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. […]
UPDATE AS AT 21 JAN 2023 – a leading US cancer organisation accepts that NETs are not rare I don’t like to gloat, but this post is heading for its 8th birthday. UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type. Several NET specialists in USA […]
Orginal post – 25th Nov 2014. The papers and social media seem to be full of awareness and early diagnosis articles this month. This coincided with World Neuroendocrine Cancer Day on 10 Nov and Pancreatic Cancer day on 13 Nov. Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of […]
Edit: This article was written in 2015. Since then, I have moved to 12-month surveillance periods. I also changed the title as we are all different. The article drew in a lot of non-NET people who were attracted by the original title. It did spread a little bit of awareness but I guess the dozens […]
We’ve all heard the age-old question about the chicken and the egg? Scientists claimed to have ‘cracked’ the riddle of whether the chicken or the egg came first. The answer, they say, is the chicken. Researchers found that the formation of egg shells relies on a protein found only in a chicken’s ovaries. Therefore, an […]
What happened to me? Since I was diagnosed in 2010, I’ve always known about a fibrosis issue in my retroperitoneal area. It was identified on the very first CT scan which triggered my diagnosis. Here’s how the radiologist described it – “There is a rind of abnormal tissue surrounding the aorta extending distally from below […]
A few years ago, I received a request from a reader asking if I could write an article listing all the symptoms experienced by a Neuroendocrine Cancer patient and how to sort out what is and what isn’t associated with NETs. Although I chuckled and raised an eyebrow at the request, inside I was genuinely […]
On the day I was diagnosed, I hadn’t really thought about questions, the only one I actually remember asking was “how long do I have left to live” (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on […]
An awareness post from Ronny Allan BEWARE There are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example – Neuroendocrine Cancer. Not only is it scary but it’s also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. […]
A satirical look at the acronym or abbreviation “NET”. I wrote this after I noticed many non-NET people reading my blogs. The acronym ‘NET‘ (NeuroEndocrine Tumour) can be advantageous to NET advocates and organisations because it occasionally attracts readership from outside the Cancer community when links are accidentally found by ‘surfers’. NET just also happens to be a common […]
If there’s a word which is synonymous with cancer, it’s chemotherapy. It’s what most people have in their mind when they are talking to a cancer patient…… ‘have you had chemotherapy‘ or ‘when do you start chemotherapy‘. I was nonchalantly asked by a friend some time ago ‘how did you get on with chemotherapy’ – […]
Neuroendocrine Cancer has certain unique features whereby tumours can produce one or more symptoms which are known collectively as a syndrome. Some doctors may refer to this as a functional tumour. Neuroendocrine Tumours secreting excess amounts of serotonin sufficiently to develop a syndrome currently called Carcinoid Syndrome, which if not diagnosed and treated early enough, […]
Apparently all Scotsmen wear kilts, have ginger hair, eat nothing but deep fried Mars Bars and they like a good fight! Stereotyping is frequently used to wind people up and can on occasion be used in an irrational or insulting manner. However, I believe one of those attributes is accurate. I was once ‘volunteered’ for boxing […]
I’m sat next to patients waiting on their chemotherapy treatment – the “Chemo Ward” sign above the door gives it away. I’m here for my 28-day cycle injection of Lanreotide which will hopefully keep my Neuroendocrine Tumours at bay. I look all around; the temporary beds and the waiting room are full and all I can […]
May 2024. a refurbish from some of my early work in 2015. I’m fairly sure not a lot has changed in surgery over the years. At the end of 2014, I was feeling pretty good celebrating 4 years since my first ‘big’ surgery in 2010. It prompted me to write an article Surgery – the gift […]
Here is the monthly summary of what we all achieved in April 2024. Something new, something blue and some borrowed too! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments. Every share spreads awareness and you potentially save someone’s life. One reason I am very thankful […]
“I’m only as good as my last scan”. I once received this comment in response to one of my posts. I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability […]
On 29th April 2014, I release my first post entitled “What’s it all about” i.e. why on earth am I writing a blog! It was simple in those days, I just wanted your money 🙂 I was fundraising as many diagnosed cancer patients and their supporters frequently do. In my own case, I was fundraising […]
I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual ‘spiel’. As sometimes happens, a listener queried me with the words “Neuroendocrine – what’s that?“. […]
But it works, I read it on the internet! “But it works… I read it on the internet!” You may remember my article entitled The trouble with the NET (Part 1) which was a lighthearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular […]
Update of one of my posts from 2015 which was interesting in that year. This is not really about a treatment which is available everywhere but was a novel approach by one of the world’s most gifted and innovative NET surgeons. Please note this is not a nutrition post! One of my daily alerts brought […]
Every day is a learning day in NET! When I was diagnosed in 2010, my Oncologist sent me for a specialist scan that would help confirm my staging definition and to document anything that might not have shown up on CT. This was described as an Octreotide Scan (somatostatin receptor scintigraphy) (now mostly replaced by […]
Edited and checked April 2024 One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a ‘standard of care’ or first-line treatment, unlike many other cancers. One exception is high grade (Grade 3) where it is very often a first and/or second-line therapy. This is particularly the case with […]
OPINION – There’s a constant debate regarding the validity of the term ‘Carcinoid‘. I’ve posted about this a few times and as far as I know, the debate has been raging for some years. This post was originally generated in April 2015 (and hasn’t changed that much!). EDIT MARCH 2024. There is now a consolidated Endocrine/Neuroendoceine […]
Graphic courtesy of SoBadAss.me (Sam Cleasby) In 2014, Chris and I walked 84 miles along Hadrian’s Wall on the English/Scottish border. It was a fantastic experience, and we met some really interesting people on our 6-day journey. On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I […]
OPINION When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook […]
Last year I wrote a series of articles on the ‘coping’ side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some […]
I first wrote this article in December 2014. My thoughts went back to my first surgery in 2010 when I was discharged 4 weeks before Christmas. I had been diagnosed with metastatic Neuroendocrine Cancer in July 2010 having been told it was incurable. However, with ‘debulking’ surgery, my Oncologist said my prognosis could be significantly […]
I’m still here 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, grading, and other damage that was accumulated via various tests, checks, and scans; […]
I’ve always had a ‘sweet tooth’ and the softer the sweet the better – toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts, ‘tablet’ and macaroon bars (both from Scotland), are all on my list of favourites. In terms of desserts, I love those too – ice cream, cheese cake, meringue, cake, sponge […]
Update 12th January 2024 FDA Grants Breakthrough Therapy Designation to AlphaMedix for Gastroenteropancreatic Neuroendocrine Tumors (Lung and other Non-GEPNETs – see author’s comments below) The FDA has granted breakthrough therapy designation to AlphaMedix (212Pb-DOTAMTATE) for the treatment of adult patients with unresectable or metastatic, progressive somatostatin receptor (SSTR)–expressing gastroenteropancreatic neuroendocrine tumors (GEP-NETs) who have […]
I’m thankful to the loyal supporters on my blog site and the other social media sites day and night (and I do note some doing both!). I really am very grateful. You know who you are – take a bow! Here is my monthly summary of what we all achieved in March 2024. Something new, […]
An essay by Jerry Crezick Jerry is a Pancreatic Neuroendocrine Tumor (NET) patient recovering after a Whipple operation carreid out early 2022. He soon realised he had a big challenge on his hands. Read his story of recovery helped by learning to surf! First posted in my private Facebook patient support group. Gerry kindly agreed […]
When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it’s because I was wildly naïve. […]
In 2002, I was reading a Sunday newspaper and found myself drawn to an article about hiking the 2000 year old Hadrian’s Wall. The walk along Hadrian’s Wall Path is an 84 mile (135 Km) National Trail stretching coast to coast across northern England, from Wallsend, Newcastle upon Tyne in the east to Bowness-on-Solway on […]
Edit 2024: One of my early posts was entitled “Four years on”. I guess I was starting to recognise ‘cancerversaries’, perhaps realising I might get throuh the ordeal, or at least for longer than I thought. 2014 was also the year I retired after working since the age of 16! My first task was to […]
OPINION. Sometimes when I’m searching for cancer information, I’m presented with a ‘picklist’ of types which mostly tend to be anatomy based. I do find it annoying when I cannot find my own cancer on the list …..some respectable organisations are just not as up to date as they should be! Neuroendocrine Cancer patients and advocates […]
Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases. In addition to the cancer angle, there’s some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing […]
Certain popular ideas about how cancer starts and spreads – though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and […]
See the Sycamore Gap section in the post Original posts 3rd June 2014. Well we did it! Chris and I finished our 84 mile Hadrian’s Wall challenge on Saturday 31 May 2014 around 1630 hours at Bowness-on-Solway. The final leg from Carlisle was listed as 14.5 miles but on our app it was more like […]
One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as […]
I met quite a few interesting people during my walk along the 2000 year old Hadrian’s Wall 10 years ago. On Day 3, Chris and I were accompanied by our friend Dave Taylor, we noticed a couple heading up the hill that we were progressing down. We also couldn’t help noticing the male of the […]
Reviewed and Updated 13th March 2024 One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the ‘benign vs malignant’ question. It’s been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ….. at least […]
– Updated 11th March 2024 – This section of my website has been published since 2015 but the most recent update to the World Health Organisation (WHO) Classification of Neuroendocrine Neoplasms is so significant, so gamechanging, that I have re-released the updated text. You may see these important publications called ‘Blue Books’. Words are very […]
It’s natural to feel low, worried or stressed when we’re unwell, and someone with a long-term condition is more likely to experience mental health issues. I once read an article where it suggested that up to 40% of cancer patients suffer from varying degrees of sub-clinical depression. Caring for your mind is when you have […]
It’s tough to keep up sometimes but I’m thankful to the loyal supporters who are on my blog site and the other sites day and night (and I do note some doing both!). I am very grateful. You know who you are – take a bow! Here is a summary of what we all achieved […]
Stage of cancer What is stage? The extent of a cancer in the body. Staging is usually based on the size of the tumour, whether lymph nodes contain cancer, and whether the cancer has spread from the original site to other parts of the body. What are the stage numbers? Most types of cancers have […]
Some might think this is an odd post for someone with a massive online patient group for cancer. Well, putting aside my disclaimers, group rules about ‘advice’ and the strong moderation approach, I totally agree with you (thus my approach to running a group). In the past, I have written about the dangers of advice […]
Context I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a catch all for both well differentiated Neuroendocrine Tumours (NET) and poorly differeniated Neuroendocrine Carcinomas (NEC). The latter is almost always an aggressive cancer and less common than its less aggresive NET relative […]
Histamine is mentioned a lot in both patient groups and in literature as somehow connected with NETs, particularly with so called carcinoid syndrome (CS). In fact, various putative mediators, including serotonin, catecholamines, brady- and tachykinins, kallikrein, histamine, motilin, and prostaglandins, have been suggested as potential causative factors for the symptoms and complications associated with CS […]
