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
- Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)
Vitamin D deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) — but that does not automatically mean your deficiency is caused by your NET. Vitamin D deficiency is widespread in the general population, particularly in northern latitudes, older adults, and people with… 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)
Vitamin B12 deficiency is demonstrably more common in people with neuroendocrine tumours (NETs) – what that means is there is a chance your deficiency as a NET patients may not be related to your NET. However, it’s a fairly common comorbidity reported in NET patients… 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! - Another Next Generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac
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… Read more: Another Next Generation PET/CT is coming soon. The Omni 128cm Total Body PET – Small Australian trial at Peter Mac - Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it
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… Read more: Neuroendocrine Cancer: I hadn’t heard of it until I was diagnosed with it - Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness
Ronny Allan’s ‘PoNETry’ © series can be shared with poetry credit to: RonnyAllan.NET 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 Thanks for… Read more: Ronny Allan’s ‘PoNETry’ © – An Ode to Invisible Illness - Neuroendocrine Tumours (NET) – hiding in plain sight – an awareness post from Ronny Allan
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… Read more: Neuroendocrine Tumours (NET) – hiding in plain sight – an awareness post from Ronny Allan - Ronny Allan – just a wee Scottish guy with a computer
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… Read more: Ronny Allan – just a wee Scottish guy with a computer - Ronny Allan – a review of my blog activity November 2025
Here is the monthly summary of November 2025 on RonnyAllan.NET – Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. November is not a good month for me because I tend to think back to the… Read more: Ronny Allan – a review of my blog activity November 2025 - A sample of posts by Ronny Allan
Discover more from Ronny Allan – Living with Neuroendocrine Cancer Subscribe to get the latest posts sent to your email. Type your email… Subscribe - Bone metastases in Neuroendocrine Tumours (NET)
Many of you will know that I am a stage IV small intestine NET and I have one bone metastasis (BM) reported. The initial evidence of this BM came from my very first Ga68 PET scan. It said “there is intense focal uptake of tracer… Read more: Bone metastases in Neuroendocrine Tumours (NET) - MP0712 (212Pb x DLL3), Radio-DARPin – DLL3 Radioligand Therapy Trial for Neuroendocrine Neoplasms
What is Radioligand Therapy? When you browse the internet, you may see the term “Radioligand Therapy (RLT)” and wondered what it is. There’s a simple explanation to what it is; and why you may be seeing more of it. Firstly, you will all be aware… Read more: MP0712 (212Pb x DLL3), Radio-DARPin – DLL3 Radioligand Therapy Trial for Neuroendocrine Neoplasms - It’s been 15 years since my “big surgery”
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… Read more: It’s been 15 years since my “big surgery” - The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century
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… Read more: The Dethroning of Neuroendocrine Neoplasms as an Orphan Disease: US Incidence, Prevalence, and Survival in the 21st Century - Reframing Neuroendocrine Neoplasms Beyond “Rare”
Neuroendocrine neoplasms (NENs) have outgrown the “rare disease” label. e.g. Across the U.S., UK, and Australia, 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… Read more: Reframing Neuroendocrine Neoplasms Beyond “Rare”
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