Ronny Allan – Every picture tells a story
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),…
Neuroendocrine Cancer – tumour markers and hormone levels
Originally published 2016, updated October 2025BackgroundSome people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time. Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done as a…
Biopsies – tissue is the issue!
First published 19th July 2023. Major update on 6th August 2024 to including key marker and histopathological tissue biomarkers used in Neuroendocrine Neoplasms (NENs). My diagnostic background On 19th July 2010, I had a liver biopsy. This followed some low hemoglobin (Hb) and some weight loss reported to my GP surgery in May, I met with a specialist on 8th July and after sending me straight for a CT scan on the same day, the output from that CT confirmed something was drastically wrong. Clearly CT scans don't diagnose cancer inlcuding grade, so I eventually had to have a liver…
A Neuroendocrine Cancer diagnosis: I didn’t even feel ill
I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp…
“What are you doing this afternoon”
On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, in my head, I wasn't actually ill..... two months…
Other people get cancer, not me
I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight, I was fortunate to have had such a thorough bunch of physicians who diagnosed me with metastatic Neuroendocrine Cancer in about 6 weeks 'flash to bang'. I intentionally use a phrase associated with 'quick' because in the world of Neuroendocrine Cancer, 6 weeks is 'warp speed'.…
I woke up on World Neuroendocrine Cancer Day
1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery 15 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. …
A review of July 2023 on RonnyAllan.NET
On my website RonnyAllan.NET, July was a bit quieter mainly due to my holiday and other commitments. However, there was still significant support within and without the community. Below, I'll list the top performing blog posts in July, I can assure you there is some great information in there, and you may have missed some of my newest blogs which made it to the top 10. Number 1 is the story of US Representative Joaquin Castro, great diagnostic story and showing signs of being vocal about NET and the US healthcare system to a much wider audience - this is…
Neuroendocrine Cancer: diagnostic dilemmas in July 2010
Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010. I guess one of the reasons I do this is to be thankful that I'm still alive but also, I have a sneaking suspicion that I'm still trying to remember small detail from that period. It had felt surreal ever since 8th July when the secondary care investigating doctor sent me for a CT scan leading to a biopsy on 19th July. That scan and subsequent biopsy were to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just…
Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021
Background. For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors. There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes! Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com)…
Neuroendocrine Cancer: 48 hours before diagnosis
A week before my formal diagnosis, I had a liver biopsy (19th July 2010), and I repeat what I said in this post, for me it wasn't exactly a walk in the park. I had a mild anesthetic, I felt extremely uncomfortable throughout, and I was in pain. In fact, they did call in another nurse to help and her only job was to hold my hand in reassurance, (from what I remember). Most patients report no issues with their liver biopsy. I was sent home on 20th July with some painkillers, but that pain was gone within 24 hours.…
Don’t be cavalier with a cancer diagnosis
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told. In fact it happened on 24th July 2010, 10 years to the date this post was published. (Spoiler alert - I'm still here).I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy. I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill. In hindsight,…
Neuroendocrine Cancer – surveillance and follow up
Since 2010 I've had a lot of surveillance and testing. More than people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than me and I get more than others. It's not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system/guidelines, miscellaneous problems, therapy, and even age.In the first year or two after diagnosis, I seemed to be in a continuous testing phase but that was mainly due to seeing so many…
Cancer Isn’t All About Me
click picture to read "My Right-Hand Woman" Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is…
Endoscopy for NETs – taking the camera to the tumour
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom. The mouth route is more accurately called a Gastroscopy…
Innovation at Royal Free – Lung Biopsy and Radio Frequency Ablation Service
A team of radiologists and respiratory consultants who introduced a new and more efficient lung biopsy method at Barnet Hospital London, has been named the winner of the NHS Innovation Challenge Prize in the ‘cancer care’ category. Barnet Hospital is run by the Royal Free London NHS Foundation Trust which is well known for its Neuroendocrine Cancer Centre of Excellence. Not happy with this, they've now gone on to introduce a new service combining this innovative biopsy system with Radio Frequency Ablation (RFA) of tumours in the same procedure. Combined Biopsy with Radio Frequency Ablation (RFA) This new service has significant advantages…