Neuroendocrine Cancer? – 10 early questions to ask your doctor

Neuroendocrine Cancer? – 10 early questions to ask your doctor

On the day I was diagnosed, I hadn't really thought about questions, the only one I actually remember asking was "how long do I have left to live" (I watch too many movies!). On the day of diagnosis and period beyond, people tend to feel emotions of shock, denial, anger, and sadness, before going on to accept their situation. Yes, I 'googled' but not a great deal really - although some things I found did frighten me. I wish I had found this article way back then. As things progressed in the weeks after 'D-Day', I started to work out…
Read More
A Review of April 2024 on RonnyAllan.NET

A Review of April 2024 on RonnyAllan.NET

Here is the monthly summary of what we all achieved in April 2024. Something new, something blue and some borrowed too!  Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  Every share spreads awareness and you potentially save someone's life. One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog and other social media sites. I wish I could do more but there's just little old me!  And Chris too of course for those following my exploits on…
Read More
Happy 10th birthday to my Blog Ronny Allan – Living with Neuroendocrine Cancer (RonnyAllan.NET)

Happy 10th birthday to my Blog Ronny Allan – Living with Neuroendocrine Cancer (RonnyAllan.NET)

On 29th April 2014, I release my first post entitled "What's it all about" i.e. why on earth am I writing a blog! It was simple in those days, I just wanted your money :-)  I was fundraising as many diagnosed cancer patients and their supporters frequently do. In my own case, I was fundraising for my local NET charity who were raising money to support NET patients in various ways.  Their latest challenge at that time was getting access to intraoperatrive radiotherapy machine (IORT), something that could help 'blast' small cells and tumours in places near to the 'operative…
Read More
Neuroendocrine – what’s that?

Neuroendocrine – what’s that?

I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?".  Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again!  Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and…
Read More
The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

The trouble with the NET (Part 2) – Alternative Therapies – what’s the harm?

“But it works… I read it on the internet!” You may remember my article entitled The trouble with the NET (Part 1) which was a light-hearted but still serious discussion about the dangers of self-treatment on the internet. Linked to that blog was a very popular article written by the scientists at Cancer Research UK debunking some cancer myths which seem to regularly patrol the NET and social media. Many well meaning people will send you articles they saw on the 'NET' about this and that treatment which claims to cure cancer.  They also post them on social media increasing…
Read More
“An odd disposition of tumours” – less common metastases in Small Intestine and Pancreatic NETs

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

Every day is a learning day in NET! When I was diagnosed in 2010, my Oncologist sent me for a specialist scan that would help confirm my staging definition and to document anything that might not have shown up on CT.  This was described as an Octreotide Scan (somatostatin receptor scintigraphy) (now mostly replaced by Somatostatin Receptor PET (SSTR PET) e.g. Ga68/Cu64). Lo and behold, the 3 day Octreotide scan lit up some odd places which seemed to be unconnected to my small intestine primary.  I was already stage IV due to the presence of liver metastases and this was…
Read More
Carcinoid vs Neuroendocrine

Carcinoid vs Neuroendocrine

There's a constant debate regarding the validity of the term 'Carcinoid'.  I've posted about this a few times and as far as I know, the debate has been raging for some years.  This post was originally generated in April 2015 (and hasn't changed that much!). EDIT MARCH 2024. There is now a consolidated Endocrine/Neuroendocrine Tumour classification system (Blue Book).  Still in print but you can see a summary of changes by clicking here. Didn't provide clarity for all NENs. EDIT MARCH 2022.  The latest classification system for Lung Neuroendocrine Neoplasms (NEN) confirms the word "carcinoid" is now a choice when…
Read More
Neuroendocrine Cancer Online Patient Groups: frighteningly good or good at frightening?

Neuroendocrine Cancer Online Patient Groups: frighteningly good or good at frightening?

When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be overly negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn't really a major player, more of a 'lurker'. I found it quite 'cliquey' and I should have listened to the initial advice of that fellow patient!  So, I left it after the reigning clique found I didn't want…
Read More
Piss off cancer, it’s 13 years since my liver surgery!

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

I'm still here I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging, grading, and other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate.  It’s amazing to think something that would eventually kill me without intervention, didn’t have…
Read More
A Review of March 2024 on RonnyAllan.NET

A Review of March 2024 on RonnyAllan.NET

I'm thankful to the loyal supporters on my blog site and the other social media sites day and night (and I do note some doing both!).  I really am very grateful.  You know who you are - take a bow! Here is my monthly summary of what we all achieved in March 2024. Something new, something blue and some borrowed too!  Every share helps someone understand or even work towards a diagnosis, discovery of the best doctors and treatments.  One reason I am very thankful is because I continue to interleave personal life via short motorhome breaks and maintenance of my blog…
Read More
Diagnosed with Neuroendocrine Tumours: Hurry up and wait

Diagnosed with Neuroendocrine Tumours: Hurry up and wait

When I was diagnosed with metastatic well differentiated Neuroendocrine Cancer on 26 July 2010, I just wanted them to hurry up and fix my body so I could get back to normal get back to work. My expectations of speed turned out to be wildly inaccurate and in hindsight, it's because I was wildly naïve. With Neuroendocrine Cancer, particularly well-differentiated, low or medium grade tumours, it sometimes doesn't work as fast as you would think and there are very good reasons for that. The complexity of the condition needs some consideration as the physicians work up a treatment plan, when…
Read More
Tick off that bucket list

Tick off that bucket list

In 2002, I was reading a Sunday newspaper and found myself drawn to an article about hiking the 2000 year old Hadrian's Wall. The walk along Hadrian’s Wall Path is an 84 mile (135 Km) National Trail stretching coast to coast across northern England, from Wallsend, Newcastle upon Tyne in the east to Bowness-on-Solway on the west coast.  It generally follows the line of Hadrian’s Wall, along the way passing through some of the most beautiful parts of northern England – from rolling fields and rugged moorland to the vibrant cities of Newcastle and Carlisle.   As someone interested in history,…
Read More
Neuroendocrine Cancer – Horrible Hormones

Neuroendocrine Cancer – Horrible Hormones

Updated and reviewed 20th March 2024 Hormonal imbalances are quite common in many conditions including day to day stuff. With Neuroendocrine Cancer, it can be a real challenge both at diagnostic and maintenance phases.  In addition to the cancer angle, there's some strange stuff going on, inexplicable, frightening for the patient, an unwanted ingredient causing chaos! Until I was diagnosed with metastatic Neuroendocrine Cancer, I didn't have a clue about hormones - it's one of those things you just take for granted. However, hormones are vital to human health (male and female) and it's only when things go wrong you…
Read More
The trouble with the NET (Part 1) – Cancer Myths

The trouble with the NET (Part 1) – Cancer Myths

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 can lead to needless worry and even hinder good prevention and treatment decisions. In one study, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey. In a similar study in UK, the NHS blamed social media…
Read More
Neuroendocrine Cancer: If your doctors don’t suspect something, they won’t detect anything!

Neuroendocrine Cancer: If your doctors don’t suspect something, they won’t detect anything!

One of the most discussed and debated Cancer issues is late diagnosis. Cyberspace is full of disturbing stories and many different cancers are involved. Some cancers are notoriously difficult to diagnose, meaning that awareness and education needs to extend from the general population to healthcare professionals at all levels. The latter is a challenge as first-line physicians battle to deal with thousands of different conditions, many of which have similar presentations. Neuroendocrine Neoplasms have a record of being difficult to diagnose which often leads to late diagnosis. Moreover, due to their often-silent nature, a late diagnosis is often a default…
Read More
Neuroendocrine Tumours (NET) – benign vs malignant

Neuroendocrine Tumours (NET) – benign vs malignant

Reviewed and Updated 14th March 2026 One of the most controversial aspects of Neuroendocrine Neoplasms, in particular low grade Neuroendocrine Tumours (NETs), is the 'benign vs malignant' question.  It's been widely debated and it frequently patrols the various patient forums and other social media platforms. It raises emotions and it triggers many responses ..... at least from those willing to engage in the conversation. At best, this issue can cause confusion, at worst, it might contradict what new patients have been told by their physicians (....or not been told). I don't believe it's an exact science and can be challenging for a NET…
Read More
The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

The Classification, Grading and Staging of Neuroendocrine Neoplasms (incorporating WHO 2026 classification changes)

Updated 1 August 2026 This section of my website has been published and regularly updated since 2015 but the most recent updates to the World Health Organisation (WHO) Classifications for Digestive and Thoracic Systems are about to be published.  You may see these important publications called 'Blue Books'. Digestive Systems  The main changes worth mentioning here is the addition of two new subtypes of Gastric NETs -  Types IV and V, a genetic mutation and PPI related respectively.   A larger update will be added when the publication is available online.   Thoracic Systems (Lung/Thymus)  The "multidisciplinary expert group" that drafted these…
Read More
Living with Cancer?  Take a break if you need one

Living with Cancer? Take a break if you need one

It's natural to feel low, worried or stressed when we're unwell, and someone with a long-term condition is more likely to experience mental health issues.  I once read an article where it suggested that up to 40% of cancer patients suffer from varying degrees of sub-clinical depression. Caring for your mind is when you have a physical health issue can make a big difference to your overall wellbeing so it's worth making the effort to improve if applicable. I learned early on that when you live with any long term illness, getting through the day can be tough. For some…
Read More
Staging of Neuroendocrine Neoplasms (NENs)

Staging of Neuroendocrine Neoplasms (NENs)

Stage of cancer What is stage?  The extent of a cancer in the body. Staging is usually based on the size of the tumour, whether lymph nodes contain cancer, and whether the cancer has spread from the original site to other parts of the body. What are the stage numbers?  Most types of cancers have 4 stages, numbered from 1 to 4 indicating a rising spread as the number is bigger. Some cancers have a stage 0 but I don't believe this applies to Neuroendocrine Neoplasms (NENs).  Often doctors write the stage down in Roman numerals, so you may see…
Read More
Diagnosed with Cancer? You may get a flood of sympathy and oodles of empathy but be careful with the tsunami of advice

Diagnosed with Cancer? You may get a flood of sympathy and oodles of empathy but be careful with the tsunami of advice

Some might think this is an odd post for someone with a massive online patient group for cancer. Well, putting aside my disclaimers, group rules about 'advice' and the strong moderation approach, I totally agree with you (thus my approach to running a group). In the past, I have written about the dangers of advice from those who mean well but in inadvertently give you not so good advice. I even wrote a critique about patient support groups in my own area of Neuroendocrine Cancer where I suggested they could be frighteningly good but also good at frightening. However, while…
Read More
Lower grade higher stage NETs – slow motion, chronic and indolent?

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

ContextI write many blogs but one thing I always emphasise is the heterogenous nature of something called Neuroendocrine Neoplasms.  That is a catch all for both well differentiated Neuroendocrine Tumours (NET) and poorly differentiated Neuroendocrine Carcinomas (NEC).  The latter is almost always an aggressive cancer and less common than its less aggressive NET relative (when Small Cell Lung Cancer is not included in the math).  That said, the higher grades of NET can also be quite aggressive but very often still with a better outlook than NEC. Well differentiated NETs, particularly at the lower end of the scale tend have a…
Read More
Histamine – NET or NOT?

Histamine – NET or NOT?

Histamine is mentioned a lot in both patient groups and in literature as somehow connected with NETs, particularly with so called carcinoid syndrome (CS).  In fact, various putative mediators, including serotonin, catecholamines, brady- and tachykinins, kallikrein, histamine, motilin, and prostaglandins, have been suggested as potential causative factors for the symptoms and complications associated with CS. It is generally believed that most of these tumour-derived secretory products are inactivated by hepatocytes and, therefore, only cause symptoms when they either bypass or are secreted outside of the portal vein drainage system. I wanted to focus on Histamine in this article.  But what is the…
Read More
Sequencing of Somatostatin-Receptor–Based Therapies in Neuroendocrine Tumor Patients

Sequencing of Somatostatin-Receptor–Based Therapies in Neuroendocrine Tumor Patients

There can be no doubt that the discovery of somatostatin receptors as a means to treat Neuroendocrine Tumours has been a huge success.  Additionally, scientists looked at a theranostic angle and provided somatostatin receptor based imaging for diagnosis and surveillance purposes. Many patients are prescribed somatostatin anlaogues shortly after diagnosis and this has led to a reduction in the morbidity that comes from active carcinoid syndrome and has reduced the incidence of carcinoid heart disease. More recently, the introduction of somatostatin receptor based PETs, taking over from the elderly Octreotide scans, has meant speedier and higher quality identification of NETs…
Read More
Me and the other big C December 2023

Me and the other big C December 2023

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

Midgut neuroendocrine tumor patients have a depleted gut microbiome with a discriminative signature

What is the gut microbiome?   According to Cleveland Clinic, your gut microbiome is a microscopic world within the world of your larger body. The trillions of microorganisms that live there affect each other and their environment in various ways. They also appear to influence many aspects of your overall health, both within your digestive system and outside of it.  If you read their summary here, you can understand some of the implications of this study. However, as the study concluded, midgut NET patients have an altered gut microbiome which could suggest a role in NET development and provide novel targets…
Read More
Neuroendocrine Neoplasms – very often there are no perfect answers

Neuroendocrine Neoplasms – very often there are no perfect answers

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

Opinion: Let’s attack Cancer metaphors

Since I started blogging, I've read dozens of articles on the subject of 'cancer metaphors' and in particular their use in describing cancer experiences with the words 'fight', 'battle' and other 'military' sounding terms.  The authors say that perhaps this is not the best language to use.  One author used the term 'violence' to describe these type of metaphors.  A ridiculous misrepresentation of the metaphor in my opinion. Let me put my cards right on the table as I would hate to twist the meaning of words or the inference of any metaphors I might use.  I don't like Cancer - it attacked me, it attacked…
Read More
Neuroendocrine Cancer – The F Words

Neuroendocrine Cancer – The F Words

When I first created my blog in April 2014, I had to find some material to lead up to my 84 mile walk (at the time, it was a temporary vehicle for the single purpose of raising money for charity).  An idea I had probably led to the longer term survival of this blog after people quite liked the descriptions of well known words used in NET parlance.  I managed this using an A to Z list over approximately 26 days which was perfect for my timeline. I gradually renamed those early blog posts and I just noticed that the…
Read More
When Should Genetic Testing Be Performed in Patients With Neuroendocrine Tumors?

When Should Genetic Testing Be Performed in Patients With Neuroendocrine Tumors?

Another episode in the expert opinion series.  I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too. Dr Jennifer Eads talks about the tricky issue of when Genetic Testing Be Performed in Patients with Neuroendocrine Tumors? Jennifer R. Eads, MD Associate Professor of Clinical MedicinePhysician Lead, GI Clinical ResearchDirector, National Clinical Trials NetworkDirector, Penn Neuroendocrine Tumor ProgramDivision of Hematology and OncologyUniversity of Pennsylvania, Abramson Cancer CenterPerelman Center for Advanced Medicine Philadelphia, PA The discussion is centred on…
Read More
Neuroendocrine Cancer: Make time for your wellness

Neuroendocrine Cancer: Make time for your wellness

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

Imaging to Monitor Treatment Response in Patients With Advanced Neuroendocrine Tumors

Another episode in the expert opinion series.  I thought this might be useful for some of you after an interesting 'google alert' brought up these discussions.  It comprises a roundtable discussion with known NET specialists and some big hitters too.  "Dr Thor" is a favourite of mine. Worth pointing out that Dr Thor is giving is own view on this and that view may not be the same as your own doctor and/or hospital in terms of frequency and type of imaging devices used.  Nonetheless, his opinions are always interesting. Also, worth pointing out this is based on "advanced" NETs,…
Read More
Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

Expert Perspectives in Neuroendocrine Tumors and Carcinoid Syndrome

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

Every Day is World Neuroendocrine Cancer Day!

Opinion: In 2014, I experienced (so called) NET Cancer Day (10 Nov) on a major scale for the first time since its inception. Prior to that, it didn't really do that much for me.  Spookily, I even woke up on 10 Nov 2010 after a major 9-hour surgery.  Read about this here - I even woke up on November 10th after major surgery. You'll note the title of this post is "World Neuroendocrine Cancer Day" and that is because (so called) "NET Cancer Day" is not good awareness (ignore the grammar too). It's a terrible joining of cancer words and…
Read More
No flushes please!

No flushes please!

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

Exercise – it’s a free prescription

Exercise is a free prescription.  Clearly, I need to be careful with that statement given my aversion for cancer myths but it was once prescribed to me to get me through an awful period in 2013.  The vast majority of doctors will tell you exercise is good for us but like me they must realise that it sometimes takes quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!).  In fact, my blog was actually created to document my return to fitness and…
Read More
The Big C – a subject nobody wants to talk about

The Big C – a subject nobody wants to talk about

   When I launched my blog with the sole aim of fundraising for a walk along Hadrian's Wall, the first couple of posts I published were all about why Chris and I were doing this 84-mile walk. I had to talk about cancer.  That was difficult enough but after that, it suddenly got really difficult.  What would I tell people .....  I then had a brainwave ..... let's do an A to Z and I started with a short list (some letters had shorter lists than others (Q, J, Z etc).  (p.s. This was not the A to Z Glossary…
Read More
Meet Edison® Histotripsy System – powerful bubbles

Meet Edison® Histotripsy System – powerful bubbles

Please read this before asking questions Histotripsy is a new treatment, but it's an ablative technique rather than a drug.  It can be equated to liver embolization or conventional tumour ablation but uses what would appear to be a more effective targeted therapy.  It's early days, the fact that it has been approved by FDA (see wording below) is about all we know but this blog will be kept live. I get asked a lot of questions but some of the detail NET patients tend to ask is simply not available to me.   1. Where can I get this treatment? …
Read More
Another dartboard event, another first

Another dartboard event, another first

On 7th October 2023, another dartboard event, another first.  I think I've lost count of my Covid 19 and Flu vaccinations, particularly the latter which has been going on for 20+ years.  But this year was the first time I received both vaccinations at the same time. This is known in healthcare circles as 'coadministration' and is widespread practice.  Both references below (UK and US) confirm this strategy. Coadministration of Covid-19 and Flu is new on the basis that Covid-19 is relatively new.  Clearly a sign of the times but from what I've read and studied, it's safe and effective…
Read More
Just got (a) shot in the buttocks

Just got (a) shot in the buttocks

I love watching films and Tom Hanks is one of my favourite actors. He's played such a wide range of parts and I've found every single one of his films enjoyable. I think the first one I remember was 'Big' - a cracking family film for all ages. When I saw the large floor piano keyboard in Schwartz toy store in New York, I had to give it a go (video or photo to follow if I can find it!).  On the opposite side of the scale, he's also been in some quite gory films such as 'Saving Private Ryan'…
Read More
Dr Google will see you now

Dr Google will see you now

Edited 7th May 2026. Whenever I need to know anything nowadays, I mostly just look on the internet and sometimes I ask my virtual PA 'Alexa' to look for me!  I even dabble in artificial intelligence (AI) (but I tread carefully on both).  However, you need to be very careful in acceptance of what is credible information and what isn't. As I had worked in IT since the 1980s, plus being a relatively experienced health blogger and activist, I like to think of myself as 'internet savvy', so I occasionally find myself using 'Dr Google' to diagnose my own aches,…
Read More
Never mind the Bollocks – here’s the cancer

Never mind the Bollocks – here’s the cancer

I don't tend to share some very personal stuff, but this is on the boundary of that rule and there are some important messages to be teased out. For those who follow my blog in detail, you may remember the post entitled "Neuroendocrine Cancer - Signs, Suspicions, Symptoms, Syndromes, Side-Effects, Secondary Illnesses, Comorbidities, and Coincidences" (now named "a difficult jigsaw)As you can see from the title above, I got hooked on a bunch of 'synonyms' that represent the difficulty in sorting out what can be attributed to Neuroendocrine Tumours (NETs) and what might be something else.  You'll note they all begin…
Read More
First and only FDA-cleared, fully automated chromogranin A assay

First and only FDA-cleared, fully automated chromogranin A assay

There has been controversy about the utility of Chromogranin A for many years now.  Specialists have been critical about its use but to be fair even those less critical still confirm that alone it would not be trusted to formally diagnose Neuroendocrine Cancer.  That said, it was still controversial when certain US guidelines were updated to recommend it is not regularly tested.  It's well known for being a sensitive but non-specific marker for most tumours of Neuroendocrine type, the non-specificity is mostly due to the other conditions, some of which are highly prevalent in many countries, including but not limited to…
Read More
Neuroendocrine Cancer:  Question, Clarify, Confirm

Neuroendocrine Cancer: Question, Clarify, Confirm

One of the many observations I make in my private Neuroendocrine Cancer Facebook group is the misunderstandings caused by the use of non-standard terminology combined with a lack of understanding of what is up to date or not.  And I don't always mean a misunderstanding by patients. If I am to believe doctors uttered some of the often-quoted words and phrases provided by patients from anecdotal conversations or from a letter or report, then it is clear that some doctors are out of date. I attempted to pin this down in my much read "10 questions to ask your specialist"…
Read More
Update from Ronny Allan: No evidence of progressive disease at any site

Update from Ronny Allan: No evidence of progressive disease at any site

Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site".Very pleased!With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, 'Stable' is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.It's important to understand that 'Stable' simply means the disease is "under control" with tests and scans showing…
Read More
Living with an incurable cancer – does mind over matter help?

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

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

Lung cancer diagnosed early because of new tool

I'm a believer in science overtaking mortality figures and there is evidence of that already happening when you read the latest survival figures. But too many are still succumbing to this killer disease.  I also believe that artificial intelligence (AI) has the potential to help. Even with cancers of the lung, where known causes are heavily linked to death rates, are decreasing but that is mainly due to preventative measures such as stopping smoking.  However, not all cancers of the lung are caused by smoking. Most low-grade Lung NETs is a good example, there are others. I've had a flurry…
Read More
13 years – I’m still here!

13 years – I’m still here!

I finally made 13 years since I was diagnosed on 26th July 2010.  A milestone I was not certain at the time I would reach.  However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident this was a possibility with the help of Chris my wife of 48 years. I was fortunate that my cancer was not that aggressive although it was aggressive enough over an unknown period of time (probably years) to have grown inside my small intestine and mesentery, reached an army of lymph nodes,…
Read More
Sometimes you gotta climb that hill, even if you get wet!

Sometimes you gotta climb that hill, even if you get wet!

Sometimes you gotta climb that hill, even if you get wet is another metaphor post. Earlier this month in July 2023, Chris and I set off to climb a hill on Dartmoor.  The weather was unpredictable, and we anticipated getting wet alongside the physical effort needed to climb Cox Tor.  We spent an hour steadily climbing up an approach path just to get to the base of Cox Tor and it had already rained twice at this point.  The clouds were moving fast over our heads, dropping their rain each time.  We still had to climb to the top and it…
Read More
A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

A tumour-finding probe improves the ‘effectiveness of surgery in Gastrointestinal neuroendocrine tumours

A major challenge that cancer surgeons face currently is that there are no reliable methods to identify the tissue type during surgery (other than fast tracking tissue sampling). The surgical procedures, therefore, rely extensively on the experience and judgment of the surgeon to decide on how much tissue to remove around the tumor margins.  Sometimes this can result in the removal of excessive healthy tissue. On the other hand, not removing some tumour cells can often need a follow-up surgery to remove residual cancer tissue. This just adds to patient morbidity and long-term detrimental effects on the patient’s outcome. The use…
Read More
A person with Cancer fell into a hole and couldn’t get out……….

A person with Cancer fell into a hole and couldn’t get out……….

A person with 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 still…
Read More