03 Mar 2022
By Ronny Allan
0 Comments
A Spotlight on Lung Neuroendocrine Neoplasms

A Spotlight on Lung Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, , , , , , , , , , ,
Disclaimer:The information in this Spotlight is for general education and awareness. It does not replace personalised medical advice, diagnosis, or treatment.  Lung Neuroendocrine Neoplasms (NENs) are complex and highly variable, and individual cases may differ significantly from the patterns described here.  Always discuss your own situation, test results, and treatment options with your specialist team, including your thoracic, oncology, endocrine, or NET multidisciplinary team (MDT).  If you have concerns about symptoms, progression, or treatment decisions, please seek guidance from your clinical team without delay.   Big changes to be announced shortly ........ This 2026 updated spotlight summarises the latest understanding…
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20 Jan 2022
By Ronny Allan
3 Comments
External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

External Validation of a Clinical Score for Patients With Neuroendocrine Tumors Under Consideration for Peptide Receptor Radionuclide Therapy

Patient Advocacy, Treatment, , , , ,
Peptide Receptor Radionuclide Therapy (PRRT) has been around for a while and doctors are learning all the time about the most likely candidates. Selection of candidates and predictions on who will benefit most are still not an exact science (....and possibly never will be).  Neuroendocrine Neoplasms are a heterogenous grouping of cancers, and heterogeneity also includes (but is not limited to) age, stage, gender, functional/non-functional, and pre-existing condition constraints. All of this complicates the task of therapeutic decision-making and sequencing. The attached cohort study aims to bound the issue and describe a method of allocating a Clinical Score (CS) to…
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09 Jan 2022
By Ronny Allan
0 Comments
Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trial: Lutathera and ASTX727 in Neuroendocrine Tumours (LANTana)

Clinical Trials and Research, Patient Advocacy, Treatment, , , , ,
What is the aim of this clinical trial? The aim of this single location trial in Imperial College London is to determine whether pre-treatment with ASTX727 results in re-expression of SSTR2 in patients with metastatic NETs, using 68Ga-DOTA-TATE to image epigenetic modification of the SSTR2 locus allowing subsequent treatment with Lutathera(i.e. PRRT).  Patients entered into the study will receive ASTX727 orally up to 3 to 8 days prior to receiving Lutathera treatment. What is ASTX727? Oral Decitabine and Cedazuridine (ASTX727) is a DNA methyltransferase (DNMT) inhibitor currently being used in a trial to facilitate oral treatment of certain drugs for…
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03 Jan 2022
By Ronny Allan
0 Comments
Blog review and top 10 for 2021: RonnyAllan.NET

Blog review and top 10 for 2021: RonnyAllan.NET

Awareness, Clinical Trials and Research, Diet and Nutrition, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
I should be happy with over a quarter of a million views in 2021 but I'm not!  Like 2020, my figures are down on previous years as the pandemic seems to have changed viewing habits, not to mention my own bandwidth during this period. I created my private Facebook group not that long before the pandemic started, and I think that has been playing a part as huge chunks of my time has been taken up on that special project.  I also changed the nature and the type of posts on my "Ronny Allan" Facebook page, which led to fewer…
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05 Dec 2021
By Ronny Allan
5 Comments
Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Neuroendocrine Cancer Diarrhea- building the jigsaw: Bile Acid Malabsorption

Diet and Nutrition, Patient Advocacy, Treatment, , , , , , , , , , , , , ,
Updated to include a Mayo Clinical study in 2026.  Before progressing, I wanted to emphasise this is not necessarily the same type of malabsorption caused by exocrine pancreatic insufficiency (EPI) which can potentially lead to something known as steatorrhea (amongst other things) but it can produce the same effect.  Steatorrhea is different from bile acid issues and is more related to fatty acids. But it's another piece of the diarrhea jigsaw. Bile Acid Malabsorption (BAM) and Bile Acid Diarrhea (BAD) Post-surgical diarrhea is probably something to expect in the early days and after time, adjustments can be made to cater…
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23 Nov 2021
By Ronny Allan
3 Comments
Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”

Small Intestine Neuroendocrine Tumours: “No other cancer really looks like this”

Patient Advocacy, Treatment,
It's known that Neuroendocrine Cancer is quite different in many ways from other cancers, notwithstanding the misnomer term carcinoid which is thankfully being slowly moved out of terminology.  As a few examples:It's a wide spectrum heterogeneous cancer group with indolent isolated small tumours at one end all the way across to extremely aggressive metastatic cases at the other end.It's a cancer type that can be syndromically functional or non-functional to add to diagnostic and management challenges.It's a cancer that can appear almost anywhere in the human body.One of it's less well-known traits is the ability to produce multiple primary tumours. …
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20 Nov 2021
By Ronny Allan
2 Comments
20th November 2010 – feeling perkier

20th November 2010 – feeling perkier

Patient Advocacy, Survivorship, Treatment, , , , , , , , , ,
Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications.  At that point, I had been keeping my diagnosis within close family and friends and my manager at work.  People at work and my wider list of friends were probably wondering what was going on with me.  Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up.  To be honest, the first…
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17 Oct 2021
By Ronny Allan
0 Comments
In the land of small tumours, there is still a lot of work to do!

In the land of small tumours, there is still a lot of work to do!

Awareness, Clinical Trials and Research, Patient Advocacy, Treatment, ,
I like reading the words of Dr Mark Lewis, an Oncologist and a Neuroendocrine Tumour (NET) patient himself (with MEN1).  He always delivers with "enthusiastic vigour", a term he reduces to "brio" (which I had to google!). His article as usual sets a scene and he has form for looking back in the history of NETs. I'm sure he does this as it can often illustrate just how much clinical progress has been made since way back then. And that is the purpose of the recent article entitled "Continuing the Odyssey in the Land of Small Tumors".  He quotes from a…
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02 Oct 2021
By Ronny Allan
1 Comment
The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

The psychological impact of COVID-19 pandemic on patients with neuroendocrine tumors: Between resilience and vulnerability

Patient Advocacy, Survivorship, , ,
I see a lot of emotional and anxiety issues in my private group.  I guess cancer diagnoses are involved in much of it adding to the daily issues faced in the general population.  Fears for quality of life, fears of dying, fears for how dependents will manage. For the first few years, I myself thought I might not make it.  I once wrote an article to help people with perspective and some structure to approaching ways of dealing, this was backed up with videos from psychology and healthcare professionals who deal with cancer patients.  February 2020 - boom!  Add in a global…
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11 Sep 2021
By Ronny Allan
0 Comments
Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Neuroendocrine Tumors: Targeted Therapies – Update from NET Specialist Diane Reidy-Lagunes, MD, Memorial Sloan-Kettering Cancer Center – August 2021

Clinical Trials and Research, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Background.  For those who want a quick run through of Neuroendocrine Tumors from diagnosis to selection of treatment, about the treatments themselves plus what is the Future Directions in the Management of Neuroendocrine Tumors.  There are 8 episodes, and each is around 3-5 minutes long. I personally found them very useful and in a language understandable to patients. Great job by OncLive and Dr Reidy-Lagunes!  Episode 1 - Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors Diane Reidy-Lagunes, MD, provides an overview of neuroendocrine tumors, along with specific considerations for optimal diagnosis and prognostication. Understanding the Diagnosis and Prognosis of Neuroendocrine Tumors (onclive.com)…
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09 Sep 2021
By Ronny Allan
6 Comments
UK Travel Insurance – please give cancer patients a break!

UK Travel Insurance – please give cancer patients a break!

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Travel with Ronny
Updated and reviewed 20th February 2026 - UK travel insurance - opinion.  FOR UNITED KINGDOM (UK) NEUROENDOCRINE CANCER PATIENTS but some of my findings are potentially applicable in other countries although there will be different insurance underwriting rules for cancer patients.  One thing is common, cancer patients present risk, and increased risk is normally more expensive in the insurance business. Nothing in this article should be interpreted as a recommendation to travel or use any company or service mentioned.  This is based entirely on my own experience and decisions.  I also declare no interest in any of the companies listed,…
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02 Sep 2021
By Ronny Allan
6 Comments
In the early days, I thought I was going to die

In the early days, I thought I was going to die

Inspiration, Patient Advocacy, Survivorship, , , , , , ,
Opinion.  It can be extremely hard to face a diagnosis of cancer and with that, an uncertain future. After treatment, there's worry about the cancer growing or coming back after a period of stability.   BUT there is also the thought of dying of cancer.  I think as you get older, you tend to begin to accept death is inevitable, or at least that is how I feel today, aged 65.  I was diagnosed at the age of 54 which I guess in cancer terms, is still relatively young. I also suspect this fear must be multiplied in a much younger…
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08 Aug 2021
By Ronny Allan
1 Comment
Cancer-related fatigue (CRF) – The NET Effect

Cancer-related fatigue (CRF) – The NET Effect

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, The NET Effect Series, , , , , , , , , ,
In my patient support group of almost 10,000+, fatigue is very commonly discussed, and it certainly gets bags of empathy from the readers.  I remember being really tired in the first few years after my diagnosis and in the years preceding it. As I was very focused on my work in those days, I was putting it down to the rigours of my working practices, commuting, overnighting, and working far too many hours in a day.  In 2010, my diagnosis was triggered by symptoms of iron deficiency anaemia which was almost certainly connected to my cancer and feelings of fatigue for…
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04 Aug 2021
By Ronny Allan
8 Comments
Let’s Talk About NETs (#LetsTalkAboutNETs)

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , ,
I do a lot of writing about NETs but I guess I've also done some talking too.  Some of these talks to patient groups and healthcare professionals were recorded and I have access to those recordings.  Others were not recorded but where possible and I am authorised to do so, I will attach the presentation slides.  Please note videos, presentation slides, and any Podcasts are in English.  I'll list some of them below for your perusal.  Some talks were not recorded and/or permitted to be shared.  These include (but are not limited to) a presentation to 'Global' Ipsen in Paris, UK…
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26 Jul 2021
By Ronny Allan
7 Comments
11 years – I’m still here!

11 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship, , , , , ,
I finally made 11 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.  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 settled in my liver and beyond including, strangely, in…
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12 Jul 2021
By Ronny Allan
3 Comments
The Hole

The Hole

Inspiration, Patient Advocacy,
A person with Neuroendocrine Cancer fell into a hole and couldn’t get out. As a colleague walked by, the person called out for help, but the colleague yelled back, "Suck it up, dig deep and get on with it" then threw the person a shovel. The person accepted that advice and dug that hole deeper. A manager went by, and the person called out for help again. The manager shouted down "Use the tools your colleague has given you", but then threw down a bucket adding to the tools available. The person used the tools to dig the hole deeper…
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13 Feb 2021
By Ronny Allan
0 Comments
Neuroendocrine Cancer: Follow up tests and checks

Neuroendocrine Cancer: Follow up tests and checks

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
Since 2010 I’ve had a lot of surveillance and testing. More than ordinary people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than I do and some get less. It’s not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system, miscellaneous problems, therapy, and even age.I have metastatic small intestine NET.  In the first year or two after diagnosis, I seemed to be in an almost continuous testing phase but that…
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04 Jan 2021
By Ronny Allan
0 Comments
The Invisibility of Appendiceal and Colorectal NETs – do the math

The Invisibility of Appendiceal and Colorectal NETs – do the math

Patient Advocacy, , , , , , , , ,
Do the math not the myth In addition to my mountain of evidence against the so-called rarity of Neuroendocrine Neoplasms, a new study from US indicates that many NETs are hidden among colorectal cancer cases in cancer registries. The study reported extraordinary figures of NET cases found when analysing the data.  For years, doctors have been warning about the increasing incidence of colorectal cancer amongst younger people. For that reason, the American Cancer Society recommended people to start screening at a younger age (45 years instead of 50 years) in 2018. This would affect 22 million Americans who now are…
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23 Dec 2020
By Ronny Allan
2 Comments
Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Genome methylation accurately predicts neuroendocrine tumor origin – finding Neuroendocrine Neoplasms of unknown primary

Clinical Trials and Research, Patient Advocacy, , , , , , , ,
It's estimated that around 5-10% of Neuroendocrine Neoplasms (NENs) have an unknown primary - what that means is cancer cells have been found in the body but the place cancer began remains unknown.  I wrote about this issue in more depth in my article "Needle in a haystack" - you can read that here.  In that article, you will note that NET specialists through their knowledge and understanding of the behaviour of these comped tumours, can often drill down and gather various pieces of evidence to help narrow down the primary location. However, this new study would indicate they could…
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13 Dec 2020
By Ronny Allan
2 Comments
Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Selecting patients and the Challenges of Evaluating Response to PRRT in GEPNETs: The Present and the Future

Clinical Trials and Research, Patient Advocacy, Treatment, , , , , , , , , , , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Fascinating article from the Italian NET scientific community.  This article is more than just what the title says, it provides overviews on many facets of NETs including markers, scans and PRRT itself. It covers how to select patients for PRRT in the first place, i.e. who is most likely to get a good response to this treatment and then look at how to track and assess that response. The important thing I gathered from reading is that none of this…
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01 Dec 2020
By Ronny Allan
15 Comments
2 Million!

2 Million!

Awareness, General, Humour, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
Today, 27th October 2022, I can confirm the 2 million views milestone has been reached. I was totally astonished to have been able to accumulate a million views of my blog around the middle of June 2019 and in December 2020, a Christmas present of one and a half million!  Fast forward to November 2021 and it's one and three-quarters million.That is THANKS to you guys for reading and sharing. When I first set up this blog in Apr 2014, it was just to help spread awareness (and collect a few pennies) whilst I was walking the 84 miles of Hadrian's Wall…
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10 Sep 2020
By Ronny Allan
4 Comments
“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

“I’m vertical” – Steve Jobs announces to Apple staff after a liver transplant

Patient Advocacy, ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email A lot had been written about Steve Jobs, some good, some bad, some inaccurate - the latter is mostly about the cancer he had.  I came across this clip published by an Apple Mac publication and it contained a video of Steve the day he returned to Apple after having a liver transplant and had recovered from the procedure.  In it he said "I'm vertical" in classic Jobs language and positive outlook.  Watch the clip here:https://youtu.be/BNv2lH225Ko The article is a…
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02 Sep 2020
By Ronny Allan
0 Comments
1.4 million thanks!

1.4 million thanks!

Awareness, Patient Advocacy
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Just registered the 1,400,000th view of my blog site.  So grateful for the support!Last 12 posts going back to 28th June - feel free to read and share.  Each one has a share button for Facebook, Twitter, Pinterest, WhatsApp and Email (as has the entire post).You can also catch up on other points of interest and some of my lockdown activities on my Facebook pages Ronny Allan and Neuroendocrine CancerMany thanksRonny
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28 Jul 2020
By Ronny Allan
3 Comments
Paraneoplastic Syndromes – the NET Effect

Paraneoplastic Syndromes – the NET Effect

Patient Advocacy, Survivorship, The NET Effect Series, , , , , , , ,
Although several hypotheses have been proposed regarding the pathogenesis of Paraneoplastic Syndromes (PNS), the precise mechanism that leads to the development of PNS remains largely unknown. In simple terms, pathogenesis means "the manner of development of a disease". Disclaimer. I read widely and noted various papers where there was clearly confusion about the classification of paraneoplastic in relation to Neuroendocrine Neoplasms.  Some papers grouped known Neuroendocrine Tumour hormonal syndromes in, but others were more specific by filtering these into ectopic scenarios.  I eventually filtered out papers based on the expertise of the authors and the common threads running in each…
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18 Jun 2020
By Ronny Allan
1 Comment
My interview with ITM – I’m still here!

My interview with ITM – I’m still here!

Awareness, Clinical Trials and Research, Patient Advocacy, , , ,
I was delighted to be contacted by ITM AG, a Germany based pharmaceutical company specialising in targeted radionuclide technology in precision oncology (e.g. Peptide Receptor Radionuclide Therapy - PRRT).  The company is formally known as  ITM Isotopen Technologien München. One of their pipeline developments is 177Lu-Edotreotide in patients with neuroendocrine tumours of gastroenteric or pancreatic origin (GEP-NET).  The development is via the COMPETE Phase III Clinical Trial which is being conducted worldwide in 11 countries at 33 sites and is open for recruitment.  I actually wrote about this trial after attending a workshop at the annual ENETS conference in 2018.…
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26 Mar 2020
By Ronny Allan
8 Comments
My Self Isolation Diary – COVID-19 2020

My Self Isolation Diary – COVID-19 2020

Inspiration, Patient Advocacy
COVID-19 reminds me of some of the issues with Neuroendocrine Cancer e.g. is this a normal day to day cold/flu/chest issue or is it COVID-19?  At least COVID-19 is the number one awareness topic in the universe, so people are very very aware.  Just as well because it has the potential to kill hundreds of thousands, perhaps millions of people.  It's only right that cancer patients take strict precautions because they should all at least be considered as an 'at risk' category, and many will be on their national 'most vulnerable' lists.So, when I started to cough and wheeze on…
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21 Mar 2020
By Ronny Allan
2 Comments
COVID-19 and Cancer Treatment and Surveillance

COVID-19 and Cancer Treatment and Surveillance

Patient Advocacy, Treatment, ,
This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date.  For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance. NEW CONTENT added 14th June 2020.For US patients - see the recently produced NANETS guidelines which provides guidance on the following:How is treatment for patients with NET/NECs likely to change during the COVID-19 outbreak?What should providers do to prepare their clinic for patients?Should octreotide or lanreotide be delayed or…
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13 Mar 2020
By Ronny Allan
1 Comment
Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Why Coronavirus Anxiety is Hard to Control – a Neuroendocrine Cancer patient perspective

Patient Advocacy, Survivorship, , ,
OPINION. I guess many people are feeling pretty scared right now.  Add age, a chronic disease, cancer, a lung illness or any condition that has a level of immunosuppression, and it seems to become even more scarier when you read the news.  I think the 'not knowing' how this crisis is going to pan out has made the situation quite surreal.  We seem to have gone from a fairly routine day to day living, thinking coronavirus is something that happens in another faraway country and then BANG, it's on our doorstep.  I don't know about you but I would hate…
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09 Mar 2020
By Ronny Allan
5 Comments
Coronavirus 19 (COVID-19): risks for cancer patients

Coronavirus 19 (COVID-19): risks for cancer patients

Patient Advocacy, Survivorship, , ,
This post was generated at the height of the pandemic and is not medical advice, moreover, it should not be considered up to date.  For the latest information for your cancer in regard COVID RISKS and VACCINES, please speak directly to your specialist doctor or follow your national health organisation’s guidance.UPDATED 22 Apr 2020 - COVID-19 and MEN patients. See article 7 below.UPDATED 5 Apr 2020 - excellent video meeting between Elyse from NET Research Foundation and Dr Mark Lewis. Dr Lewis is an Oncologist and also a NET patient so he speaks with both aspects in mind. See article…
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05 Jan 2020
By Ronny Allan
0 Comments
Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Featuring Kirsty Dalglish – Pheochromocytoma and Pregnancy

Inspiration, Patient Advocacy
This story is about my friend Kirsty. She lives with metastatic Pheochromocytoma, a type of Neuroendocrine Tumour (NET) of the adrenal glands - (read more here). She has an amazing blog that is not just for Pheochromocytomas or even just for Neuroendocrine Cancer patients and supporters because she has not let her condition stop her from doing normal and amazing stuff. The challenges she has faced and still facing, are very similar to many cancer patients.  In 2012, Kirsty moved from UK to New Zealand (i.e. to the other side of the world) because of her as yet undiagnosed illness.…
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17 Nov 2019
By Ronny Allan
2 Comments
Prognostics and Crystal Balls

Prognostics and Crystal Balls

Inspiration, Patient Advocacy, , , ,
When I was being told I had an advanced and incurable cancer, I did what most people seem to do in movies ….. I asked “how long do I have“. The Oncologist said ” … perhaps just months“. 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,…
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09 Nov 2019
By Ronny Allan
3 Comments
“Please find something wrong with me”

“Please find something wrong with me”

Awareness, Patient Advocacy, , , , , , , , ,
I’m contacted almost daily by the ‘undiagnosed’ who suspect they have Neuroendocrine Cancer, often because they appear to be displaying the symptoms of one of the associated syndromes and my large internet footprint leads them to me. These are some of my most difficult questions. I’m always very wary of initially agreeing with their assumptions and logic, instead opting for straightforward detective work based on my knowledge of the different types of Neuroendocrine Cancer, knowledge of the best scans, the best tumour and hormone markers. And I always warn them that statistically, they are more likely to have a common…
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12 Oct 2019
By Ronny Allan
3 Comments
The Flu shot – it’s not just about you

The Flu shot – it’s not just about you

Patient Advocacy, Survivorship, , , ,
An Opinion Post Edit:  October 2024.  I continue to believe the flu shot is even more important in the era of COVID-19. The flu is an illness that typically spreads in autumn and winter. A major flu outbreak could potentially overwhelm a person who might contract both at once or overlap. In fact, in Dec 2023 after contracting my second infection of COVID-19, I had a back to back regular chest infection needing antibiotics.  OK, I still succumbed to both even after having both shots in that year, but who knows what would have happened without them. Like last year, I…
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28 Feb 2019
By Ronny Allan
6 Comments
From dying to living, to hell and back

From dying to living, to hell and back

Awareness, Inspiration, Patient Advocacy, , , , ,
I once wrote a post about patient stories, in particular the ones I receive in my private messages.  The headline was "The shock effect never wears off".  But none have been more shocking than the one I received early in 2019.  (edit: After posting this article, I heard of a few similar cases). This is a story about someone who is a private person but felt the need to reach out to me about their diagnostic experience. This person wanted to talk about it, but in private and I was happy to listen.  I was so moved by this story,…
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21 Nov 2018
By Ronny Allan
10 Comments
Neuroendocrine Cancer – is normally slow growing BUT …..

Neuroendocrine Cancer – is normally slow growing BUT …..

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , ,
I have a lot to be thankful for The points below are awareness and should not be confused with pity parties (I don't do those) No thanks for growing inside me for years before making your vague announcement Sorry too late, I'm metastatic and around 50% of patients will be at diagnosis (so I'm not alone!). It's very SNEAKY! No thanks for making a right mess inside my body! I mean, I look really good, I look really well, but you should see my INSIDES No thanks for generating fibrosis throughout my mesentery and retroperitoneum! I really didn’t know what…
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20 Oct 2018
By Ronny Allan
1 Comment
How to Talk to a Cancer Patient Without Being a Complete Twit

How to Talk to a Cancer Patient Without Being a Complete Twit

General, Humour, Living with Neuroendocrine Cancer, Patient Advocacy
I enjoyed reading "8 rules on how to talk to a cancer patient" because I think much of it is written with 'tongue in cheek'.  Great title! In UK we might even spell the word 'twit' slightly differently (UK people will get it!). Some of the rules are directed at doctors and I'm sure some doctors will laugh (if you're a doctor and you didn't laugh, sorry). I think one or two are a bit harsh and could potentially backfire and at least one I partly disagree with.  Personally I try to balance my reactions to not come over as…
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10 Oct 2018
By Ronny Allan
0 Comments
Neuroendocrine Cancer – Short Update from NANETS 2018

Neuroendocrine Cancer – Short Update from NANETS 2018

Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
I would love to go to a NANETS conference but I would need sponsorship or otherwise have to fund my own way there. Seattle sounds like a great place to visit. I would even have been their twitter correspondent had they asked! I've been to the European equivalent twice, they always have theirs in Barcelona it would seem, at least NANETS uses different locations making it more interesting.  It's a scientific conference for the most part, but I guess some basic stuff is also covered. However, in the world of instant contact and communications on the internet, together with twitter,…
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15 Jan 2018
By Ronny Allan
11 Comments
Shame on you!

Shame on you!

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship,
This is not an attempt to bash people for making genuine mistakes. However, it is easy to make the mistake with people who have invisible disabilities, something now forming part of day to day life and many establishments now emphasise that in their bathrooms/toilets/restrooms.  Probably long overdue.  For the record, I don't have a visible disability, nor do I have access to any special schemes or 'perks' to gain any advantage.  I quite like to walk and don't really care how far it is to the building.  Now and then I do need short notice access to a toilet facility,…
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20 Dec 2017
By Ronny Allan
5 Comments
Neuroendocrine Cancer – surveillance and follow up

Neuroendocrine Cancer – surveillance and follow up

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , , , , , , , , , , ,
Since 2010 I've had a lot of surveillance and testing. More than people can imagine. I can see from various comments on my public pages and posts within my private group, that some people get a lot more than me and I get more than others. It's not true to say we all get the same, there are many factors including stage, grade, type of Neuroendocrine Neoplasm, healthcare system/guidelines, miscellaneous problems, therapy, and even age.In the first year or two after diagnosis, I seemed to be in a continuous testing phase but that was mainly due to seeing so many…
Read More
20 Nov 2017
By Ronny Allan
5 Comments
Living with Neuroendocrine Cancer – the 7 Year Itch

Living with Neuroendocrine Cancer – the 7 Year Itch

Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , ,
I quite like the Facebook memory thing. This morning I got a reminder of a post I made from 7 years ago whilst I was in hospital recovering from my 9 Nov surgery.  It had taken 12 days for me to feel strong enough to venture onto social media with a simple message "I'm feeling perkier".  For those not familiar with English localisms, it just means lively, spirited, bright, sunny, cheerful, animated, upbeat, buoyant, bubbly, cheery, bouncy, genial, jaunty, chirpy, sprightly, vivacious, in fine fettle, full of beans, bright-eyed and bushy-tailed.  I guess I met some of these descriptors most…
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24 Oct 2017
By Ronny Allan
2 Comments

Round up of NANETS 2017 – Let’s talk about NETs #NANETS2017

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , ,
NANETS (North American Neuroendocrine Tumor Society) is one of the biggest NET conferences, bringing together NET Specialists from around the world to discuss state-of-the-art treatment modalities, new therapies, and ongoing controversies in the field of Neuroendocrine Neoplasms (Tumors and Carcinomas). This is fairly complex stuff but much of it will be familiar to many. I’ve filtered out several outputs from the conference which I think are both relevant and topical to patients. The list is below allowing you to easily peruse and read further via linkages if you need to read more.  Remember, some of these are extracts so do not…
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16 Oct 2017
By Ronny Allan
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Opinion: Neuroendocrine Cancer – Can it be cured?

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , ,
Reviewed and tweaked in August 2026.  OPINION: "Cured" - In cancer, this word can evoke a number of emotions. Interestingly, not all these emotions will be as positive as you might think. If you want to spark a heated debate on a Neuroendocrine Cancer patient forum, just mention that you've been cured. I'm not taking any sides by using this statement, just stating what actually happens and the deeply held views that persist in community groups. One important factor in some of this thinking is that many people still remember the days where most diagnoses were late and many followed…
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02 Oct 2017
By Ronny Allan
3 Comments
Cancer Isn’t All About Me

Cancer Isn’t All About Me

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , ,
click picture to read "My Right-Hand Woman" Since my diagnosis of incurable and metastatic neuroendocrine cancer in 2010, it's really all been about me. I didn’t see the trauma coming, and my family has supported me throughout every single step. I really don’t want to be the focus of attention as that mantle was normally evenly distributed. However, there’s nothing like a cancer diagnosis to put you into the spotlight. Facing an uncertain future with regular scans, injections, treatment, pills, examinations and blood tests has made me the center of attention, whether I like it or not. The focus is…
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28 Sep 2017
By Ronny Allan
19 Comments
Ever wonder what caused your Neuroendocrine Cancer?

Ever wonder what caused your Neuroendocrine Cancer?

Patient Advocacy, , , , , , , , , , , , ,
OPINION.  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…
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08 Jun 2017
By Ronny Allan
20 Comments
8 tips for conquering fear – Living with Neuroendocrine Cancer

8 tips for conquering fear – Living with Neuroendocrine Cancer

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , ,
Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on.  Luckily for me, the 'system' picked up something suspicious and I am where I am today. It's amazing to think a…
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21 Feb 2017
By Ronny Allan
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Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Recent Progress in NET Management – Positive presentation from Jonathan R Strosberg MD

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
I recently wrote a blog called Neuroendocrine Cancer – Exciting Times Ahead! I wrote that on a day I was feeling particularly positive and at the time, I wanted to share that positivity with you. I genuinely believe there's a lot of great things happening. Don't get me wrong, there's a lot still to be done, particularly in the area of diagnosis and quality of life after being diagnosed. However, this is a really great message from a well-known NET expert. In an interview with OncLive, Jonathan R. Strosberg, MD, associate professor at the H. Lee Moffitt Cancer Center in Florida, discussed…
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18 Dec 2016
By Ronny Allan
6 Comments
Keep your lights burning

Keep your lights burning

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , ,
I recently met a colleague who I hadn't seen for 30 years. He was more than just a colleague, he was once my 'Commanding Officer'. He had been made aware of my illness but after asking how I was, he was content with my short explanation "I'm not dead yet". The great thing about soldiery is that it's perfectly acceptable to make simple and light hearted statements about very difficult situations. The other great thing is that you can pick up where you left off 30 years ago, as if it were only yesterday.  And 'Bravado' is not only acceptable, it's mandatory! A week later,…
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14 Dec 2016
By Ronny Allan
4 Comments
Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

Neuroendocrine Tumours: a spotlight on Pheochromocytoma and Paraganglioma

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,
Updated 19th August 2025 I spend a lot of time talking about the most common forms of Neuroendocrine Tumours (NETs), but what about the less well-known types?  As part of my commitment to all types of NETs, I'd like to shine a light on two less common tumour types known as Pheochromocytomas and Paragangliomas - with an incidence rate of approximately 8 per million per year. They are normally grouped together, and the definitions below will confirm why.  If you think it's difficult to diagnose a mainstream NET, this particular sub-type is a real challenge. So, let's get definitions out…
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06 Dec 2016
By Ronny Allan
8 Comments

Drum Roll – Ronny Allan wins WEGO Best in Show ‘Community’ 2016

Inspiration, Patient Advocacy, ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Very happy to win the WEGO 2016 Best in Show Community which is some ways is a recognition for my blog based on the fact is at the core of what I do and in many ways, the other apps are (currently) just 'fronts' for this output.  Whether you read my blog direct from WordPress, Facebook, Twitter, Pinterest or any other platform you find it, you are all members of this award-winning community! My WEGO Profile is here - look out for…
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26 Oct 2016
By Ronny Allan
7 Comments
Living with NETs – a patients included award winning site

Living with NETs – a patients included award winning site

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , ,
It's no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients.  It was subsequently launched in 2016 and is very aptly named 'Living with NETs'.  Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative.  And, this is great awareness for Neuroendocrine Cancer at a major pharma event. I'm also delighted to be speaking alongside Ipsen as the 'EyeforPharma' Patients Summit event in London on…
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