Did you hear the one about the constipated NET patient?

Did you hear the one about the constipated NET patient?

In my neck of the woods, "did you hear the one about the ........." is normally a precursor to a witty comment, or a joke.   However, constipation for NET patients is not actually funny - read on. Certain types of Neuroendocrine Cancer are very heavily associated with diarrhea, either as a symptom of one of the NET Syndromes (yes there is more than one .....); or as a result of surgery or certain other treatments.  Occasionally, these symptoms and side effects can all combine to make it quite a nasty and worrying side effect. I must admit to being surprised to…
Living with NETs – nobody said it was easy

Living with NETs – nobody said it was easy

I've been living with NETs since 26th July 2010....... since at least the earliest day I can use on clinical record. Clearly, I had been living with NETs before that, I just didn't know for how long and I never will - it no longer matters. The clues were there but why would I make a correlation to a disease I had never head of?I have no recollections of difficulties before diagnosis as I was cracking on with my successful post military career, doing OK, extremely busy (ignoring my health!). The symptoms of flushing were 6-9 months before diagnosis and…
“What are you doing this afternoon”

“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…
The 10 most read articles of all time on RonnyAllan.NET

The 10 most read articles of all time on RonnyAllan.NET

Welcome These 10 posts make up around 16% of the total views of over 700 posts.  I guess people like them!   But have you read them?  I shortlisted them here for your perusal. Enjoy! As of Sep 1st 2025. Click on the article blue bold text to read, and please feel free to share. Does not include the home page which is currently running at around 87,000 views. Neuroendocrine Cancer - normally slow but always sneaky - an awareness post from Ronny Allan with 65,433 views Neuroendocrine Cancer? - Where to find a NET Centre/Specialist Worldwide with 62,675 views The Classification,…
The 50 shades of Neuroendocrine Neoplasms

The 50 shades of Neuroendocrine Neoplasms

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are a group of heterogeneous tumours .............".  The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements.  This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy. And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only…
Phase 3 CABINET Clinical Trial – Cabozantinib (Cabometyx) for Advanced Neuroendocrine Tumours

Phase 3 CABINET Clinical Trial – Cabozantinib (Cabometyx) for Advanced Neuroendocrine Tumours

BREAKING NEWS - 6th August 2024 Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors.Exelixis Announces U.S. Food and Drug Administration (FDA) Accepted the Supplemental New Drug Application for Cabozantinib for Patients with Advanced Neuroendocrine Tumors– The FDA assigned a Prescription Drug User Fee Act target action date of April 3, 2025 –– Application is based on results from the phase 3 CABINET pivotal trial, in which cabozantinib provided a statistically significant and clinically meaningful improvement in progression-free survival versus placebo –Exelixis, Inc. (Nasdaq: EXEL) today announced that its…
A Review of June 2024 on RonnyAllan.NET

A Review of June 2024 on RonnyAllan.NET

Here is the monthly summary of what we all achieved in June 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.  One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. I was literally  on holiday for the enture month of June but still managed over 25,000 blog views. I wish I could do more but there's just little old me!  And Chris too of course…
Neuroendocrine Cancer: No one gets it until they get it!

Neuroendocrine Cancer: No one gets it until they get it!

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous group of cancers ranging from some quite indolent versions…
Neuroendocrine Cancer: the blue dot needs to be bigger, but it must be the right message

Neuroendocrine Cancer: the blue dot needs to be bigger, but it must be the right message

Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010.  But it should be further forward, much further forward.  In some areas, we appear to be going backwards. It's not where it should be because some people, some organisations, including some so-called advocacy organisations, at least one regional scientific organisation and some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message.  I respectfully suggest they stop it as I believe they are doing patients and NET awareness a disservice. A recent…
Neuroendocrine Cancer – were you irritated by your misdiagnosis?

Neuroendocrine Cancer – were you irritated by your misdiagnosis?

Look on any site about Neuroendocrine Tumours (NETs) and you'll find the term IBS (irritable bowel syndrome) frequently mentioned. That's because it's a common misdiagnosis for many before being formally diagnosed with NETs.  I see it mentioned on my site a lot, often by people who are quite irritated (pun intended) by a previous diagnosis which perhaps should have led to their actual diagnosis of NET. But what exactly is IBS, why is it such a common misdiagnosis for many NET patients and how can these misdiagnoses be prevented or reduced in future?  In preparation for writing this blog post, I…
Neuroendocrine Cancer: Those who know, know!

Neuroendocrine Cancer: Those who know, know!

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community.  Some 'get it' but many don't.  Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'.  Despite how hard I try, I can see that some of them just don't get it!  I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions…
Neuroendocrine Cancer – not average, just mean

Neuroendocrine Cancer – not average, just mean

Most people have perceptions of cancer in their heads, fairly fixed perceptions too. They think about all the stuff they see daily on TV, in the main press, and people they know. The big cancers set the scene. Most doctors know about big cancers. They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy. Many survivors will have side effects of their treatments, e.g. perhaps temporarily losing their hair. More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of…
Metastatic Neuroendocrine Tumours – Incurable but treatable

Metastatic Neuroendocrine Tumours – Incurable but treatable

Metastatic Neuroendocrine Tumours - incurable is not untreatable. When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able…
Neuroendocrine Cancer:  My experience with Lanreotide Ipsen

Neuroendocrine Cancer: My experience with Lanreotide Ipsen

On 9th December 2024, I celebrated 14 years of Lanreotide - click here to read about that. Update 11th Jan 2024.  Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen.  Clearly to distinguish its product from the generics now rolling out.  Not seen similar yet for Somatuline Depot (US). My Lanreotide Experience When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be commencing long-term monthly 'somatostatin analogue' treatment and had assumed Octreotide (Sandostatin LAR) would be the drug of choice. However, my Oncologist prescribed Lanreotide (known in the UK as…
Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

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 these cancer types.  These issues also made it to the conventional media outlets of newspapers, radio and television. Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of…
Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

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 the renal vessels. This measures up to 15mm in thickness".  Followed by a statement saying that it was "almost certainly malignant".  The second and third scans would go on to describe as "retroperitoneal fibrosis" and "a plaque-like substance".  Interestingly the fibrosis itself does not appear to…
Neuroendocrine Cancer: Beware But Be Aware

Neuroendocrine Cancer: Beware But Be Aware

An awareness post from Ronny Allan BEWAREThere 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.It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other places. It can be fiendishly small to avoid being seen.  Once it's established in the primary location (....or locations),…
“You must be doing OK, you’ve not had chemotherapy”

“You must be doing OK, you’ve not had chemotherapy”

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' - he was surprised to hear I hadn't had it despite my widespread disease.  Cue - lengthy explanation!  I wasn't annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of cytotoxic chemotherapy.  If you read any newspaper article about cancer,…
“You’re from Dundee – you must like fighting”

“You’re from Dundee – you must like fighting”

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 because my home town was Dundee!   Read on...Dundee was put on the boxing map in the late fifties/early sixties due to the legendary Dick McTaggart who won a Gold and Bronze medal in two separate Olympic Games (for Great Britain). Many new boxing clubs sprang…
Surgery for NETs – Chop Chop

Surgery for NETs – Chop Chop

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 that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other…
A Review of April 2024 on RonnyAllan.NET

A Review of April 2024 on RonnyAllan.NET

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 is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. I wish I could do more but there's just little old me!  And Chris too of course for those following my exploits on…
“An odd disposition of tumours” – less common metastases in Small Intestine and Pancreatic NETs

“An odd disposition of tumours” – less common metastases in Small Intestine and Pancreatic NETs

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 Somatostatin Receptor PET (SSTR PET) e.g. Ga68/Cu64).Lo and behold, the 3 day Octreotide scan lit up some odd places which seemed to be unconnected to my small intestine primary.  I was already stage IV due to the presence of liver metastases and this was an added…
Piss off cancer, it’s 13 years since my liver surgery!

Piss off cancer, it’s 13 years since my liver surgery!

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; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate.  It’s amazing to think something that would eventually kill me without intervention, didn’t have…
A Review of March 2024 on RonnyAllan.NET

A Review of March 2024 on RonnyAllan.NET

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, something blue and some borrowed too!  Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog…
Tick off that bucket list

Tick off that bucket list

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 the west coast.  It generally follows the line of Hadrian’s Wall, along the way passing through some of the most beautiful parts of northern England – from rolling fields and rugged moorland to the vibrant cities of Newcastle and Carlisle.   As someone interested in history,…
Four years on

Four years 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 walk the 84 miles of Hadrian's Wall. Then at year 5 (2015), I started the "I'm still here" series of posts and took it from there. Original Text from 26th July 2014.  On Saturday, I glanced at the calendar on my phone and recognised the date as…
So what next?

So what next?

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 16 miles. We headed straight to the only pub in the village for a celebratory pint!  Very happy to be finished :-)We had trained for 4 months for this challenge but it was tougher than we had imagined, particularly the effect on our feet.  That's not…
Neuroendocrine Tumours (NET) – benign vs malignant

Neuroendocrine Tumours (NET) – benign vs malignant

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 from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET…
Lower grade higher stage NETs – slow motion, chronic and indolent?

Lower grade higher stage NETs – slow motion, chronic and indolent?

ContextI 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 differentiated Neuroendocrine Carcinomas (NEC).  The latter is almost always an aggressive cancer and less common than its less aggressive NET relative (when Small Cell Lung Cancer is not included in the math).  That said, the higher grades of NET can also be quite aggressive but very often still with a better outlook than NEC. Well differentiated NETs, particularly at the lower end of the scale tend have a…
Do we need a new model for Carcinoid Crisis in NETs?

Do we need a new model for Carcinoid Crisis in NETs?

Update January 2024 Dr Rodney Pommier, a NET specialist surgeon in Oregon has been writing about the issue of carcinoid crisis for some years and has finally produced data which turns previous guidelines on their head. Clearly when it comes to (so called) carcinoid crisis, surgeons are at the sharp end of experience alongside their anaesthetist colleagues. The detail from the study sits behind a paywall but the conclusion is given and cited below. You can read the abstract here or click on the 'conclusion' section below. I again emphasise as I have done in the original publication of this…
Me and the other big C December 2023

Me and the other big C December 2023

When covid-19 first hit the scenes early 2020, it was a bit of a shock, a bit of a worry, but most people (including yours truly) thought it would be over in a few months.   So it was a bit of a shock when I tested positive in Dec 2023 shortly after getting back from a trip to London.  Strangely, Chris was not affected.  After I tested positive, we effectively isolated each other and took precautions.Back in 2020. we both had bad colds/flu in March 2020 but we will never find out if that was covid or not.  I wrote…
RonnyAllan.NET – a review of 2023

RonnyAllan.NET – a review of 2023

ReviewIn 2023, I managed to push beyond the 2022 totals, that was a major boost for me given December was a write off due to illnes. To be honest, I’m still flabbergasted by reaching one million views in 2018, and then reach 2 million in December 2020.  I'm a third of the way to 3 million at 1 Jan 2024. It just kinda happened, there wasn't a plan!  It's mindboggling.  I'm grateful for every single view though.2023 was a challenging year, mainly because the pandemic continues to have some latent impact on my social media including in terms of growth.  2020…
A review of December 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

A review of December 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

December is always quieter than other months for obovus reasions, although I do try to maintain normality. The month started well and then turned into an absolute disaster. A death in the family followed by my second Covid-19 infection and at the time of writing, although now testing negative, I am still strugging with what feels like a regular and lingering chest infection. I'm thankful to those who supported me througout December, some of which will no doubt appear below. I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites,…
There are no perfect answers about an imperfect cancer

There are no perfect answers about an imperfect cancer

If you read any authoritative source on this cancer, it will normally begin with "Neuroendocrine Neoplasms (NENs) are heterogeneous tumours .............".  The term heterogeneous means diverse in character or content; or a structure with dissimilar components or elements.  This is not surprising as these tumours are found in Neuroendocrine cells throughout the vast majority of the human anatomy.This represents a challenge for regular healthcare professionals but also for Neuroendocrine Neoplasm specialists who are answering many questions asked by patients and their loved ones on a daily basis.  I very much suspect this challenge is the same for many types of…
Piss off Cancer, it’s been 13 years since my “big surgery”

Piss off Cancer, it’s been 13 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 to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention,…
8th November 2010 – on the way to hospital for surgery, alert the crash team!

8th November 2010 – on the way to hospital for surgery, alert the crash team!

The Journey to the Hospital on 8th November didn’t go smoothly!I had to be admitted to hospital for my surgery on 8th Nov 2010, but the surgery was not taking place until 9th November.  The technical reason for that is explained further below. Not a good start, 13 years ago today, Chris was driving me to the hospital for my first surgery, the "my big surgery" as I call it. It was "debulking" i.e. get as much as possible. In the end, the liver was left for another day.I had been working since being diagnosed and was still sending work emails…
Neuroendocrine Cancer: Make time for your wellness

Neuroendocrine Cancer: Make time for your wellness

I’m sorry to hear that you have been diagnosed with Neuroendocrine Cancer. It’s normal to feel scared, angry, or sad when dealing with such a difficult situation. However, there are some ways to cope with these emotions and find some hope and optimism. Here are some tips that may help you think more positively during cancer:You could try to surround yourself with positive people and positive energy. Seek support from your friends, family, or a support group who can listen to you, encourage you, and even make you laugh. You can also read inspirational books, listen to uplifting music, or…
Neuroendocrine Tumors and Carcinoid Syndrome: Individualizing Treatment to Match the Tumor Burden and Symptoms

Neuroendocrine Tumors and Carcinoid Syndrome: Individualizing Treatment to Match the Tumor Burden and Symptoms

Another episode in the expert opinion series.  I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too.  Jonathan Strosberg MD from Moffitt Cancer Center FloridaJennifer Eads MD from University of Pennsylvania, Abramson Cancer CenterThorvadur R. Halfdanarson MD from Mayo RochesterThe discussion is centred on the following statement and questionSomatostatin analogues (SSAs) are a therapeutic mainstay for the treatment of neuroendocrine tumors (NETs) and carcinoid syndrome, but, when progression occurs, additional interventions are needed. Some of the novel strategies…
Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

I thought this series might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too.  Jonathan Strosberg MD from Moffitt Cancer Center FloridaJennifer Eads MD from University of Pennsylvania, Abramson Cancer CenterThorvadur R. Halfdanarson MD from Mayo RochesterThe discussion is centred on numerous scenarios, and I'll list them all below. What are some of the recent developments in the treatment of NETs and carcinoid syndrome, and what might be on the horizon?The first oneSomatostatin analogues (SSAs) are a therapeutic mainstay for the treatment…
Piss off cancer – I’m 68

Piss off cancer – I’m 68

I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. 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; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what…
No flushes please!

No flushes please!

Remastered 24th Oct 2023 Original Blog 6th Sep 2014 (but talking in public about my 2010 experiences). Despite people's expectations, diagnosing Cancer isn't a two-minute job. There is a whole host of stuff to consider, and medical staff clearly want to get it 100% correct in order to plan and manage the patient's treatment. I wrote a blog on 26 July "celebrating" 4 years since diagnosis - it's worth a read, check it out by clicking here. Continuing with the 'four years on' theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis.…
Neuroendocrine Cancer:  Question, Clarify, Confirm

Neuroendocrine Cancer: Question, Clarify, Confirm

One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not.  And I don't always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date. I attempted to pin this down in my much read "10 questions to ask your specialist"…
Passive patient or active advocate?

Passive patient or active advocate?

I've been researching Neuroendocrine Cancer for some time now.  Why do I do this?  Whilst I have a great medical team, I'd also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don't want to be a passive patient, I want to be an active advocate for my own health.  I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd). I actually enjoy researching neuroendocrine disease and I'd like to think it was all in one book somewhere - this…
A review of August 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

A review of August 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

On my website RonnyAllan.NET, August was as quiet as July but in the second half, I accelerated publication of some posts.  The month was also helped by the publication of a solid tumour clinical trial and the breaking news of the CABOZANITINIB trial for NETs (if you missed those see below).  I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. 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.  I am very grateful.Below,…
Is your glass half empty or half full?

Is your glass half empty or half full?

Most people have probably heard of the saying "is your glass half empty or half full".  If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way.  I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to…
Neuroendocrine Cancer – normally slow but don’t be tricked!

Neuroendocrine Cancer – normally slow but don’t be tricked!

An awareness post from Ronny Allan. There are a lot of scary diseases in this world but some of them are particularly sneaky.  One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you. Don't be fooled, it's the great pretender. It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other…
Living with an incurable cancer – does mind over matter help?

Living with an incurable cancer – does mind over matter help?

When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my own experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  This blog you are reading now was only ever intended to be a temporary supporting tool for that hike and its build up; but I was persuaded by good reviews and viewing numbers to keep it going. That suddenly made it more difficult!In my early blogs, there were several 'no go areas' which were either too complex or potentially…
The Cancer Legacy of Steve Jobs?

The Cancer Legacy of Steve Jobs?

Just about everyone knows who Steve Jobs is but not many people have heard of Reed Jobs.  Clearly a relative and is actually his son.  Now aged 31, he wants to get into the cancer business via a venture capitalist initiative.  The headline below looks great but it means cancer, not just Neuroendocrine Cancer (note the use of Steve Jobs' actual diagnosis).I first heard about this and switched off after the news article stated that Steve Jobs had Pancreatic Cancer. Don't get me wrong, I strongly believe that Pancreatic Cancer needs lots of attention and lots of funding and research. …
A review of July 2023 on RonnyAllan.NET

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…