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 fibrosis, “bulky chains of lymph nodes”. As if I didn’t have enough to write down, other suspicious areas were mentioned, lung nodules, thyroid nodules. My dictionary was growing at the speed of light and I even started to use the word “occluded” in my normal vocabulary!
How on earth had this lot gone unnoticed, particularly as this so called ‘indolent’ cancer was growing slowly over a number of years. Well, I had put on weight, don’t we all when we get older? I was not obese. Then there was that period of dark stool, cleared as nothing by a colonoscopy. Maybe I should have mentioned the explosive diarrhea sooner but it was sporadic, no regularity to it BUT it was unusual for me. Then the facial red look which made my face hot that I once described as feeling like pins and needles. That was far too odd, too inexplicable for a man; and it seemed not to be anything worth bothering busy doctors, it will soon pass. In any case, I was far too busy doing important things at work!
But then I lost some weight ……. and a switched on nurse gave me a blood test. BOOM! You can read my diagnostic story by clicking here.
In another iteration of this story – read this post here or click on the photo below.
Or pick a different graphic – read this post here or click on the photo below.
Check out some recent popular posts – see below
- An unmissable update from Ronny Allan covering April 2026
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… Read more: An unmissable update from Ronny Allan covering April 2026 - Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs)
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… Read more: Spotlight on Small intestine Neuroendocrine Neoplasms (siNENs) - A Spotlight on Pancreatic Neuroendocrine Neoplasms
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… Read more: A Spotlight on Pancreatic Neuroendocrine Neoplasms - Neuroendocrine Cancer in UK – a growing crisis?
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… Read more: Neuroendocrine Cancer in UK – a growing crisis? - Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment
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… Read more: Bone Metastases in Well‑Differentiated NETs – Part 2 – Treatment - Neuroendocrine Tumours – Vitamin B3 (Niacin)
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,… Read more: Neuroendocrine Tumours – Vitamin B3 (Niacin) - March 2026 Newsletter from Ronny Allan
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… Read more: March 2026 Newsletter from Ronny Allan - Understanding Differentiation, Ki‑67, Mitotic Count, Hotspots, Pathology Workflow, and Primary–Metastasis Heterogeneity in Neuroendocrine Neoplasms (NENs)
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… Read more: Understanding Differentiation, Ki‑67, Mitotic Count, Hotspots, Pathology Workflow, and Primary–Metastasis Heterogeneity in Neuroendocrine Neoplasms (NENs) - Why liver transplant is back in the NET conversation
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… Read more: Why liver transplant is back in the NET conversation - This too shall pass
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… Read more: This too shall pass - HRT and Neuroendocrine Tumours (NETs): What Patients Need to Know
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… Read more: HRT and Neuroendocrine Tumours (NETs): What Patients Need to Know - Blood Clot risks in Neuroendocrine Neoplasms (NENs)
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… Read more: Blood Clot risks in Neuroendocrine Neoplasms (NENs) - Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)
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,… Read more: Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol) - Cancer: Words are important but so is context
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… Read more: Cancer: Words are important but so is context - Newsletter covering January and February 2026
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… Read more: Newsletter covering January and February 2026 - Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin)
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,… Read more: Neuroendocrine Tumours (NET) – Vitamin B12 (Cobalamin) - Sometimes you gotta climb that bridge!
When I was a young lad, I didn’t seem to have a fear of heights, not that I got many chances to test it but a couple of things springs to mind. As a ‘feral youth’ I once climbed to the top of a factory… Read more: Sometimes you gotta climb that bridge! - 50 years of marriage – in sickness and in health
When I was diagnosed with metastatic Neuroendocrine Cancer in 2010, there’s a lot of milestones I doubted I would reach. One is today and I can now tick off another and be thankful for reaching it. I have been married to a kind and beautiful… Read more: 50 years of marriage – in sickness and in health - Zanzalintinib Versus Everolimus in Participants With Locally Advanced or Metastatic Neuroendocrine Tumors (STELLAR-311)
A Phase 2/3, Multicenter, Randomized Open-Label Study of Zanzalintinib vs Everolimus in Participants With Previously Treated, Unresectable, Locally Advanced or Metastatic Neuroendocrine Tumors. The primary purpose of this study is to assess the effectiveness of zanzalintinib compared to everolimus in participants with previously treated, unresectable, locally… Read more: Zanzalintinib Versus Everolimus in Participants With Locally Advanced or Metastatic Neuroendocrine Tumors (STELLAR-311) - Next Generation Total-Body PET/CT: Challenges and Opportunities
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… Read more: Next Generation Total-Body PET/CT: Challenges and Opportunities - Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumors and Other Somatostatin Receptor 2-Expressing Tumors
Crinetics Announces First Patient Dosed in Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumours and Other Somatostatin Receptor 2-Expressing Tumours Read the news – click here Clinical Trial Document – click here Limited to US (6 locations) (so far). CRN09682, a first‑in‑class… Read more: Phase 1/2 Trial Evaluating CRN09682 for the Treatment of Neuroendocrine Tumors and Other Somatostatin Receptor 2-Expressing Tumors - Ronny Allan – a review of my blog activity December 2025
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,… Read more: Ronny Allan – a review of my blog activity December 2025 - A review of 2025 on RonnyAllan.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… Read more: A review of 2025 on RonnyAllan.NET - 15 years of Christmas!
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… Read more: 15 years of Christmas!
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