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 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)…
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04 Apr 2025
By Ronny Allan
0 Comments
These 5 posts about Neuroendocrine Cancer are worth a read, see why inside

These 5 posts about Neuroendocrine Cancer are worth a read, see why inside

Newsletters, , ,
Sometimes I experiment with the layout, length and choice of words and graphics (particularly the latter) to see if a certain approach increases traffic and hits.  As a blogger, traffic and hits are important for motivation but for me, the message is always more important. I once wrote a blog in 30 minutes and it is currently still the most read blog and has been for years.  I adopted a Halloween theme for an awareness post called "Neuroendocrine Cancer – normally slow but always sneaky" I was amazed by the response, despite the quick and dirty output. I've written many…
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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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29 Mar 2025
By Ronny Allan
5 Comments
50 years of marriage – in sickness and in health

50 years of marriage – in sickness and in health

Inspiration
When I was diagnosed with metastatic Neuroendocrine Cancer in 2010, there's a lot of milestones I doubted I would reach. One is today and I can now tick off another and be thankful for reaching it. I have been married to a kind and beautiful lady for 50 years today - 29th March 2025. I've written a lot about so called 'cancerversaries' but real life anniversaries are so much more meaningful. The former is really about survival but also inspires hope. The latter is also about survival in this modern age but it is also about love and thankfulness. I'm…
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24 Mar 2025
By Ronny Allan
0 Comments
Ronny Allan’s weekly round-up for 17 – 23rd March 2025

Ronny Allan’s weekly round-up for 17 – 23rd March 2025

Newsletters
New or Republished Blog Posts this week https://ronnyallan.net/2025/03/23/living-with-cancer-dont-cross-the-bridge-until-you-arrive-at-it/ https://ronnyallan.net/2025/03/22/neuroendocrine-cancer-functional-vs-non-functional/ https://ronnyallan.net/2025/03/18/ronnys-weekly-round-up-for-10-16th-march-2025/ 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. This one resonated - 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 This one got…
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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-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…
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18 Mar 2025
By Ronny Allan
0 Comments
Ronny’s weekly round-up for 10 – 16th March 2025

Ronny’s weekly round-up for 10 – 16th March 2025

Newsletters
New or Republished Blog Posts this week https://ronnyallan.net/2025/03/15/neuroendocrine-cancer-and-pancreatic-enzyme-replacement-therapy-pert-the-digested-version-nutrition-series-article-5/ https://ronnyallan.net/2025/03/14/letter-from-america/ https://ronnyallan.net/2025/03/13/histotripsy-the-case-for-use-in-uk/ https://ronnyallan.net/2025/03/11/early-diagnosis-of-late-stage-cancer/ 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 a special post box…
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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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14 Mar 2025
By Ronny Allan
6 Comments
Letter from America

Letter from America

Awareness, Inspiration, Living with Neuroendocrine Cancer
I've always been one to keep an eye out for the postman (the postie as we say here). Even as a heavy user of computers, I still get excited about receiving 'paper' mail.  Other than birthday cards, I personally don't tend to see many handwritten letters nowadays. In today's internet connected world, handwritten letters are always exciting, always special. However, the one I received in the first week of February 2019 was extra special, it was postmarked from North Carolina USA. Now ….. for those around the same age as me, you might have been attracted by the article header…
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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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07 Mar 2025
By Ronny Allan
5 Comments
Neuroendocrine Cancer in England: One every 90 minutes

Neuroendocrine Cancer in England: One every 90 minutes

Awareness, , , , ,
I've made no secret of the fact that I don't believe Neuroendocrine Cancer is rare and you can read why in some detail in my article Neuroendocrine Cancer - not as rare as you think.  Better diagnostic technology, greater awareness and better recording of the correct disease in national cancer registries. The latest figures for Public Health England (covering ~90% of UK), indicate there are now approximately 6000 diagnoses of NETs every year, i.e. more people than ever are being diagnosed, It is calculated from an incidence rate of approximately 9/100,000.  This means NEN can now no longer be defined…
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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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02 Mar 2025
By Ronny Allan
0 Comments
Ronny’s weekly update – 24th Feb – 2nd Mar 2025

Ronny’s weekly update – 24th Feb – 2nd Mar 2025

Newsletters
New or Republished Blog Posts this week https://ronnyallan.net/2021/05/22/clinical-trial-survivin-long-peptide-vaccine-in-treating-patients-with-metastatic-neuroendocrine-tumors/ https://ronnyallan.net/2025/02/17/the-netest-a-chromogranin-a-replacement-and-more/ . https://ronnyallan.net/2025/02/19/the-5-es-of-my-daytrip/ https://ronnyallan.net/2025/02/20/neuroendocrine-cancer-nodes-nodules-lesions/ https://ronnyallan.net/2025/02/20/abseil-for-nets-featuring-heidi-veacock/ 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. A BIG THANK YOU! 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…
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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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23 Feb 2025
By Ronny Allan
0 Comments
Ronny’s weekly update – 17th – 23rd Feb 2025

Ronny’s weekly update – 17th – 23rd Feb 2025

Newsletters
New or Republished Blog Posts this week https://ronnyallan.net/2021/05/22/clinical-trial-survivin-long-peptide-vaccine-in-treating-patients-with-metastatic-neuroendocrine-tumors/ https://ronnyallan.net/2025/02/17/the-netest-a-chromogranin-a-replacement-and-more/ https://ronnyallan.net/2025/02/18/neuroendocrine-cancer-my-distant-lymph-nodes/ https://ronnyallan.net/2025/02/19/the-5-es-of-my-daytrip/ https://ronnyallan.net/2025/02/20/neuroendocrine-cancer-nodes-nodules-lesions/ https://ronnyallan.net/2025/02/20/abseil-for-nets-featuring-heidi-veacock/ 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…
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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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20 Feb 2025
By Ronny Allan
18 Comments
Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

Neuroendocrine Cancer: Nodes, Nodules, Lesions (and false alarms!)

Living with Neuroendocrine Cancer, Survivorship, The NET Effect Series, Treatment, , , , , , , , , , , , , , , , , , , , ,
A fairly common disposition of Neuroendocrine Neoplasms is a primary with associated local/regional secondary's (e.g. lymph nodes), and often with liver metastases. Technically speaking, the liver is distant. However, many metastatic patients appear to have additional and odd appearances in even more distant places, including (but not limited to) the extremities and the head & neck. Certain things are known about the behaviour of Neuroendocrine Neoplasms (NENs) (a term for Neuroendocrine Tumours and Neuroendocrine Carcinoma) and specialists will be analysing many factors when working out the type of NEN and how it might behave. This is useful in cases of…
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19 Feb 2025
By Ronny Allan
2 Comments
The Other 5 E’s by Ronny Allan

The Other 5 E’s by Ronny Allan

Inspiration, Living with Neuroendocrine Cancer, , , , , , , , , ,
I sometimes need motivating and it's really easy to put off doing 'hard things', instead opting for your comfort zone of staying at home. It's often easier to say, "I can't" than it is to say, "I can". And yet, each time I hesitate about saying "I can", I always end up refreshed, enthused, and happy I didn't say "I can't". So, this is the story of my daytrip at the end of summer (and pretty much many days out). The 5 Es Those who know about the 5 E's of (so called) carcinoid syndrome will get the meaning of…
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18 Feb 2025
By Ronny Allan
2 Comments
Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Neuroendocrine Cancer Surgery 3: my distant lymph nodes

Treatment, , , ,
Updated 27th February 2026 My experience with lymph node surgery - 27th February 2012 As a metastatic Small Intestine NET case, I had the usual bulky chains of lymph node metastases in or around the mesentery that frequently appear with an abdominal primary. Most of these were removed during my primary resection. I still have some suspicious lymph nodes in the peri-aortic region, potentially responsible for my retroperitoneal fibrosis, another strange issue I live with.However, I also had some 'distant nodes' above the diaphragm. My surgeon described my 'distant' lymph node issues as an 'unusual disposition' of tumours. These were …
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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
0 Comments
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 are just a lack of understanding, and some are 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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15 Feb 2025
By Ronny Allan
10 Comments
Genetics and Neuroendocrine Tumours

Genetics and Neuroendocrine Tumours

Awareness, Living with Neuroendocrine Cancer, Survivorship, , , , , , , , , , , , , , , , , , , , , , , , , , ,
Hereditary genetics.....where to focus In recent years, it has become increasingly apparent that a number of Neuroendocrine tumours arise as a result of germline genetic mutations and are inherited in an autosomal dominant pattern. The number of genes implicated is increasing as research advances and I cannot guarantee this post will contain all of them. Apparently, 5-10% of NETs are estimated to have a hereditary background. Hereditary syndromes associated with these include Multiple Endocrine Neoplasia (MEN), Von Hippel Lindau (VHL), Neurofibromatosis Type 1 (NF1), Tuberous Sclerosis (TS) and others. People who have a genetic condition may present with the tumours…
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14 Feb 2025
By Ronny Allan
1 Comment
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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14 Feb 2025
By Ronny Allan
0 Comments
Ronny Allan’s ‘PoNETry’ – An Ode to Lanreotide

Ronny Allan’s ‘PoNETry’ – An Ode to Lanreotide

Humour, Inspiration, Survivorship, Treatment, , , ,
  Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan.NET Read about my experience with Lanreotide - click here Thanks for reading Ronny     I also have PoNETry on Invisible Illness - click here Click here and answer all questions to join my private Facebook group   Most recent posts - click to read    
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13 Feb 2025
By Ronny Allan
0 Comments
Lanreotide and Keytruda – the PLANET study (NCT03043664)

Lanreotide and Keytruda – the PLANET study (NCT03043664)

Clinical Trials and Research, , , , ,
Update 13th February 2025.  In my main coverage of Immunotherapy for Neuroendocrine Neoplasms (NENs), you will see a section where one NET specialists described Neuroendocrine Tumours as an “immunological desert”.  What was meant by is that there’s little evidence immunotherapy is effective in the majority of Neuroendocrine Tumours (NETs).  The output from this trial continues to back that view.  It is important to note the nomenclature of NETs rather than NENs as almost all the immunotherapy drug approvals to date have been for Neuroendocrine Carcinomas (NECs). As the trial abstract conclusion said, "We conclude that immune checkpoint blockade had low…
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12 Feb 2025
By Ronny Allan
0 Comments
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
0 Comments
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
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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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01 Feb 2025
By Ronny Allan
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A review of January 2025 from Ronny Allan

A review of January 2025 from Ronny Allan

Newsletters, Patient Advocacy,
Here is the monthly summary of January 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. 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…
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29 Jan 2025
By Ronny Allan
4 Comments
Phase 3 Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs

Phase 3 Clinical Trial of PRRT ITM11 177Lu-Edotreotide – COMPETE for GEPNETs

Clinical Trials and Research, , , , , , , , , , , , , , ,
Update - 13th November 2025. ITM Announces FDA Acceptance of New Drug Application (NDA) and PDUFA Date for n.c.a. ¹⁷⁷Lu-edotreotide (ITM-11) in Gastroenteropancreatic Neuroendocrine Tumors (GEP-NETs) Garching / Munich, Germany, November 13, 2025 - ITM Isotope Technologies Munich SE (ITM), a leading radiopharmaceutical biotech company, today announced that the U.S. Food and Drug Administration (FDA) completed its filing review and accepted the company’s New Drug Application (NDA) for n.c.a. 177Lu-edotreotide (also known as ITM-11 or 177Lu-edotreotide). 177Lu-edotreotide is ITM’s proprietary, synthetic, targeted radiotherapeutic investigational agent for the treatment of gastroenteropancreatic neuroendocrine tumors (GEP-NETs). The FDA has set a Prescription Drug User Fee Act (PDUFA) goal…
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28 Jan 2025
By Ronny Allan
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Neuroendocrine Cancer: Not all answers are black and white

Neuroendocrine Cancer: Not all answers are black and white

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect Series, ,
I get lots of questions. Some are direct to me by a messenger type app. Many are posed in my private group - these are normally always directed at the entire group but often I'm tagged in, a giant hint that I'm expected to reply. I don't mind too much but my answer is generally the same whichever scenario. Where I'm not tagged, I'm still happy to answer along with others in the same post. Sometimes I only comment as part of my moderating role in the group. In the early days, I would generally contribute to most posts but…
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27 Jan 2025
By Ronny Allan
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Ronny’s weekly update 20-26 January 2025

Ronny’s weekly update 20-26 January 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/2025/01/24/neuroendocrine-cancer-ga68-pet-scan-a-game-changer/ https://ronnyallan.net/2025/01/22/neuroendocrine-cancer-to-cut-or-not-to-cut/ https://ronnyallan.net/2025/01/21/neuroendocrine-cancer-my-liver-surgery/ https://ronnyallan.net/2025/01/18/every-picture-tells-a-story/ 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 an oldie but…
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26 Jan 2025
By Ronny Allan
5 Comments
There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

Awareness, Patient Advocacy, , , ,
Thousands of people are diagnosed with cancer every day.  Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been ploughed into research and care services.  Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and be under surveillance for a period (normally 5 years but this differ with different cancer types) and then be declared in remission, or even cured. The problem with certain cancer symptoms is that they are not…
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24 Jan 2025
By Ronny Allan
16 Comments
Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?

Neuroendocrine Cancer: Somatostatin Receptor (e.g. Ga68, Cu64) PET Scans – a game changer?

Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , ,
I was diagnosed in 2010 with metastatic NETs clearly showing on CT scan, the staging was confirmed via an Octreotide Scan which in addition pointed out two further deposits above the diaphragm (one of which has since been dealt with). In addition to routine surveillance via CT scan, I had two further Octreotide Scans in 2011 and 2013 following 3 surgeries, these confirmed the surveillance CT findings of the remnant disease. The third scan in 2013 highlighted an additional lesion in my thyroid (still under a watch and wait regime, biopsy inconclusive - but read on....). In 2018, my 6…
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22 Jan 2025
By Ronny Allan
7 Comments
Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , ,
Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me).  Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors.  If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…
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21 Jan 2025
By Ronny Allan
12 Comments
Neuroendocrine Cancer – my liver surgery April 2011

Neuroendocrine Cancer – my liver surgery April 2011

Treatment, , , , , , , , , , , ,
  From day 1 of my diagnosis, I knew my liver was going to need some attention, but I had always known that total removal of all tumours would not be possible - the diagnostic scan confirmed I had an incurable disease. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several with quite avid isotope activity. However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery which took…
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18 Jan 2025
By Ronny Allan
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Ronny Allan – Every picture tells a story

Ronny Allan – Every picture tells a story

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, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text.  This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! 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),…
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16 Jan 2025
By Ronny Allan
3 Comments
Neuroendocrine Cancer: Diagnosing the Undiagnosed

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Patient Advocacy, , , , , , , , , , , , , , , , , ,
Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if…
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15 Jan 2025
By Ronny Allan
28 Comments
Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Somatostatin Analogues for Neuroendocrine Cancer: Lanreotide and Octreotide

Treatment, , , , , , , , , , , , , , , , , , , ,
Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. Updated and reviewed 15th January 2025. Somatostatin Analogues are the 'workhorse' treatments for those living with NETs, particularly where certain syndromes are involved.  So not just for classic NETs with Carcinoid Syndrome but also for treating the hormone over secretions caused by insulinoma, gastrinoma, glucagonoma and VIPoma (all types of pNETs) and others. They are most effective if the NETs express somatostatin receptors.  They also have an anti-tumour effect but more of a slowing down of growth rather than a killing or reduction of tumour size - but there…
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