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…
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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…
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There are no perfect answers about an imperfect cancer

There are no perfect answers about an imperfect cancer

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 of…
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Neuroendocrine Cancer – Clinical Esoterica

Neuroendocrine Cancer – Clinical Esoterica

The good news ....... things are improving, the latest US figures confirm two major changes:1.  Most diagnoses are now early stage2.  The disease is no longer rare and no longer an orphan diseaseOne of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people.  As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer.  Some continue to struggle after.Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or…
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I woke up on World Neuroendocrine Cancer Day

I woke up on World Neuroendocrine Cancer Day

1 year after 2 x surgery 5 years after 3 surgeries 10 years after surgery 15 years after first surgery It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9-hour surgery - the first of what was to be several visits to an operating theatre. The last thing I remembered before going 'under' was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body. …
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Piss off Cancer, it’s been 13 years since my “big surgery”

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

D Day  I was 54 years and 9 months old at diagnosis on 26th July 2010.  For the first few months, I had no idea what the outcome would be.  What I did know at the time, given the final staging and grading, in addition to the other damage that was accumulated via various tests, checks, and scans; is that my body had been slowly dying. Without intervention I may not be here now to tell you this tale and who knows what would be listed on my death certificate. It’s amazing to think something that would eventually kill me without intervention,…
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Piss off cancer – I’m 68

Piss off cancer – I’m 68

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…
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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. It's a terrible joining of cancer words and does not make sense…
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The right awareness can lead to speedier diagnoses and save lives

The right awareness can lead to speedier diagnoses and save lives

ORIGINAL POST 20th May 2014.  Refreshed 25th March 2026 I was checking my statistics this morning and found the most viewed post to date was published on the day Stephen Sutton passed away.  I didn't really want to jump onto the Stephen Sutton bandwagon but when I found on the day of his passing that it had taken 6 months to diagnose his bowel cancer, I knew this would be relevant to Neuroendocrine Cancer awareness, particularly important as it's one of the primary aims of my blog.  I'm thinking the top viewing score to date is not because it mentioned…
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Neuroendocrine Cancer – diagnostic challenges:  sometimes quiet, sometimes noisy

Neuroendocrine Cancer – diagnostic challenges: sometimes quiet, sometimes noisy

Share this post please An awareness post from Ronny Allan The sooner any cancer can be correctly diagnosed, the better chances of a curative scenario for the person concerned.  However, some cancers are in the 'difficult to diagnose' category.  Neuroendocrine Tumours (NETs) are in this category due to the vague symptoms which may be mistaken for other diseases and routine illnesses. This is one of the reasons there have been many lengthy diagnostic delays.  In many cases, it can be very quiet leading to incidental diagnosis at an advanced stage. It's SNEAKY! In some cases, it can be a little bit noisy. For example, some…
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My stomach sometimes cramps my style

My stomach sometimes cramps my style

When planning to walk Hadrian's Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!).  In true 'Donald Rumsfeld style', I considered all the 'known unknowns' and the 'unknown unknowns'.  Anybody who doesn't is either reckless or supremely confident (the latter can sometimes be the same as the former......).  This major undertaking was within 4 years of my diagnosis and within two years of 3 surgeries and I was borderline stable.  I wanted to get it done while I was able! As a Cancer patient, there were some issues…
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Neuroendocrine Cancer: Troublesome Thyroids

Neuroendocrine Cancer: Troublesome Thyroids

In 2013, just when I thought everything seemed to be under control, I was told I had a 'lesion' on the left upper lobe of my thyroid and that they had been monitoring it for a while.  Of course at the time, you immediately assume NET.  It was a bit of a shock as I had already been subjected to some radical surgery and wondered if this was just part of the relentless march of metastatic NET disease.  However, that would be a simple explanation. The thyroid gland does get mentioned frequently in NET patient discussions but many of the…
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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…
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Jimmy Buffett 1946-2023 – Neuroendocrine Carcinoma (Merkel Cell Carcinoma)

Jimmy Buffett 1946-2023 – Neuroendocrine Carcinoma (Merkel Cell Carcinoma)

US singer-songwriter Jimmy Buffett, best known for his 1970's hit Margaritaville, died aged 76. "Jimmy passed away peacefully on the night of September 1 2023 surrounded by his family, friends, music and dogs," said a statement on his website. Picture credit jimmybuffett.com The cause of death has been given as Merkel Cell Carcinoma, a type of Neuroendocrine Carcinoma of the skin. Read more about Merkel Cell Carcinoma on Dana Farber - click here Many people in US and elsewhere will have heard of Jimmy and love his music.  I vividly remember going into the Jimmy Buffett's Margaritaville in Universal Orlando…
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Passive patient or active advocate?

Passive patient or active advocate?

I've been researching Neuroendocrine Cancer for some time now.  Why do I do this?  Whilst I have a great medical team, I'd also like to be my own advocate and this means understanding what medical people tell me! Moreover, I don't want to be a passive patient, I want to be an active advocate for my own health.  I found this infographic on the internet which sums up my own views nicely (special thanks to Know your Own Health Ltd). I actually enjoy researching neuroendocrine disease and I'd like to think it was all in one book somewhere - this…
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Neuroendocrine Cancer – normally slow but don’t be tricked!

Neuroendocrine Cancer – normally slow but don’t be tricked!

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. Don't be fooled, it's the great pretender. It will grow in your body without you knowing.  It finds places to hide, mainly the small intestine, appendix, lungs, stomach, pancreas, rectum, and a host of other…
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Diagnosis – I’m no longer in control

Diagnosis – I’m no longer in control

Diagnosis The dreaded moment when you're looking at an Oncologist and waiting to be given some news. I'd been to a routine annual Asthma clinic, referred to my General Practitioner (GP), referred to a specialist, had a bunch of tests, and now referred to an Oncologist.  There were many hints along the way, but it did not reduce the out of body experience I was having that day.  This happens to other people but not me. I felt in control Rewind 2 months to May 2010......  I was happily working, getting stuff done, making things work. I had sufficient autonomy…
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The Cancer Legacy of Steve Jobs?

The Cancer Legacy of Steve Jobs?

Update February 2026. Today, Yosemite said that it had raised more than $200 million for a second fund that has a total targeted size of $350 million, with heavy-hitter investors that include biotech giant Amgen, Memorial Sloan Kettering, MIT and venture capitalist John Doerr. Powell Jobs (Steve's wife) invested in the fund through Emerson; as a general partner, Jobs is also personally invested.  Read more click here.  Original story Just about everyone knows who Steve Jobs is but not many people have heard of Reed Jobs.  Clearly a relative and is actually his son.  Now aged 31, he wants to get…
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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,…
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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…
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NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny Allan What is a NET Specialist? "What is a NET Specialist" is a frequently asked question but there's no official definition of what constitutes a "NET Specialist", and it may differ from country to country/from region to region.  Similarly, many people ask what makes a doctor an expert and that is a difficult question but let's just say specialist and expert are the same thing given there is no exam or special qualification to become one. In the broadest sense, a NET Specialist is a doctor…
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Joaquin Castro – US Congressman and NET patient

Joaquin Castro – US Congressman and NET patient

Who is Joaquin Castro?  I have an international following so many people outside of USA may not know much about Joaquin Castro.  He is an American lawyer and Democratic politician who has represented Texas's 20th congressional district in the United States House of Representatives since 2013. The district includes just over half of his native San Antonio. He was diagnosed with a Small Intestine NET in July 2022 after an incidental finding while he was working in Spain.  His car hit a boar on a highway the night before he was due to fly home to the US.  He was…
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Neuroendocrine Cancer:  Catch them early, not late!

Neuroendocrine Cancer: Catch them early, not late!

Diagnosing Neuroendocrine Neoplasms (NENs). It's no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can sometimes be difficult to see.  Plus, many patients present with relatively routine day to day symptoms suggesting a myriad of day-to-day illnesses seen daily in every GP/PCP practice. But conversely, many are found incidentally while checking for something else, or in reaction to a visit to the ER/A&E or as a referral by primary care physicians for further checks at secondary facilities.  A few examples: 1. Most appendiceal NETs are found when patients present with…
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A spotlight on Rectal Neuroendocrine Neoplasms

A spotlight on Rectal Neuroendocrine Neoplasms

What are Rectal NENs Rectal Neuroendocrine Neoplasms (NENs) (rNENs) account for approximately 1-2% of all primary cancers in the rectum.  The other main cancer types found in the rectum are regular adenocarcinomas (the vast majority) and some other rare types including Gastrointestinal stromal tumors (GIST) and Lymphoma. The vast majority of rNENs will be well differentiated, i.e. rectal Neuroendocrine Tumours (rNETs) and are mostly indolent tumours treated effectively with surgical procedures if less than 1cm in size. Above that size there are different scenarios. Most will be found incidentally upon presentation of classic rectal symptoms or via colonoscopy screenings and…
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Repeat after me: Maria Menounos has Neuroendocrine Cancer

Repeat after me: Maria Menounos has Neuroendocrine Cancer

Like many people from outside USA, I don't really know anything about Maria Menounos.  For those in the same boat, let me confirm she is a very well-known personality in USA.  A journalist, television presenter and actress. She has hosted Extra and E! News; she was a TV correspondent for Today, Access Hollywood, and co-hosted the Eurovision Song Contest 2006 in Athens, Greece. She also co-created and is currently CEO of online podcast series network AfterBuzz TV. She is currently signed to WWE where she has served as an ambassador since 2013. She hosts the podcast 'Conversations with Maria Menounos'.…
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The NET Detectives

The NET Detectives

The NET Detectives is an awareness post. Detecting NETs In general, it's probably true to say that Neuroendocrine Tumours (NETs) are difficult to diagnose. Some are more complex than others and their heterogeneity is legendary.  In many cases, they can be quiet, and imaging is key in finding them if they are big enough to be seen. As most primary care facilities (e.g. General Practitioner (GP) offices) don't have a range of imaging devices on site, referrals are often necessary to investigate more.  I don't believe it's right to say this referral is a misdiagnosis, it's just another stage in…
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Neuroendocrine Cancer: looks can be deceiving

Neuroendocrine Cancer: looks can be deceiving

Is this the face of a cancer patient? Yes, it is actually.  This photo was taken on 31st October 2010.   Three months prior, on 26 July 2010, Ronny Allan was diagnosed with metastatic Neuroendocrine Cancer, a small intestine primary, extensive intra-abdominal neuroendocrine disease including para-aortic and para caval tissue areas, retroperitoneal fibrosis, some suspect areas above the diaphragm and multiple liver metastases.  Twelve (12) days prior to this photo, Ronny had a liver embolization which resulted in a week's recuperation plus pain. Nine days after this photo was taken, Ronny had his first major surgery spending 18 days in hospital. …
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Neuroendocrine Cancer: oh yes, it’s the great pretender

Neuroendocrine Cancer: oh yes, it’s the great pretender

When I was diagnosed, I didn't even feel ill. It was therefore a bit of a shock being told I had metastatic cancer, advanced enough to kill me without treatment. It was hiding But it did make me think back to some minor irritants, or to be accurate what I thought were minor irritants, things that I could not explain, things that I did not think were serious enough to speak to a doctor.  And what would this doctor have said at the time? I was never misdiagnosed because I was never diagnosed with anything that wasn't already there and…
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A spotlight on Appendiceal Neuroendocrine Neoplasms

A spotlight on Appendiceal Neuroendocrine Neoplasms

What are Appendiceal NENs Appendiceal Neuroendocrine Neoplasms (NENs) account for approximately 60% of all primary cancers in the appendix.  The other main cancer types found in the appendix are regular adenocarcinomas (including signet ring cell and goblet cell) and mucinous neoplasms such as Pseudomyxoma Peritonei (PMP) or Low-Grade Mucinous Neoplasms (LAMD). Appendiceal neuroendocrine tumours (aNET) (i.e. well differentiated) account for 75% of all aNENs, are mostly indolent tumours treated effectively with simple appendectomy. In fact, most are incidentally found upon presentation of right lower quadrant (RLQ) pain in keeping with appendicitis. They are typically (but not exclusively) diagnosed in younger…
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A Newsletter from RonnyAllan.NET – 13th March 2023

A Newsletter from RonnyAllan.NET – 13th March 2023

Newsletter from Ronny Allan - 13th March 2023 Welcome to my new template newsletter compiled using WordPress (my blog app). This is the 2nd in this format, and I will continue in the absence of a Newsletter app that meets my needs. It's been another busy month as you will see below. But please take the time to read through as I can almost guarantee there will be something you missed and want to read and share! Some of the items below will make you laugh but others may make you cry. Latest Blog Posts My award-winning blog is central…
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A tribute to the life and legacy of Miranda Filmer

A tribute to the life and legacy of Miranda Filmer

It's true to say that Neuroendocrine Cancer is an older person's disease, the epidemiology is clear on that.  But I do see many young people diagnosed. In my own experience and observation, I normally see three main scenarios with younger people; an incidentally discovered appendiceal NET after appendicitis, someone with hereditary NET (e.g. Multiple Endocrine Neoplasia (MEN)) or an aggressive version of the disease.  There are others but I find these are the most common scenarios I see in younger people.  For me personally, as a father and a grandfather, it's often heart-breaking to read these stories. I wanted to…
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A spotlight on Gastric Neuroendocrine Neoplasms

A spotlight on Gastric Neuroendocrine Neoplasms

What are Gastric NENs Unlike other anatomical types, the word Gastric is used to indicate a tumour (NET) or carcinoma (NEC) in the stomach.  The stomach lies at the bottom of your oesophagus and connects to the first part of the small intestine (the duodenum).  Clearly a key part of the gastrointestinal system, it processes food on its journey downwards. The stomach produces strong acid. This kills many microorganisms that might have been swallowed along with the food. It also contains special chemicals called enzymes. These are important for breaking down the food so it can be absorbed by the…
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Dustin Diamond (January 7, 1977 – February 1, 2021)

Dustin Diamond (January 7, 1977 – February 1, 2021)

I'm behind the curve on this one after being ahead on celebrities such as Steve Jobs, Aretha Franklin, Wilko Johnson and Olivia Williams.  But in my defence, Dustin Diamond was not that well known in UK. I noticed his name mentioned in relation to "Neuroendocrine" in early 2023. I set about searching and it didn't take me long to make a connection.  BUT .... this is much more complex than the cases above despite the misinformation which followed in all of these cases due to the use of anatomy to name cancers.  This appears to be a common issue, particularly…
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Neuroendocrine tumors are uncommon but definitely not rare

Neuroendocrine tumors are uncommon but definitely not rare

USA finally commits  UK and Australian figures recently confirmed that Neuroendocrine Cancer is the 10th and 7th most common cancer type.  It was great to see this post from the American Society of Clinical Oncology, albeit the USA is joining later than many other countries confirming the worst-kept secret ever - NETs are not rare.  That said, several NET specialists in the USA have been more vocal about this (one example is below), much more so than the cancer organisations (including the ones who represent us) who disappointingly market the rare theme along with the antiquated use of words such…
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RonnyAllan.NET – a review of 2022

RonnyAllan.NET – a review of 2022

Review In 2022, my pet project (my blog) hit 2 million views in early November – that was a major boost.  It takes 3-4 years to get a million hits based on current performance.  To be honest, I’m still flabbergasted by reaching one million in 2018. It just kinda happened!  I am grateful for every single view. 2022 was a challenging year, mainly because the pandemic had some latent impact on my social media activity and also in terms of growth.  2020 and 2021 were slower than normal but 2022 has seen some pickup.  Some of it is due to less writing…
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RonnyAllan.NET – Summary of December 2022

RonnyAllan.NET – Summary of December 2022

SummaryDecember is always the quietest month of the year, no surprise why!  However, the top 10 below is somewhat surprising, I guess some posts I make spike regardless of the time of year.  Ever wonder what caused your Neuroendocrine Cancer?This clearly interests people because approaching 1000 people read it from one single post on Facebook.  If this floats your boat - Click here or on the picture.Diagnosed with Neuroendocrine Cancer? – 10 questions to ask your doctor (and where to find a NET Specialist Worldwide)A frequently visited post, very helpful I'm told. It will one day be my most-read blog post. …
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Happy New Year from Ronny

Happy New Year from Ronny

Another year of survivalI normally only do a Facebook happy new year, but I wanted to make sure I reached everyone who follows my blog and other social media outlets.    All of the outlets above have kept my viewing figures high and although I only beat 2021 viewing figures by almost 10,000, it is an upward trend, so I'll take it!2022 was an amazing year in many respects. I continue to live well with Neuroendocrine Cancer, almost like a chronic disease.  I'm not foolish enough to think I don't need surveillance though.  That is ongoing, including regular contact when…
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A Christmas 2022 message from Ronny

A Christmas 2022 message from Ronny

Background to 2022I've only ever sent these on Facebook but this year, after some challenges, I wanted to make sure I covered anyone who supports my sites via one channel whether it is Twitter, Facebook, Newsletter or direct from a subscription to my website.  All of the outlets above have kept my viewing figures high, I guess I can't complain about a 2022 total of around 270,000 blog hits and hitting the milestone of 2 million blog hits in early November - that was a major boost.  It takes 3-4 years to get a million hits based on current performance. This…
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RonnyAllan.NET – Summary of November 2022

RonnyAllan.NET – Summary of November 2022

In November 2022, I was very active on my blog site as it was World Neuroendocrine Cancer Day on 10th Nov (although every day is the same for me!).   The death of Wilko Johnson was unexpected, I tough he would be strumming his guitar for a bit longer.  That was the top post by some margin.   The 2nd top was surprisingly popular - empathy from an oncology nurse diagnosed with cancer.  Only one old favourite made it into the top 5. Here are the 5 most read posts in November 2022.  Click on the blue heading or the picture to…
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Metastatic Neuroendocrine Tumours: Incurable isn’t always terminal

Metastatic Neuroendocrine Tumours: Incurable isn’t always terminal

Words are important I was diagnosed with stage IV cancer in 2010.  OK, it wasn't a really aggressive type, but it had caused a lot of damage.  It's amazing to think that someone is still adding to their stage IV cancer story since diagnosis of "incurable cancer".  You can read a chronological list of what happened to me and what treatment I had (and still get) by clicking here. So, am I terminal?  No, in my opinion, and by any stretch of the imagination, someone who has lived with stage IV cancer for 15 years (as at 2025) cannot possibly…
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The Inspirational Wilko Johnson:  12 July 1947 – 21 November 2022

The Inspirational Wilko Johnson: 12 July 1947 – 21 November 2022

Wilko playing at his last show. Oct 2022 in London. Aged 75. RIP Wilko Johnson - Neuroendocrine Cancer I have been following Wilko's cancer story since December 2015 (and what a story it is) Read more by clicking here. Charlie Chan (left) convinced Wilko to get his diagnosis checked, Emmanuel Huguet (right) removed his huge tumour in Cambridge. Two videos below.  Wilko is mainly a guitar player but he also wrote songs and sings too. Video 1 is 2006 when he was part of Dr Feelgood.  Boom Boom. Video 2 was made with Roger Dawltry (The Who) for the Going…
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Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Cancer is a genetic disorder. It happens when genes that manage cell activity mutate and create abnormal cells that divide and multiply, eventually disrupting how your body works.  Medical researchers estimate 5% to 12% of all cancers are caused by inherited genetic mutations that you can’t control. More frequently, cancer happens as an acquired genetic mutation. Acquired genetic mutations happen over the course of your life. This is a very general description of the close relationships between genetics and cancer but I wanted to focus below on hereditary syndromes and genetic disorders related to Neuroendocrine Neoplasms.  Definitions - the differences between Hereditary…
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My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!

My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko!

BREAKING NEWS    I recently blogged about a well-known BBC political reporter who has Neuroendocrine Cancer with a Lung Primary.  However, in the usual media 'double speak' which can sometimes pervade the coverage of such events, he is said to have Lung Cancer.  As I said in that article, sometimes with Neuroendocrine Cancer - the devil is in the detail and you just need to dig to find it. Annoying, we shouldn't need to dig as he doesn't have Lung Cancer.  I wrote about this anatomical issue here.  This is exactly what happened to Steve Jobs and Aretha Franklin. No sooner…
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Ask More, Assume Less

Ask More, Assume Less

This is a great catchphrase from Neuroendocrine Cancer UK. It is partly based on the realisation that Neuroendocrine Cancer is no longer rare.  OK, that has been the case for some years but the recent data from NHS England cements this patently obvious truth. In England, it is now the 10th most prevalent cancer with a continually rising incidence – that has already seen 371% increase since 1995.  Neuroendocrine Cancer UK is possibly the most progressive organisation within the INCA national collective, although I am seeing glimmers of change in some others.  Unfortunately, many North American organizations/advocates appear to be…
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RonnyAllan.NET – Summary of October 2022

RonnyAllan.NET – Summary of October 2022

In October 2022, it was nice to see some of the newer blog posts featuring rather than the old favourites.  That guy Steve Jobs is there but only because I posted about the anniversary of his death on October 5th.Here are the 5 most read posts in October 2022.Evidence of disease but stableEvidence of disease but stable. People get fixated on these terms, or not even be aware of what they actually mean.... but the aim of this blog post was to say that even with Evidence of Disease (ED) you can still be stable.Click here or on the picture…
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How are you, Doctor?

How are you, Doctor?

When I was a kid growing up in the 50s/60s, I have vague recollections of seeing doctors from time to time. It always felt like the doctor was a highly respected person who knew everything and was someone to whom it was safe to divulge your most intimate secrets! I think for me, that perception continued throughout my time in the military and beyond.  I suspect as you mature in age, you become more relaxed about seeing a doctor and you begin to realise they are human beings just like you.  That said, the relationship is normally always a professional…
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Opinion: On Rare Cancer Day, what’s wrong with a bit of Neuroendocrine Cancer awareness?

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

On Rare Cancer 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. Read more by clicking here or on the picture below.  Let's do the math not the myth. 2.  Linked to the issue above, the community remains entrenched in 1907 terminology which…
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Awareness Post – Neuroendocrine Cancer in children and adolescents

Awareness Post – Neuroendocrine Cancer in children and adolescents

September is Childhood Cancer Awareness Month!  The newspapers and social media will no doubt be featuring many children's cancer articles. I personally cannot begin to imagine what it must be like to be a parent who has a child with cancer. I would just hope my child would be placed into the care and safe custody of experienced medical teams and would be able to get access to the best treatments available. In 2020. this case came up in my google alerts and was related to a family who live not far from me in the south of England.  An…
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12 years – I’m still here!

12 years – I’m still here!

I finally made 12 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 47 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,…
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Neuroendocrine Cancer: diagnostic dilemmas in July 2010

Neuroendocrine Cancer: diagnostic dilemmas in July 2010

Every July, I think back to my diagnosis of advanced Neuroendocrine Cancer in 2010.   I guess one of the reasons I do this is to be thankful that I'm still alive but also, I have a sneaking suspicion that I'm still trying to remember small detail from that period.  It had felt surreal ever since 8th July when the secondary care investigating doctor sent me for a CT scan leading to a biopsy on 19th July. That scan and subsequent biopsy were to uncover some shocking detail of what had been going on inside my body, with no grand announcement, just…
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