I’m only as good as my last scan

I’m only as good as my last scan

"I'm only as good as my last scan". I once received this comment in response to one of my posts.  I thought it was a very pragmatic thing for someone to say.A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5-HIAA are clearly useful (for me) but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and…
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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! “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 lighthearted 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…
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Things are not always how they seem

Things are not always how they seem

Graphic courtesy of SoBadAss.me (Sam Cleasby) In 2014, Chris and I walked 84 miles along Hadrian's Wall on the English/Scottish border.  It was a fantastic experience, and we met some really interesting people on our 6-day journey.  On the 4th night, I encountered a lady who was pretty rude. I wanted to say something, but I was with Chris and other people were also present, so I kept quiet.  I later discovered this lady was autistic and I was, therefore, relieved I hadn't responded to her initial rudeness. However, it got me thinking about the number of times I had perhaps…
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Surgery – the gift that keeps on giving

Surgery – the gift that keeps on giving

I first wrote this article in December 2014.  My thoughts went back to my first surgery in 2010 when I was discharged 4 weeks before Christmas.I had been diagnosed with metastatic Neuroendocrine Cancer in July 2010 having been told it was incurable. However, with 'debulking' surgery, my Oncologist said my prognosis could be significantly improved. I now know from my own research that Neuroendocrine Tumours are one of a small number of cancers for which surgical debulking can confer some survival advantage.  Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by…
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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…
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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…
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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…
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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 for…
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So what next?

So what next?

See the Sycamore Gap section in the post Original posts 3rd June 2014. Well we did it! Chris and I finished our 84 mile Hadrian's Wall challenge on Saturday 31 May 2014 around 1630 hours at Bowness-on-Solway.  The final leg from Carlisle was listed as 14.5 miles but on our app it was more like 16 miles. We headed straight to the only pub in the village for a celebratory pint!  Very happy to be finished :-)We had trained for 4 months for this challenge but it was tougher than we had imagined, particularly the effect on our feet.  That's not…
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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…
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Lower grade higher stage NETs – slow motion, chronic and indolent?

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

Context I 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 differeniated Neuroendocrine Carcinomas (NEC).  The latter is almost always an aggressive cancer and less common than its less aggresive NET relative (when Small Cell Lung Cancer is not incuded in the math).  That said, the higher grades of NET can also be quite aggresive but very often still with a better outlook than NEC. Well differentiated NETs, particularly at the lower end of the scale tend…
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Things not to say to someone with cancer

Things not to say to someone with cancer

This topic comes up regularly on patient forums, twitter, Facebook..... in fact everywhere!  Personally, I don't tend to get too excited about it, although there can be extremes.  Most people (not all) are just stumped to know exactly what to say.  Even as a person with cancer, I sometimes feel awkward when faced with someone I just found out has a serious illness. It's really difficult to know what to say, knowing how they might react and it's particularly difficult if you don't really know the person, for example on social media, you could be talking to someone who you have never…
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Me and the other big C

Me and the other big C

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…
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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…
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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 Macmillan Cancer Support featured this post CKN featured this post 5 years after 3 surgeries 10 years after surgery 13 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…
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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…
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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.…
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Blogging is a full-time job – and I walked right into it!

Blogging is a full-time job – and I walked right into it!

My very first blog post - 'remastered' in 2023! The original post as I published it on 29 Apr 2014 This is a new skill so bear with me, please!  The aim of this blog is to post a running commentary of a walk of Hadrian's Wall with my wife Chris. The walk commences 26 May 14 at Wallsend in East Newcastle and completes on the evening of 31 May 14 at Bowness-on-Solway. The walk is for two purposes: 1.   To raise awareness of Neuroendocrine Cancer 2.  To promote and fundraise for PLANETS Charity (Pancreatic, Liver And Neuroendocrine Tumours). As a…
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Always thank your Nurse – sometimes they’re the only one between you and a hearse!

Always thank your Nurse – sometimes they’re the only one between you and a hearse!

I had minimal exposure to nurses throughout the first 55 years of my life.  I did spend a night in hospital when I was 16 having been knocked unconscious in the boxing ring (you should've seen the other guy). Bar the odd mandatory injection, I avoided both boxing and nurses for many years after that. But now ...... You may remember I discussed how my cancer was diagnosed following a fairly innocuous conversation at my GP's Surgery in May 2010, see blog post 'Diagnosis - I'm no longer in control'.  That nurse was professional, thorough and she clearly went the extra mile…
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My stomach cramps my style

My stomach 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 I…
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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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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…
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Shrek and Princess Fiona

Shrek and Princess Fiona

I was looking through some old photographs and came across this one I thought you guys might like.  It's pre-diagnosis round 2008 (although I didn't know cancer was growing inside me). As you can see, despite being an ogre, Shrek is actually quite a handsome chap! Moreover, Princess Fiona is as you would expect, beautiful and radiant. There's a bit of a story behind this picture as Chris (Princess Fiona) was in fact not very well at the time.This picture was taken in Anaheim (LA) in Disneyland California in 2008. We were there with Chris's brother Gerry (mad ex paratrooper)…
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Dr Google will see you now

Dr Google will see you now

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 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, pains and unusual feelings (and I confess to using it to help others).  I…
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My right-hand woman – Chris

My right-hand woman – Chris

There's been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it's possible the patient would potentially have a much poorer quality of life.I've had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I'm in a much better place than I was in 2010-2014 but I have a lot of people to thank for some excellent progress.  My…
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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…
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Exercise is Medicine

Exercise is Medicine

Exercise is medicine.  Clearly I need to be careful with that statement given my aversion for cancer myths.  However, those who know me will totally get where I'm coming from, they will know that there is no way I am saying it cures cancer.  What I am saying is that 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!).…
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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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Diagnosis – I’m no longer in control

Diagnosis – I’m no longer in control

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

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

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…
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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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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…
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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 and…
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Sometimes, you gotta climb that hill, even if it hurts

Sometimes, you gotta climb that hill, even if it hurts

I started my "sometimes you gotta climb that hill" series/campaign some years so.  I used it as a metaphor based on my own experience of actually climbing up hills.  In the first couple of years after diagnosis, there was no way I could have done some of the physical stuff I can do now - having 3 surgeries and recovering from all 3 put paid to that.  But in hindsight, I don't believe I could have done some of these hills before I was diagnosed!  To be bluntly honest with myself and you guys, I was too busy at work…
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Neuroendocrine Cancer:  Awareness is key, but it must be the right message

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

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, at least one regional scientific organisation and some healthcare professionals, insist on hanging on to old ideas which are sending the wrong message. A recent ASCO publication suggested the perceived rarity of NETs is holding back clinical research and in the same paragraph,…
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Getting back in the saddle

Getting back in the saddle

a 50-mile ride - ribs feeling fine! After a month of chest infection 2023/24 The "getting back in the saddle" metaphor I thought back about a few periods since my diagnosis on 26th July 2010 about how I would 'get back in the saddle'. I suspect many cancer patients experience similar junction points in their own journeys.  After I was told about my metastatic Neuroendocrine Cancer, work was my anchor, something that I felt comfortable and in control, so in effect that was my metaphoric saddle in the early days. But as my treatment came into view, particularly major surgery,…
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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.  Other…
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Treatment for Neuroendocrine Cancer: Beware of the alternatives

Treatment for Neuroendocrine Cancer: Beware of the alternatives

The Alternative HypeCancer Research UK warns of the risks in Alternative Therapies, and I pay great attention to what these guys say.  I know from my association with their research capability, that they take an evidence-based approach and do not publish these things lightly.Please note Alternative Therapy is not the same as Complementary Therapy. Alternative therapy is something used instead of conventional approved treatment, complementary therapy is something used in addition to conventional approved treatments. Nonetheless, any therapy which is not approved may be dangerous to cancer patients. One of the big selling points advocates of alternative therapies use is to…
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RonnyAllan.NET – a review of 2022

RonnyAllan.NET – a review of 2022

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…
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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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A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

A multicentre validation of the NETPET score (Dual [68Ga]DOTATATE and [18F]FDG PET/CT in patients with metastatic GEPNENs

Background It's normally the case that the higher the grade/Ki67 in Neuroendocrine Neoplasms (NENs), the less likely the tumours will have somatostatin receptors and therefore be able to take advantage of somatostatin receptor PET (SSTR PET) as the gold standard in nuclear imaging.  This is why most grade 3 NENs will receive [18F]FDG PET/CT which finds glycolytic activity in the tumour and predicts an aggressive disease course and normally a higher histological grade. It can also add to prognostic outcomes, which in turn can add to therapy choice decisions. There is an overlap though, particularly with the recognition of well-differentiated…
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Lanreotide Ipsen:  13 more years

Lanreotide Ipsen: 13 more years

Update 11th Jan 2024.  Ipsen decided to change the name for Somatuline Autogel to Lanreotide Ipsen.  Clearly to distinguish its product from the generics now rolling out.  Not seen similar yet for Somatuline Depot (US). I once wrote a blog entitled "Four more years".  I was watching the US elections back in 2014/15 and that phrase come up after it became the most retweeted tweet on twitter (since been overtaken several times).  As a blogger, I was trying to tie in that popular phrase with my lanreotide experience hoping it would drum up some blog views.  I can tell you now,…
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Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Incidental Findings in Somatostatin Receptor PET (SSTR PET) scans (e.g. Ga68/Cu64)

Incidental Findings in SSTR PET Somatostatin Receptor (SSTR) PET scans (e.g. Ga68/Cu64) have transformed the imaging landscape for Neuroendocrine Cancer, mainly for well-differentiated NETs, most of which will be somatostatin receptor positive.  However, Oncologists/NET Specialists and radiologists must be aware of the various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error.  Included in these pitfalls are incidental findings. What is an incidental finding?  An incidental finding, also known as an incidentaloma, may be defined as “an incidentally discovered mass or lesion, detected by CT, MRI, or other imaging modality (e.g. PET) performed…
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Evidence of disease but stable

Evidence of disease but stable

Musings from a metastatic NET patient of 12 years plus In every surveillance session I've had since diagnosis, there was always something to report.  Much of it was old stuff that had been there since diagnosis which they are tracking (incidental findings).  However, there is also stuff that they know is almost certainly NET but not doing much and not threatening me.  That sentence alone probably translates to "stable".  After a surveillance event in 2021, I was awarded the accolade of "reassuringly stable", a status which I was happy to accept! Words are very important to cancer patients, some people…
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Neuroendocrine Cancer:  Glossary of Terms

Neuroendocrine Cancer: Glossary of Terms

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…
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Living with cancer: 5 tips for facing things you can’t control

Living with cancer: 5 tips for facing things you can’t control

I'm wired not to worry too much about something I cannot control.  For example, I automatically ignore any concerns about being inside an imaging device and then having to wait for the results to come through.  For me, I need to get the scan and I cannot control the results. The results will be what they will be, and I will react accordingly when I know them.  I once wrote an article called "Scanxiety, I just don't get it".  In hindsight, perhaps I was a bit harsh as not everyone is wired like me. However, perhaps presenting the reasons for…
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Opinion: Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

Opinion: Neuroendocrine Cancer – remission, cancer-free, no evidence of disease

 An opinion post.  This subject comes up a lot in patient groups. The heterogeneity of Neuroendocrine Neoplasms (a term for both well differentiated NET and poorly differentiated NEC) tends to be forgotten as people start to make blanket statements as if it applies to every single NET patient. It becomes a rather circular discussion where certain readers might even be unnecessarily misled about their outcome casually suggested by someone who knows nothing about their diagnostic and treatment history. Part of the problem is the official cancer terms built in the 1970s remain in use today, but they do not fit…
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Curtis Crump: “If I’m going down, it won’t be without a fight.”

Curtis Crump: “If I’m going down, it won’t be without a fight.”

Curtis Crump: Credit MD Anderson Cancer Center Curtis Crump has an amazing story to tell.  Given 6 months to live, he refused to accept that prognosis and looked elsewhere. He found a top hospital that directed him to an established clinical trial of immunotherapy. Curtis has a high grade aggressive type of Neuroendocrine Cancer called Neuroendocrine Carcinoma (with a Colon primary).  The immunotherapy has some effect to the point that he was able to have surgery, a treatment option not always available to poorly differentiated Neuroendocrine Carciomas. His story is relevant to many people's experiences across the broad spectrum of…
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