05 Aug 2026
By Ronny Allan
0 Comments
Spotlight: Magnesium in Neuroendocrine Tumours (NETs)

Spotlight: Magnesium in Neuroendocrine Tumours (NETs)

A spotlight on NENs, Diet and Nutrition, ,
Before you read thisThis information is designed to help you understand how vitamins and minerals work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely.   Magnesium is a vital mineral involved in numerous physiological processes including muscle function, nerve transmission, heart rhythm regulation, and…
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13 Jul 2026
By Ronny Allan
0 Comments
Spotlight: Zinc in Neuroendocrine Tumours (NETs)

Spotlight: Zinc in Neuroendocrine Tumours (NETs)

Diet and Nutrition, Patient Advocacy, ,
  Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely.   What this Spotlight covers A boundary‑focused, NET‑relevant overview of zinc: its physiological role, why deficiency is common in NET patients,…
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03 Jul 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours – Iron

Neuroendocrine Tumours – Iron

Diet and Nutrition, Patient Advocacy, ,
Disclaimer: This Spotlight provides general educational information about Iron. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion, absorption, or chronic blood loss. Always consult your medical team before making changes to supplements or nutrition. Before I knew I had metastatic Neuroendocrine Tumours, I was diagnosed with Iron Deficiency Anaemia by my local GP after two low haemoglobin results (classic sign as haemoglobin is a building block of iron). He referred me to the anaemia clinic at my local hospital.  I never made it that far as I often to see…
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22 May 2026
By Ronny Allan
0 Comments
Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk

Fat‑Soluble Vitamins in Neuroendocrine Tumours (NETs): Why Deficiency Happens and Who Is Most at Risk

A spotlight on NENs, Diet and Nutrition, Patient Advocacy, , , , , , , ,
This blog provides general educational information only. It does not offer medical advice, diagnosis, or treatment. Patients should always consult their clinical team for personalised guidance.   Introduction: What Are Fat‑Soluble Vitamins? Fat‑soluble vitamins — A, D, E and K — are nutrients that can only be absorbed when dietary fat is digested properly. They rely on bile acids, pancreatic enzymes, and a healthy small intestine (especially the jejunum and ileum) to form tiny droplets called micelles, which carry these vitamins across the gut wall. Unlike water‑soluble vitamins, they are stored in the liver and fatty tissues, so deficiencies develop…
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17 May 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate)

Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin B9 (Folate)

A spotlight on NENs, Diet and Nutrition, , , ,
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely.   🟧 SPOTLIGHT: FOLATE (Vitamin B9) - A general‑population overview with NET‑specific considerations where relevant. Disclaimer: This Spotlight provides general educational information…
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16 May 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols)

Neuroendocrine Tumours – A Spotlight on Vitamin E (Tocopherols & Tocotrienols)

A spotlight on NENs, Diet and Nutrition, Patient Advocacy, , , ,
🟧A general‑population overview with NET‑specific considerations where relevant. Disclaimer: This Spotlight provides general educational information about Vitamin E. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion or absorption. Always consult your medical team before making changes to supplements or nutrition. What is Vitamin E? Vitamin E is a group of fat‑soluble antioxidants that protect cell membranes from oxidative damage. The most biologically active form in humans is alpha‑tocopherol. Vitamin E is stored in fatty tissues and depends on normal fat absorption. What does Vitamin E do? Acts as a major…
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15 May 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol)

Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol)

Diet and Nutrition, Patient Advocacy, , ,
Disclaimer: This Spotlight provides general educational information about Vitamin A. It is not a substitute for medical advice. Individual needs vary, particularly for those with conditions affecting digestion, absorption, or liver function. Always consult your medical team before making changes to supplements or nutrition. 🟧A general‑population overview with NET‑specific considerations where relevant. What is Vitamin A? Vitamin A refers to a group of fat‑soluble retinoids (retinol, retinal, retinoic acid). These are the active forms used by the body. Plant pigments such as beta‑carotene are pro‑vitamin A carotenoids that must be converted into retinol before use. What does Vitamin A do?…
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11 May 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones)

Neuroendocrine Tumours (NETs) – A Spotlight on Vitamin K (Phylloquinone / Menaquinones)

Diet and Nutrition, Patient Advocacy, , , , , , ,
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely.   1. What Is Vitamin K? Vitamin K is a fat‑soluble vitamin essential for: Normal blood clotting Bone health Vascular health Two main forms:…
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07 Apr 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours – Vitamin B3 (Niacin)

Neuroendocrine Tumours – Vitamin B3 (Niacin)

Diet and Nutrition, Patient Advocacy, , , , , ,
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely. If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely. What Vitamin B3 Is Vitamin B3 — also known as niacin, nicotinamide, or nicotinic acid — is an essential water‑soluble vitamin your…
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17 Mar 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours – A Spotlight on Vitamin D (Cholecalciferol / Ergocalciferol)

Neuroendocrine Tumours – A Spotlight on Vitamin D (Cholecalciferol / Ergocalciferol)

Diet and Nutrition, Patient Advocacy, ,
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely.If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely.   Vitamin D is a fat-soluble vitamin (along with A, E and K).  Fat-soluble vitamins are absorbed with the other fats from the food…
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27 Feb 2026
By Ronny Allan
0 Comments
Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin)

Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin)

Diet and Nutrition, Patient Advocacy, , , , , , , , , , , , , , ,
Before you read thisThis information is designed to help you understand how vitamins work in the body and how certain NET-related factors might affect them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs can vary widely.If you have concerns about vitamin levels, supplements, or symptoms, please speak with your NET clinical team. They can assess your individual situation and guide you safely.   Vitamin B12 is a water-soluble vitamin.  Unlike fat-soluble vitamins, they are not stored in your body long term. They enter your bloodstream,…
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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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13 Oct 2025
By Ronny Allan
0 Comments
10 Random Blog posts Set 1 – RonnyAllan.NET

10 Random Blog posts Set 1 – RonnyAllan.NET

Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, The NET Effect Series, Treatment
10 Random Blog posts Set 1 - RonnyAllan.NET WelcomeA new series of random blogs that are not only informational, but also relevant. Carefully selected by the author.Thanks for reading.  Feedback welcome. Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption The Cancer Legacy of Steve Jobs Cancer-related fatigue (CRF) - The NET Effect Jimmy Buffett 1946-2023 - Neuroendocrine Carcinoma (Merkel Cell Carcinoma) Cancer Ablation Meet Edison® Histotripsy System - powerful bubbles   Lower grade higher stage NETs - slow motion, chronic and indolent?   Neuroendocrine Cancer Awareness - let’s move into the 21st century   Living with NETs - nobody…
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16 Jul 2025
By Ronny Allan
0 Comments
Ronny Allan’s Glossary of Terms (Basic Edition)

Ronny Allan’s Glossary of Terms (Basic Edition)

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, The NET Effect Series, Treatment, ,
Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top cancer/Neuroendocrine Cancer sites.  This version is a simple combination of an intelligent search (e.g. type first character to filter etc) plus a simple long list of all the terms in my repository. But each has a link which will direct you to the definition of the term plus where applicable, links to any of my articles where I have tagged this term (therefore providing added context).Please note I’m constantly working on the repository to clean up all definitions, adding…
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26 Jun 2025
By Ronny Allan
0 Comments
An ENETS Position Statement on nutritional support in Neuroendocrine Neoplasms

An ENETS Position Statement on nutritional support in Neuroendocrine Neoplasms

Diet and Nutrition, , , , , , , , , ,
I've written many times about Nutrition and NETs - clearly it should say NENs (Neuroendocrine Neoplasms) as the issues also extend to Neuroendocrine Carcinomas.  I was helped in the early days by my friend and 'nutrition for NET' mentor Tara Whyand, at the time, probably the top NET Nutrition Registered Dietitian in the world.  Perhaps she still is. Much of what Tara said and wrote, and what I emphasised, particularly in my blog and my patient group, was that much of this was not fully integrated into NEN patient care as part of a multi disciplinary approach.  Many attempts have…
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28 Apr 2025
By Ronny Allan
1 Comment
The 6 E’s

The 6 E’s

Diet and Nutrition, Inspiration, Patient Advocacy, Survivorship, , , , , , , , , , , , ,
An opinion post When I first heard of something called "The 5 Es", it struck me that I was aware of these issues and their potential effects; and I’m certain there is science to substantiate most of the content. These 5 E’s are apparently the most common ‘triggers’ for (so called) Carcinoid Syndrome. Clearly, they are not going to have the same effect on every patient e.g. I have the occasional drink of ‘Ethanol’ and I always enjoy it, I go for long exhausting walks as ‘Exercise’ and I always feel great after. I had dental treatment using ‘Epinephrine’ without any precautions before and after…
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26 Apr 2025
By Ronny Allan
6 Comments
Catch up on Ronny Allan’s Blog

Catch up on Ronny Allan’s Blog

Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, Treatment
You guys lead busy lives but the aim of this article is to help you catch up. Below are the most read posts in the last 7 days.  Click on anything that takes your fancy.  Many thanks.  To read any article, just click on the title/picture below Latest from Instagram https://www.instagram.com/neuroendocrine.cancer.ronny/ Select of category of posts you'd like to see Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as…
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05 Apr 2025
By Ronny Allan
3 Comments
The trouble with the NET (Part 5) – Cancer Diet Myths

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

Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", , , , , , , , , , ,
Updated 27th June 2026...... Keep reading. Certain popular ideas about how cancer starts and spreads - though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions.  Even food and nutritional supplements fall into this area. Be cautious about believing information about, or paying for, any alternative cancer therapy on the internet. Common dietary myths (this is not a complete list!) There are numerous (alleged)…
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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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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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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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28 Nov 2024
By Ronny Allan
0 Comments
Happy Thanksgiving

Happy Thanksgiving

Diet and Nutrition, Living with Neuroendocrine Cancer, , , , , , , , , , , , , ,
I have been posting this every year on last Thursday in November and I kept forgetting that other countries other than USA (and Territories of the United States) also do Thanksgiving but mostly on different dates. This includes (but is probably not limited to): Canada, Brazil, Grenada, Liberia, Saint Lucia, Leiden (Netherlands), Norfolk Island (Australia).   I hope you all had/have a great Thanksgiving Day! Turkey and Sleep Now ........ I hate to stereotype but I guess a lot of you might be eating turkey on Thanksgiving Day?  No Thanksgiving is complete without a turkey at the table (... so I'm told!). …
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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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12 Nov 2024
By Ronny Allan
0 Comments
Living with Neuroendocrine Tumours – the 14 year itch

Living with Neuroendocrine Tumours – the 14 year itch

Diet and Nutrition, Patient Advocacy, Survivorship, The NET Effect Series, Treatment, ,
Following a diagnosis of metastatic small intestine NET in 2010, I wrote a blog in 2017 entitled "The 7 year itch".  I thought I would re-release it having reached 14 years and almost 7 years since it was published. When I wrote it, I was inferring a link between Lanreotide and my ongoing leg itching.  After some years, I also started to see correlations between itching and many other things including but not limited to the seasons of the year (i.e. it seemed to be worse in the winter).  As another example, I also noticed itchy skin could be caused…
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10 Oct 2024
By Ronny Allan
5 Comments
Weight – the NET Effect

Weight – the NET Effect

Diet and Nutrition, Survivorship, The NET Effect Series, , , , , , , , , , , , , , , , , , , , , , , ,
Foreword After my first surgery in November 2010, I came out at the lightest weight I had been for many many years (10st 7lbs (147lbs)). 6-7 weeks later I went back to work and people privately commented that I shouldn't be at work, I looked too frail and ill. Perhaps it was because my suit no longer fitted me properly! That was an expensive year because I had to buy new suits, a requirement of my employment. Fast forward 4 years, I had to buy some more suits as my weight was going back on. Fast forward 14 years and…
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29 Aug 2024
By Ronny Allan
20 Comments
Serotonin – the NET effect

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
This blog provides general educational information only. It does not offer medical advice, diagnosis, or treatment. Patients should always consult their clinical team for personalised guidance. Background I'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Tumour (NET) patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to…
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27 Aug 2024
By Ronny Allan
5 Comments
The 5 E’s (of Carcinoid Syndrome)

The 5 E’s (of Carcinoid Syndrome)

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , ,
The 5 Es was a good idea but the boundary was never properly defined.  I don't believe it applies to all NETs (including patients) and I don't believe it is necessarily confined to carcinoid syndrome Original Post Since my diagnosis, I seem to have been in a perpetual learning phase! What not to do, what not to eat, what not to read! However, early on in my experience, I came across a list of 'E' words (5 of them) which is a handy reminder for Carcinoid Syndrome patients, particularly those whose symptoms are not under control. When I say "carcinoid…
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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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24 Jul 2024
By Ronny Allan
3 Comments
Diabetes – The NET Effect

Diabetes – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, The NET Effect Series, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Updated January 2026Originally published September 2018. My chest infection is now settled, as too is the excitement and apprehension behind my first ever Ga68 PET - the outcome of that is still a work in progress. Earlier this year, my thyroid 'lesion' on watch and wait was given a 'damping down' with the prescription of a thyroid hormone supplement but I await a re-ignition of that small bush fire downstream. Bubbling behind the scenes and clamouring for attention is the spiking of my blood glucose test results and I was very recently declared 'at risk' for diabetes with a score…
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13 Jul 2024
By Ronny Allan
5 Comments
Road ahead closed – Bowel Obstructions

Road ahead closed – Bowel Obstructions

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , ,
OK - we've gone through diagnosis; we've gone through treatment and now we need to live with the consequences of cancer and its treatment.  Not a day goes by when I don't feel some twinge or some minor pain, and I think 'what was that?'.  Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older! The natural tendency is to think your cancer is causing these things.... easy to say, but very often not easy to prove.  However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel…
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11 Jul 2024
By Ronny Allan
22 Comments
Did you hear the one about the constipated NET patient?

Did you hear the one about the constipated NET patient?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , ,
In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke.   However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments.  Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to…
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07 Jul 2024
By Ronny Allan
7 Comments
Please flush after use!

Please flush after use!

Awareness, Diet and Nutrition, Humour, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , ,
Early in my journey, I was in a public toilet, the sign said "Please flush after use".  I tried my hardest but my face would not turn red.  I then clicked what the sign meant!  OK, that did not happen but it does make for a good intro to the blog title. Over the years, I've read so many stories and answered so many questions about the quite natural act of using a toilet (.....some more repeatable than others).  I think if there were a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours. I jest, clearly,…
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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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27 Jun 2024
By Ronny Allan
9 Comments
Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , , , , , , , ,
Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (irritable bowel syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs.  I see it mentioned on my site a lot, often by people who are quite irritated (pun intended) by a previous diagnosis which perhaps should have led to their actual diagnosis of NET. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future?  In preparation for writing this blog post, I…
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26 Jun 2024
By Ronny Allan
3 Comments
Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Q. The best diet for Neuroendocrine Cancer? A. The one that works for you.

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, ,
Nothing in Neuroendocrine Cancer is ever black or white.  One great example is diet and nutrition. I've lost count of the number of diet related questions I receive online or are posted in my private Facebook support group.  The question is normally worded along these lines: "What should I be eating if I have Neuroendocrine Cancer".  The answer is almost impossible because everyone is different - even generalisations can be way off for many causing unnecessary changes and/or worries. Here are a few of the reasons why these things can get muddled: 1. Not everyone has access to a NET…
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24 Jun 2024
By Ronny Allan
0 Comments
Low and High Residue Foods

Low and High Residue Foods

Diet and Nutrition, Patient Advocacy, , , , , ,
It's clear that no single diet is suitable for everyone, there are just too many variables in Neuroendocrine Cancer. They are a heterogeneous grouping of cancers with different issues; and to a certain extent, different types and different circumstances can throw up different problems.  If you’re not careful, you can go into the 'nth degree' on this subject, so tailored advice from a well-versed registered dietitian is always the preferred option.  I wanted to look at particular circumstances in this article as a low residue diet may be unsuitable for many Neuroendocrine Cancer patients. A low residue diet is sometimes…
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12 Jun 2024
By Ronny Allan
4 Comments
Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought?

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , , , , , , , , , , , , , ,
Reviewed and updated 23rd January 2024 Neuroendocrine Cancer Nutrition Series Part 4 – Amines: Food for Thought? Background Nutrition is an important subject for many cancers, but it can be particularly important for many Neuroendocrine Cancer patients. When I started writing my nutrition series (listed below), I said that my intention is not to tell you what to eat, even though that might be a challenge for many, and this theme continues. The issue with Nutrition and Diet, in general, is that it's very individual and what works for one may not work for another. Often the the best diet…
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28 May 2024
By Ronny Allan
22 Comments
Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Neuroendocrine Cancer Nutrition Series Article 3 – Gut Health

Diet and Nutrition, , , , , , , , , , , , , , , , , , , , ,
In this article, I'm discussing the use of probiotics to combat several issues including the general health of the 'gut' including IBS like symptoms,  and the potential issue of small intestine bacterial overgrowth (SIBO), all of which may be related in some way to Neuroendocrine Tumours.  That said, these issue may be regular conditions, nothing to do with NET.  Nutritional issues are one of the biggest challenges affecting most Neuroendocrine Cancer patients and nutrition and gut health can become more important issues.  It is also a key factor in maintaining a decent quality of life and for most countries without…
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23 May 2024
By Ronny Allan
20 Comments
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Neuroendocrine Cancer Nutrition Series Article 2 – Gastrointestinal Malabsorption is the second article in the Neuroendocrine Cancer Nutrition series. In the first article, I focused on Vitamin and Mineral deficiency risks for patients and there is a big overlap with the subject of Gastrointestinal Malabsorption. Those who remember the content will have spotted the risks pertaining to the inability to absorb particular vitamins and minerals. This comes under the general heading of Malabsorption and in Neuroendocrine Cancer patients, this can be caused or exacerbated by one or more of a number of factors relating to their condition. It's also worth pointing out that…
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23 May 2024
By Ronny Allan
29 Comments
Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Neuroendocrine Cancer Nutrition Series Article 1 – Vitamin and Mineral Challenges

Diet and Nutrition, , , , , , , , , , , , , , , , , , , , , , , , ,
  Disclaimer: This Spotlight is for general information only and should not be used as a substitute for personalised medical advice. Neuroendocrine neoplasms (NENs) are diverse, and individual cases vary. Always discuss your specific situation, test results, and treatment options with your own specialist team. Content reflects current evidence and classifications at the time of writing and may evolve as new data emerge.   Always speak to your specialist before taking vitamin and mineral supplements.   Featuring Tara Whyand Vitamin deficiency is common in the general population so your issue may not be related to NET.  But read on to learn…
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26 Apr 2024
By Ronny Allan
11 Comments
The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

Awareness, Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Survivorship, , , , , , ,
“But it works… I read it on the internet!” You may remember my article entitled The trouble with the NET (Part 1) which was a light-hearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media. Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer.  They also post them on social media increasing…
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12 Apr 2024
By Ronny Allan
10 Comments
Chocolate – the NET effect

Chocolate – the NET effect

Diet and Nutrition, Humour, The NET Effect Series, , , , , , ,
I've always had a 'sweet tooth' and the softer the sweet the better - toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts, 'tablet' and macaroon bars (both from Scotland), are all on my list of favourites.  In terms of desserts, I love those too - ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn't complete without a biscuit (or three....). Don't get me wrong, I'm not stuffing my face with sweet stuff 24/7, however I do need my sugar 'fix' now and then. I'm not a…
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20 Mar 2024
By Ronny Allan
23 Comments
The trouble with the NET (Part 1) – Cancer Myths

The trouble with the NET (Part 1) – Cancer Myths

Awareness, Diet and Nutrition, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Survivorship, , ,
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. In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey. In a similar study in UK, the NHS blamed social media…
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11 Oct 2023
By Ronny Allan
3 Comments
My stomach sometimes cramps my style

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, , , , , , ,
When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!).  In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'.  Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......).  This major undertaking was within 4 years of my diagnosis and within two years of 3 surgeries and I was borderline stable.  I wanted to get it done while I was able! As a Cancer patient, there were some issues…
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03 Oct 2023
By Ronny Allan
1 Comment
Who needs a gallbladder anyway?

Who needs a gallbladder anyway?

Diet and Nutrition, Treatment, , , , , , , , ,
We can survive without a gallbladder, but clearly it is a useful, functioning organ, and we are better off to keep it if we can. There are times when things can go wrong such as gallstones, sludge and blocked ducts, and then it may need to be removed. However……even though there wasn’t really anything wrong with my gallbladder in 2010/2011, I was convinced it had to go.For info, gallstones incidence in the general population makes it considerably more common than NETs so it follows that some NET patients will have a gallstone issue totally unrelated to their NET.  Gallstones are…
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05 Sep 2023
By Ronny Allan
10 Comments
Update from Ronny Allan: No evidence of progressive disease at any site

Update from Ronny Allan: No evidence of progressive disease at any site

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , ,
Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site".Very pleased!With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing…
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23 Apr 2023
By Ronny Allan
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Low FODMAPs – The NET Effect

Low FODMAPs – The NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series, , , , , , ,
Background Many people with NET have had issues prior to diagnosis and then continue to have similar issues after. For some it will be either one, i.e. no issues before but issues after or vice versa.  However, it's even possible that some people have will have different issues after diagnosis than they had before, e.g. the side effects of the treatment will produce new problems for those people.  In the early days, I once said to my Oncologist "I was never misdiagnosed with irritable bowel syndrome (IBS) but I sometimes feel like I have it now". IBS is said to…
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10 Mar 2023
By Ronny Allan
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Fructose intolerance – the NET Effect

Fructose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series, , , , , ,
Background  When I cast my mind back to my very first surgery, I remember all sorts of 'plumbing' issues but was told it would take a while for my adjusted plumbing to repair and do its work once more. It's not gone fully back to normal, but I accept minor side effects of getting rid of cancer (metastatic with small intestine NET primary). My diet is slightly different nowadays as I endeavour to return to that normality, and I have a good handle on what makes me move faster AND slower. Constipation is not good either, so I try to…
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05 Mar 2023
By Ronny Allan
0 Comments
Treatment for Neuroendocrine Cancer: Beware of the alternatives

Treatment for Neuroendocrine Cancer: Beware of the alternatives

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment,
The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say.  I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to…
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11 Jan 2023
By Ronny Allan
3 Comments
Lactose intolerance – the NET Effect

Lactose intolerance – the NET Effect

Diet and Nutrition, Patient Advocacy, The NET Effect Series, , ,
Background   When I cast my mind back to my very first surgery, I remember asking my Oncologist what I could do to put on weight.  He said to drink full-fat milk.  I was compliant in those days without reverting to Dr Google.   Anyway, I did put on weight but perhaps the milk played a small part in that, and I eventually returned to semi-skimmed which I continue to use today (12 years on).    My breakfast regime in the last 12 years since that surgery contains regular semi-skimmed milk and my many cups of tea have the same milk added. …
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