Patient Advocacy Archives

30 Aug 2026

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Ronny Allan’s Newsletter covering August 2026

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

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…

25 Aug 2026

By Ronny Allan

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External Beam Radiation Therapy (EBRT) for Neuroendocrine Neoplasms

Clinical Trials and Research, Patient Advocacy, TreatmentCyberknife, External Beam Radiation Therapy (EBRT), Stereotactic body radiotherapy (SBRT)

Disclaimer: The information in this section is for education only and does not represent a standard care pathway or service. These treatments are not suitable for everyone, and careful patient selection by an experienced multidisciplinary team is essential. Always discuss your individual situation with your own specialist team. External Beam Radiation Therapy (EBRT) is an established medical treatment with roots dating back to the late 19th century, but modern EBRT is far more precise, and new technologies now allow safer treatment of tumours that were previously difficult to target. It uses high‑energy beams to damage cancer cells. The…

12 Aug 2026

By Ronny Allan

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2026 Surveillance Update from Ronny Allan: “See you in 12 months”

Inspiration, Living with Neuroendocrine Cancer, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Lanreotide, Small intestine NET (SI NET)

It's only a couple of weeks since I celebrated my 16th year since diagnosis of metastatic small intestine Neuroendocrine Tumour (NET) at Grade 2 on 26th July 2010. Thinking back to that period of my life, I'm happy but also slightly amazed to be celebrating such a long milestone having been diagnosed with cancer at Stage IV. I think it's a sign of many things, including but not limited to, early intervention by inquisitive healthcare professionals following vague symptoms, early access to a NET multidisciplinary team (MDT). Of course, human resilience must also be a factor. I didn't take this…

10 Aug 2026

By Ronny Allan

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Spotlight: Selenium in Neuroendocrine Tumours (NETs)

A spotlight on NENs, A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacySelenium, Vitamins and Minerals

Before you read this This information is designed to help you understand how vitamins and minerals work in the body and how certain NET‑related factors might influence them. It is not a substitute for personalised medical advice. Every NET patient is different — tumour type, treatments, surgery, symptoms, and nutritional needs vary widely. If you have concerns about selenium levels, supplements, or symptoms, please speak with your NET clinical team. What Selenium Is Selenium is an essential trace element required for the function of several selenoproteins involved in: Antioxidant defence Redox regulation Thyroid hormone metabolism Immune function Cellular protection Although…

07 Aug 2026

By Ronny Allan

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Spotlight: Potassium in Neuroendocrine Tumours (NETs)

A spotlight on NENs, A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacyElectrolytes, Potassium

Before you read this This 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. Potassium is one of the most tightly regulated electrolytes in the body. Even small deviations can affect muscle…

01 Aug 2026

By Ronny Allan

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Ronny Allan’s Newsletter covering July 2026

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Grade, Iron Deficiency Anaemia, Small intestine NET (SI NET), Stage, Water soluble vitamins, Zinc

Summary of July 2026 on RonnyAllan.NET July was similar to the other months of this year but views down on the previous two months due to 50% of the month spent on holiday. Still a reasonable blog performance. Other key targets met were three more editions of the Spotlight series on vitamins and minerals. See my Spotlights on Iron and Zinc. I had many shares on many posts in July - 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…

14 Jul 2026

By Ronny Allan

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14th July 2026 – Ronny Allan hits 3 million blog views!

Patient AdvocacyMetastatic Neuroendocrine Cancer

Today, 14th July 2026, I can confirm the 3 million views milestone has been reached. MASSIVE THANKS to you guys for reading and sharing. When I first set up this blog in April 2014, it was just to help spread awareness (....and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall with my wife Chris. I never thought for one minute I would reach a thousand hits let alone 10,000 or 100,000 views. When I reached 1 million, I was totally flabbergasted. When I reached 2 million, I was a bit proud. I just…

13 Jul 2026

By Ronny Allan

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Spotlight: Zinc in Neuroendocrine Tumours (NETs)

A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacyMicronutrients, Vitamins and Minerals, Zinc

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,…

03 Jul 2026

By Ronny Allan

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Neuroendocrine Tumours – Iron

A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacyIron, Iron Deficiency Anaemia, Micronutrients

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…

30 Jun 2026

By Ronny Allan

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Ronny Allan’s Newsletter covering June 2026

Diet and Nutrition, Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Fat soluble vitamins, Pancreatic NET (PanNET), Small intestine NET (SI NET), Water soluble vitamins

Headline - half yearly point bonus edition Summary of June 2026 on RonnyAllan.NET June was similar to the other months of this year but slightly down on the previous two months due to holiday. Still a strong blog performance. Other key targets met were three more editions of the Spotlight series on primary NET types (colon, thymic and ovarian). See my Spotlight series. Also a recent focus on clinical trials (mostly updates) and a revision of alpha-emitter PRRT. I had many shares on many posts in June - know this, every share helps someone understand or even work towards a diagnosis, discovery…

24 Jun 2026

By Ronny Allan

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Clinical Trials PRRT: From 177Lu to 225Ac: The DOTA-LM3 Antagonist Journey

Clinical Trials and Research, Patient Advocacy, TreatmentCancer research, Peptide receptor radionuclide therapy (PRRT), Targeted alpha-emitter therapy (TAT)

Disclaimer:Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals. The evolution of peptide receptor radionuclide therapy (PRRT) has always been driven by a simple idea: if we can deliver more energy to the tumour while sparing normal tissues, outcomes will improve. For years, the…

23 Jun 2026

By Ronny Allan

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Clinical Study from the Australasian Gastro-Intestinal Trials Group (AGITG) STOPNET

Clinical Trials and Research, Patient AdvocacyClinical trial, Lanreotide, Octreotide, Peptide receptor radionuclide therapy (PRRT), Somatostatin analogues

Disclaimer:Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals. I've been luckier than some. I suspect I was treated earlier despite being diagnosed at stage IV (go figure). I had 3 surgeries 2010-2012 and since then only treatment with a 28 day somatostatin analogue (Lanreotide)…

20 Jun 2026

By Ronny Allan

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Small tumours – big impact

Patient AdvocacyCancer staging, Neuroendocrine tumour (NET), TNM staging system

Many Neuroendocrine Tumours are small. Not my words but I first discovered the term in 2021 when reading the words of Dr Mark Lewis, Oncologist and NET Patient. He himself, was citing this term referencing back to giants in the world of NETs over many decades. There was a seminal lecture entitled "An Odyssey in the Land of Small Tumors". Mark made the point in 2021 that there was still a lot to do in the land of small tumors (including the use of misnomer terms). As another patient (but with a different type than Mark), my initial comment was…

08 Jun 2026

By Ronny Allan

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Ronny Allan’s Newsletter covering May 2026

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Fat soluble vitamins, Pancreatic NET (PanNET), Small intestine NET (SI NET), Water soluble vitamins

Just back from holiday thus why the late publication! Summary of May 2026 on RonnyAllan.NET I think the main story of May is similar to March and April which was a strong blog performance. Other key targets met were the two main primary NET types (small intestine and pancreas) and one not so common(thymus) have finally been added to my Spotlight series and a batch of updates to my vitamin series. You will note blogs are coming through in a different format? This was partly due to people with iPhones complaining about 'jumpy screens'. That was resolved the issue but I am…

22 May 2026

By Ronny Allan

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

A spotlight on NENs, A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacyBile acid malabsorption, Fat malabsorption, Fat soluble vitamins, Malabsorption, Vitamin A, Vitamin ADEK, Vitamin D, Vitamin E, Vitamin K

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…

16 May 2026

By Ronny Allan

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

A spotlight on NENs, A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacyFat malabsorption, Fat soluble vitamins, Malabsorption, Vitamin ADEK, Vitamin E

🟧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…

15 May 2026

By Ronny Allan

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Neuroendocrine Tumours – A Spotlight on Vitamin A (Retinol)

A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient Advocacycarotenoids, Malabsorption, Vitamin A, Vitamin ADEK

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?…

12 May 2026

By Ronny Allan

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200 Lanreotide Injections: A Milestone in Long‑Term Neuroendocrine Tumour (NET) Management

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, TreatmentLanreotide

Disclaimer: Educational and advocacy content only. Not a substitute for medical advice. Two hundred injections. It’s a milestone that carries weight — not because of the number itself, but because of what it represents: continuity, stability, and the lived reality of managing Neuroendocrine Cancer over the long term. Lanreotide has been part of my life since 2010, and today’s dose marks more than a treatment event — it marks a journey shaped by science, routine, and resilience. What Lanreotide Does — and Why Deep‑Subcutaneous Matters Lanreotide is a long‑acting somatostatin analogue designed to bind to SSTR2 on neuroendocrine tumour…

11 May 2026

By Ronny Allan

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

A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacyBile acid malabsorption, Exocrine pancreatic insufficiency, Fat malabsorption, Fat soluble vitamins, Prothrombin Time Test and INR (PT/INR), Somatostatin analogues, Vitamin D, Vitamin K

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:…

04 May 2026

By Ronny Allan

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Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs)

A spotlight on NENs, A spotlight on NENs - Types, Patient Advocacy, Spotlight on NENs - Types SeriesAtypical carcinoid tumour, Atypical Thymic NET, Carcinoid, Carcinoid syndrome, Cushing's syndrome, MEN1 syndrome, Thymic NEN, Thymic Neuroendocrine Carcinoma (NEC), Typical Carcinoid, Typical Thymic NET

Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment. Thymic Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here. Always discuss your own situation, test results, and treatment options with your specialist team, including your thoracic, oncology, endocrine, or NET multidisciplinary team (MDT). If you have concerns about symptoms, progression, or treatment decisions, please seek guidance from your clinical team without delay. Spotlight on Thymic Neuroendocrine Neoplasms (Thymic NENs) A rare but important member of the NEN…

30 Apr 2026

By Ronny Allan

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An unmissable update from Ronny Allan covering April 2026

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

A monthly update not to miss........Summary of April 2026 on RonnyAllan.NET I think the main story of April is similar to March which was a strong blog performance. Some of March was so popular that it has rolled into April and I have tried to beat those figures but failed due to external pressures. Nonetheless, the figures for the first third of the year are impressive in comparison to the last 5 years. Other key targets met were the two main primary types have finally been added to my Spotlight series - you will see those listed below. You will note…

26 Apr 2026

By Ronny Allan

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Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)

A spotlight on NENs, A spotlight on NENs - Types, Patient AdvocacyCarcinoid heart disease, Carcinoid syndrome, Hedinger syndrome, Ileum, Jejunum, Mesenteric Fibrosis, Retroperitoneal Fibrosis, Small intestine NET (SI NET), Terminal ileum

DisclaimerThis Spotlight is for general education and reassurance only. It cannot replace personalised advice from your own medical team, who understand your individual history, imaging, pathology, and treatment needs. Neuroendocrine tumours vary widely in behaviour, presentation, and management, and guidance may evolve as new evidence emerges. If you have questions about your diagnosis, symptoms, or treatment plan, please discuss them directly with your specialist NET team. Small intestine neuroendocrine neoplasms (siNENs) - (Jejunum + ileum — excluding duodenum) Small intestine neuroendocrine neoplasms (siNENs) arise in the mid‑gut, specifically the ileum and jejunum. These two segments form the core of “small intestine…

23 Apr 2026

By Ronny Allan

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A Spotlight on Pancreatic Neuroendocrine Neoplasms

A spotlight on NENs, A spotlight on NENs - Types, Patient AdvocacyATRX, DAXX, Gastrinoma, Gastro-entero-pancreatic neuroendocrine tumour (GEP-NET), Genetics, Glucagonoma, Insulinoma, MEN1 syndrome, Neurofibromatosis type 1 (NF1), Pancreatic NEC, Pancreatic NET (PanNET), PPoma, Somatostatinoma, Tuberous sclerosis (TSC), VIPoma, Von Hippel-Lindau (VHL) Syndrome

DisclaimerThe information in this Spotlight is for general education only. It cannot replace advice from your own medical team, who know your individual situation, test results, and treatment options. Neuroendocrine Neoplasms and related conditions are complex and research is evolving; guidance, classifications, and statistics may change over time. Always discuss any questions or concerns with your specialist team before making decisions about tests, treatments, or monitoring. Pancreatic neuroendocrine neoplasms comprise Pancreatic NETs (well differentiated) and Pancreatic NEC (poorly differentiated) 1. What they are Pancreatic NENs arise anywhere in the head, neck, body, or tail of the pancreas and include: Well‑differentiated…

17 Apr 2026

By Ronny Allan

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Neuroendocrine Cancer in UK – a growing crisis?

Patient AdvocacyIncidence, NET Centre of Excellence, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Prevalence

I was delighted to read about the efforts of Dr Arthur Scott, a Member of the UK Parliament (MP). He is a great advocate for cancer patients and recently introduced a rare cancer bill in the UK Parliament which will hopefully make a difference. The content was very interesting and I was drawn to several parts of his submission. "The label of “rare” can often be a dangerous misnomer in our healthcare system" Firstly, the description of 'rare' as a 'dangerous misnomer' when applied to a cancer which is now more prevalent than better known cancers such as Stomach and…

12 Apr 2026

By Ronny Allan

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Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment

Patient Advocacy, TreatmentBisphosphonates, Bone metastases, Bone‑Targeted Agents (BTA), Denosumab, Zoledronic acid, Zometa

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…

07 Apr 2026

By Ronny Allan

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Neuroendocrine Tumours – Vitamin B3 (Niacin)

A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacyCarcinoid syndrome, Niacin, Pellagra, Peripheral Serotonin, Small intestine NET (SI NET), Tryptophan, Vitamin B3

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…

02 Apr 2026

By Ronny Allan

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March 2026 Newsletter from Ronny Allan

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Here is my monthly summary of March 2026 on RonnyAllan.NET This has been a very good month but to be honest, I had more time at home and on my computer, due to illness. OK I was not that ill that I could not tap away at a keyboard! However, it was pretty erratic access. I told the story of my illness in a blog post entitled "This too shall pass" which one reader (Dee from Brisbane in Australia described as "Hauntingly accurate". It contributed to almost 30,000 blog views in March 2026, the highest for some time.You will note blogs…

27 Mar 2026

By Ronny Allan

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Understanding Differentiation, Ki‑67, Mitotic Count, Hotspots, Pathology Workflow, and Primary–Metastasis Heterogeneity in Neuroendocrine Neoplasms (NENs)

Patient Advocacy, TreatmentDifferentiation, Heterogeneity, Ki-67, Mitotic count, Pathology, Pathology hotspots, Pathology workflow

Before you read this… This article discusses pathology concepts such as Ki-67, grading, heterogeneity, and biopsy findings in neuroendocrine tumours (NETs). It is provided for educational purposes only and does not interpret any individual pathology report or scan result. Ki-67 values, tumour grade, and sampling limitations can vary between different biopsies and over time. Their meaning depends on the full clinical context, including imaging, symptoms, and multidisciplinary review. Only your own specialist team can explain what your specific Ki-67, grade, or pathology findings mean for you. No treatment decisions should be made based on this article alone. Neuroendocrine Neoplasms (NENs)…

26 Mar 2026

By Ronny Allan

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Why liver transplant is back in the NET conversation

Patient Advocacy, TreatmentLiver metastases, Liver transplant, Well differentiated

Before you read this… This article is provided to support understanding of a complex and evolving topic. It explains how liver transplant is being explored in a very small number of NET patients, but it is not suggesting that this treatment is suitable for you or anyone else. Every NET case is unique. Only your own specialist team can assess your individual situation and advise on the options that may be appropriate for you. 1. Big picture: why liver transplant (LT) is back in the NET conversation Rationale: For a very small, highly selected subset of patients with unresectable liver-only…

23 Mar 2026

By Ronny Allan

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This too shall pass

Inspiration, Patient AdvocacyAdvanced neuroendocrine cancer

If you've heard that phrase before, you're not alone. The phrase is rooted in older Persian and Buddhist teachings, and widely accepted as a testament to the impermanence of all things. Many famous people have used this phrase including Abraham Lincoln, Tom Hanks, Robert De Niro and King Solomon. I've also seen various cancer bloggers use it many times. I've used it few times too, mainly for quick Facebook updates. This has been both an exciting year but also so far, a 'this too shall pass' moment in March. Exciting because I was on the holiday of a lifetime for…

21 Mar 2026

By Ronny Allan

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HRT and Neuroendocrine Tumours (NETs): What Patients Need to Know

Patient AdvocacyEstrogen, Functional tumour, Hormone dependent cancer, Hormone Replacement Therapy, Hormone therapy, Hormones, HRT, NET syndromes, Progesterone, Testosterone

Before you read this… This article discusses hormone replacement therapy (HRT) in the context of general health, menopause, and neuroendocrine tumours (NETs). It is provided for educational purposes only and does not recommend starting, stopping, or changing any form of HRT. The suitability of HRT depends on many individual factors, including tumour type, grade, hormone sensitivity, medical history, and personal risk–benefit considerations. These vary widely between people with NETs. Only your own specialist team can advise on whether HRT is appropriate for you. No treatment decisions should be made based on this article alone. Hormones and cancer often get…

19 Mar 2026

By Ronny Allan

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Blood Clot risks in Neuroendocrine Neoplasms (NENs)

Patient Advocacy, TreatmentBlood clot, Lung NETs, Pancreatic NET (PanNET), Pulmonary embolism, Small intestine NET (SI NET), Splanchnic Thrombosis, Venous thromboembolism (VTE)

I have a personal interest in this subject because I had pulmonary emboli (PE) diagnosed in January 2011 around 6 weeks after I had major surgery. I got a phone call from the hospital to go down that day and meet with a nurse who would teach me to self inject 'Clexane'(Enoxaparin) and then take away a stock which was to be issued in future via the normal prescription system. The PE soon cleared up shortly after being found but my Oncologist advised me to keep taking blood thinners to reduce risk. After many years of these daily injections, I…

17 Mar 2026

By Ronny Allan

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

A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacyFat malabsorption, Fat soluble vitamins, Vitamin D

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…

11 Mar 2026

By Ronny Allan

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Cancer: Words are important but so is context

Inspiration, Patient AdvocacyCancer surveillance, Prognosis

Words are very important to cancer patients, some people hang their hats on them and put their feet up, and some people google them until they are tied in a knot, still fraught with worry. Why can’t doctors just tell me in layman’s language? Easy answer ……. because it is not an exact science. Doctors are not robots (…… yet!), they are human beings just like us. Doctors have different views and they can have different interpretations of long standing terms ingrained in the annals of medicine. Some doctors have better patient communication. They don’t have crystal balls, but they…

01 Mar 2026

By Ronny Allan

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Newsletter covering January and February 2026

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer

Overview Many thanks for the support in January and February 2026. This is a double month newsletter due to my 27 day holiday! 2026 Blog Activity for January and February Actually, despite my holiday figures are pretty much normal. I had a great month in December 2025, perhaps I was overperforming as I was anticipating a quiet January and February - but January and then February seemed to continue the motion. It's interesting because December is normally my quietist month, followed by January! I'm particularly pleased with the growth of my main Facebook page Neuroendocrine Cancer over this period, perhaps…

27 Feb 2026

By Ronny Allan

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Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin)

A Spotlight on Vitamins & Minerals, Diet and Nutrition, Patient AdvocacyAtrophic gastritis, Autoimmune gastritis, B12 Cobalamin, Bile acid diarrhea, Diarrhea, Gastric NET, Lung NETs, Midgut, Pancreatic NET (PanNET), Pernicious anaemia, Right hemicolectomy, Small intestine bacterial overgrowth (SIBO), Small intestine NET (SI NET), Somatostatin analogues, Vitamin B12, Whipple procedure

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,…

13 Jan 2026

By Ronny Allan

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Next Generation Total-Body PET/CT: Challenges and Opportunities

Clinical Trials and Research, Patient Advocacy18F-FDG PET/CT, Explorer PET scan, Long-axial field-of-view (LAFOV), PET Scan, SSTR-PET

Long-axial field-of-view (LAFOV) systems have changed the field of molecular imaging. Since their introduction, many PET centres have installed these next-generation digital systems to provide more detailed imaging and acquire PET images in a single bed position. Indeed, vertex to thigh imaging for oncological indications can be obtained in most of the population with the currently available LAFOV systems. Moreover, Total Body (TB) PET, a subtype of LAFOV, enables imaging the entire patient—from vertex through the toes—with one bed-position for most of the population. This review aims to identify possible challenges and opportunities for PET-centres working with TB and LAFOV…

02 Jan 2026

By Ronny Allan

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Ronny Allan – a review of my blog activity December 2025

Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine cancer, Neuroendocrine carcinoma (NEC), Neuroendocrine tumour (NET)

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…

30 Dec 2025

By Ronny Allan

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A review of 2025 on RonnyAllan.NET

Awareness, Living with Neuroendocrine Cancer, Newsletters, Patient AdvocacyAdvanced neuroendocrine cancer, Neuroendocrine cancer, Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

Summary of 2025 from Ronny It was a good year for my advocacy work but a difficult year personally which had some impact on my advocacy work. I had to spend quite a bit of time looking after my brother's affairs when he was diagnosed with dementia and is now living in residential care. That took a lot of my free time away, not that I resent it, it's just one of those things you just have to do, despite the stress it entails. I also have a glitch on my website affecting iPhones which I'm slowly working through. …

24 Dec 2025

By Ronny Allan

8 Comments

15 years of Christmas!

Awareness, Inspiration, Patient Advocacy, Travel with RonnyAdvanced neuroendocrine cancer, Cancerversary, Prognosis

15 Christmas celebrations since diagnosis. A thankful statement My Facebook memories today are full of Christmas activities including my first Christmas following diagnosis of advanced Neuroendocrine Cancer. I had been out of hospital for only 4 weeks following major surgery in 2010. I remember the whole of my own family attended, my son and daughter's families and 3 grandsons (.... since diagnosis, I now have 4 💜). Since last Christmas, I celebrated my eldest Grandson's 21st birthday on 3rd Jan 2025, he was only 6 when I was diagnosed. I also enjoyed celebrating Chris's 70th birthday on 11th December 2024,…

17 Dec 2025

By Ronny Allan

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Another Next Generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac

Clinical Trials and Research, Patient Advocacy18F-FDG PET/CT, PET Scan, SSTR-PET

A Global first for NET. Omni 128cm Total Body PET at the Peter MacCallum Cancer Centre in Melbourne Australia. According to Professor Michael Hofman, they have been using the camera for a couple weeks and it is exceeding their expectations. They're running a short trial comparing results against regular PETs. The great news is that part of the trial will be a prospective sub-trial around dual FDG/ DOTATATE. In fact I now know that the first patient in the world to be scanned was a Pancreatic NET and you can watch a great video of this event below. What is…

14 Dec 2025

By Ronny Allan

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Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Metastatic Neuroendocrine Cancer

My diagnosis came with many strange words including, "carcinoid" and "neuroendocrine" ......... can you spell that please, I said to the doctor. I had a low ki67 figure from a tissue sample taken percutaneously from my liver, it seemed pretty good that I was only 5 in a range of 0-100 but somehow the word 'indolent' did not seem to match the long list of metastases including the mesentery, the liver, the retroperitoneal cavity, the armpit, the clavicle. If that was not enough, there was also a long list of secondary effects including but not limited to "mesenteric fibrosis", "retroperitoneal…

14 Dec 2025

By Ronny Allan

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Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, SurvivorshipAdvanced neuroendocrine cancer, Carcinoid syndrome, Fatigue, Invisible illness, Metastatic Neuroendocrine Cancer, NET syndromes, Neuroendocrine, Neuroendocrine tumour (NET)

Ronny Allan's 'PoNETry' © series can be shared with poetry credit to: RonnyAllan Thanks for reading Ronny I also have one about Lanreotide (or "butt darts" in general) - click here Click here and answer all questions to join my private Facebook group Check out my WEGO Health Awards Check out my Glossary of Terms - click here Please Share this post for Neuroendocrine Cancer awareness and to help another patient

07 Dec 2025

By Ronny Allan

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Neuroendocrine Tumours (NET) – hiding in plain sight – an awareness post from Ronny Allan

Awareness, Patient AdvocacyAdvanced neuroendocrine cancer, Carcinoid syndrome, Paraganglioma, Pheochromocytoma

When I was diagnosed, I didn’t even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment. It was hiding But it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor. And what would this doctor have said at the time? I was never misdiagnosed because I was never diagnosed with anything that wasn’t already there and documented.…

07 Dec 2025

By Ronny Allan

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Ronny Allan – just a wee Scottish guy with a computer

Awareness, Patient AdvocacyNeuroendocrine cancer

I was assessing performance of the awareness period in November 2025 on Facebook and was astonished to find the size of my reach on that platform. It appears I reached well over half a million people (572,700 to be exact) when adding up the performance of my 3 public Facebook pages (from left to right 16k, 3k and 8.5k followers). Clearly much of this performance was generated by people reading and sharing my work. But the most astonishing figures came from separating these views into followers (of my Facebook pages) and non-followers (a clear target for awareness). From the graphic…

28 Nov 2025

By Ronny Allan

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A sample of posts by Ronny Allan

Patient AdvocacyNeuroendocrine cancer

17 Nov 2025

By Ronny Allan

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Bone metastases in Neuroendocrine Tumours (NET) – Part 1

Patient AdvocacyAdvanced neuroendocrine cancer, Bone metastases, Lung NETs, Neuroendocrine carcinoma (NEC), Pancreatic NET (PanNET), Small intestine NET (SI NET)

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…

09 Nov 2025

By Ronny Allan

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It’s been 15 years since my “big surgery”

Awareness, Inspiration, Patient AdvocacyCarcinoid syndrome, Debulking surgery, Retroperitoneal Fibrosis, Small intestine NET (SI NET)

D Day I was 54 years and 9 months old at diagnosis on 26th July 2010. For the first few months, I had no idea what the outcome would be. What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me…

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

Awareness, Patient AdvocacyEpidemiology, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET)

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…

07 Nov 2025

By Ronny Allan

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Reframing Neuroendocrine Neoplasms Beyond “Rare”

Awareness, Patient AdvocacyEpidemiology, Neuroendocrine carcinoma (NEC), Neuroendocrine neoplasm (NEN), Neuroendocrine tumour (NET), Zebra

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…

Category: Patient Advocacy