06 Nov 2025
By Ronny Allan
0 Comments
Every stripe is lost awareness

Every stripe is lost awareness

Awareness, Patient Advocacy, , ,
  Since 2015, my message has not changed and it 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 intransigence, although some of that has now buckled in the face of the recent US SEER extract from NET specialists and similar for Canadian statistics in 2026.  These two pieces of data add to the voices of UK and Australia who were ahead of the game with higher quality data some time ago.  Clearly the model is changing and everyone needs to start reframing Neuroendocrine…
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31 Oct 2025
By Ronny Allan
15 Comments
Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide

Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , , , , , , , , ,
Scroll down to check out the doctors list just below 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!  To the best of my knowledge, this the only attempt at a worldwide list of specialists.  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).…
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30 Oct 2025
By Ronny Allan
0 Comments
I made it to 70!

I made it to 70!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy
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…
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18 Oct 2025
By Ronny Allan
2 Comments
Neuroendocrine Cancer: Looking for a Needle in a Haystack

Neuroendocrine Cancer: Looking for a Needle in a Haystack

Patient Advocacy, , , , , , , , , , , ,
Reviewed and edited 17th August 2026 The short answer Neuroendocrine cancer is difficult to detect because many grow slowly, behave unpredictably, and often hide behind common, misleading symptoms. Even with modern imaging and pathology, many tumours remain invisible until they metastasise. That’s why NETs are often described as “a needle in a haystack.” Why Neuroendocrine Cancer Is So Hard to Find Neuroendocrine neoplasms (NENs) are uncommon, heterogeneous, and frequently misdiagnosed. They mimic everyday conditions such as IBS, asthma, menopause, anxiety, gallbladder disease, and acid reflux. This symptom overlap leads to long diagnostic delays — often 5–7 years from first symptoms…
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13 Oct 2025
By Ronny Allan
0 Comments
10 Random Blog posts Set 1 – RonnyAllan.NET

10 Random Blog posts Set 1 – RonnyAllan.NET

Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, The NET Effect Series, Treatment
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…
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18 Sep 2025
By Ronny Allan
0 Comments
The Treachery of Pheochromoctyomas and Paragangliomas – please think of it!

The Treachery of Pheochromoctyomas and Paragangliomas – please think of it!

Patient Advocacy, , ,
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…
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03 Sep 2025
By Ronny Allan
0 Comments
The 4 Cs – Causation, Correlation, Coincidence and Confounding Factors

The 4 Cs – Causation, Correlation, Coincidence and Confounding Factors

Patient Advocacy,
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…
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02 Sep 2025
By Ronny Allan
0 Comments
Ronny Allan – a review of my blog activity August 2025

Ronny Allan – a review of my blog activity August 2025

Awareness, Newsletters, Patient Advocacy
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…
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19 Aug 2025
By Ronny Allan
0 Comments
Last week on Ronny Allan dot NET – 11-17 Aug 2025

Last week on Ronny Allan dot NET – 11-17 Aug 2025

Newsletters, Patient Advocacy
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:…
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16 Aug 2025
By Ronny Allan
0 Comments
2025 Surveillance Update from Ronny Allan: “No evidence of progressive disease”

2025 Surveillance Update from Ronny Allan: “No evidence of progressive disease”

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, , ,
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…
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11 Aug 2025
By Ronny Allan
0 Comments
I may look well, but you can’t see my battles!

I may look well, but you can’t see my battles!

Patient Advocacy, ,
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.…
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09 Aug 2025
By Ronny Allan
0 Comments
NETTER-3 – Clinical Trial: [177Lu]Lu-DOTA-TATE in Patients With Grade 1 and Grade 2 Advanced GEP-NET

NETTER-3 – Clinical Trial: [177Lu]Lu-DOTA-TATE in Patients With Grade 1 and Grade 2 Advanced GEP-NET

Clinical Trials and Research, Patient Advocacy, Treatment, ,
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 but…
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08 Aug 2025
By Ronny Allan
0 Comments
Ronny Allan – a review of my blog activity July 2025

Ronny Allan – a review of my blog activity July 2025

Awareness, Newsletters, Patient Advocacy
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…
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28 Jul 2025
By Ronny Allan
0 Comments
Weekly Roundup on RonnyAllan.NET – 28th July 2025

Weekly Roundup on RonnyAllan.NET – 28th July 2025

Newsletters, Patient Advocacy
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…
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21 Jul 2025
By Ronny Allan
0 Comments
Ronny’s Weekly Roundup 14th – 20th July 2025

Ronny’s Weekly Roundup 14th – 20th July 2025

Patient Advocacy
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
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16 Jul 2025
By Ronny Allan
0 Comments
Ronny Allan’s Glossary of Terms (Basic Edition)

Ronny Allan’s Glossary of Terms (Basic Edition)

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, The NET Effect Series, Treatment, ,
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…
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14 Jul 2025
By Ronny Allan
0 Comments
RonnyAllan.NET – weekly round-up 7th – 13th July 2025 

RonnyAllan.NET – weekly round-up 7th – 13th July 2025 

Newsletters, Patient Advocacy
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…
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13 Jul 2025
By Ronny Allan
4 Comments
Hot Saturday cycle ride

Hot Saturday cycle ride

Patient Advocacy, Survivorship, Travel with Ronny
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 -…
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01 Jul 2025
By Ronny Allan
0 Comments
Ronny Allan – a review of my blog activity Jun 2025

Ronny Allan – a review of my blog activity Jun 2025

Awareness, Newsletters, Patient Advocacy, ,
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…
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11 Jun 2025
By Ronny Allan
0 Comments
Don’t delay your blood tests – it’s not good for your health!

Don’t delay your blood tests – it’s not good for your health!

Patient Advocacy, , , ,
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…
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30 May 2025
By Ronny Allan
0 Comments
Ronny Allan’s Top 10 so far in 2025

Ronny Allan’s Top 10 so far in 2025

Newsletters, Patient Advocacy
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.…
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04 May 2025
By Ronny Allan
0 Comments
Ronny Allan’s weekly round-up for 29th Apr – 4th May 2025

Ronny Allan’s weekly round-up for 29th Apr – 4th May 2025

Newsletters, Patient Advocacy
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…
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01 May 2025
By Ronny Allan
0 Comments
Ronny Allan – a review of my blog activity April 2025

Ronny Allan – a review of my blog activity April 2025

Newsletters, Patient Advocacy
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)…
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28 Apr 2025
By Ronny Allan
1 Comment
The 6 E’s

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, Survivorship, , , , , , , , , , , , ,
An opinion post When 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…
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26 Apr 2025
By Ronny Allan
1 Comment
Repeat after me: Make time for your wellness

Repeat after me: Make time for your wellness

Inspiration, Patient Advocacy, Survivorship,
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…
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26 Apr 2025
By Ronny Allan
6 Comments
Catch up on Ronny Allan’s Blog

Catch up on Ronny Allan’s Blog

Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, Treatment
You guys lead busy lives but the aim of this article is to help you catch up. Below are the most read posts in the last 7 days.  Click on anything that takes your fancy.  Many thanks.  To read any article, just click on the title/picture 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…
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05 Apr 2025
By Ronny Allan
3 Comments
The trouble with the NET (Part 5) – Cancer Diet Myths

The trouble with the NET (Part 5) – Cancer Diet Myths

Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", , , , , , , , , , ,
Updated 27th June 2026...... 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)…
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31 Mar 2025
By Ronny Allan
0 Comments
A review of March 2025 on RonnyAllan.NET

A review of March 2025 on RonnyAllan.NET

Newsletters, Patient Advocacy
Here is the monthly summary of March 2025 on RonnyAllan.NET The 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…
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23 Mar 2025
By Ronny Allan
8 Comments
Living with Cancer: Don’t cross the bridge until you get to it

Living with Cancer: Don’t cross the bridge until you get to it

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
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,…
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22 Mar 2025
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Functional vs Non-functional

Neuroendocrine Cancer: Functional vs Non-functional

A spotlight on NENs - Syndromes, Patient Advocacy, Spotlight on NENs - Types Series, , , , , , , , , ,
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-Functional Neuroendocrine 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…
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17 Mar 2025
By Ronny Allan
0 Comments
Neuroendocrine Cancer: 10 posts not to miss

Neuroendocrine Cancer: 10 posts not to miss

Newsletters, Patient Advocacy
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…
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15 Mar 2025
By Ronny Allan
29 Comments
Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Neuroendocrine Cancer and Pancreatic Enzyme Replacement Therapy (PERT) – the Digested Version (Nutrition Series Article 5)

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
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…
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13 Mar 2025
By Ronny Allan
4 Comments
Histotripsy – the case for use in UK as Histosonics was awarded early market access

Histotripsy – the case for use in UK as Histosonics was awarded early market access

Clinical Trials and Research, Patient Advocacy, Treatment, , ,
Hot off the press - 10 Mar 2026 Wellington Hospital London is now the first independent hospital in Europe to offer Histotripsy.  Clearly treatment at this hospital will need to be funded by the individual or covered by a private healthcare insurance policy.Click here to read more. Hot off the press - 22 Oct 2025 Cambridge treats first NHS cancer patient  A Cambridge patient has become the first person in Europe to receive cutting-edge histotripsy treatment outside of a clinical trial, after the technology was fast-tracked by the Government - marking a major milestone in NHS cancer care. Addenbrooke’s is…
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11 Mar 2025
By Ronny Allan
4 Comments
Early diagnosis of late stage cancer

Early diagnosis of late stage cancer

Patient Advocacy, , , , , ,
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 most cases, one person mentioned 20…
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08 Mar 2025
By Ronny Allan
0 Comments
Small intestine, large surgery

Small intestine, large surgery

Patient Advocacy, Treatment, , , , , ,
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…
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06 Mar 2025
By Ronny Allan
1 Comment
Health Union Accredits Ronny Allan as a Certified Patient Leader – February 2025

Health Union Accredits Ronny Allan as a Certified Patient Leader – February 2025

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , ,
  Health Union accredits Ronny Allan 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 the world, clearly…
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02 Mar 2025
By Ronny Allan
0 Comments
A Review of February 2025 from Ronny Allan

A Review of February 2025 from Ronny Allan

Newsletters, Patient Advocacy
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…
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26 Feb 2025
By Ronny Allan
0 Comments
Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma

Neuroendocrine Neoplasms: A riddle wrapped in a mystery inside an enigma

A spotlight on NENs, Awareness, Patient Advocacy, , , , , , , , , , , , , , , , , , , , , ,
  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…
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20 Feb 2025
By Ronny Allan
0 Comments
Abseil for NETs – in memory of Heidi and Gary Veacock

Abseil for NETs – in memory of Heidi and Gary Veacock

Fundraising, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
Such Sad news.  I was totally shocked to hear some heart-breaking news late on 5th February 2026.  I had been online friends with Gary Veacock, a recently retired Lt Col in the Royal Marines.  As a veteran, the comradeship was instant.  Initially he would ask questions about NET and my experience.  I guess he was keen to hear about others experiencing the same condition as his wife Heidi.  Later on, I helped him fundraise for Heidi via a Royal Marines sponsored abseil organised by Gary with all proceeds going to Royal Free London, one of the top NET centres of…
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17 Feb 2025
By Ronny Allan
7 Comments
The NETest® – can it replace Chromogranin A and more?

The NETest® – can it replace Chromogranin A and more?

A Spotlight on NENs - Testing Series, Clinical Trials and Research, Patient Advocacy, , , , , , , , , ,
See Summary below for a quick updateUpdate 8th Dec 2025.  New York State Department of Health Grants Approval of Wren Laboratories’ NETest® 2.0 for Clinical Use Clinically Validated Performance In validation across 3,042 NET patients and 1,084 controls/other cancers, NETest 2.0 demonstrated: Sensitivity: 93% Specificity: 85% Positive predictive value: 95% Negative predictive value: 82% Overall accuracy: 91% These results support broad clinical utility, including: Accurate detection across all NET grades and stages  Identification of minimal residual disease, recurrence, and progression Monitoring and prediction of therapeutic response, including 177Lu-PRRT Prognostic value for progression-free and overall survival Detection of neuroendocrine differentiation in select epithelial tumors Click…
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17 Feb 2025
By Ronny Allan
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Ronny’s weekly update – 10th – 16th Feb 2025

Ronny’s weekly update – 10th – 16th Feb 2025

Patient Advocacy
New or Republished Blog Posts this week https://ronnyallan.net/2025/02/14/ronny-allans-ponetry-an-ode-to-lanreotide/ https://ronnyallan.net/2025/02/16/dont-believe-the-hype-neuroendocrine-cancer-myths-debunked/ https://ronnyallan.net/2025/02/15/genetics-and-neuroendocrine-tumors/ https://ronnyallan.net/2025/02/09/ronnys-weekly-update-3rd-9th-feb-2025/ https://ronnyallan.net/2025/02/14/no-one-is-ever-alone-on-ronnyallan-net/ Page Neuroendocrine CancerThis 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 AllanThis 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 Surprised to see this at…
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16 Feb 2025
By Ronny Allan
2 Comments
Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Don’t believe the hype – Neuroendocrine Cancer Myths debunked

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Edited and refreshed 13th January 2026 There's a lot of inaccurate and out-of-date information out there. Some is just a lack of understanding, and some is caused by out-of-date websites. Often the problem is a result of patient forum myth spreading exacerbated by poor moderation in the groups concerned. Some can only be described as propaganda. Some of it even comes from uninformed doctors and bizarrely and disappointingly from NET advocate organisations. All the graphics below contain links to relevant blog posts. Myth 1: All Neuroendocrine Neoplasms will metastasise Simply untrue.  They are a heterogeneous group of tumours.  Read more…
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14 Feb 2025
By Ronny Allan
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No-one is ever alone on RonnyAllan.NET

No-one is ever alone on RonnyAllan.NET

Patient Advocacy, Survivorship
On February 14th, I'm so lucky to have Chris to celebrate Valentine's day.  I know some people live alone and for some that is their choice. But I also know some don't have that choice, perhaps they are a NET patient who lost their partner, or a partner who lost their loved one to NET.  My heart goes out to those today.  I have a private group where people can ask questions about NET which is open 24/7 365 days per year. No-one is ever alone in this group. I may be sleeping if you contact me on my public…
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12 Feb 2025
By Ronny Allan
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5 posts not to miss on Ronny Allan’s blog

5 posts not to miss on Ronny Allan’s blog

Patient Advocacy
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.…
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09 Feb 2025
By Ronny Allan
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Ronny’s weekly update – 3rd – 9th Feb 2025

Ronny’s weekly update – 3rd – 9th Feb 2025

Newsletters, Patient Advocacy
New or Republished Blog Posts this week It's been an unforgettable week.  In addition to the challenges of day to day living including any responsibilities beyond where I live, I seem to have crammed quite a lot in.  Monday was mainly supporting others outside the NET community.  At the other end of the spectrum, Tuesday was a quick trip to London to take part in Macmillan's World Cancer Day.  As a Macmillan Cancer Voice, I was treated to a discussion between the UK Government's Health Minister (Wes Streeting) and well known BBC political commentator Nick Robinson.  I didn't get a…
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05 Feb 2025
By Ronny Allan
8 Comments
Living with Cancer – Worrier or Warrior?

Living with Cancer – Worrier or Warrior?

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , ,
If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers.  I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply 'wired' that way.  I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn't worry about a single thing?  However, the extent of worrying can often have a negative effect on quality of life. You're not going to stop worrying by simply reading this article…
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03 Feb 2025
By Ronny Allan
1 Comment
4th February – World Cancer Day 2026 – Cancer turned my life upside down

4th February – World Cancer Day 2026 – Cancer turned my life upside down

Inspiration, Patient Advocacy, ,
What is World Cancer Day? World Cancer Day is an initiative of the Union for International Cancer Control (UICC), the largest and oldest international cancer organisation dedicated to taking action on cancer. UICC unites and supports the cancer community in its efforts to reduce the global cancer burden, promote greater equity and ensure that cancer control remains a priority on the global health and development agenda. Founded in 1933 and based in Geneva, Switzerland, UICC has more than 1120 member organisations in over 172 countries and territories. The membership base includes the world’s major cancer leagues and societies, research institutes, treatment centres, hospitals, ministries…
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03 Feb 2025
By Ronny Allan
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Ronny’s weekly update – 27th Jan – 02 Feb 2025

Ronny’s weekly update – 27th Jan – 02 Feb 2025

Newsletters, Patient Advocacy
New or Republished Blog Posts this week https://ronnyallan.net/2025/01/26/theres-no-such-thing-as-a-tickbox-neuroendocrine-cancer-patient/ https://ronnyallan.net/2025/01/27/ronnys-weekly-update-20-26-january-2025/ https://ronnyallan.net/2025/01/28/neuroendocrine-cancer-not-all-answers-are-black-and-white/ https://ronnyallan.net/2025/01/29/expanding-prrt-trial-of-177lu-edotreotide-solucin-compete-trial/ https://ronnyallan.net/2025/02/01/a-review-of-january-2025-from-ronny-allan/ Page Neuroendocrine CancerThis 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 AllanThis 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 I guess you like my…
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03 Feb 2025
By Ronny Allan
0 Comments
If you don’t understand the heterogeneity of Neuroendocrine Neoplasms, it’s likely you don’t really understand Neuroendocrine Neoplasms

If you don’t understand the heterogeneity of Neuroendocrine Neoplasms, it’s likely you don’t really understand Neuroendocrine Neoplasms

Patient Advocacy,
If you read any authoritative source on this cancer, it will normally begin with “Neuroendocrine Neoplasms (NENs) are heterogeneous tumours ………….”. "Heterogeneous" means consisting of dissimilar parts or elements, essentially meaning "mixed" or "diverse," but I used the term "heterogeneity" to refer to the quality or state of being heterogeneous, meaning the presence of diverse components within a group or system; both terms indicate a lack of uniformity or consistency. You will note I used the term Neuroendocrine Neoplasms here - that is in line with formal naming conventional per agreed International Agency for Research on Cancer (IARC) terms.  It…
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