Ronny Allan - Ronny Allan - Living with Neuroendocrine Cancer

01May 2015 by Ronny Allan 34 Comments

Neuroendocrine – what’s that?

Neuroendocrine??? what's that! I once met some fellow cancer advocates and the conversation turned to what inspired us to ‘do what we do’. When it came to my turn as the only Neuroendocrine Cancer patient, I was already prepared to regurgitate my usual 'spiel'. As sometimes happens, a listener queried me with the words "Neuroendocrine - what's that?". Another focused on 'Neuro' enquiring whether my nervous system or my brain had somehow become cancerous. Deja vu - here we go again!Two days later, I was speaking to one of my online friends who was having similar problems explaining this cancer to family and friends. Again 'Neuro' was proving difficult with the assumption that it’s somehow related to the brain. Technically not far from the truth but context is really important given that most…

27Apr 2015 by Ronny Allan 11 Comments

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

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship

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 also post them on social media increasing the reach to thousands of people, some of whom are not in the right frame of mind to see the risks. The vast…

26Apr 2015 by Ronny Allan 9 Comments

Chemotherapy for Neuroendocrine Cancer

Treatment

Edited and checked February 2022One of the unusual aspects of Neuroendocrine Cancer is that chemotherapy is not normally considered as a 'standard' or first-line treatment, unlike many other cancers. One exception is high grade (Grade 3) where it is very often a first and/or second-line therapy. This is particularly the case with poorly differentiated Neuroendocrine disease, by default labelled as Neuroendocrine Carcinoma (NEC). Many people think Chemotherapy has a short life span due to recent advances in medical science, some citing Immunotherapy as its replacement. However, it's far too early to write off chemotherapy which is still used in many scenarios and remains a tool in the arsenal of treatments for many cancer types and is predicted to do for some time yet. See more informed reporting about this below.Interest point…

22Apr 2015 by Ronny Allan 41 Comments

Carcinoid vs Neuroendocrine

Awareness, Patient Advocacy

OPINIONThere's a constant debate regarding the validity of the term 'Carcinoid'. I've posted about this a few times and as far as I know, the debate has been raging for some years.EDIT MARCH 2022. The latest classification system for Lung Neuroendocrine Neoplasms (NEN) confirms the word "carcinoid" is now a choice - the WHO Lung Committee bottled it. I made my choice some years ago, I hope others follow suit. Read more about changes to Lung NEN by clicking here. EDIT APRIL 2020. The latest classification system for Neuroendocrine Neoplasms confirms the word "carcinoid" no longer forms part of the terminology used in Digestive System tumours (effectively removing the term from GEP NETs) - read more - click hereEdit May 2020. So, what about other areas not included in GEPNETs above? Please note there…

13Apr 2015 by Ronny Allan 15 Comments

Cancer doesn’t take holidays (but I do)

Inspiration, Living with Neuroendocrine Cancer

Glen Etive Scotland in 2018 [caption id="attachment_2911" align="alignleft" width="300"] Mt Jacinto near Palm Springs[/caption] After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my 'big surgery', holidays were put on the back burner, there were too many problems and too many risks - not least of which was the lack of overseas insurance cover for my condition. After 2 years of treatment including several surgeries, I was feeling more confident and my body had become stronger, holidays were put back on the agenda, but nothing too strenuous, nothing too far away. We stuck to Europe over the period 2012-2014. However, in 2015, I was getting more confident and managed to get back to one of my all-time favourite places - California. A total…

10Apr 2015 by Ronny Allan 19 Comments

No Fear

Inspiration, Survivorship

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email It's that time again, every 6 months I need some checks. I've done the specialist blood test (Chromogranin A - CgA) and the 5HIAA and am waiting on my CT scan appointment. It's also time for my annual Echocardiogram. I then see my Consultant and he delivers the news.I positively look forward to my tests and I cannot wait to get into that scanner! 'Scanxiety' isn't in my dictionary. Why? Because testing is one thing that's going to keep me alive for as long as possible. If I don't get regularly tested, then one day I might just 'keel over' because something wasn't spotted early enough. Even in the event…

22Mar 2015 by Ronny Allan 23 Comments

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

Awareness, Diet and Nutrition, Patient Advocacy, Survivorship

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 the spread of fake healthcare news. Unfortunately, social media 'misinformation' includes 'alleged' cures for various ailments including cancer. I think we've all been there, we check twitter, Facebook, Pinterest etc and…

12Mar 2015 by Ronny Allan 12 Comments

Exercise is Medicine

General

I suspect we all know exercise is good for us but it does sometimes take 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!). I did write about this in 2014 (Exercise - it's a free prescription). In fact, my blog was actually created to document my return to fitness and good health 12 months ago! I was prompted to write this blog after discovering a piece of advice for NET Cancer patients, specifically those with carcinoid syndrome. The advice is one of those catchy 'single letter' lists called the "5 E's" of things to avoid - one of which is 'Exercise'. Clearly 'Exercise' needs putting into some context as everybody needs…

06Mar 2015 by Ronny Allan 10 Comments

Things are not always how they seem

Awareness, Living with Neuroendocrine Cancer, Survivorship

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 been too hasty to judge people in the past without thinking about what was going on inside their heads and bodies.Visible Illness can have awareness benefitsConversely in 2018, I was absolutely humbled when I met a…

26Feb 2015 by Ronny Allan No Comments

Do you suffer from NET Brain?

Awareness, Humour

The acronym 'NET' (NeuroEndocrine Tumour) can be advantageous to NET advocates and organisations because it occasionally attracts readership from outside the Cancer community when links are accidentally found by 'surfers'.NET just also happens to be a common truncation of the word 'Internet' or 'Network'. The vast majority will realise the irrelevance (to them) and move on but 1 or 2 might just hang around and take a look. Bingo - we have spread a little bit of awareness!However, these unintended awareness opportunities are not confined to 'NET'. According to my blog statistics, other than my name, the most common search phrase which leads to my blog is "No Fear" - the title of one of two blogs I wrote on so-called 'scanxiety'. However, I suspect many surfers, base jumpers, bungee jumpers, climbers, extreme sport types and those looking for…

24Feb 2015 by Ronny Allan 10 Comments

Surgery for NETs – Chop Chop

Treatment

At the end of 2014, I was feeling pretty good celebrating 4 years since my first 'big' surgery in 2010. It prompted me to write an article Surgery - the gift that keeps on giving. In that particlar article, I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time. Other than some detail of the surgery, I didn't get too technical, I just wanted to generate a thankful and festive mood. However, a recent private message from a subscriber prompted me to study the current benefits of surgery for Neuroendocrine Tumours (NETs) in more detail just to ensure my understanding was still in line with best practice. …

17Feb 2015 by Ronny Allan 14 Comments

Colonoscopy Comedy

Humour, Living with Neuroendocrine Cancer

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email Last year I wrote a series of articles on the 'coping' side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I've had, I sometimes have a little laugh even although I wasn't laughing at the time! My favourite 'treatment laugh' is the 'suppository story' which occurred in hospital shortly after my first major surgery - it wasn't funny at the time but I smile when I think back to it. On a…

10Feb 2015 by Ronny Allan No Comments

Turning a negative into a postive

General

[caption id="attachment_2625" align="alignleft" width="400"] Lung Cancer Breathalyser[/caption] Interesting piece in the news today and there's an amazing story behind it. The "Lung Cancer Breathalyser" is not a new technology but following the death of his wife from advanced colon cancer, inventor Billy Boyle has produced something good enough to have been accepted on a trial basis by the NHS. If successful, it has the potential to save thousands of lives. Lung Cancer is a big killer and the survival rate at Stage 4 is around 5%. Let's hope this invention works. When I was reading the article, I immediately recognised his wife as a blogger I was following and who died on Christmas day after fighting advanced colon cancer for 2 years. Her final and penultimate blogs are very inspiring and worth reading. Her…

03Feb 2015 by Ronny Allan 25 Comments

Lanreotide – Four more years

Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

This post has been superseded by the following: Lanreotide: it's calling the shots - click here. Lanreotide: 10 more years please! - click here. Lanreotide vs Octreotide - click here. Original post: The UK general election steps up a gear this month and social media is playing a huge part in the debate leading up to 7 May 2015. In the USA, the different parties are busily working on their candidates ready for 2016. It appears that politicians worldwide, are keen to exploit all areas of communication to eke out votes from the young and old who now use social media on a scale which makes 4 or 5 years ago look prehistoric. In 2012, Barack Obama's 'four more years' tweet was the biggest retweeted post ever up to that point after he thanked his 22 million…

28Jan 2015 by Ronny Allan 9 Comments

Intelligent patients – just what the doctor didn’t order

General

[caption id="attachment_5440" align="aligncenter" width="309"] This blog was featured by Carcinoid Cancer Foundation[/caption] I'm extremely pleased and honoured to have been selected as the first guest contributor to feature in the Carcinoid Cancer Foundation's blog site! I've been following these guys since I was diagnosed. They have been serving the Carcinoid/NET Community for over 44 Years and they are in my opinion the largest and most respected Carcinoid Cancer organisation on the planet. The Carcinoid Cancer Foundation began as the ‘Carcinoid Tumor and Serotonin Research Foundation’ in 1968 when the NIH fund for rare cancers was terminated. The name was changed to the Carcinoid Cancer Foundation in 1995. It is a non-profit organization chartered by the State of New York for the purpose of encouraging and supporting research and education…

18Jan 2015 by Ronny Allan No Comments

Disobedient Objects

General

[caption id="attachment_2510" align="alignleft" width="300"] Disobedient Object[/caption] My wife and I were in London recently and we took the opportunity to visit the world-famous Victoria and Albert (V&A) Museum in South Kensington. A particular display caught my eye entitled "Disobedient Objects" and I immediately thought it had a scientific sound to it. Imagining a set of everyday objects which somehow didn't behave as you would expect, it sounded great fun so I wandered in. How wrong I was, it was actually an exhibition examining the powerful role of objects in movements for social change. The term 'disobedient' was used as these objects were designed by grassroots social movements mostly for use in street protests. These ranged from bike locks for chaining your head to a fence to makeshift tear gas masks; to large inflatable cobblestones designed to act as a…

15Jan 2015 by Ronny Allan 4 Comments

Well done NHS!

Treatment

I've been reasonably lucky with my health over the years, suffering only the usual common ailments. I was slightly asthmatic as a child but this seemed to disappear when I left school going straight into military service. They say an army marches on its stomach... only partly true but the military did look after my health with regular check ups. I think the only medical emergency I had in my 29 years in that wonderful organisation was being knocked out in boxing training aged 16! When I left the military in 2001, I was fortunate to benefit from free health insurance at my new employers. However, I was now at an age where there was a bit of 'wear and tear' and bits were starting to fall off. I had…

07Jan 2015 by Ronny Allan 7 Comments

The Mother of all Surgeries

Treatment

[caption id="attachment_2338" align="aligncenter" width="500"] Surgery[/caption] My plan for this week's blog was to continue with a surgery theme using the story of a lady who had what was described as the "Mother of all Surgeries" after being late diagnosed with a very rare and advanced type of appendiceal cancer. With NETs, surgery is a topical subject as not everyone will be able to have it and some might not even need it. Check out my blog "to cut or not to cut". I suggested in a previous blog that 'Surgery is a gift that keeps on giving' and that is probably true for many cancer survivors. However, I then added that NETs were one of a small number of tumours for which surgical debulking can provide some survival advantage for those with metastatic and incurable disease. In my own case, I've…

30Dec 2014 by Ronny Allan No Comments

2014 in review

General

The WordPress.com people prepared a 2014 annual report for this blog. Here's an excerpt: The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 13,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 5 sold-out performances for that many people to see it. Click here to see the complete report. Check out my Facebook site here: https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723

30Dec 2014 by Ronny Allan 3 Comments

End of the year but not end of the mission

General

[caption id="attachment_2374" align="aligncenter" width="600"] Ronny & Chris Allan - festive sweaters :-)[/caption] Hope you all had a nice festive break? Chris and I had 3 separate dinners making sure we made the most of our extended family base. We decided to join in the Christmas jumper fashion statement which seems to be vogue this year - thus the picture! At least we got to wear them 3 times! Now that busy period is over, I've had the chance to reflect on the last 8 months of blogging and look forward to my plans for 2015. I created this blog site on 29 Apr 2014 mainly to document an 84 mile charity hike across Hadrian's Wall - a World Heritage site in the North of England near the border with Scotland. I was just a 'learner'…

16Dec 2014 by Ronny Allan 8 Comments

Surgery – the gift that keeps on giving

Survivorship, Treatment

As we approach NET Cancer Day, my thoughts return to 9 Nov 2010. I had been diagnosed with metastatic Neuroendocrine Cancer a few months before and 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 confers some survival advantage. Another term used at the time was 'cytoreductive' surgery which means 'to control symptoms and improve survival by removing or destroying disseminated tumour metastases'. Less neuroendocrine tumours should result in lower secretions of specific hormones which in turn should decrease the effects of Carcinoid Syndrome from which I was suffering at presentation. I'm still alive and kicking and don't feel too…

12Dec 2014 by Ronny Allan 9 Comments

Chocolate – the NET effect

Diet and Nutrition, Humour

Share on facebook Facebook Share on twitter Twitter Share on pinterest Pinterest Share on whatsapp WhatsApp Share on email Email I've always had a 'sweet tooth' and the softer the sweet the better - toffee, marshmallows, chocolate, jelly babies, jelly beans, fruit pastilles, fudge, liquorice allsorts, 'tablet' and macaroon bars (both from Scotland), are all on my list of favourites. In terms of desserts, I love those too - ice cream, cheese cake, meringue, cake, sponge with custard, the list is endless. And of course a hot drink isn't complete without a biscuit (or three....). Don't get me wrong, I'm not stuffing my face with sweet stuff 24/7, however I do need my sugar 'fix' now and then. I'm not a large person, I'm small 'framed' and although I was starting…

05Dec 2014 by Ronny Allan No Comments

Neuroendocrine Cancer – not an exact Science

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy

I've been interested in science since my school days and seem to remember it being separated into Biology, Physics and Chemistry for study and examination purposes. Biology wasn't on my radar and as I found Chemistry boring, I focused on Physics which seemed to be more 'modern' and exciting. Curiously, at the beginning of my Open University degree course some 25 years later, I found the Biology and Chemistry modules of my foundation year the most enjoyable part of the whole 6 year study. Different teaching methods? different teachers? Perhaps, but I suspect some maturity was involved plus a hunger for new knowledge. I seem to have caught the learning bug again since being diagnosed with Neuroendocrine Cancer (NET Cancer). Like many other NET Cancer patients, I feel I need to know a lot more than the average cancer patient. For me, this can be attributed to a number of…

01Dec 2014 by Ronny Allan 2 Comments

Tobacco and Cancer: A smoking gun?

General

I've never smoked so I'm reasonably confident my own cancer experience is not related to this type of personal lifestyle. I did, however, grow up in a world where smoking was widespread and a generally accepted behaviour. We now know that smoking causes more than four in five cases of lung cancer. Lung cancer not only has one of the lowest survival rates of all cancers, but is the most common cause of cancer death in the UK. Shockingly, most of these deaths are preventable, by giving up smoking in time or not starting at all. Smoking also increases the risk of at least 13 other cancers including the larynx (voice box), oesophagus (gullet), mouth and pharynx (throat), bladder, pancreas, kidney, liver, stomach, bowel, cervix, ovary, nose and sinus, and some types of leukaemia. There is also some evidence…

25Nov 2014 by Ronny Allan 2 Comments

Neuroendocrine Cancer – early diagnosis, not early misdiagnosis?

General

The papers and social media seem to be full of awareness and early diagnosis articles this month. This coincided with world NET Cancer Day on 10 Nov and world Pancreatic Cancer day on 13 Nov. Social media was, therefore, buzzing with messages from organisations supporting and advocating for both of these cancer types. These issues also made it to the conventional media outlets of newspapers, radio and television. Last week I watched a clip from the UK national news, where 7-year survivor of Pancreatic Cancer Ali Stunt was telling the nation about the top 3 symptoms of Pancreatic Cancer and I was struck by the similarities with NET Cancer. However what really caught my ear was Ali saying how important it was for individuals to think whether the symptoms they…

10Nov 2014 by Ronny Allan 2 Comments

Every Day is World Neuroendocrine Cancer Day!

Awareness, Inspiration, Patient Advocacy, Survivorship

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 "NET Cancer Day" is not good awareness - besides the terrible grammar, there is no such term as "Neuroendocrine Tumour Cancer". And if we use just "NET" then in epidemiological terms we exclude the Neuroendocrine Carcinoma guys who need just as much awareness as we do (perhaps more). The build-up to…

10Nov 2014 by Ronny Allan 10 Comments

I woke up on World Neuroendocrine Cancer Day

Awareness, Inspiration, Living with Neuroendocrine Cancer, Survivorship, Treatment

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship

When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity. The blog was only ever intended to be a temporary supporting tool for the walk 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 controversial. I didn't really have much time to think them through properly at that point in time. However, I've since dabbled in some of these areas to test the waters. I'm not a healthcare…

24Sep 2014 by Ronny Allan 6 Comments

Passive patient or active advocate?

General

Sorry to have been quiet for a while but I've been so busy with house, family and cancer campaigning activities. Additionally, I've been continuing my research into Neuroendocrine Cancer. 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…

06Sep 2014 by Ronny Allan No Comments

No flushes please!

General

[caption id="attachment_1893" align="alignnone" width="640"] No flushes please![/caption] 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 at this link here: http://wp.me/p4AplF-c Continuing with the 'four years on' theme, 4 years today I started my first treatment. That was a full 6 weeks after diagnosis. I think many people might expect a quicker execution of treatment. However, I cannot remember becoming impatient, albeit mine was to be palliative/cyto reductive (tumour debulking) rather than curative. I did have a 3 day Octreotide Scan…

03Sep 2014 by Ronny Allan 3 Comments

Childhood Neuroendocrine Cancer – 1 in 7 million!

General

General

[caption id="attachment_1467" align="alignleft" width="288"] Good Results[/caption] You can tell there is a football competition on and they don't get bigger than the World Cup which I believe is one of the world's great sporting competitions second only to the Olympics? Like it or not, this is a time when football fans suddenly become experts, apparently knowing even more about the game than the managers, players, pundits and commentators - particularly in hindsight after the match! Is it just me or do you also wonder why these 'armchair pundits' aren't in the aforementioned jobs :-) Social media has increased the reach of the armchair pundits and consequently we now have to listen to running commentaries of every game and of course their disapproval of any decision or infringement against the…

16Jun 2014 by Ronny Allan 2 Comments

I’ve just been nuked!

General

When I was in the military, I was given basic training in how to deal with the threat of Nuclear, Biological and Chemical Warfare (known then as NBC). However, there was a focus on the chemical side as that was classed as the most defendable of the 3 and probably the most likely scenario (but that's only my opinion!). I think the training for nuclear attack consisted of the following advice: 'put your head between your legs and kiss your arse goodbye' :-) Some 13 years after departing that wonderful organisation, I'm now allowing radioactivity to be injected into my body! At my age I'm no longer physically able to put my head between my legs but in any case, I need not be concerned about this controlled 'contamination'…

12Jun 2014 by Ronny Allan No Comments

My stomach sometimes cramps my style

Awareness, Diet and Nutrition, Living with Neuroendocrine Cancer, Survivorship

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......).As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain. One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur. If you've had abdominal surgery, you might be having to deal with issue. Many Neuroendocrine Tumour (NET)…