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
- 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 - Piss off cancer – 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: Piss off cancer – 15 years of Christmas! - 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 - 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 - Piss off Cancer, 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: Piss off Cancer, 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”
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… Read more: Reframing Neuroendocrine Neoplasms Beyond “Rare” - Every stripe is lost awareness
Sincer 2015, my message has not changed. My message continues to be justified because since then, many important voices in the NEN community have repeated it! However, there has been, and still remains, some instransigence, although some of that has now buckled in the face… Read more: Every stripe is lost awareness - Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide
Scroll down to check out the doctors list just below Scroll down to also see information on “NET Aware” Dietitians. 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… Read more: Neuroendocrine Cancer? – Where to find a NET Centre/Specialist Worldwide
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