30 Oct 2026
By Ronny Allan
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Ronny Allan’s Newsletter covering October 2026

Ronny Allan’s Newsletter covering October 2026

Newsletters, Patient Advocacy, , ,
Summary of October 2026 on RonnyAllan.NET October was similar to the other months of this year but like July and August, views are down on the previous two months due to 3 weeks of holiday.  Still a reasonable blog performance - I can't complain.   Still managed to cover 3 new US FDA approvals!  I had many shares on many posts in October - know this, every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments, questions to ask about this, that and the other. The top posts this month really shows the…
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30 Sep 2026
By Ronny Allan
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Ronny Allan’s Newsletter covering September 2026

Ronny Allan’s Newsletter covering September 2026

Newsletters, Patient Advocacy, , ,
Summary of September 2026 on RonnyAllan.NET September was similar to the other months of this year but like July and August, views are down on the previous two months due to 3 weeks of holiday.  Still a reasonable blog performance - I can't complain.   Still managed to cover 3 new US FDA approvals!  I had many shares on many posts in September - know this, every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments, questions to ask about this, that and the other. The top posts this month really shows the…
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30 Aug 2026
By Ronny Allan
0 Comments
Ronny Allan’s Newsletter covering August 2026

Ronny Allan’s Newsletter covering August 2026

Newsletters, Patient Advocacy, , ,
Summary of August 2026 on RonnyAllan.NET August was similar to the other months of this year but like July, views are down on the previous two months due to 50% of the month spent on holiday.  Still a reasonable blog performance - I can't complain.   Other key targets met were three more editions of the Spotlight series on vitamins and minerals; e.g. see my Spotlights on Magnesium, Selenium and Potassium. I had many shares on many posts in August - know this, every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments, questions…
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18 Jun 2026
By Ronny Allan
0 Comments
The Invisibility of Neuroendocrine Tumours (NET) – an awareness post by Ronny Allan

The Invisibility of Neuroendocrine Tumours (NET) – an awareness post by Ronny Allan

Awareness, , , , , , , ,
"Invisible cancer" typically refers to malignancies that evade early detection or disguise themselves as other common, non-life-threatening ailments. This term is very frequently associated with Neuroendocrine Tumours which are very often difficult to spot on standard imaging and blood tests. 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.  Something was wrong with me. But it wasn't stopping me do stuff.   I'd look in the mirror doing my tie up, ironically the facial flushing was the disease staring me…
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02 Jan 2026
By Ronny Allan
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Ronny Allan – a review of my blog activity December 2025

Ronny Allan – a review of my blog activity December 2025

Newsletters, Patient Advocacy, , , , ,
Here is the monthly summary of December 2025 on RonnyAllan.NET - Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. December is normally a quiet month, often the quietist month of the year.  However, this year, it was the best figures for the whole of 2025.  I think it came on the back of a very productive November as most of them are awareness orientated posts.  Some excellent technical stuff too. The month turned out 26,500 blog views.  The selection of top posts really shows the breadth of subjects applicable to…
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17 Nov 2025
By Ronny Allan
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Bone metastases in Neuroendocrine Tumours (NET) – Part 1

Bone metastases in Neuroendocrine Tumours (NET) – Part 1

Patient Advocacy, , , , ,
DisclaimerThis information is for education and reassurance only.It is not a substitute for personalised medical advice, diagnosis, or treatment. Bone metastases in neuroendocrine tumours (NETs) vary widely in behaviour, appearance, and clinical significance. Decisions about systemic therapy, radiotherapy, ablation, bone‑targeted agents, surgery, or monitoring must be made by your own specialist NET team, who understand your full medical history, imaging, pathology, and symptoms. Every patient’s situation is unique.The treatments described here — including somatostatin analogues, PRRT, targeted therapies, chemotherapy, radiotherapy, ablation, bone‑targeted agents, and surgical stabilisation — are used differently depending on tumour type, receptor status, bone stability, symptoms, and…
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16 Nov 2025
By Ronny Allan
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MP0712 (212Pb x DLL3), Radio-DARPin – DLL3 Radioligand Therapy Trial for Neuroendocrine Neoplasms

MP0712 (212Pb x DLL3), Radio-DARPin – DLL3 Radioligand Therapy Trial for Neuroendocrine Neoplasms

Clinical Trials and Research, , , , , , , , ,
Update 2nd July 2026. First patients dosed.  Molecular Partners and Orano Med have dosed the first patients in a US Phase 1/2a trial of MP0712, a novel Radio-DARPin drug targeting DLL3, a protein highly expressed in small cell lung cancer and other neuroendocrine tumors. This therapy uses lead-212 to deliver targeted alpha radiation to tumors, aiming to improve treatment precision and reduce side effects. Initial safety and efficacy data are expected later in 2026, with comprehensive results anticipated in 2027. The trial is ongoing at five US sites, with more centers planned to open this year. What is Radioligand Therapy?…
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08 Nov 2025
By Ronny Allan
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The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century

The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century

Awareness, Patient Advocacy, , ,
  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…
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07 Nov 2025
By Ronny Allan
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Reframing Neuroendocrine Neoplasms Beyond “Rare”

Reframing Neuroendocrine Neoplasms Beyond “Rare”

Awareness, Patient Advocacy, , , ,
  Neuroendocrine neoplasms (NENs) have outgrown the “rare disease” label. e.g. Across the U.S., UK, Australia, and Canada.  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 These figures reflect improved diagnostics, rising awareness, and longer survival (thus the prevalence figures) — but they also expose a critical gap: prevalence has increased, but understanding has not appeared to keep up.  Some of  you might add that…
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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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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 12th October 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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25 Sep 2025
By Ronny Allan
8 Comments
Immunotherapy and Neuroendocrine Neoplasms

Immunotherapy and Neuroendocrine Neoplasms

Clinical Trials and Research, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Updated 24th September 2025. Introduction There's a lot of Immunotherapy stuff out there!  The picture regarding its use in Neuroendocrine Neoplasms is not clear and there is no general roadmap printed.  I first heard of Immunotherapy for NETs following attendance at ENETS 2017 in Barcelona. The presentation that sticks out was one given by Dr Matthew Kulke, a well-known NET Specialist in Boston. My reaction to the presentation was one of 'expectation management' and caution i.e. it's too soon to know if we will get any success and when we will get it. He also hinted that it's more likely…
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24 Jul 2025
By Ronny Allan
0 Comments
My NET is different than yours

My NET is different than yours

A spotlight on NENs, Awareness, Living with Neuroendocrine Cancer, , , , , , ,
When you manage a large support group, you see a lot of posts.  Many of them highlight a lack of knowledge about the heterogeneity of Neuroendocrine Neoplasms.  The issue is not always with those answering the question but often it is the person asking the question.  Sometimes intervention is needed to focus responses. So, what are the key issues?   Read on..... 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…
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16 Jul 2025
By Ronny Allan
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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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27 Jun 2025
By Ronny Allan
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DLL3 Expression in Neuroendocrine Neoplasms – an overview

DLL3 Expression in Neuroendocrine Neoplasms – an overview

Clinical Trials and Research, Treatment, , , , , ,
Updated 20th August 2025 Background - Conventional therapeutic targets for neuroendocrine tumours (NETs) include somatostatin receptors (SSTRs), mammalian Target of Rapamycin (mTOR), Vascular Endothelial Growth Factor (VEGF), and tyrosine kinases. These pathways are crucial for tumour growth, survival, and angiogenesis. The most well known is SSTRs given that most NETs express these and allows targeted therapies such as somatostatin analogues (SSA) and peptide receptor radionuclide therapy (PRRT) to be used. Other targeted therapies like everolimus and sunitinib, which inhibit mTOR and tyrosine kinases respectively.  Sunitinib also targets VEGF as does cabozantinib. For neuroendocrine carcinomas (Grade 3 poorly differentiated), targeting has…
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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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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. Why? ....because 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' even though that is not an official term in the annals of classification systems! 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…
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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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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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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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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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28 Jan 2025
By Ronny Allan
0 Comments
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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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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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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18 Jan 2025
By Ronny Allan
0 Comments
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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14 Jan 2025
By Ronny Allan
8 Comments
Neuroendocrine Cancer – If you can see it, you can detect it!

Neuroendocrine Cancer – If you can see it, you can detect it!

Living with Neuroendocrine Cancer, Survivorship, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Updated December 2025 Background Scanning is a key diagnostic support and surveillance tool for any cancer.  Even though you have elevated bloods or urine (....or not), a picture of your insides is really like a thousand words.... and each picture has a story behind it. Scanning can be a game changer in the hunt for tumours and although scans do not normally confirm the cancer type and grade, they certainly help with that piece of detective work and are key in the staging of the cancer. When I read stories of people in a difficult diagnosis, I always find myself saying 'a scan…
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01 Dec 2024
By Ronny Allan
23 Comments
Neuroendocrine Cancer – tumour markers and hormone levels

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Originally published 2016, updated October 2025 Background Some people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time.  Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done…
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27 Nov 2024
By Ronny Allan
20 Comments
🔵 The Invisible Neuroendocrine Tumour Population

🔵 The Invisible Neuroendocrine Tumour Population

Awareness, , , , , , , , , , ,
 Introduction For years, patients, clinicians, and researchers have suspected that the true number of people living with neuroendocrine tumours (NETs) is far higher than official statistics suggest. Registry data only captures those who are diagnosed — but what about those who never receive a diagnosis at all? Autopsy studies, historical pathology series, and institutional observations provide a rare window into this invisible NET population. When viewed together, they reveal a consistent global pattern: NETs and related neuroendocrine tumours are under‑diagnosed, under‑recognised, and often present for years before anyone realises what they are. This refreshed article integrates 13 autopsy‑based datasets, two key epidemiologic messages, and updated…
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24 Nov 2024
By Ronny Allan
29 Comments
In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , ,
Originally published March 2017 OPINION.  Date of Article March 2017.  In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…
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23 Nov 2024
By Ronny Allan
4 Comments
Carcinoid – What’s in a name?

Carcinoid – What’s in a name?

Awareness, , , , , , , , , , ,
A quick primer on the word 'CARCINOID'.  It originates from the term 'Carcinoma-like'.  'CARCIN' is a truncation of Carcinoma (by definition cancerous or malignant tumour). 'OID' is a suffix meaning 'resembling' or 'like'.  This infers that Carcinoid cannot be a truly malignant tumour - thus the confusion. The most worrying connotation of the use of the word ‘Carcinoid’ is the belief that they all have benign clinical and biological behaviour.  That is dangerous thinking which could end up killing people. There is now widespread use of the term Neuroendocrine Tumours (NETs) and this is based on the latest classification scheme pushed…
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28 Oct 2024
By Ronny Allan
17 Comments
Things to do today

Things to do today

Inspiration, Living with Neuroendocrine Cancer, Survivorship, , , , , , , ,
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt.  I've been living with my condition since 2010 and I'm a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term! Of course, sometimes you have little choice if you're ill from your condition or something routine.…
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27 Oct 2024
By Ronny Allan
0 Comments
I wish I had another cancer

I wish I had another cancer

Awareness, Inspiration, Patient Advocacy, ,
AN OPINION POST I’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that). Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’.  Ironically, although some cancers are almost certainly worse…
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24 Oct 2024
By Ronny Allan
5 Comments
Pancreatic Cancer vs Pancreatic Neuroendocrine Neoplasms

Pancreatic Cancer vs Pancreatic Neuroendocrine Neoplasms

Awareness, , , , , , , , , ,
DisclaimerThis information is for education and reassurance only.It is not a substitute for personalised medical advice, diagnosis, or treatment. Tumours arising in the pancreas can come from different cell types and behave in very different ways. Decisions about investigations, surgery, systemic therapy, surveillance, or symptom management must be made by your own specialist team, who understand your full medical history, imaging, pathology, and individual circumstances. Every patient’s situation is unique.The terms “pancreatic cancer” and “pancreatic neuroendocrine neoplasm (NEN)” describe biologically distinct diseases with different behaviours, treatments, and outcomes. The information in this article is designed to support understanding, not to…
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03 Oct 2024
By Ronny Allan
5 Comments
A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, , , , , , , , , , , , , , , , , ,
Reviewed and updated 10th October 2026 High Grade Neuroendocrine Neoplasms - the forgotten patient group? When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short.  Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming.  I too am guilty of having a large Facebook site falling into this category.  It's little wonder that those with high grade disease can often feel like the forgotten patient group. …
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07 Sep 2024
By Ronny Allan
2 Comments
Don’t worry, it’s benign!

Don’t worry, it’s benign!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , , , , , , , , ,
One of the most controversial aspects of Neuroendocrine Tumours (NETs) is the ‘benign vs malignant’ question. It’s been widely debated, and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (….or not been told). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant. Any standard cancer nomenclature definition of the word…
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28 Aug 2024
By Ronny Allan
0 Comments
Let’s be clear about Neuroendocrine Tumours – it’s a cancer!

Let’s be clear about Neuroendocrine Tumours – it’s a cancer!

Awareness, Patient Advocacy, , , , , , ,
Dear Readers Another week and another discussion about 'benign vs malignant' in my group. Let's put that into context and dispel one big myth. I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a 'catch-all' term for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). Notwithstanding the fact that there is a Grade 3 NET nowadays, the former is often described as 'slow-growing or 'indolent' in behaviour and the latter is almost always faster growing and a more aggressive cancer. NEC is also frequently…
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01 Aug 2024
By Ronny Allan
2 Comments
Neuroendocrine Cancer: Glossary of Terms

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer sites. How to use this list: 1. If your term begins with an A, see the list of As etc.  Ditto for B to Z.  Select your term from the list, the definition will show along with any of my blogs where that term is mentioned – this adds context. . 2. Numerical terms are also listed. Please note I’m constantly working on the repository to clean up all definitions, adding and removing links where necessary, and…
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21 Jul 2024
By Ronny Allan
9 Comments
Neuroendocrine Cancer: The Perfect Storm

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , ,
The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UK As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed.  I'm one of the lucky ones, even though I still ended up with distant metastases.  It does feel odd to say that having distant metastasis is lucky! I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's…
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18 Jul 2024
By Ronny Allan
17 Comments
Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , , ,
I first published this blog post after the dust settled on the media coverage of the death and funeral of Neuroendocrine Cancer patient Aretha Franklin.  I was saddened by the death of this icon of the music industry but more determined to speak out about the need for our community to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and incredibly, including doctors. About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the…
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05 Jul 2024
By Ronny Allan
19 Comments
Neuroendocrine Cancer – the diarrhea jigsaw

Neuroendocrine Cancer – the diarrhea jigsaw

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Reviewed and updated 5th July 2024 Diarrhea can be a symptom of many conditions, but it is particularly key in Neuroendocrine Tumour (NET) Syndromes and types, in particular, so called Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma, PPoma. Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load. There are other reasons that might be causing or contributing, including (but not…
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04 Jul 2024
By Ronny Allan
0 Comments
The Heterogeneity of Neuroendocrine Neoplasms

The Heterogeneity of Neuroendocrine Neoplasms

Patient Advocacy, ,
If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are a group of heterogeneous tumours .............".  The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements.  This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only…
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03 Jul 2024
By Ronny Allan
1 Comment
The 50 shades of Neuroendocrine Neoplasms

The 50 shades of Neuroendocrine Neoplasms

Awareness, Patient Advocacy, , , , , , , , , , , , , , , , , , , ,
If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are a group of heterogeneous tumours .............".  The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements.  This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only…
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01 Jul 2024
By Ronny Allan
4 Comments
Neuroendocrine Cancer: No one gets it until they get it!

Neuroendocrine Cancer: No one gets it until they get it!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , , , ,
Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous group of cancers ranging from some quite indolent versions…
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22 Jun 2024
By Ronny Allan
1 Comment
Neuroendocrine Cancer: Those who know, know!

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient Advocacy, , , , , , , , , ,
Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions…
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21 Jun 2024
By Ronny Allan
7 Comments
Neuroendocrine Cancer – not average, just mean

Neuroendocrine Cancer – not average, just mean

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , ,
Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene. Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of…
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17 Jun 2024
By Ronny Allan
23 Comments
Metastatic Neuroendocrine Tumours – Incurable but treatable

Metastatic Neuroendocrine Tumours – Incurable but treatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , ,
When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer".  Fortunately, my wife…
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