08 Apr 2022
By Ronny Allan
1 Comment
My illness may be invisible, but I am not

My illness may be invisible, but I am not

Awareness, Living with Neuroendocrine Cancer, Survivorship, , , , , , , , , ,
The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer. Many Neuroendocrine Cancer patients look outwardly healthy, and this can often lead to a lack of appreciation of the potential dangers lurking in their life, the person's actual capabilities, and how they cope with their condition. I am sure those reading who have a Neuroendocrine Cancer diagnosis will find something similar to their own experiences. Growing invisibly inside me for years…
Read More
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, , , , , , , , , , ,
WHO Classification of Tumours, 5th Edition, Volume 5: Thoracic Tumours The aim of this spotlight is to provide a summary of the latest information on Lung Neuroendocrine Neoplasms (NEN) including the latest terminology, epidemiology data, and guidelines.   This follows the publication of the Thoracic WHO classification 5th edition (2021): terminology and criteria for neuroendocrine neoplasms (Blue Book).  This book has been anticipated to see if the panel compiling this follows the lead of the Gastroenteropancreatic Neuroendocrine Neoplasms (GEPNEN) editions issued in 2017 (Endocrine) and 2019 (Digestive systems) by removing the antiquated misnomer term ''Carcinoid" in line with the recommendations made…
Read More
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…
Read More
25 Oct 2021
By Ronny Allan
1 Comment
Opinion: On World Neuroendocrine Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Opinion: On World Neuroendocrine Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness, ,
On World Neuroendocrine Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness? Where do I start ........  well, there are three main things wrong with Neuroendocrine Cancer awareness. Ancient Misnomers 1.  The community remains entrenched in 1907 terminology which needs to be brought into 2022. Things have moved on so much but the use of this ancient terminology and what it infers, just keeps us marking time in the last century. It does not do us any favours in awareness terms, nor does it do us any favours in clinical terms.  If clinicians, scientific organisations (including pharma and…
Read More
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…
Read More
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.  I will keep adding them so they're all in one place. Published TalksAnn Edgar Trust - 31st August 2022I was invited by Gordon Mackay who runs…
Read More
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…
Read More
27 Feb 2021
By Ronny Allan
0 Comments
Opinion: On Rare Disease Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Opinion: On Rare Disease Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness,
On Rare Disease Day, what's wrong with a bit of Neuroendocrine Cancer awareness?  Well, there are three main things wrong with Neuroendocrine Cancer awareness.  1. The incidence and prevalence of Neuroendocrine Neoplasms (the combination of Neuroendocrine Tumours (NET) and Neuroendocrine Carcinomas (NEC)) have skyrocketed in the last 40 years to the point that many scientists, epidemiologists and Neuroendocrine specialists are starting to use different terminology, commensurate with the math. Two of many examples:   Read more - click on the picture above.  Let's do the math not the myth.   There are some in the community who will suggest that…
Read More
16 Feb 2021
By Ronny Allan
0 Comments
Ronny Allan – Top 10 for 2020 – Neuroendocrine Cancer

Ronny Allan – Top 10 for 2020 – Neuroendocrine Cancer

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email 2020 was a different year due to the pandemic and it has spilled over into 2021 - this has had the effect of being slightly down on the 2019 figures.  I also changed tack on one of my pages adding a 'coping' theme rather than writing new blog posts.  This also had the effect of reducing blog hits for the year but very happy under the circumstances. Much of the effort in 2020 was directed in building up my private…
Read More
04 Feb 2021
By Ronny Allan
2 Comments
On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

On World Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

Awareness, ,
On World Cancer Day, what's wrong with a bit of Neuroendocrine Cancer awareness?  Well, there are three main things wrong with Neuroendocrine Cancer awareness: If the community does not address these 3 issues, awareness will continue to fail and continue to flounder.  I standby to help with the change, in fact, my work started in 2015 and continues. 1.  To be told your cancer isn't really cancer is an insult. 2.  To be called an animal is to be dehumanised. 3.  To be rare when you're not, is a step back and is hindering access to clinical trial research. WE…
Read More
30 Dec 2020
By Ronny Allan
3 Comments
A 2020 blog review (RonnyAllan.NET)

A 2020 blog review (RonnyAllan.NET)

Awareness
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Click picture to view the A to Z of Neuroendocrine Cancer by Ronny Allan I should be happy with just over a third of a million views in 2020 but I'm not!   I had a target to beat 370,500 from 2019 but fell short by 35,000 (an average month).  However, you can see from the chart below, I was on track in Jan/Feb but knocked sideways by the COVID pandemic in March to August. I never got back above 30k…
Read More
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…
Read More
30 Oct 2020
By Ronny Allan
9 Comments
Piss off cancer – I’m 67.5

Piss off cancer – I’m 67.5

Awareness, Inspiration, ,
I started doing the “Piss off cancer” series when I got to 65, mainly because I initially thought I wouldn’t make that age. I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what…
Read More
22 Oct 2020
By Ronny Allan
2 Comments
Early diagnosis of late stage cancer!

Early diagnosis of late stage cancer!

Awareness, , , ,
OPINION: What a strange title for a cancer blog post!   However, what a strange cancer I have.  Let me explain - I was really confused in 2010 as to how I could suddenly become a stage 4 Neuroendocrine Cancer patient even though I didn't feel ill enough to see a doctor.  To cut a long story short, you can read about me here."The cancer has been growing for years"One of the common stories I hear from other patients is they were told their cancer had been growing for some years, up to 10/11/12 in most cases. I'm fairly certain my surgeon…
Read More
09 Oct 2020
By Ronny Allan
5 Comments
Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patient

Paul Hunter Tribute – Snooker champion and Neuroendocrine Cancer patient

Awareness, Inspiration,
Paul Hunter, three-time Masters snooker champion was just 27 when he fell victim to Neuroendocrine Cancer at the peak of his powers and popularity. At just 25, he'd won the third Masters title, a feat which, at the time, had been achieved by only two other players in the world. He was dubbed the "Beckham of the Baize" because of his chiselled good looks and long, blond hair (a reference to famous footballer David Beckham). The Masters Trophy is one of the prestigious titles in the international snooker world and it was a belated honour that the trophy was renamed…
Read More
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
Read More
26 Jul 2020
By Ronny Allan
7 Comments
10 years, I’m still here

10 years, I’m still here

Awareness, Inspiration,
I finally made 10 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, 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 my…
Read More
24 Jul 2020
By Ronny Allan
10 Comments
Don’t be cavalier with a cancer diagnosis

Don’t be cavalier with a cancer diagnosis

Awareness, Inspiration, , , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email  I talk often about my diagnosis but not about an 'incident' which occurred almost immediately prior to being formally told.  In fact it happened on 24th July 2010, 10 years to the date this post was published.  (Spoiler alert - I'm still here).I was well into the 'diagnostic phase', having had all sorts of tests including a liver biopsy.  I vividly remember thinking these tests were a 'nuisance', I was far too busy and I didn't even feel ill.  In hindsight,…
Read More
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, , , ,
Facebook X Pinterest WhatsApp Email 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 tumors 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…
Read More
30 Dec 2019
By Ronny Allan
0 Comments
Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Ronny Allan – Top 10 for 2019 – Neuroendocrine Cancer

Awareness, , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email sharing this could help someone 2019 has been quite a year and my blog views are the highest they have ever been.  They could have been even higher had I written more articles instead of resting on my laurels after reaching ONE MILLON total views in June of this year.  Will try harder in 2020! (edit - COVID changed those plans)Things are so hectic I might need to think about more resources for my website/blog going forward.  Much of the…
Read More
16 Nov 2019
By Ronny Allan
9 Comments
Olivia Williams – Neuroendocrine Cancer (VIPoma)

Olivia Williams – Neuroendocrine Cancer (VIPoma)

Awareness, , ,
Well known UK actress Olivia Williams was diagnosed with a functioning pancreatic NET called a VIPoma. She played Bruce Willis' wife in the blockbuster Sixth Sense in 1999. She is also known for her roles in TV dramas such as ITV's The Halcyon and American science fiction thriller series Counterpart.  And she was on the set in California when her biopsy result came though confirming the pancreatic NET.  The doctors, who I believe were from Cedars Sinai even said “It’s not pancreatic cancer, it might be a neuroendocrine tumour". She finally got surgery in Kings College London.  Read the Vogue…
Read More
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…
Read More
31 Oct 2019
By Ronny Allan
9 Comments
Neuroendocrine Cancer: Double, Double Toil and Trouble

Neuroendocrine Cancer: Double, Double Toil and Trouble

Awareness, , , , , , , , , , ,
Double Neuroendocrine Cancer is a complex and difficult disease to diagnose, many people struggle with symptoms for some time before they are formally diagnosed.  Some continue to struggle after diagnosis. There are many facets that can confound a physician - at diagnosis and beyond. Double Toil If it's not enough just to have tumours growing inside your body, this cancer can also be uncannily quiet delaying diagnosis.  At the same time, the tumours can still be 'functional' and over-secrete certain hormones to add or introduce symptoms which mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart…
Read More
24 Aug 2019
By Ronny Allan
1 Comment
The Case of Justice Ruth Bader Ginsburg vs Cancer

The Case of Justice Ruth Bader Ginsburg vs Cancer

Awareness, , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email UPDATE 18th SEPTEMBER 2020RIP Justice Ruth Bader GinsburgUPDATE 17 JULY 2020Justice Ruth Bader Ginsburg said Friday that she had had a recurrence of cancer but had been undergoing chemotherapy that had shown “positive results”.  Justice Ginsburg, who is 87, said she had begun a course of chemotherapy on May 19, after a periodic scan in February followed by a biopsy revealed lesions on her liver.  She also stated that "Immunotherapy" first essayed proved unsuccessful, but the chemotherapy course is yielding positive…
Read More
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,…
Read More
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…
Read More
30 Oct 2018
By Ronny Allan
9 Comments
Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew

Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew

Awareness, , , , , , , , , , , , , , , , , , , , , ,
It’s a difficult disease to diagnose, e.g. many people struggle with undiagnosed syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Many continue to struggle after.  They hide in plain sight – sometimes the syndromes can provide clues ……… but they can still fool your doctors.   Let's change that with more awareness which can lead to earlier diagnosis. Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In…
Read More
16 Aug 2018
By Ronny Allan
10 Comments
Aretha Franklin 1942-2018: Neuroendocrine Cancer

Aretha Franklin 1942-2018: Neuroendocrine Cancer

Awareness, Inspiration, Living with Neuroendocrine Cancer, ,
On 16th Aug 2018, Publicist Gwendolyn Quinn told The Associated Press through a family statement that Aretha Franklin passed at her home in Detroit. The statement said "Franklin's official cause of death was due to advanced pancreatic cancer of the neuroendocrine type, which was confirmed by Franklin's oncologist, Dr. Philip Phillips of Karmanos Cancer Institute" in Detroit. Clearly, he meant Neuroendocrine Cancer with a pancreatic primary. However, in the fast-moving social media world, this is what went out with the lazier writers and editors abbreviating it to just Pancreatic Cancer.  All of these incorrect posts will now be embedded in…
Read More
16 Mar 2018
By Ronny Allan
5 Comments
Irrfan Khan

Irrfan Khan

Awareness, ,
‘Uncertainty is the only certainty’ Irrfan Khan 2018 Irrfan Khan died in Mumbai India 29 Apr 2020 after being admitted to hospital for a "colon infection" according to many news reports. However, The Times of India wrote about Khan’s colon infection, saying it may have resulted from cancer treatments.  Sadly, Irrfan's mother died 3 days earlier but he was unable to attend her last rites owing to India's nationwide coronavirus lockdown restricting citizens' movements at that time.  Rest in Peace Irrfan Irrfan Khan, known simply as Irrfan was an Indian actor and producer, well-known for movies, Slumdog Millionaire, Life of…
Read More
30 Dec 2017
By Ronny Allan
2 Comments
Ronny Allan – Top 6 posts of 2017

Ronny Allan – Top 6 posts of 2017

Awareness, Inspiration, , , , , , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email These are my top performing posts for 2017 - comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum. Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017 The Human Anatomy…
Read More
12 Dec 2017
By Ronny Allan
3 Comments
Update: Management of Neuroendocrine Tumors

Update: Management of Neuroendocrine Tumors

Awareness, Living with Neuroendocrine Cancer, Treatment, , , , , , , , , , , , , , , , , , , , , , ,
This is an excellent and positive video based overview of where we are with the Management of NETs.  This is a presentation from a NET Specialist (who some of you may know) presenting to a "GI Malignancies" conference.  This is therefore not only awareness of NETs, it's also some good education for non NET GI experts who may only know the very basics. Useful for patients too!  I met Dr Strosberg in Barcelona (ENETS 2017) and thanked him for his presentational and scientific paper output which I often use in my articles. The classification picture is good as it explains…
Read More
30 Oct 2017
By Ronny Allan
35 Comments
Neuroendocrine Cancer – normally slow but always sneaky – an awareness post from Ronny Allan

Neuroendocrine Cancer – normally slow but always sneaky – an awareness post from Ronny Allan

Awareness, , , , , , , , , , ,
Neuroendocrine Cancer – normally slow but always sneaky – an awareness post from Ronny Allan   There are a lot of scary diseases in this world but some of them are particularly sneaky.  One such sneaky disease is the lesser-known type of cancer that infiltrated my body - Neuroendocrine Cancer. Not only is it scary and sneaky, but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.  It is the great pretender. It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs,…
Read More
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…
Read More
16 Oct 2017
By Ronny Allan
2 Comments
Opinion: Neuroendocrine Cancer – Can it be cured?

Opinion: Neuroendocrine Cancer – Can it be cured?

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , , , , , , , , , , , , , , , , , ,
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 years of misdiagnoses for other conditions.…
Read More
08 Oct 2017
By Ronny Allan
7 Comments
The shock effect never wears off

The shock effect never wears off

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , ,
Patient stories are key to any awareness campaign.  Nothing like a human being standing up and letting you know about their experience.  Many are positive examples of how they are overcoming their trials and tribulations, others tell stories of a struggle. They all have different styles, some are the 'kick ass' type stories, some are just thankful, some are reflective - all of them are perfectly acceptable. I normally like to place myself somewhere in the middle with phrases like "I'm still here", although I can veer left and right when the mood takes me! Because of my social media…
Read More
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…
Read More
11 Sep 2017
By Ronny Allan
7 Comments
Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

Categories, tissues and primary sites – the lost awareness of Neuroendocrine Cancer

Awareness, , , , , , , , , , , ,
BackgroundWhen you look at how cancer is classified and broken down, you can see why Neuroendocrine Neoplasm (the overarching term for Neuroendocrine Tumour and Neuroendocrine Carcinoma) often appears unlisted in certain websites and in certain clinical publications and press releases.  Moreover, it robs awareness and funding for Neuroendocrine Cancer organisations, particularly when celebrities are involved in incorrect labelling. Below, I wanted to cover why that sometimes happens but also why that is undeservedly detrimental to Neuroendocrine Cancer awareness.Cancer CategoriesFrom a histological standpoint, there are hundreds of different cancers, which are grouped into six major categories:CarcinomaSarcomaMyelomaLeukemiaLymphomaMixed TypesYou may be like me and…
Read More
21 Feb 2017
By Ronny Allan
0 Comments
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…
Read More
27 Jan 2017
By Ronny Allan
2 Comments
Endoscopy for NETs – taking the camera to the tumour

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine Cancer, , , , , , , , , , , , , , , , , , , , ,
Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom.  The mouth route is more accurately called a Gastroscopy…
Read More
18 Jan 2017
By Ronny Allan
5 Comments
Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Theranostics for Neuroendocrine Cancer – A Find and Destroy Mission

Awareness, Clinical Trials and Research, Living with Neuroendocrine Cancer, Treatment, , , , , , , , , , , , , , , , , , , , , ,
Theranostics is a joining of the words therapeutics and diagnostics. You may also see it conveyed as 'Theragnostics' and these terms are interchangeable. The basic aim of theranotistics is to find and then destroy the 'bad guys'. With Neuroendocrine Cancer, finding the tumours (the bad guys) can often be a challenge - they can be small and/or difficult to find - they are sometimes expert at camouflage. Moreover, once found, they can then be difficult to treat (destroy), as they can often prove resistant to conventional cancer drugs and many are inoperable due to sheer quantity, spread and positioning. When…
Read More
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…
Read More
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…
Read More
05 Oct 2016
By Ronny Allan
20 Comments
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment, , , , , , , , , , ,
Steve Jobs died 5 Oct 2011. RIP Steve, you certainly made a difference to the world of technology and that is still being felt today. I have a number of google alerts setup and every day the emails arrive in my inbox. The longest email is always the Steve Jobs one, i.e. Steve Jobs is written about more than Neuroendocrine Cancer and other connected subjects. That's interesting because Neuroendocrine Cancer is the type Steve had, not Pancreatic as is frequently reported. There are huge differences between Pancreatic Cancer and Neuroendocrine Cancer with a pancreatic primary - click here to read…
Read More
01 Oct 2016
By Ronny Allan
1 Comment

Neuroendocrine Cancer: Patient Power!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment, , , , , , ,
There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in…
Read More
19 Sep 2016
By Ronny Allan
5 Comments

“Not the Stereotypical picture of sick”

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , ,
I've never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others?  I like to look for the positive things these well-meaning messages can convey.  Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell?  If I'm feeling mischievous, I sometimes say "yes..... but you should see my insides".  Most of the time, it dispels any awkwardness and they follow my laughter. Yesterday, I listened to a few…
Read More
19 Sep 2016
By Ronny Allan
14 Comments

Procrastination – it’s a killer

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, , , , , ,
It's amazing to think that one minute I'm back from a holiday in the Caribbean and the next minute I'm being told the inside of my body is a 'train crash'. Just how does that work?  In July 2010, I said to the Gastroenterologist investigating my low hemoglobin "I'm not even feeling ill". He sent me to an Oncologist who then told me that without treatment, the prognosis wasn't good (i.e. I would eventually die). I also told him I wasn't feeling ill ....as if my protest was somehow going to reverse the situation! The term 'silent cancer' was apt in…
Read More
24 Jun 2016
By Ronny Allan
14 Comments
What you don’t know might kill you

What you don’t know might kill you

Awareness, Treatment, , , , , , , ,
A few weeks before I was diagnosed in July 2010, Chris and I flew off to Barbados on holiday.  Both of us were looking forward to a nice break after a hectic start to 2010.  When we got back, we both agreed it was the most relaxing holiday we had ever been on. However, what I didnt know all the time I was lying on a sunbed soaking up the Caribbean sun drinking 'pina coladas', was the fact that Neuroendocrine Tumours had been growing in my small intestine, had spread into my mesenteric lymph nodes, into my liver, into my left…
Read More
15 Jun 2016
By Ronny Allan
4 Comments

Neuroendocrine Cancer – it can be ‘smoke and mirrors’

Awareness, Living with Neuroendocrine Cancer, , , , , , , , ,
In a previous life, I used the term 'smoke and mirrors' quite a bit.  I was used to dealing with many different types of people, some who wanted something, some who wanted to buy or sell something. Most of the time it was overt but the devil was usually in the detail.  Sometimes there was an element of 'covertness' or a 'hidden agenda'.  It was always tricky working out the details of the hidden agenda and sometimes it was only known when it was too late.  Some of you will already be seeing where I'm going with this line of thinking -…
Read More
13 Jun 2016
By Ronny Allan
4 Comments

Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

Awareness, Treatment, , , , , , , , , , , ,
New treatments seem to be appearing every month and that is good news for patients.  I have a personal connection to this one though.  In 2014, Chris and I walked along Hadrian's Wall, a 2,000-year-old World Heritage structure in Northern England.  This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals).  It is the first ever deployment of this type of treatment in UK and Chris and I were…
Read More
21 Apr 2016
By Ronny Allan
12 Comments
Neuroendocrine Cancer – unexpected detours

Neuroendocrine Cancer – unexpected detours

Awareness, Inspiration, ,
I've mentioned 'luck' a few times in many of my 'cancerversary' milestones - these tend to make me reflect on my experience.  Even though I was metastatic at diagnosis, I think of myself as lucky on the basis that my tumours were found by 'chance', or to be more accurate, found following an innocuous set of circumstances.  This is a common diagnostic experience for many - but more people need that luck via better education and awareness. Click here to hear me talk about my diagnosis. As we know, Neuroendocrine Cancer can sometimes be very difficult to discover and diagnose.…
Read More