01 Feb 2025
By Ronny Allan
0 Comments
A review of January 2025 from Ronny Allan

A review of January 2025 from Ronny Allan

Newsletters, Patient Advocacy,
Here is the monthly summary of January 2025 on RonnyAllan.NET The list of posts this month was totally unexpected! Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  The selection of top posts this month really shows the breadth of subjects applicable to Neuroendocrine Cancer that need to be considered.  Click on the each of the 10 posts to read. One reason I'm thankful is because I continue to interleave personal life via short motorhome breaks or other holidays/adventures and maintenance of my blog and other social media sites. I was distracted by…
Read More
28 Jan 2025
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Not all answers are black and white

Neuroendocrine Cancer: Not all answers are black and white

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect Series, ,
I get lots of questions. Some are direct to me by a messenger type app. Many are posed in my private group - these are normally always directed at the entire group but often I'm tagged in, a giant hint that I'm expected to reply. I don't mind too much but my answer is generally the same whichever scenario. Where I'm not tagged, I'm still happy to answer along with others in the same post. Sometimes I only comment as part of my moderating role in the group. In the early days, I would generally contribute to most posts but…
Read More
27 Jan 2025
By Ronny Allan
0 Comments
Ronny’s weekly update 20-26 January 2025

Ronny’s weekly update 20-26 January 2025

Newsletters, Patient Advocacy,
New or Republished Blog Posts this week https://ronnyallan.net/2025/01/26/theres-no-such-thing-as-a-tickbox-neuroendocrine-cancer-patient/ https://ronnyallan.net/2025/01/24/neuroendocrine-cancer-ga68-pet-scan-a-game-changer/ https://ronnyallan.net/2025/01/22/neuroendocrine-cancer-to-cut-or-not-to-cut/ https://ronnyallan.net/2025/01/21/neuroendocrine-cancer-my-liver-surgery/ https://ronnyallan.net/2025/01/18/every-picture-tells-a-story/ Page Neuroendocrine Cancer This is my biggest and oldest page, mostly generating blog posts for reading and sharing. Click on the icon above to browse this page. Click below to read a popular recent post. Click the graphic to read and share the post Page Ronny Allan This is a personal themed page but also posts blogs. Follow this page for my blogs and my travel plus personal NET related updates. I also use this page to admin and moderate inside my private Facebook group an oldie but…
Read More
26 Jan 2025
By Ronny Allan
5 Comments
There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

There’s no such thing as a ‘tickbox’ Neuroendocrine Cancer patient

Awareness, Patient Advocacy, , , ,
Thousands of people are diagnosed with cancer every day.  Many types of cancer have big patient populations due to the prevalence of diagnoses. They are so common that billions have been ploughed into research and care services.  Doctors are used to seeing lots of these patients and they have tried and tested treatments and care protocols. Many will come out of their treatments and be under surveillance for a period (normally 5 years but this differ with different cancer types) and then be declared in remission, or even cured. The problem with certain cancer symptoms is that they are not…
Read More
22 Jan 2025
By Ronny Allan
7 Comments
Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Surgery for Neuroendocrine Neoplasms – to cut or not to cut?

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , ,
Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me).  Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors.  If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…
Read More
18 Jan 2025
By Ronny Allan
0 Comments
Ronny Allan – Every picture tells a story

Ronny Allan – Every picture tells a story

Awareness, Clinical Trials and Research, Diet and Nutrition, Humour, Inspiration, Latest ENETS Guidelines, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", Spotlight on NENs - Types Series, Survivorship, The NET Effect Series, Travel with Ronny, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
I always try to use graphics for a number of pictures, I admit mainly to catch people's attention but also because sometimes a picture on its own tells a story or at least provides a great introduction to one. If the picture catches your eye, clicking on will take you to the text.  This post will auto update as new blogs are published. thanks for reading and sharing! Scroll, point, click, read, share! Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s),…
Read More
16 Jan 2025
By Ronny Allan
3 Comments
Neuroendocrine Cancer: Diagnosing the Undiagnosed

Neuroendocrine Cancer: Diagnosing the Undiagnosed

Patient Advocacy, , , , , , , , , , , , , , , , , ,
Neuroendocrine Cancer is one of a number of "difficult to diagnose" conditions. Many types of Neuroendocrine Cancer come with an associated syndrome and these syndromes can mimic everyday illnesses. In many cases, people don't even feel ill while the tumours grow. Most types of this cancer are slow-growing but there are also aggressive versions. Although things appear to be improving in diagnostic terms, it can sometimes take years for someone to be finally diagnosed correctly and get treatment, albeit in some cases, too late for any hope of a curative scenario. It's a very sneaky type of cancer and if…
Read More
10 Jan 2025
By Ronny Allan
7 Comments
Nick Robinson – Neuroendocrine Cancer – the devil is in the detail

Nick Robinson – Neuroendocrine Cancer – the devil is in the detail

Awareness, Patient Advocacy, Survivorship, , , , , ,
Originally published March 2015.  Updated 10th February 2025 Nick Robinson, well-known and ex-BBC Political Editor starts his new job today (16 Nov 15) on BBC Radio 4. He was until earlier this year, the most recognised political reporter face on UK TV, frequently stood outside 10 Downing St reporting on anything politics and at any time of the day. Nick is pretty good at painting politicians into a corner, trying to eek out what they really think, not the 'spin' which they are normally pretty good at. Like a lot of people, Nick's life changed when he was diagnosed with…
Read More
06 Jan 2025
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Watch and wait or watch and worry?

Neuroendocrine Cancer: Watch and wait or watch and worry?

Patient Advocacy, Survivorship, Treatment, ,
Watch and wait Not all cancers are the same. Not all Neuroendocrine Cancers are the same either! The technical term is heterogeneity and the term "Neuroendocrine Neoplasms are a group of heterogenous tumours" is commonly found in many texts. Some cancers grow quickly but many grow slowly, or even very slowly. When you are diagnosed with some types of cancer, you might not need treatment straight away. Doctors then monitor you with regular check ups and tests. They sometimes call this 'watch and wait'. Watch and wait means that you have cancer, but you do not need treatment straight away.…
Read More
01 Jan 2025
By Ronny Allan
0 Comments
A review of 2024 from Ronny Allan

A review of 2024 from Ronny Allan

Patient Advocacy, ,
ReviewBlog.  It was a funny old year in 2024.  New challenges prevented me from exploiting the increase in followers and views of 2022/2023 following the slight slump during the pandemic, coupled with the introduction of new Facebook algorithms which treated non-profits such as myself as businesses (clearly a tactic to  increase advertising revenue).  Personal challenges included some strange symptoms which I self diagnose as Hives (urticaria) for the first 6 months and the last two months of 2024.  This led to me to write two posts (Histamine The NET Effect and Hives (Urticaria) The NET EffectI still managed to push…
Read More
30 Dec 2024
By Ronny Allan
0 Comments
A review of December 2024 from Ronny Allan

A review of December 2024 from Ronny Allan

Patient Advocacy
From Ronny Allan. Here is the monthly summary of December 2024 on RonnyAllan.NET A quiet month due to holiday and grateful for those who continued to read and share my articles while I was absent. I wish I could do more but there's just little old me!  And Chris too of course for those following my exploits on Facebook Page Ronny Allan.  Fortunately I have a great 2IC and admin team in my private group, so that runs as normal. Firstly, I'll list the top 10 performing blog posts in December, I can assure you there is some great information in…
Read More
24 Dec 2024
By Ronny Allan
4 Comments
A Christmas 2024 message from Ronny

A Christmas 2024 message from Ronny

Patient Advocacy,
Background to 2024  I've only ever sent these on Facebook but since last year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter (X), Facebook, Newsletter or direct from a subscription to my website.  All of the outlets above have kept my viewing figures high, I guess I can't complain about a 2024 total of over 285,000 blog hits (so far), a figure higher than 2023.  I've had a lot of personal issues to deal with in 2024, including some strange health stuff, so I'm delighted this…
Read More
09 Dec 2024
By Ronny Allan
0 Comments
Lanreotide – 15 years – “if it ain’t broke, don’t fix it”

Lanreotide – 15 years – “if it ain’t broke, don’t fix it”

Patient Advocacy, Treatment
I first wrote this blog early in 2015 and I borrowed the term 'Four More Years' from the US presidential election campaigns, a big topic at that time.  At the time of writing I had just celebrated being on Lanreotide for 4 years (my first treatment was 9th December 2010). Curiously I was only asking for another 4 years but my blog title meant I was somewhat restricted in choice of timescale!  I posted the original below. I now find myself writing a follow-up post 11 years later.  Had someone asked me if I thought I would be repeating this…
Read More
03 Dec 2024
By Ronny Allan
0 Comments
Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Neuroendocrine Cancer: When you get years added to your life, it’s important to get life added to your years

Inspiration, Patient Advocacy, , , , ,
I'm not one for wallowing in self-pity or accepting invites to pity parties.  It's not my style. Things happen in life, and some are impossible to undo so I want to get on with my life in the best way possible. To some of you, that may sound harsh and insensitive, but I don't lack empathy for others (my advocacy work is a testament to that) and I'm constantly sympathising with others in my quest to help them via my blog, Facebook pages, and private Facebook group (see green box below) which is the biggest in the world because I'm…
Read More
01 Dec 2024
By Ronny Allan
23 Comments
Neuroendocrine Cancer – tumour markers and hormone levels

Neuroendocrine Cancer – tumour markers and hormone levels

A Spotlight on NENs - Testing Series, Patient Advocacy, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Originally published 2016, updated October 2025 Background Some people hear the terms "tumour markers" and "hormone levels" when they are diagnosed with Neuroendocrine Neoplasms (NENs). That might be confusing or even alarming at the time.  Most people diagnosed with cancer will have had a form of medical testing at some point in their life, i.e. the sampling and testing of blood, urine, saliva, stool or body tissue. With NENs, the medical staff are just measuring the content of a 'substance' and then taking a view whether this is normal or not based on pre-determined ranges. These tests are normally done…
Read More
29 Nov 2024
By Ronny Allan
7 Comments
It’s scary searching Cancer online

It’s scary searching Cancer online

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, , ,
When my diagnosing specialist suggested I had Neuroendocrine Cancer, he also told me not to go online whilst we awaited the results of the liver biopsy. I completely ignored that and went online! I very quickly discovered why he said that because the Neuroendocrine Cancer information online in 2010 was indeed scary, despite me being a very experienced user of computers and the internet; and despite me being to some extent, an information worker. It's not just knowing where to look, it's also about the interpretation and knowing what is current and what is out of date.  As a novice…
Read More
26 Nov 2024
By Ronny Allan
0 Comments
18 days in November 2010 – by Ronny Allan

18 days in November 2010 – by Ronny Allan

Inspiration, Patient Advocacy, Treatment, ,
I published this 14 years to the day I walked out of hospital holding the hand of my wife Chris. After a diagnosis of advanced Neuroendocrine Tumours on 26th July 2010, many things were lined up for me.  Some were on the critical path and had to be sequenced.  Many of them were pieces of evidence to support a treatment, which for many with advanced Neuroendocrine Tumours, offered the best hope for living longer - debulking surgery. People with very aggressive cancers at Stage IV may not be offered surgery, but one of the features of low grade metastatic NETs…
Read More
24 Nov 2024
By Ronny Allan
29 Comments
In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , ,
Originally published March 2017 OPINION.  Date of Article March 2017.  In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer.  Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear…
Read More
12 Nov 2024
By Ronny Allan
0 Comments
Living with Neuroendocrine Tumours – the 14 year itch

Living with Neuroendocrine Tumours – the 14 year itch

Diet and Nutrition, Patient Advocacy, Survivorship, The NET Effect Series, Treatment, ,
Following a diagnosis of metastatic small intestine NET in 2010, I wrote a blog in 2017 entitled "The 7 year itch".  I thought I would re-release it having reached 14 years and almost 7 years since it was published. When I wrote it, I was inferring a link between Lanreotide and my ongoing leg itching.  After some years, I also started to see correlations between itching and many other things including but not limited to the seasons of the year (i.e. it seemed to be worse in the winter).  As another example, I also noticed itchy skin could be caused…
Read More
10 Nov 2024
By Ronny Allan
0 Comments
I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Patient Advocacy, Treatment, , , , , ,
1 year after 2 x surgery - at a ball organised by my surgeon Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after surgery 14 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and…
Read More
09 Nov 2024
By Ronny Allan
0 Comments
Piss off Cancer, it’s been 14 years since my “big surgery”

Piss off Cancer, it’s been 14 years since my “big surgery”

Awareness, Inspiration, Patient Advocacy, , ,
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,…
Read More
08 Nov 2024
By Ronny Allan
0 Comments
Pancreatic cysts – something or nothing?

Pancreatic cysts – something or nothing?

Patient Advocacy, The NET Effect Series, , , ,
What are cysts? Cysts are sacs or capsules that form in the skin or inside the body. They may contain fluid or semisolid material. Although cysts can appear anywhere in the body, most frequently they live in the skin, ovaries, breasts or kidneys. Most cysts are not cancerous. What are pancreatic cysts? Pancreatic cystic lesions are being found more frequently on cross-sectional imaging studies (e.g. conventional imaging such as CT/MRI/Ultrasound). Although many of these cysts are discovered incidentally in asymptomatic patients, many have a malignant potential. Coupled with the lack of a single diagnostic test for accurate risk stratification and…
Read More
08 Nov 2024
By Ronny Allan
0 Comments
48 hours in November 2010 – Awareness and Hope from Ronny Allan

48 hours in November 2010 – Awareness and Hope from Ronny Allan

Awareness, Inspiration, Patient Advocacy, Survivorship, Treatment, , , ,
D Day  D for Diagnosis. 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…
Read More
07 Nov 2024
By Ronny Allan
0 Comments
Don’t miss these 5 posts on RonnyAllan.NET

Don’t miss these 5 posts on RonnyAllan.NET

Patient Advocacy
Just click on the pictues and read (and hopefully share!) https://ronnyallan.net/2024/07/18/neuroendocrine-cancer-is-not-a-type-of-another-cancer-period/ https://ronnyallan.net/2022/11/23/the-ecstasy-of-neuroendocrine-cancer-survivor-wilko-johnson/ https://ronnyallan.net/2018/03/16/namaste-irrfan-khan/ https://ronnyallan.net/2024/08/27/the-5-es/ https://ronnyallan.net/2017/06/08/living-with-neuroendocrine-cancer-8-tips-for-conquering-fear/ Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a…
Read More
27 Oct 2024
By Ronny Allan
0 Comments
I wish I had another cancer

I wish I had another cancer

Awareness, Inspiration, Patient Advocacy, ,
AN OPINION POST I’ve seen the term ‘Cancer Olympics’ many times on my social media travels, it’s been used in several contexts. For example, Dr Robin McGee uses it to describe her ordeal with late stage bowel cancer and judging by the cover of her book, the analogy is the hurdles she had to jump to get the right treatment (many of you will relate to that). Another example I see is the race to claim a cancer is somehow ‘worse’ than other cancers, i.e. ‘my cancer is far worse than yours’.  Ironically, although some cancers are almost certainly worse…
Read More
25 Oct 2024
By Ronny Allan
0 Comments
Rosacea – the NET Effect

Rosacea – the NET Effect

Patient Advocacy, The NET Effect Series, ,
Around 2001, I started noticing some issues on my nose, particularly around the creases, an issue I still experience today. It normally starts with a stinging feeling, an indication I'm about to experience some sort of inflammation. What eventually happens is something which looks like a 'whitehead' which I now know to be a 'pustule'. Sometimes there are multiples, and most are not normally bigger than 2mm, mostly smaller. These pustules nearly always disappear within a short period of time, normally after washing/showering, but they tend to leave reddish marks which eventually fade. Very infrequently, these pustules would appear on…
Read More
22 Oct 2024
By Ronny Allan
1 Comment
6 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)

6 things you should never say to someone diagnosed with a Neuroendocrine Tumour (NET)

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , ,
Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrassed, they don't understand the specific cancer, they don't understand the prognostics and are scared to ask more. News outlets and social media don't really help them get to grips with these situations, everyone is receiving chemotherapy and will therefore lose their hair and everyone is going to die right?   Wrong, the cancer story is changing.  Sure, many people do die of cancer, and that's heartbreakingly sad.  But today, many cancers are now treatable, many people survive, some even living with cancer like they would with a…
Read More
22 Oct 2024
By Ronny Allan
6 Comments
Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Neuroendocrine Tumour (NET) – don’t let it be a Crisis

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, 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…
Read More
05 Oct 2024
By Ronny Allan
0 Comments
Ronny Allan – Feedback, Recommendations and Reviews

Ronny Allan – Feedback, Recommendations and Reviews

Patient Advocacy
I'm so proud to receive many reviews from many healthcare and cancer organisations.  The ones below are featured and the list below that is a selection of patient received comments separate from my Facebook recommendations.  Too many to repeat here and I even survived some of them as they no longer exist. Dr Mark LewisDr Eric Liu Dr Julie Hallet - NET Surgeon Dr Heloisa Soares - to follow Other Feedback received Josh Pyle, Senior Marketing Director for WEGO Health and Co-Founder of River Otter Interactive Inc ... " It is hard to find the quality of content and mix…
Read More
04 Oct 2024
By Ronny Allan
0 Comments
Ronny Allan – Background to my Diagnosis and Treatment

Ronny Allan – Background to my Diagnosis and Treatment

Patient Advocacy
Ronny Allan - Diagnosis and Treatment - Neuroendocrine Cancer From diagnosis to start of treatment The build-up to my diagnosis was covered in this blog article (Diagnosis - I'm no longer in Control).  This chance scenario led to a set of routine blood rests which highlighted a low haemoglobin score.  It was low enough to be referred to a specialist with the initial diagnosis being Iron Deficiency Anaemia.  After a plethora of tests including bloods, CT scan, Ultrasound scan and a liver biopsy (Ki67 5+), metastatic Neuroendocrine Tumour (NET) at Grade 2 was confirmed. During the secondary care diagnostic investigation,…
Read More
03 Oct 2024
By Ronny Allan
5 Comments
A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on Grade 3 (High grade) Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, , , , , , , , , , , , , , , , , ,
Reviewed and updated 3rd July 2026 High Grade Neuroendocrine Neoplasms - the forgotten patient group? When reading articles in the mainstream media, found in medical publications; and even listening to doctors speak about my disease, it's clear that the focus is on the term "Neuroendocrine Tumours" or NET for short.  Many websites of advocate foundation organisations and specialist scientific organisations, all still use the term "NET" in their naming.  I too am guilty of having a large Facebook site falling into this category.  It's little wonder that those with high grade disease can often feel like the forgotten patient group. …
Read More
29 Sep 2024
By Ronny Allan
2 Comments
F*** you cancer, I’m still here!

F*** you cancer, I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
On 26 July 2010, had you said I'd be writing this 14 years later, I would have said no.I was diagnosed on 26th July 2010.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought.  10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think.  Think great doctors, better treatments, better guidelines and sprinkle some luck on top.  Some might say attitude helps but clearly scientific proof might be lacking…
Read More
24 Sep 2024
By Ronny Allan
0 Comments
Seriously, I’m not a zebra!

Seriously, I’m not a zebra!

Awareness, Patient Advocacy
One thing I've discovered when posting about this subject..... I'm not alone.  In fact, I was actually surprised how many people cannot abide the infatuation and borderline cultish adulation with black and white striped animal themed rubbish attached to everything they do (thus the cult tag).  It regularly emanates from certain parts (but thankfully not all) of the NET community, worryingly including certain doctors who should be focussed on Oncology, not Zoology. The main issue I have within the NET community is the 1940s thinking in the days when science and statistics were not advanced as they both are today.…
Read More
22 Sep 2024
By Ronny Allan
9 Comments
Don’t be underactive with your Thyroid surveillance

Don’t be underactive with your Thyroid surveillance

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , ,
From other posts, you'll be aware of the thyroid lesion (approx. 17 x 19mm) which I've been tracking since 2013. The surveillance included routine thyroid blood tests, mainly TSH, T3 and 4. I was out of range in TSH (elevated) but the T4 was at the lower end of the normal range.  On 20 March 2018, following an Endocrine appointment, I was put on a trial dose of 50mcg of Levothyroxine to counter the downwards trend in results indicating hypothyroidism, possibly due to the lesion. Levothyroxine is a thyroid hormone (thyroxine) replacement.  One month after taking these drugs, my thyroid…
Read More
21 Sep 2024
By Ronny Allan
0 Comments
Weekly Roundup 9th – 15th September 2024

Weekly Roundup 9th – 15th September 2024

Newsletters, Patient Advocacy
Weekly roundup 9th - 15th September 2024News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Latest Blog Posts My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group.  It follows that supporting my blog is also supporting those other outlets.  Click on the 4 blogs below published over this period. https://ronnyallan.net/2024/09/09/weekly-round-up-2nd-8th-september-2024/ https://ronnyallan.net/2024/09/10/ever-wonder-what-caused-your-neuroendocrine-cancer/ https://ronnyallan.net/2024/09/11/neuroendocrine-cancer-turn-surveillance-into-a-positive/ https://ronnyallan.net/2024/09/15/eat-that-doughnut/ Blog posts currently trending (last 48 hours) My Facebook Acivity Public Page…
Read More
19 Sep 2024
By Ronny Allan
1 Comment
The trouble with the NET is that it can spread ……. false hope

The trouble with the NET is that it can spread ……. false hope

Patient Advocacy, Ronny Allan's "The Trouble with the NET Series", , ,
Hope is great, false hope is not.  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 and how to treat it can lead to needless worry and even hinder good prevention and treatment decisions.  Even food and nutritional supplements fall into this area.  I see these things frequently in my own community, I don't like and I try my hardest to avoid these myths appearing…
Read More
15 Sep 2024
By Ronny Allan
2 Comments
Eat that doughnut!

Eat that doughnut!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy,
I was recently reminded of a post I wrote called "The Other 5 Es".  I later changed the name to "The 6 Es".  The reason I wrote that post was due to the blanket use of something called "The 5 Es of Carcinoid Syndrome" in my private group. Taking this out of context can lead to unnecessary worry and constraints for many. I laughed out loud when I saw the reminder from my Facebook where I introduced this new blog post and it simply read "Eat that doughnut".  What I didn't confirm was that I was using a metaphor i.e.…
Read More
11 Sep 2024
By Ronny Allan
0 Comments
Neuroendocrine Cancer: turn surveillance into a positive

Neuroendocrine Cancer: turn surveillance into a positive

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, ,
  It's hard to be positive when you don't know how you're doing. The only way to know how you're doing is to get professional surveillance. This is precisely why I see getting surveillance scans and other tests) as a positive. Even if something isn't quite right, at least you know, your doctors know, and they can watch it or do something about it. They simply can't do that if you're not getting surveillance. This is precisely why it's a positive thing, i.e. if you don't get it done, you don't know how you're doing - that is a more…
Read More
10 Sep 2024
By Ronny Allan
2 Comments
Ever wonder what caused your Neuroendocrine Cancer?

Ever wonder what caused your Neuroendocrine Cancer?

Patient Advocacy,
When you're diagnosed, you go through a whole host of emotions. It's not just the initial shock, the disbelief, the anxiety and morbid worry produced by the words "you have cancer", it's other stuff such as anger and denial.  With the latter, the denial normally wears off as you finally accept the predicament.  In hindsight, the anger is interesting because there can be a mixture of thoughts including "why me", "what could I have done to head this off"; and would you believe I was even angry that my diagnosis was going to affect my performance at work and even my…
Read More
09 Sep 2024
By Ronny Allan
0 Comments
Weekly round-up 2nd – 8th September 2024

Weekly round-up 2nd – 8th September 2024

Newsletters, Patient Advocacy,
Weekly round-up (2nd - 8th September 2024) News and views, collected in the last 7 days and may not have been published on my website or in individual blog posts. Taken from X (formerly twitter), Google alerts and Facebook. Blog Activity My award-winning blog is central to everything I do, without it, there is no Facebook, X (formerly twitter) or private support group.  It follows that supporting my blog is also supporting those other outlets. What's new between 2nd Sept and 8th Sept 2024? My 2024 experience with Hives but what were the likely cause(s) - read more here Invisible…
Read More
07 Sep 2024
By Ronny Allan
2 Comments
Don’t worry, it’s benign!

Don’t worry, it’s benign!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, , , , , , , , , , , , , , ,
One of the most controversial aspects of 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). This post will not cover Neuroendocrine Carcinoma which by standard cancer nomenclature definition is malignant. Any standard cancer nomenclature definition of the word…
Read More
06 Sep 2024
By Ronny Allan
11 Comments
Palliative Care – it might just save your life

Palliative Care – it might just save your life

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , ,
When you've been diagnosed with cancer at an incurable stage, certain words start to mean more. Take 'palliative' for example.  Before I was diagnosed, I had always associated the word 'palliative' with someone who had a terminal disease, and this type of care was to make the final days/weeks as comfortable as possible. So, it was a bit of a shock to find out in 2010 that my treatment was palliative in nature. However, I'm still not dead and I'm still receiving palliative care. Go figure! The answer is simple - the cancer story is changing. What was once feared…
Read More
05 Sep 2024
By Ronny Allan
0 Comments
Active Surveillance May Benefit Certain Patients With Small Nonfunctional Pancreatic NETs

Active Surveillance May Benefit Certain Patients With Small Nonfunctional Pancreatic NETs

Patient Advocacy, Treatment, , ,
Abstract. Results from a retrospective review demonstrated significant increases in the use of observation in patients with small nonfunctional pancreatic neuroendocrine tumors (NF-pNETs) from 2015 to 2020, as published in JAMA Surgery.  Researchers also found that patients seen at academic centers were more likely to undergo observation compared with those seen at nonacademic centers.Currently, experts are uncertain of the metastatic potential of NF-pNETs, and the potential morbidity linked with pancreatic surgery, as noted in the study. This may be associated with patients opting for surgery vs active surveillance, although recent guidelines endorse the use of active surveillance backed by retrospective data.The…
Read More
05 Sep 2024
By Ronny Allan
0 Comments
Neoadjuvant 177Lu-DOTATATE for non-functioning pancreatic neuroendocrine tumours (NEOLUPANET): multicentre phase II study

Neoadjuvant 177Lu-DOTATATE for non-functioning pancreatic neuroendocrine tumours (NEOLUPANET): multicentre phase II study

Patient Advocacy, Treatment,
Abstract. NEOLUPANET was a multicentre, single-arm, phase II trial, conducted between March 2020 and February 2023 at eight Italian institutions.  Patients- non-functioning pancreatic neuroendocrine tumours (NF-PanNETs) at high risk of recurrence, with positive uptake on 68Ga-labelled DOTA PET. They underwent neoadjuvant 177Lu-labelled DOTA0-octreotate (177Lu-DOTATATE) therapy followed by surgical resection at an acceptable complication rate, with no postoperative death. The majority of patients had a partial response without any progressive disease. Neoadjuvant means treatment given as a first step to shrink a tumour before the main treatment, which is usually surgery.  NF-PanNETs are more common than their functional counterparts. NF-PanNETs display…
Read More
04 Sep 2024
By Ronny Allan
0 Comments
Tolerability and outcomes of neuroendocrine tumors treated with PRRT and SBRT

Tolerability and outcomes of neuroendocrine tumors treated with PRRT and SBRT

Patient Advocacy, Treatment,
I've written about Peptide Receptor Radionuclide Therapy (PRRT) many times and also written summary of evidence of the use of Stereotactic Body Radiation Therapy (SBRT) in Neuroendocrine Neoplasms (NENs).  The latter is a type of external beam radiation therapy whereas the former is a totally different technique delivering radiation combined with somatostatin analogues via an intra-venous (IV) route.  Both have the same aim, to eradicate or reduce tumour bulk. SBRT is a 'next generation' type of External beam Radiation Therapy (EBRT) which as a treatment has been around for some time.  PRRT is relatively new.  EBRT in the form of SBRT…
Read More
04 Sep 2024
By Ronny Allan
4 Comments
Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Electronic Autoinjector for Somatuline® Autogel® / Somatuline® Depot (lanreotide)

Clinical Trials and Research, Patient Advocacy, Treatment, , , , , ,
Update 4th September 2024.  I have been informed by a third party and trusted source that this upgrade to Lanreotide Ipsen injection device which I published in 2022, will not happen. Apparently, the project announced in 2022 never really got off the ground.  My own guess is that Ipsen's business case expenditure was too much risk given the rise of the generic Lanreotide meds around the same time, i.e. the return of investment (ROI) would not be recouped.I do not understand why Ipsen did not offer a lower price to remain competitive in UK and elsewhere.  It makes me think that…
Read More
04 Sep 2024
By Ronny Allan
8 Comments
Serotonin – it’s a no-brainer!

Serotonin – it’s a no-brainer!

Patient Advocacy, , , , , , , , , , , , , , , ,
  Disclaimer I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional. Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by…
Read More
30 Aug 2024
By Ronny Allan
7 Comments
Neuroendocrine Cancer: I Can

Neuroendocrine Cancer: I Can

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , ,
Most people with an incurable Cancer will go through both good and bad periods.  I quite liked a quote by a fellow patient who described that as the 'ebb and flow' of living with cancer and said the flow would always return at some point.  I also liked a quote from a fellow blogger whose blog catchphrase is "Having a bad day shouldn't mean having a bad life". I don't like playing the victim so I'm just trying to make my new normal ..... normal!  And I make no apologies for my approach.  So, when I wrote my blog post "Living with…
Read More
29 Aug 2024
By Ronny Allan
20 Comments
Serotonin – the NET effect

Serotonin – the NET effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, The NET Effect Series, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
This blog provides general educational information only. It does not offer medical advice, diagnosis, or treatment. Patients should always consult their clinical team for personalised guidance. Background I'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Tumour (NET) patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to…
Read More
28 Aug 2024
By Ronny Allan
0 Comments
Let’s be clear about Neuroendocrine Tumours – it’s a cancer!

Let’s be clear about Neuroendocrine Tumours – it’s a cancer!

Awareness, Patient Advocacy, , , , , , ,
Dear Readers Another week and another discussion about 'benign vs malignant' in my group. Let's put that into context and dispel one big myth. I write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms. That is a 'catch-all' term for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC). Notwithstanding the fact that there is a Grade 3 NET nowadays, the former is often described as 'slow-growing or 'indolent' in behaviour and the latter is almost always faster growing and a more aggressive cancer. NEC is also frequently…
Read More