken sandwiches for lunch and we just needed a cup of tea (cappachino for Chri) at a place called The Noisy Lobster -…
Ronny Allan – a review of my blog activity Jun 2025
Here is the monthly summary of June 2025 on RonnyAllan.NET Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the 10 posts to read. You can share the whole post or you can share those individual posts - each has a share button or you can copy and paste the internet link (url). Use your own words, invite them to subscribe to my website and follow…
Good morning from Ronny Allan
Ronny Allan here. Apologies for intruding on your day but I'm reorganising how my blogs and newsletters are sent from my website. This is just a bit of a test! But if you have some time, you could try a browse of my site RonnyAllan.NET to see what you may have missed!
Don’t delay your blood tests – it’s not good for your health!
15 years today, and before I was formerly diagnosed, I had a blood test done. And it was a fairly insignificant event, as a precaution, as a "just in case" check after telling a nurse in my GP surgery that I thought I'd lost some weight. The form she gave me sat in my in-tray for a couple of weeks, I was far too busy at work for blood tests. I didn't even feel ill! Fortunately, I did eventually get the test done on 11th June 2010 and and here we are today! Check out the video where I talk…
Ronny Allan’s Top 10 so far in 2025
Just click on the pictues and read (and hopefully share!) I'm constantly fighting algorithms! Facebook is the worst, apparently only 10% of followers will get a notification of a new post on my pages. 10% !!! Because I am a blogger for a health condition, they put me amongst businesses. Clearly they want advertising revenue from business, I get that, Facebook has huge overheads. But I am here helping people and not reaching my community (unless I pay of course). However, if you are following my Facebook pages, add them to your favourites and you will help beat the algorithms.…
Ronny Allan’s weekly round-up for 29th Apr – 4th May 2025
New or Republished Blog Posts this week https://ronnyallan.net/2025/05/01/ronny-allan-a-review-of-my-blog-activity-april-2025/ https://ronnyallan.net/2025/04/28/the-6-es/ https://ronnyallan.net/2025/04/26/repeat-after-me-make-time-for-your-wellness/ https://ronnyallan.net/2025/04/26/currently-trending-on-ronnyallan-net/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group Exciting mail! Page World…
Ronny Allan – a review of my blog activity April 2025
Here is the monthly summary of April 2025 on RonnyAllan.NETEvery share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the 10 posts to read. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by many personal things in April 2025, (including a 2 week overseas holiday)…
The 6 E’s
An opinion postWhen I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after I…
Repeat after me: Make time for your wellness
Following a diagnosis of metastatic Neuroendocrine Cancer in 2010, I had no idea about outcomes. Back, then I was focused on getting my illness fixed or patched up. That took a few years and several procedures including 3 surgeries, plus a ton of drugs including a monthly injection. Apart from recuperation periods following those procedures, I pretty much worked as normal as possible throughout that 3 years, I thought that was part of my healing, mental and physical. I didn't really holiday a lot, perhaps in hindsight, that was a foolish omission. Finally, when I broke out of my illness…
What you guys are reading most in the last 7 days
To read any article, just click on the title below Latest from Instagram https://www.instagram.com/neuroendocrine.cancer.ronny/ Select of category of posts you'd like to see Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Some…
The trouble with the NET (Part 5) – Cancer Diet Myths
Updated 29th June 2025...... Keep reading. 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. Even food and nutritional supplements fall into this area. Be cautious about believing information about, or paying for, any alternative cancer therapy on the internet.Common dietary myths (this is not a complete list!)There are numerous (alleged) ‘anti-cancer’ diets and…
A review of March 2025 on RonnyAllan.NET
Here is the monthly summary of March 2025 on RonnyAllan.NETThe list of posts this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the 10 posts to read. I'm thankful for every view because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by many personal…
Living with Cancer: Don’t cross the bridge until you get to it
It's normal to be worried when you read something online including a scan report which has words that frighten you, when you notice a slightly high blood test. Or if read something bad about one type of NET or what has happened to someone with a different type of NET as you; and you think this might also apply to you. But too much worrying about something which is more likely to not be a problem or will almost certainly not happen to you; is not a good place to be. Don't cross the bridge until you come to it,…
Neuroendocrine Cancer: Functional vs Non-functional
The terms functional and non-functional come up a lot in documents describing Neuroendocrine Cancer. They also feature highly in patient groups. But what do these terms actually mean? Functional / Non-FunctionalNeuroendocrine Tumours are treatable for most but the difficult part can be arriving at a diagnosis. Moreover, some Neuroendocrine Tumours (NETs) can be silently growing and as they grow slowly, the 'silence' can go on for some years. Even with a syndrome, the root cause can remain disguised as the symptoms are similar to many day-to-day illnesses. There can be the odd exception but in general terms, NETs are either functional (with…
Neuroendocrine Cancer: 10 posts not to miss
I'm constantly fighting algorithms! Facebook is the worst, apparently only 10% of followers will get a notification of a new post on my pages. 10% !!! Because I am a blogger for a health condition and have a public profile, they put me amongst businesses. Clearly they want advertising revenue from business, I get that, Facebook has huge overheads. But I'm here helping people and not reaching my community (unless I pay of course). However, if you are following my Facebook pages, add them to your favourites and you will help beat the algorithms. Liking every post and sharing, also…
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)
After years of avoiding pancreatic enzyme replacement therapy (PERT) since a 2010 diagnosis, I finally asked for some on a trial basis at the end of 2017. To be honest, for some time, I thought they were really only needed in the NET world for those with pancreatic issues (pNETs). I've always known I've had some digestive issues related to malabsorption. However, I'm wasn't losing weight - this has been stable for some years (but see below). Plus, my key vitamin levels (B12 and D) were in range. However, I had been struggling with a lot of bloating issues, thus…
Histotripsy – the case for use in UK as Histosonics was awarded early market access
Hot off the press - 15 Dec 2025Anecdotal ReportI have heard that The Wellington, a private hospital in London (and the largest private hospital in UK) is deploying Histotripsy. I know it is frequently used by NHS doctors working privately from the Royal Free. I will update this when I have detail, this anecdotal report may be news of the purchase rather than a commissioning of the equipment ready for treatment. Clearly treatment at this hospital will need to be funded by the individual or covered by a private health policy. Hot off the press - 22 Oct 2025Cambridge treats first NHS cancer…
Early diagnosis of late stage cancer
Early diagnosis of late stage cancer What a strange title for a cancer blog post! However, what a strange cancer I have. Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor. To cut a long story short, you can read about me here. "The cancer has been growing for years" One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in…
Small intestine, large surgery
Edited and reviewed 4th September 2024 My own experience At my diagnostic consultation, the Oncologist told me I had Stage 4 metastatic Small Intestine NET (SI NET). He also told me that surgery would almost definitely be on the cards and would be referring me to an experienced surgeon in a different hospital for assessment. I was assured this surgeon was one of the most experienced in the south of England for NETs. This was before the current multi-disciplinary team was set up, but it did all seem so very organised and I felt comfortable, albeit apprehensive. Worth pointing out…
Health Union Certified Patient Leader – Ronny Allan, Living with Neuroendocrine Cancer
Health Union launches an accreditation program for patient leaders. This was announced in summer 2023 but it took me a while to engage due to my many commitments (including some big personal stuff to sort out) I had a false start, many things took priority for a while but early 2025 I was encouraged to complete it and finally crossed the line in February 2025. Read my Facebook announcement of certification - click here. My formal certificate was recently received, see below! Health Union Acquires WEGO Health - WEGO Health WEGO Health had the largest network of patient leaders in…
A Review of February 2025 from Ronny Allan
Here is the monthly summary of February 2025 on RonnyAllan.NET The headline is my award of accredited Patient Leader with Health Union, who I have had a long association with since the days of WEGO Health who they merged with a few years ago. Not sure how I finally found the time to complete after scratching at the surface of the task for 18 months! Someone gave me a deadline - that made a difference! The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered. Click on the each of the…
Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma
The riddle.For many years, I've been reading and blogging about Neuroendocrine Neoplasms, NENs for short. NEN is a relatively new term which came after my diagnosis. Nomenclature is still evolving and there is always something to learn. It's also true to say the term 'Neuroendocrine Neoplasms' is the same as saying 'Neuroendocrine Cancer'. These neoplasms are cancers that begin in specialised cells called 'neuroendocrine cells'. Neuroendocrine cells have traits similar to those of nerve cells and hormone-producing cells, particularly the latter. In face one NET specialist said "While the name “neuroendocrine” implies that these tumors involve both nerve cells and…
Abseil for NETs featuring Heidi Veacock
I have some online friends who I speak to more on message than in public pages or in my private group. I've been chatting with Gary (Gaz) Veacock for over 3 years and watching the path of his wife Heidi who is being looked after by the Royal Free London NHS Foundation Trust - one of the world's top places for treating NETs. Heidi was diagnosed with a NET around 4 years ago and has had surgery and 6 sessions of PRRT and open heart surgery (at St. Barts). Gary is currently serving in the military and we intend to…