31 Aug 2024
By Ronny Allan
0 Comments
A Review of August 2024 on RonnyAllan.NET

A Review of August 2024 on RonnyAllan.NET

Newsletters
Here is the monthly summary of what we all achieved in August 2024. Something new, something blue and some borrowed too!  The main headline is the announcment that my private facebook group now has 10,000 members.  This is further evidence that our cancer is not rare. 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. August was another 25,000 blog views towards a projected annual increase over 2023. I wish I could do even more but there's just little old me!  And…
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31 Aug 2024
By Ronny Allan
0 Comments
CAR-T clinical trials for Neuroendocrine Cancer (plus bonus section on CAR-NK)

CAR-T clinical trials for Neuroendocrine Cancer (plus bonus section on CAR-NK)

Clinical Trials and Research, , ,
Update 24th August 2026 "Chimeric Halts CAR T-cell Trial Enrolment, Shifts Approach" Chimeric Therapeutics has now stopped enrolment and dosing in the Phase 1 trial after side effects were observed at the highest dose level. The company will not continue developing this version of the CAR T-cell therapy but believes CDH17 remains a valid target and plans to pursue a new in vivo approach. So, what happens next?  Chimeric is now advancing a different approach: an in vivo delivery method for a CDH17-directed CAR T-cell therapy. Rather than modifying a patient’s T cells outside the body, as in the current trial,…
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25 Aug 2024
By Ronny Allan
0 Comments
Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?

Treatment, , , , , , , ,
Update 4th May 2026 - Ronny releases a Spotlight on Small Intestine NENs - click here to read Updated 12th April 2026.  New paper from known experts in NET surgery.  Definitely worth reading as it covers some areas which are considered controversial but very relevant to the situations than can arise in small intestine NET surgery. Recent 2026 paper from multiple experts across the world including but not  limited to Canada/UK/Europe/Mexico/Israel/USA "The current recommended approach for all patients with stage IV SI-NETs is for assessment by a multidisciplinary team with NET expertise, including a surgeon, and that strong consideration should…
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14 Aug 2024
By Ronny Allan
9 Comments
2024 Update from Ronny Allan: Reassuringly stable!

2024 Update from Ronny Allan: Reassuringly stable!

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, ,
In every surveillance session I’ve had since diagnosis, there was always something to report.  Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings).  However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me.  That sentence alone probably translates to “stable“. After a surveillance event in 2021, I was awarded the accolade of “reassuringly stable“, a status which I was happy to accept! In 2022, despite evidence of disease, I was stable!  In 2023, I was given the headline of "No evidence…
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13 Aug 2024
By Ronny Allan
10 Comments
I can see my invisible illness

I can see my invisible illness

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship,
As I ponder my annual surveillance this summer and wonder what will be discussed, I also think about how far I've travelled and what I have been able to do.  It's more than I thought I'd be able to do, I didn't expect to still be here. Often, I feel lucky.  Perhaps an odd thing to say when I'm living with Stage IV cancer.  But those cards were dealt in 2010, and I now play with a new deck where I do have some control over how those cards are played.  As long as it's not a flush! No pity…
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04 Aug 2024
By Ronny Allan
3 Comments
14 years since diagnosis, I’m still here

14 years since diagnosis, I’m still here

Awareness, Inspiration
I finally made 14 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris, my wife of 49 years.I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes, and…
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01 Aug 2024
By Ronny Allan
2 Comments
Neuroendocrine Cancer: Glossary of Terms

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Welcome to my Neuroendocrine Cancer terms and definitions list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer sites. How to use this list: 1. If your term begins with an A, see the list of As etc.  Ditto for B to Z.  Select your term from the list, the definition will show along with any of my blogs where that term is mentioned – this adds context. . 2. Numerical terms are also listed. Please note I’m constantly working on the repository to clean up all definitions, adding and removing links where necessary, and…
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31 Jul 2024
By Ronny Allan
0 Comments
A Review of July 2024 on RonnyAllan.NET

A Review of July 2024 on RonnyAllan.NET

Newsletters, Patient Advocacy
Here is the monthly summary of what we all achieved in July 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 July 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…
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30 Jul 2024
By Ronny Allan
2 Comments
Lanreotide for Lung NETs – SPINET Clinical Trial

Lanreotide for Lung NETs – SPINET Clinical Trial

Clinical Trials and Research, Treatment, , , , , , , , , , ,
Reviewed and updated 30th July 2024.  Phase III trial data update. Update 30th July 2024. This trial had a low particpation repsonse.  Experts cited the main reason was the increasing use of SSAs for Typical and Atypical Lung NETs in clinical practice; as such, patients were reluctant to enroll in this study, with the risk of receiving a placebo, when they could access the active treatment with a prescription. The above is unfortunate but perhaps the wording of some approvals caused confusion about scope. Together with pragmatic compassionate use in cliniclal practice this has perhaps had an adverse affect in…
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23 Jul 2024
By Ronny Allan
6 Comments
I’m not sick, I just have cancer

I’m not sick, I just have cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
Opinion. I receive many messages from people across the world. Recently, one person asked me if I saw myself as a sick person. I found it a really interesting question because someone with cancer must be sick, right? When I was diagnosed, I really didn’t feel unwell, not how I thought a Stage 4 cancer patient would feel and not even ill enough to consider myself a 'sick person'. Prior to that, I suppose like everyone else on the planet, I had normal day-to-day stuff come along but that always settled in days or weeks. But never enough to call…
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21 Jul 2024
By Ronny Allan
9 Comments
Neuroendocrine Cancer: The Perfect Storm

Neuroendocrine Cancer: The Perfect Storm

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , ,
The Perfect Storm of Neuroendocrine Cancer by Ronny Allan, featured by Neuroendocrine Cancer UK As featured by Neuroendocrine Cancer UK (formerly NET Patient Foundation) It's well known that Neuroendocrine Cancer can often be a very difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed.  I'm one of the lucky ones, even though I still ended up with distant metastases.  It does feel odd to say that having distant metastasis is lucky! I consider my diagnosis to have been incidental as they were not investigating cancer - I suspect that's…
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18 Jul 2024
By Ronny Allan
17 Comments
Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Neuroendocrine Cancer is not a ‘type’ of another Cancer ….. PERIOD!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , , ,
I first published this blog post after the dust settled on the media coverage of the death and funeral of Neuroendocrine Cancer patient Aretha Franklin.  I was saddened by the death of this icon of the music industry but more determined to speak out about the need for our community to review the strategy for how we explain the nomenclature of Neuroendocrine Cancer to outsiders including the media, and incredibly, including doctors. About 95% of the articles I read about Aretha Franklin stated she had Pancreatic Cancer. Only a few quoted her physician who clumsily said "Pancreatic Cancer of the…
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14 Jul 2024
By Ronny Allan
3 Comments
Poker Face or Cancer Card?

Poker Face or Cancer Card?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , ,
  Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me from getting on with whatever I needed to do. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defence it was…
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13 Jul 2024
By Ronny Allan
5 Comments
Road ahead closed – Bowel Obstructions

Road ahead closed – Bowel Obstructions

Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , ,
OK - we've gone through diagnosis; we've gone through treatment and now we need to live with the consequences of cancer and its treatment.  Not a day goes by when I don't feel some twinge or some minor pain, and I think 'what was that?'.  Fortunately, many things can just be day-to-day niggles or in my case, the perils of getting older! The natural tendency is to think your cancer is causing these things.... easy to say, but very often not easy to prove.  However, for Neuroendocrine Tumour (NET) patients who have had surgery, anything that seems like a bowel…
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11 Jul 2024
By Ronny Allan
22 Comments
Did you hear the one about the constipated NET patient?

Did you hear the one about the constipated NET patient?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , ,
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…
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10 Jul 2024
By Ronny Allan
1 Comment
Living with NETs – nobody said it was easy

Living with NETs – nobody said it was easy

Awareness, Patient Advocacy
I've been living with NETs since 26th July 2010 ....... well, 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 (and therefore ignoring my health!). The symptoms of flushing were…
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08 Jul 2024
By Ronny Allan
8 Comments
“What are you doing this afternoon”

“What are you doing this afternoon”

Awareness, Patient Advocacy, , , , , , , , , , , , , ,
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…
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03 Jul 2024
By Ronny Allan
0 Comments
The 10 most read articles of all time on RonnyAllan.NET

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

Awareness, Newsletters, Patient Advocacy
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,…
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03 Jul 2024
By Ronny Allan
1 Comment
The 50 shades of Neuroendocrine Neoplasms

The 50 shades of Neuroendocrine Neoplasms

Awareness, Patient Advocacy, , , , , , , , , , , , , , , , , , , ,
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…
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02 Jul 2024
By Ronny Allan
1 Comment
Phase 3 CABINET Clinical Trial – Cabozantinib (Cabometyx) for Advanced Neuroendocrine Tumours

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

Clinical Trials and Research, , , , , , , , , , , , , , , , , , , , , , , , , ,
Please note this drug was approved and is now covered in a new blog - click here Clinical Trial history retained below for reference purposes 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…
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01 Jul 2024
By Ronny Allan
0 Comments
A Review of June 2024 on RonnyAllan.NET

A Review of June 2024 on RonnyAllan.NET

Newsletters
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…
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01 Jul 2024
By Ronny Allan
4 Comments
Neuroendocrine Cancer: No one gets it until they get it!

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

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , , , ,
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…
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30 Jun 2024
By Ronny Allan
0 Comments
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

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , ,
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…
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27 Jun 2024
By Ronny Allan
9 Comments
Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

Neuroendocrine Cancer – were you irritated by your misdiagnosis of iBS?

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , , , , , , , ,
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…
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22 Jun 2024
By Ronny Allan
1 Comment
Neuroendocrine Cancer: Those who know, know!

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient Advocacy, , , , , , , , , ,
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…
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21 Jun 2024
By Ronny Allan
7 Comments
Neuroendocrine Cancer – not average, just mean

Neuroendocrine Cancer – not average, just mean

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , ,
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…
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17 Jun 2024
By Ronny Allan
23 Comments
Metastatic Neuroendocrine Tumours – Incurable but treatable

Metastatic Neuroendocrine Tumours – Incurable but treatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , ,
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 to live for a lot longer".  Fortunately, my wife…
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11 Jun 2024
By Ronny Allan
22 Comments
Neuroendocrine Cancer: My 15 year experience with Lanreotide Ipsen

Neuroendocrine Cancer: My 15 year experience with Lanreotide Ipsen

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , ,
On 9th December 2025, I celebrated 15 years of Lanreotide - click here to read about that. Update 12th May 2026.  I received injection number 200! Click here to read more. 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).  Please note the remainder of this blog covers Lanreotide Ipsen, generics are covered here.  My Lanreotide Experience When I was discharged from hospital following major surgery in Nov 2010, I knew I would shortly be…
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17 May 2024
By Ronny Allan
2 Comments
Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

Awareness, Patient Advocacy, , , , , ,
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…
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14 May 2024
By Ronny Allan
8 Comments
Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Neuroendocrine Cancer: Fibrosis – an unsolved mystery?

Living with Neuroendocrine Cancer, Treatment, , , , , , , , , , , , , , , , , , , , , , ,
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…
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11 May 2024
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Beware But Be Aware

Neuroendocrine Cancer: Beware But Be Aware

Awareness, , , , , , , , , , , , , ,
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),…
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07 May 2024
By Ronny Allan
16 Comments
“You must be doing OK, you’ve not had chemotherapy”

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

Awareness, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , , , , , , ,
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…
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04 May 2024
By Ronny Allan
3 Comments
“You’re from Dundee – you must like fighting”

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

Humour, Inspiration
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…
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02 May 2024
By Ronny Allan
10 Comments
Surgery for NETs – Chop Chop

Surgery for NETs – Chop Chop

Treatment, , , , , , , , , , ,
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…
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01 May 2024
By Ronny Allan
0 Comments
A Review of April 2024 on RonnyAllan.NET

A Review of April 2024 on RonnyAllan.NET

Newsletters, Patient Advocacy
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…
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22 Apr 2024
By Ronny Allan
0 Comments
“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

Clinical Trials and Research, Patient Advocacy, , , ,
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…
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14 Apr 2024
By Ronny Allan
0 Comments
Piss off cancer, it’s 13 years since my liver surgery!

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

Patient Advocacy, Survivorship, Treatment, , , , ,
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…
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01 Apr 2024
By Ronny Allan
0 Comments
A Review of March 2024 on RonnyAllan.NET

A Review of March 2024 on RonnyAllan.NET

Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship
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…
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26 Mar 2024
By Ronny Allan
2 Comments
Tick off that bucket list

Tick off that bucket list

Inspiration, Patient Advocacy
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,…
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25 Mar 2024
By Ronny Allan
3 Comments
Four years on

Four years on

Awareness, Inspiration, ,
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…
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19 Mar 2024
By Ronny Allan
2 Comments
So what next?

So what next?

Inspiration, Survivorship, Travel with Ronny,
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…
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16 Mar 2024
By Ronny Allan
20 Comments
Neuroendocrine Tumours (NET) – benign vs malignant

Neuroendocrine Tumours (NET) – benign vs malignant

Awareness, Patient Advocacy, , , , , , , , , , , , , , ,
Reviewed and Updated 14th March 2026 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…
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12 Feb 2024
By Ronny Allan
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Lower grade higher stage NETs – slow motion, chronic and indolent?

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

Awareness, Patient Advocacy, Survivorship, ,
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…
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29 Jan 2024
By Ronny Allan
4 Comments
Do we need a new model for Carcinoid Crisis in NETs?

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

Clinical Trials and Research, Treatment, , , , , , , ,
Update February 2026. Before you read this, please note: Why Practice Is Changing Faster Than the Guidelines Modern peri‑operative management for neuroendocrine tumours is evolving rapidly, and several factors explain why clinical practice in some expert centres has moved ahead of formal guidelines: 1. New evidence challenges long‑held assumptions Recent surgical series — most prominently from OHSU Portland USA — show that prophylactic octreotide does not reliably prevent carcinoid crisis and that crises behave more like distributive shock, responding better to vasopressors than to somatostatin analogues. This directly contradicts decades of dogma. 2. Guidelines update slowly by design Bodies such…
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02 Jan 2024
By Ronny Allan
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Me and the other big C December 2023

Me and the other big C December 2023

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, ,
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…
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01 Jan 2024
By Ronny Allan
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RonnyAllan.NET – a review of 2023

RonnyAllan.NET – a review of 2023

Newsletters
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…
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29 Dec 2023
By Ronny Allan
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A review of December 2023 on RonnyAllan.NET – Living with Neuroendocrine Cancer

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

Newsletters
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,…
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11 Dec 2023
By Ronny Allan
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Neuroendocrine Neoplasms – very often there are no perfect answers

Neuroendocrine Neoplasms – very often there are no perfect answers

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , ,
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…
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09 Nov 2023
By Ronny Allan
6 Comments
Piss off Cancer, it’s been 13 years since my “big surgery”

Piss off Cancer, it’s been 13 years since my “big surgery”

Awareness, Inspiration, , , , , , ,
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,…
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07 Nov 2023
By Ronny Allan
2 Comments
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!

Treatment, , , , ,
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…
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