Awareness - Ronny Allan - Living with Neuroendocrine Cancer

03Sep 2023 by Ronny Allan No Comments

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

Awareness

US singer-songwriter Jimmy Buffett, best known for his 1970's hit Margaritaville, has died aged 76. "Jimmy passed away peacefully on the night of September 1 surrounded by his family, friends, music and dogs," said a statement on his website. 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 Resort CityWalk and found his music very pleasant to listen to. RIP Jimmy, your name and music lives on! https://youtu.be/ohDqjRGqpIU Disclaimer I am not a doctor or any form of medical professional, practitioner…

03Sep 2023 by Ronny Allan 4 Comments

Passive patient or active advocate?

Awareness, Inspiration, Survivorship

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). [caption id="attachment_1938" align="aligncenter" width="500"] Passive vs Activated Patient[/caption] I actually enjoy researching neuroendocrine disease and I'd like to think it was all in one book somewhere - this simply isn't the case! From what I've read since diagnosis, I suspect the 'all encompassing' book would need to be about 10…

28Aug 2023 by Ronny Allan 1 Comment

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

Awareness

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 places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations), it will try to break out via your blood and lymphatic…

27Aug 2023 by Ronny Allan 15 Comments

Diagnosis – I’m no longer in control

Awareness, Survivorship

The clouds are gathering. 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 and freedom of manoeuvre. I felt in control. I'm happy as a pig in the proverbial! My annual Asthma clinic comes along and it's an opportunity to work…

21Aug 2023 by Ronny Allan 2 Comments

Piss off cancer, you’ve been annoying me for 13 years but I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

Actually it has been bothering me for more than 13 years, I just didn't know what was bothering me in the lead up. On 26 July 2010, had you said I'd be writing this 13 years later, I would have said no. I was diagnosed on 26th July 2010. However, as things progressed, as treatment was administered, and as I got used to living with Neuroendocrine Cancer, I eventually became more confident about living longer than I initially thought. 10 years was a bit of a stretch target, I guess it can be more elasticated than you initially think. Think great doctors, better treatments, better guidelines and sprinkle some luck on top. Some might say attitude helps but clearly scientific proof might be lacking there. One thing though, everyone is…

05Aug 2023 by Ronny Allan 2 Comments

The Cancer Legacy of Steve Jobs?

Awareness, Clinical Trials and Research

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 into the cancer business via a venture capitalist initiative. The headline below looks great but it means cancer, not just Neuroendocrine Cancer (note the use of Steve Jobs' actual diagnosis). I first heard about this and switched off after the news article stated that Steve Jobs had Pancreatic Cancer. Don't get me wrong, I strongly believe that Pancreatic Cancer needs lots of attention and lots of funding and research. But so does Neuroendocrine Cancer including the actual cancer that Steve had, a Neuroendocrine Tumor of pancreatic origin. The article which brought back my attention to the usual Steve…

26Jul 2023 by Ronny Allan 4 Comments

13 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

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, and settled in my liver and beyond including, strangely, in my left armpit. It was incurable, and unique to serotonin secreting midgut Neuroendocrine Tumours, it had caused a dense fibrotic…

18Jul 2023 by Ronny Allan 1 Comment

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

Awareness, Patient Advocacy, Survivorship

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 and filled the bucket.A healthcare professional walked by. The person called, “Help! I can’t get out!” so the healthcare professional gave the person some drugs and said, "Take this it will…

17Jul 2023 by Ronny Allan 2 Comments

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

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Treatment

NET Specialists, Multidisciplinary Teams (MDT) and Centres of Excellence - a summary from Ronny AllanWhat 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 who is not only knowledgeable about NETs but is also experienced in treating and managing this type of cancer. It is someone who sees a lot of NET patients in their clinics and…

04Jul 2023 by Ronny Allan 2 Comments

Best wishes to Joaquin Castro

Awareness

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 taken to hospital for a check up. The hospital spotted some abnormalities in his scan and advised him to visit his doctor on return to US. One year later, he…

06Jun 2023 by Ronny Allan No Comments

Neuroendocrine Cancer: Awareness is key, but it must be the right message

Awareness, Patient Advocacy

Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010. But it should be further forward, much further forward. In some areas, we appear to be going backwards.It's not where it should be because some people, some organisations (including some so-called advocacy organisations) and even some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message. One example is a recent ASCO publication where the authors suggested the perceived rarity of NETs is holding back clinical research (the same publication also stated that NETs are uncommon but definitely not rare).It's no secret that I have been fairly 'pushy' in this area for some years now, and I will continue to push and…

18May 2023 by Ronny Allan No Comments

Neuroendocrine Cancer: Catch them early, not late!

Awareness, Patient Advocacy

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 pain in the right lower quadrant i.e. symptoms of appendicitis. The resulting appendectomy will find the tumour. However, it's true to say that most appendectomies will be connected to appendicitis…

12May 2023 by Ronny Allan No Comments

A spotlight on Rectal Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy

What are Rectal NENsRectal 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 faecal tests which lead to colonoscopy follow ups. They are typically diagnosed in older patients but the incidence in younger patients is on the increase, see author's note below in epidemiology section. Poorly differentiated…

03May 2023 by Ronny Allan 3 Comments

Repeat after me: Maria Menounos has Neuroendocrine Cancer

Awareness

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'. She also has an impressive website here. All in all, she looks like an impressive and inspiring person. News broke today that she survived "Pancreatic Cancer" and that headline is currently…

24Apr 2023 by Ronny Allan 5 Comments

The NET Detectives

Awareness, Patient Advocacy

The NET Detectives is an awareness post.Detecting NETsIn 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 the investigation, another hunt for clues.The number of cases where incidental diagnoses occur is fairly significant in certain types. I have no numbers but appendiceal NETs are a good analogy. Symptoms are…

16Apr 2023 by Ronny Allan 3 Comments

Neuroendocrine Cancer: looks can be deceiving

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

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. Other surgeries followed. In 2023, despite many side effects of treatment since 2010, he still looks like a picture of health, ......... but you should see his insides! [caption id="attachment_41830" align="aligncenter" width="640"]…

03Apr 2023 by Ronny Allan 4 Comments

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

Awareness, Patient Advocacy

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. 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 documented. But despite my late stage and advanced diagnosis, some people were not as fortunate as me, an observant and efficient nurse sent me for blood tests, one thing or another led…

26Mar 2023 by Ronny Allan No Comments

A spotlight on Appendiceal Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series

What are Appendiceal NENsAppendiceal 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 patients. Poorly differentiated appendiceal Neuroendocrine Carcinomas (aNEC) resemble small-cell or large-cell neuroendocrine carcinomas of the lung, have aggressive behaviour, and usually present with metastatic disease at diagnosis.Mixed neuroendocrine-non-neuroendocrine neoplasms (MiNEN) are possible, particularly…

12Mar 2023 by Ronny Allan No Comments

A Newsletter from RonnyAllan.NET – 13th March 2023

Awareness, Newsletters

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 to everything I do, without it, there is no Facebook, twitter or private group. It follows that supporting my blog is also supporting those other outlets. The widget below displays…

09Mar 2023 by Ronny Allan 1 Comment

A tribute to the life and legacy of Miranda Filmer

Awareness, Clinical Trials and Research, Inspiration

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 write about one of the latter scenarios, a younger than average person with an aggressive version of our disease and one that eventually was the cause of her death. It…

22Feb 2023 by Ronny Allan 2 Comments

A spotlight on Gastric Neuroendocrine Neoplasms

A spotlight on NENs - Types, Awareness, Patient Advocacy, Spotlight on NENs - Types Series, Treatment

What are Gastric NENsUnlike 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 body. After it leaves the stomach, the partially digested food passed into the intestines where it begins to be absorbed.The main parts of the stomach are shown below (often this can give…

29Jan 2023 by Ronny Allan No Comments

Dustin Diamond

Awareness

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 as it is the language used by doctors and the press to simplify the complexity to which I refer above; and will outline below. Who is Dustin Diamond Dustin Neil…

22Jan 2023 by Ronny Allan 2 Comments

Neuroendocrine tumors are uncommon but definitely not rare

Awareness, Patient Advocacy

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 as “carcinoid” which seems rifer in USA than many other parts of the world. USA is normally at the forefront of progress so let’s hope they will now get on…

03Jan 2023 by Ronny Allan 2 Comments

RonnyAllan.NET – a review of 2022

Awareness, Clinical Trials and Research, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with Ronny, Treatment

ReviewIn 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 but much is due to a change in Facebook algorithms which affected many ‘pages’ reducing their scope (the more cynical might say it was done to drive advertising revenue but …….). 2022…

01Jan 2023 by Ronny Allan No Comments

RonnyAllan.NET – Summary of December 2022

Awareness, Newsletters, Patient Advocacy

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.[caption id="attachment_3019" align="aligncenter" width="530"] Click the picture to read more[/caption]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. Click here or on the picture[caption id="attachment_14876" align="aligncenter" width="640"] Click the picture to read more[/caption]A Christmas 2022 message from RonnyA first-time…

31Dec 2022 by Ronny Allan 4 Comments

Happy New Year from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with 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 required with my primary and secondary care contacts. The biggest problem I've had this year has been succumbing to "the other big C" (after avoiding it for 28 months!) and…

26Dec 2022 by Ronny Allan 8 Comments

Piss off cancer – 12 years of Christmas and I’m still here!

Awareness, Inspiration

12 Christmas celebrations since diagnosis and I'm still here. My Facebook memories today are full of Christmas day activities including my first Christmas after diagnosis and major surgery in 2010. I remember the whole of my own family attended, my son and daughter's families and 3 grandsons (I now have 4 💜). The main thing I remember was falling asleep after the dinner and I suspect it was due to post-surgical fatigue plus ongoing issues with low haemoglobin and B12 and a long shot - an infusion of tryptophan from the meal 😏 My Facebook memory from today 12 years ago, involves the film Avatar, known for its special effects. It had a special effect in that I saw the first 30 minutes and the last 10 minutes 😊 It…

23Dec 2022 by Ronny Allan 2 Comments

A Christmas 2022 message from Ronny

Awareness, Inspiration, Living with Neuroendocrine Cancer, Newsletters, Patient Advocacy, Survivorship, Travel with 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 has been a challenging year, mainly because the pandemic had some impact on my social media activity and also in terms of growth. 2020 and 2021 were slower than normal…

02Dec 2022 by Ronny Allan No Comments

RonnyAllan.NET – Summary of November 2022

Awareness, Newsletters, Patient Advocacy

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 read. My tribute to Wilko Johnson #NeuroendocrineCancer – Rock and Roll Wilko! - Ronny Allan - Living with Neuroendocrine Cancer Dear every cancer patient I ever took care of, I’m…

25Nov 2022 by Ronny Allan No Comments

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

Awareness, Inspiration

Wilko playing at his last show. Oct 2022 in London. Aged 75. RIP Wilko Johnson - Neuroendocrine CancerI have been following Wilko's cancer story since December 2015 (and what a story it is)Read more by clicking here. [caption id="attachment_14806" align="aligncenter" width="785"] Wilko Johnson performing at The Royal Albert Hall, London on 26th September 2017[/caption] 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 back Home tour. Was supposed to be Wilko's swan song. He opted for that rather than chemotherapy when…

24Nov 2022 by Ronny Allan No Comments

Neuroendocrine Neoplasms (NEN) – genetic related syndromes

Awareness, Patient Advocacy

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 vs Familial vs Genetic Disorders I wanted to start with these definitions because people may unintentionally use these three terms interchangeably which is sometimes not the correct use of…

18Nov 2022 by Ronny Allan 1 Comment

Neuroendocrine Cancer: Those who know, know!

Awareness, Patient Advocacy

Over the years of my advocating, I've tried to explain Neuroendocrine Cancer to many people outside the community. Some 'get it' but many don't. Most understand 'Cancer', but they have real difficulty understanding 'Neuroendocrine'. Despite how hard I try, I can see that some of them just don't get it! I told someone I had a primary in the small intestine once, they said "oh you have bowel cancer then?" - NO! One of the challenges of explaining Neuroendocrine Cancer is the sheer complexity and spectrum of types. It's a heterogeneous grouping of cancers ranging from some quite indolent versions to very aggressive versions similar to many dangerous adenocarcinomas. Unlike many of the more understood cancers, Neuroendocrine Cancer can literally appear anywhere in the body, adding to an already complex…

10Nov 2022 by Ronny Allan 2 Comments

Ask More, Assume Less

Awareness, Patient Advocacy

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 going backward on this issue which I find bizarre. Certain European countries are also lagging. The phrase "Ask More and "Assume Less" is a great punchline and fits many of the…

09Nov 2022 by Ronny Allan 6 Comments

Piss off Cancer, it’s been 12 years since my “big surgery”

Awareness, Inspiration

I'm still hereI 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 a much grander announcement than the one presented to me in 2010 (or had I been paying more attention, in 2008 or 2009). I will never know if a much grander announcement…

07Nov 2022 by Ronny Allan No Comments

Neuroendocrine Cancer: Beware But Be Aware

Awareness

An awareness post from Ronny Allan BEWAREThere are a lot of scary diseases in this world. Take the lesser-known type of cancer that infiltrated my body for example - Neuroendocrine Cancer. Not only is it scary but it's also cunning, devious, misleading, and double-crossing. It likes nothing better than to play tricks on you.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 places. It can be fiendishly small to avoid being seen. Once it's established in the primary location (....or locations), it will try to break out via your blood and lymphatic systems. It wants to establish other bases in your mesentery, your liver, your lymph nodes, your bones, and any…

03Nov 2022 by Ronny Allan No Comments

RonnyAllan.NET – Summary of October 2022

Awareness, Newsletters, Patient Advocacy

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 to read more:[caption id="attachment_36751" align="aligncenter" width="640"] Click on the picture to read more[/caption]Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER hadSteve Jobs – the most famous Neuroendocrine…

24Oct 2022 by Ronny Allan 2 Comments

How are you, Doctor?

Awareness, Patient Advocacy

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 one, even today. Throughout your life, many people greet you in the street or on the phone often with the words "How are you?". You will probably say "fine" or "good…

14Oct 2022 by Ronny Allan No Comments

The Hidden Pheochromocytoma

Awareness, Patient Advocacy

I've written a few times about Pheochromocytomas and Paragangliomas, allegedly rare types of Neuroendocrine Tumour (NET). I've also written about various hidden diagnoses of NET cases where they are eventually found in living patients having been 'hidden' within other diseases, i.e. misclassified in cancer registries or even not classified as cancer at all. If you read any medical site (including hospitals which treat Pheochromocytoma) you will note statements along the lines of "mostly benign" - so it's possible the incidence rate is vastly understated on this factor alone.The other interesting data I found is that many are not discovered until autopsy. Perhaps some people were asymptomatic or maybe they just stoically put up with their symptoms. Perhaps their symptoms were put down to routine illness such as hypertension, maybe imaging…

03Oct 2022 by Ronny Allan 2 Comments

Neuroendocrine Cancer: Glossary of Terms

Awareness, Clinical Trials and Research, Diet and Nutrition, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment

Welcome to my Neuroendocrine Cancer Glossary of Terms list providing a source of meanings for acronyms and medical terms, all sourced from top Neuroendocrine Cancer and general cancer sites. How to use this list: 1. If your term begins with an A, click on A to find all terms beginning with A. Select your term from the list. 2. For numerical terms, please click on the hashtag (#) symbol in the A-to-Z strip. 3. The term definition including acronym or abbreviation will be given in full along with any of my published articles containing that term as long as I have tagged it on my website to display in the list. Please note I'm constantly working on the repository to clean up all definitions, adding and removing links where necessary,…

30Sep 2022 by Ronny Allan No Comments

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

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 needs bringing into 2021. 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.…

10Sep 2022 by Ronny Allan 2 Comments

Awareness Post – Neuroendocrine Cancer in children and adolescents

Awareness, Inspiration

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 8-year-old with Paraganglioma had lost an eye due to the location of the tumour. It is absolutely heartbreaking to read but it's amazing how resilient children can be. The Facebook followers were…

23Aug 2022 by Ronny Allan 1 Comment

Neuroendocrine Cancer: At least 50 shades of grey

Awareness, Patient Advocacy

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.And yet, when you look at many hospital/healthcare sites, advocate organisation sites, and cancer information sources not maintained by Neuroendocrine Cancer scientists or specialists, you might start to think there is just one big type of NET and only one syndrome. Once again, this is partly related to the lingering use of the term Carcinoid. Even within the community, so many people make blanket statements about Neuroendocrine Cancer which are misleading, e.g."they're all…

26Jul 2022 by Ronny Allan 14 Comments

12 years – I’m still here!

Awareness, Inspiration, Patient Advocacy, Survivorship

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, and settled in my liver and beyond including, strangely, in my left armpit. It was incurable. And, unique to serotonin secreting Neuroendocrine Tumours, it had caused a dense fibrotic reaction…

19Jul 2022 by Ronny Allan 3 Comments

Neuroendocrine Cancer: diagnostic dilemmas in July 2010

Awareness

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 something chipping away over the years. My diagnostic triggers were incidental in many ways and a reaction to me telling a GP Nurse that I thought I'd lost a bit…

08Apr 2022 by Ronny Allan 1 Comment

My illness may be invisible, but I am not – Neuroendocrine Cancer

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 before making a vague announcementI had no idea the cancer was growing in me for years. Perhaps some of my routine illnesses weren't as routine as I thought. Sorry too late, I'm metastatic,…

03Mar 2022 by Ronny Allan No Comments

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 TumoursThe 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 by senior NEN doctors in 2020 to have commonality across all blue books. Neuroendocrine neoplasm update: toward universal nomenclature © 2020 Society for Endocrinology 2020, Guido Rindi and Frediano Inzani.I can tell…

03Jan 2022 by Ronny Allan No Comments

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 outlets for my blog posts. Hopefully, 2022 will be a better year. However, just as I was totally astonished to have been able to accumulate a million views of my…

25Oct 2021 by Ronny Allan 1 Comment

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? Well, there are three main things wrong with Neuroendocrine Cancer awareness: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 organsiations (including pharma), and patient advocate organisations will not move on, we as patients and advocates need to pull them along with us. We need to do all we can to remove the term "Carcinoid" from our vocabulary ...... and theirs. Read…

17Oct 2021 by Ronny Allan No Comments

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 1987 article written by Dr Charles Moertel entitled "An Odyssey in the Land of Small Tumors" and I suspect he selected this article from Dr Moertel as he too writes…

04Aug 2021 by Ronny Allan 8 Comments

Let’s Talk About NETs (#LetsTalkAboutNETs)

Awareness, Diet and Nutrition, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

Caption: Talking to Ipsen 2016 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 talks Ann Edgar Trust - 31st August 2022 I was invited by Gordon Mackay who runs patient meetings for the Scottish NET organisation known as the Ann Edgar Trust. As usual, I was only too happy to help. …

Category: Awareness