Intra-Operative RadioTheraphy (IORT) for Neuroendocrine Cancer – new landmark treatment launch

PLANETS IORT LAUNCH INVITATION May 2016
IORT

New treatments seem to be appearing every month and that is good news for patients.  I have a personal connection to this one though.  In 2014, Chris and I walked along Hadrian’s Wall, a 2,000-year-old World Heritage structure in Northern England.  This was part therapy for me but also part fund-raising to help pay for this new treatment which launches today in Southampton General Hospital (UK) which was recently awarded the coveted title of European NET Centre of Excellence (along with Bournemouth and Portsmouth Hospitals).  It is the first ever deployment of this type of treatment in UK and Chris and I were happy to shred the soles of our feet to support this worthy cause, particularly when the two guys behind the idea were my surgeon (Mr Neil Pearce) and my Interventional Radiologist (Dr Brian Stedman). Both of these brilliant and skilled people ‘worked on me’ for 12 months in 2010/2011 and I live to tell you this tale!  Shortly after my surgery, they decided to set up PLANETS to focus on providing additional support for Neuroendocrine Cancer and other types such as Pancreatic and Liver in which they specialised.

Mr Neil Pearce (L), Ronny Allan (C), DSr Brian Stedman (R)
Mr Neil Pearce (L), Ronny Allan (C), Dr Brian Stedman (R)

Intra-Operative Radiotherapy (IORT) provided by Mobetron is a bit of a game changer for advanced cancers which are hard to treat and remove. This development is said to be at the cutting edge of modern radiation oncology. Despite the heading, this treatment can be used for many cancers including Neuroendocrine, Pancreatic, Colorectal and Bladder.  It is a mobile version and can be moved to different operating theatres.  There are plans to eventually extend the portfolio to include Head and Neck, Oesophageal, Lung, Breast and Cervical cancers.  The technology can also be used on Brain tumours but there are currently no plans to offer this service.

The radiotherapy is applied during surgery which means the treatment can be delivered more directly without causing damage to surrounding tissue and organs.  It’s worth adding at this stage that this type of radiotherapy is not the same as PRRT.  Moreover, it is not designed to replace PRRT which remains an option for patients downstream if they still need it (in addition to other treatments such as Sirtex, liver emobolisatons).  Clearly dosage calculations would be required for cumulative radiation exposure over short timescales.  Worth noting that PRRT currently remains denied to patients in England.

The type of radiotherapy is more similar to conventional external beam systems and the key advantage is that it can be used for areas where tumours have just been removed or part removed or in locations which have a tendency to recur; and for inoperable tumours such as those surrounding vital structures.  Examples include: bulky pancreatic tumours, inoperable mesenteric root lymph node deposits, difficult pelvic tumours, metastases around the bladder, rectum or uterus and ovaries.  It follows that in addition to treating certain tumours earlier than would normally be possible, IORT may preclude the need for further treatment or at least extend the period post surgery where further treatment would be required.

Clearly there is a lot of excitement surrounding this first ever deployment of IORT which has raised the profile of Neuroendocrine Tumours in the UK national press – check out this article in the Daily Mail by clicking here. There is a useful animated video to watch by clicking here.

The official launch happened on Mon 13 Jun 2016 and Chris and I were very proud to attend.

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Ronny Allan

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Neuroendocrine Cancer – my liver metastasis surgery


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From day 1 of my diagnosis, I knew my liver was going to need some attention but I had always known that total removal of all tumours would not be possible. This critical organ did in fact produce the biopsy confirming Neuroendocrine Cancer. The early scans indicated multiple liver lesions and an Octreotide scan reported several quite avid isotope activity.

However, as you can see from my clinical history, they first stabilised my syndrome via daily Octreotide so my tumours were subdued ready for major surgery ’round 1′ which took place Nov 2010 – I wrote about this as Part 1 and Part 2 stories.  As we are talking about my liver, it’s worth noting that a bland Liver Embolization was carried out prior to ’round 1′ as there was an option to look at the liver whilst I was ‘open’.  However, after 9 hours sorting out my other areas, there was insufficient time.

My surgeon (Mr Neil Pearce) promised me a hard year so after 4 months ‘rest’, I was brought back in for major liver surgery (round 2) which took place on 12 Apr 2011.  The ‘luck’ word has to be mentioned again because my local NET MDT was led by Mr Pearce who just happened to be one of UK’s top GI surgeons and one of the pioneers of Laparoscopic surgery – that is what I was to receive.  In the end, I had a right hepatectomy and a metastasectomy which was calculated to be approximately 66% of my liver removed. Thank goodness it grows back!

The operation went well lasting 6 hours although it could have been shorter. Mr Pearce unfortunately had to spend a quarter of this time picking through ‘dense right sided abdominal adhesions’ caused by ’round 1′. My liver metastasis was described as significant on inspection and around 90% of the tumours were removed during this procedure leaving around half a dozen sub-centimetre deposits. Interestingly he said my pattern of disease was more conspicious on intra-abdominal ultrasound than it had been on previous scans. You can see from the post picture, the type of instruments used in laparoscopic surgery and the fact that they pump air into the abdomen to give sufficient space to operate.

I recovered quickly after only 5 days in hospital and was back at work in 3 weeks.  My Chromogranin A finally returned to normal readings recognising the reduction in tumour bulk.  My 5HIAA was already back in normal after ’round 1′ and subsequent commencement of Lanreotide.  For those who have not had a liver laparoscopic procedure, the healing time is much quicker and you only have limited scarring.  I had 3 ‘stab wounds’ (that’s my name for the marks!) across the area of my liver and then a 3 inch scar at the base of my abdomen which was used to remove the ‘bits’ of resected liver.

A follow-up chemo-embolization or TACE (Trans Arterial Chemo embolization) was scheduled a few weeks after the liver surgery which was looking to target the remnant liver tumours.  However, this had to be aborted following some routing issues caused by ’round 1′ surgery.

I still have some residual (but stable) disease on my liver but there has been no progression in these 6 years.  It’s no secret that debulking or cyto-reductive surgery can be of benefit even to those with advanced or metastatic well differentiated Neuroendocrine disease.  I remain thankful for the care and attention I received in the months after my diagnosis.

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Ronny

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Neuroendocrine Cancer – my initial surgery – a patient experience (part 2)

 

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Surgeon Mr Neil Pearce and Interventional Radiologist Dr Brian Stedman

The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce, I tolerated it well.  My first week was quite tough and I outlined how this went in my blog ‘patient experience’ part 1.  If you’ve not read it yet, please click on this link before reading any further.

By this stage of my stay, I’m now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed, was the urine catheter. It doubled my speed down the hospital corridor during my daily exercises.  It was also so much easier to get to the toilet, a much frequented area at the time 🙂

Surprisingly, the comfortable and very adjustable hospital bed was starting not to seem so comfortable and I was really looking forward to my own bed back home.  Moreover, daytime TV was starting to become repetitive and boring!

However …… I had a pain right in the middle of my chest and it gradually became intolerable.  To cut a long  story short, a CT scan confirmed the presence of a postoperative seroma (a collection of fluid) and a minimally invasive aspiration was ordered. The radiologist covering my post diagnostic scans was also an ‘Interventional Radiologist’ so was able to carry out this procedure guided by CT scan.  There was a long list of scary risks explained by Dr Brian Stedman and I was put more at ease when he told me he had carried out this procedure more than anyone else in the south of England.  It was amazing to watch and it reaffirmed the amazing skills I knew this guy had.  The liquid was successfully removed (pale yellow/beige) and it later tested negative.

As a consequence of this issue plus an elevated white blood count (indicating a possible infection), I was unable to go home as planned.  However, I was in exactly the right place to continue my recovery.  I had already been ‘declared’ fit to go home by the Physio, so used the additional time to improve my mobility and strength.  The antibiotics dispensed for the suspected infection played havoc with my bowels exacerbating the post-operative problems already being encountered.

On 26 Nov 2010, I was released after 19 days of 24 hour care, doctors and nurses ‘on tap’.   I’ve read it’s normal for patients to feel insecure when leaving hospital after very close support from trained medical staff.  Although I was to be well looked after by close family, I still felt a little exposed as Chris drove me away from the hospital complete with a plethora of various drugs I would need to continue my recuperation at home.  The next few weeks were also tough but that’s another story for another day.  However, it was good to be home!

Read about my Liver surgery which took place some 4 months after this one.  LIVER SURGERY

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Neuroendocrine Cancer Surgery – a patient experience (part 1)

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Chris and I with our friend and hero Mr Neil Pearce – my surgeon.

First Surgery – 8th – 26th November 2010

Memories of my 18 day stay in hospital from 8 – 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days where the morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NET Cancer is one of a small number of cancers for which surgical debulking can in many cases confer some survival advantage in a metastatic scenario. However, the nature of Neuroendocrine Cancer means that treatment and surveillance will need to continue for many patients.

Prior to being diagnosed with Cancer, my experience with hospitals was very limited and I had always been a tad squeamish when it came to routine injections. So having major surgery with a projected 10-14 day stay in hospital was a massive challenge. However, I remember being fairly relaxed leading up to this event.  I suspect I had accepted my situation; and that a combination of pragmatism and trust in my surgical team had conquered any fear.

The surgery, which lasted 9 hours, was really in two parts, firstly to get rid of my primary in the small intestine plus any accessible locoregional stuff.  Basically the surgeon removed 3 feet of my small intestine, carried out a right hemicolectomy, and also removed ‘oodles’ of lymph nodes in the mesenteric region, with careful blood vessel reconstruction required. The second part comprised a careful removal of retroperitoneal fibrosis which was threatening major vessels.  This is an issue which has returned in 2018 and you can find an update by clicking here.

Spookily, I woke up from the anaesthesia just after midnight on 10th November, I woke up on NET Cancer Day.

I’ve not spoken too much about the first week in the hospital after surgery – mainly because some of the details remain scant. However, there are four stories I remember in some detail and they even make me smile, although I wasn’t laughing at the time!

Physio (a synonym for pain!)

One of the key things I remember was the extraordinary amount of tubes and other things connected to my body. Had I drawn a picture, it would have looked like the map of the London Underground. Some of them were taking things out of my body (temporary ‘toilet’, wound drains, etc) and others were for putting things in (drugs, pain killers, nutrition, etc). My legs had ‘circulating leg wraps’ to prevent the formation of blood clots. They were very uncomfortable and sweaty but important.  I appeared to be pinned very tightly to the hospital bed – any thoughts of escape were quickly subdued by the sheer weight of equipment.  It was, therefore, a total surprise to me how soon the Physiotherapists arrived to administer torture 🙂  The difficulty of arranging all the tubes in order that I could just even sit up led me to believe it would not be possible.  However, they persevered and I had of course forgotten, this is what they do for a living! Putting the tube issue to one side, the very act of sitting up and putting your feet on the floor with a 12″ north to south abdominal wound still repairing is one of the most difficult and painful things I’ve ever done (even after activating my Pain Controlled Analgesia (PCA) – more drugs!). However, and I say this in hindsight, this is a very important part of the healing process and patients need to be compliant!  I eventually got used to it and starting off with a walk around my bed, a walk to the nurse desk, a walk up and down the ward….. this eventually led to a walk around the hospital once some of the tubes were removed.  However, I was feeling so bad one day, I refused physio which resulted in a lecture from my surgeon (see photo above) later that night – the discussion ended with the words “You are a winner”. It helped as I sprinted up and down the ward corridor next day!  Isn’t it amazing how a kick in the ‘ass’ can also function as medicine?

Pain Control

The Pain Controlled Analgesia (PCA) button was never far from my hand.  After surgery, it isn’t completely painless, but the PCA does help.  It normally contains morphine which helps kill the pain but comes with other side effects including sleepiness (handy), foggy brain, inability to focus, strange dreams and on occasion mild hallucinations (I swear the people on the wall picture opposite my bed were moving!).  After a few days, this was replaced by drip fed paracetamol (I think).

Re-establishing the food trail

I hadn’t given this too much thought prior to the surgery but when they remove sections of your intestines (in my case the terminal ileum and the ascending colon), there has to be a new join (anastomosis) and this needs time to heal. This means a gradual and gentle return to normal eating.  One of the most annoying tubes was the nasogastric tube (NG tube).  I woke up with this tube already inserted but around day 3 it was removed whilst I was awake (a little bit scary).  However, I was sick a few times (quite scary), so it was re-inserted (a little more scarier than removal).  However, once it came out for the second time (still a little bit scary), they gave me a rather tasteless drink called ‘Fortisip’ which apparently had the proteins and nutrients I needed whilst I waited to move onto normal food. My first proper food after a few days was ‘heaven’ – chicken soup followed by ice cream and jelly (for North Americans, please note jelly is not jam!)

Re-establishing the ‘poop’ trail

Technically, this is just an extension of the ‘food trail’ info above.  However, a story that I have hardly ever recounted follows.  I think this was around day 15/16 Nov or thereabouts.  My surgeon kept quizzing me on ‘gut feelings’ i.e. burping, hiccups, wind etc.  I hadn’t realised he was working out when to offer some help re-establishing this element of my recovery.  I think I was late so some milk of magnesia was given one morning. That evening, nothing happened and so the night shift nurses were primed to offer me a ‘special’ suppository which I was assured would be a great help in moving things in the right direction.  I declined their very kind offer to carry out the ‘insertion’ instead opting for some dignity retention – there wasn’t much left at this point but I was determined to hang onto it!  As I was laying there, I quickly scanned the remaining tubes (by this stage, I was down to 5 or 6), I reached round and it very quickly dawned on me that this was ‘mission impossible’.  I rang the bell as a signal that sometimes practicality overrules dignity.  Like the physio thing above, I had forgotten that Nurses do this all the time.  Ten minutes later, the bell again summoned the nurses who helped me and my tubes to the toilet. The toilet/bathroom was to become a familiar place over the coming weeks.

Following the surgery and when I was mobile, I weighed myself and found had lost a complete stone (14 lbs).  Weight loss led up to my diagnosis and continues to be an issue today – read more here.

Part two covers the second period of my 18 day stay and can be read by CLICKING HERE

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Surgery for NETs – Chop Chop

Carcinoid liver tumour debulking
Liver tumour debulking

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.

It’s very well known that NETs can present a major challenge to physicians in their recognition and treatment requirements.  For example, NETs can cause various syndromes, not only for requiring treatment for primary and loco-regional tumours to minimise the risk of abdominal complications and future growth; but also for removal of tumour including liver and other metastases to palliate hormonal symptoms. Some tumours can be quite large and require extensive surgery to remove.

I searched reputable websites and European and North American NET treatment guidelines to find that surgical treatment of these tumours still appears to remain an important intervention, not just for curative treatment (where this is possible) but also for symptom palliation and survival. Although more treatment modalities are available than ever before (e.g. radiotherapy including PRRT, liver embolisation, liver ablation, somatostatin analogues and other new drugs, some with chemo combinations), surgery still appears to be the mainstay treatment to be offered when it is appropriate.  For some it isn’t appropriate or will be held in reserve for watch and wait scenarios or as ‘adjuvant’ treatment downstream. On paper, it appears to be the only current option for a curative scenario if the cancer is caught early enough.

I had an amazing surgeon with an impressive CV in Neuroendocrine disease.  He believes in early and aggressive surgery (within normal guidelines) and always in conjunction with other treatment modalities and only when required.  I found a video of one of his lectures which you may find useful.  Another surgeon who talks with knowledge and passion is Dr Pommier and one of his videos can be viewed here. I’m sure there are many others.   They are different characters but they both seem to believe in getting as much tumour out as early as possible and also emphasise that sometimes it can be too risky so the focus moves to other treatment.  Both presentations provide statistical evidence that debulking/cytoreductive surgery can often offer a better outlook even for those with advanced neuroendocrine disease.

I think I have a soft spot for surgeons – they also seem to love their job despite it being particularly ‘gory’.  On the subject of ‘gory’, I recently came across another surgical video which I found totally fascinating.  This one contains amazing footage of real surgery and if you are like me, you will find this very educational. It’s also fairly recent (2014) so perhaps offers more up to date techniques. It’s also a very well structured presentation. Some of you may have seen it before and some of you could even have even been at the presentation! If you don’t have time, skip forward to approximately ’19 minutes’ and watch them take out large and small tumours of the liver using a technique called enucleation!   (Click here to watch).

Hope you enjoyed this session as much as I enjoyed writing it!

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Thanks for reading

Ronny

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Every Day is NET Cancer Day!

Every day is NET Cancer Day

Opinion.  In 2014, I experienced 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 major surgery.  Read about this here – I even woke up on November 10th after major surgery.

The build up to these events normally doesn’t start in earnest until around 3 months prior to 10 Nov. On or around this day, people meet up, patient conferences and support meetings are held, thousands of tweets and Facebook posts are published, people make and eat cakes, and money is raised. I suspect awareness of NETs benefits but these things can quickly be forgotten outside the rather small world of NET Cancer patients, specialists, supporters and advocates.

If ‘N’ is equal to the amount of awareness you can physically do, then ‘N + 1’ is the amount of awareness you need. You can never have enough awareness.  For me, one day doesn’t cut it.  Some cancers have a whole month but they tend to be the big most common ones.

I’m in awe of those advocate organisations who organise these annual events and the patients who gladly join in to help by giving up their time (including NET Cancer Day and all its affiliate organisations).  There’s a lot of time and effort required.  It’s rather easy for me as I sit in my chair doing my bit – but I am doing it every day. A big advantage I have is that we now live in a connected world and there is an almost unlimited reach to a broad spectrum of people ranging from politicians to the worried well looking for a diagnosis. They all have something in common though …. they’re all connected to the internet and looking for information, looking for a feed.  Social media is really powerful but the message needs to be compelling to persuade someone to read my feed again and again.  I guess when you are marketing something on a face to face basis, it’s a different ball game but the principles of persuading someone to ‘read your feed’ are the same.

Having analysed 10th November activity and the week leading up to it, I think it was pretty much like last year, i.e. the same old tired old clichés and icons, together with out of date and inaccurate information which patients and patient advocate organisations share between each other.   I want new audiences and ones who will stick with NETs instead of just liking a tweet on November 10th.  This is what the NET Community needs too. I’m afraid cartoon animals in the most ridiculous scenarios are not going to attract long term support from outside the community. This is not a criticism of any person working for or fund raising for a NET patient organisation, I know they work very hard.  This is about the out of date and incoherent strategy.

Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD MP in the UK Parliament
Ronny Allan (right) meeting the Rt Hon Desmond Swayne TD (now Sir Desmond Swayne) MP in the UK Parliament

Although I woke up on November 10th after my surgery in 2010, I only really woke up to NET Cancer Day (the event) in 2014 where I and others met and lobbied our respective  Members of Parliament at a NET Patient Foundation sponsored event.  I was also honoured to lobby side by side with my surgeon (Neil Pearce) who is also one of the Medical Trustees for the Foundation.  I felt that activity made a real difference and I was so enthused by this event, I decided to step up my own campaigning activity using my blog to push and push for more recognition of our disease. Attracting the notice of politicians is a good awareness tactic as long as the foot remains on gas peddle.  In regards interactions with politicians, as another example I’m always happy to see the annual state declarations of support in USA.

When I consider the PR campaigns of other cancer types, I admit to being a tad envious. For example in the UK, breast, lung, bowel and prostate cancers probably have more awareness ‘value’ in a single week, than NETs get in a single year. However, these are the ‘big 4’ cancers and as a consequence attract a lot of support (and therefore resources) and are backed by government public health campaigns (e.g. in the UK, the ‘be clear on cancer’ campaign covers most of these cancers).  OK, they have a lot of resources but one thing I see across the board in these campaigns is the lack of icon adulation you see in NET awareness – rather they focus on firmly on PEOPLE and I  believe that is part of their success.  

When I suggest to ditch the animal analogies, people say to me “what icon would replace it”. I simply say “why you even need to replace it” as we’re talking about adopting a coherent strategy. By the way, name another successful cancer strategy using an animal as their ‘cover page’.  Spoiler alert, there isn’t one. 

Because NETs is a less common disease, the necessary ‘clout’ needs to be as wide as possible and this means international efforts to supplement national campaigns, particularly for awareness and recognition.  But the strategy needs to be coherent, effective and up to date. Of course, we need to get patients on board because patient stories are vital, particularly (and accurately ….) in the national news and TV. Resources (people and cash) are always going to be an issue and some high-profile patients or ambassadors would be extremely useful but they tend not to want to get involved.  Read my Human Anatomy blog to understand more about the effects of this issue.

I strongly believe we need new audiences – nationally and internationally.  To be more attractive to the ‘outside’ and new audiences, we also need a convincing and compelling ‘line’.  By ‘line’ I don’t just mean an icon or a phrase, I mean a whole ‘PR’ package. It’s very difficult for rare and less common cancers to get high-profile and continuous publicity (sometimes, to be rare or less common is to be ignored).  Therefore, this ‘line’ needs to be something that captures people’s imaginations and persuades them to be associated with the cause. It also needs to avoid being too ‘introvert’ by using oblique, confusing, outdated, single issue icons conveyed by what are essentially memes and which are only liked and shared by patients.  It also needs to be accurate.

New audiences means new thinking ….. different thinking.  One of my methods is to increase the audience reach by forming relationships with non-NET organisations including physicians.  Some of this is extremely hard work. For example, the 2016 WEGO Health Awards took a considerable amount of personal effort and time and ditto for 2017 and 2018. However, there’s a lot of new audiences out there now hearing about NETs that had never heard of the disease until I was able to use the platform of these awards.  It’s worth it.  Here’s a statement from the CEO of WEGO Health:

Jack WEGO NETs

My animal free blog site will hit one million views next year and I’m a relative newbie.  So perhaps there is another way?

When I set my blog up on 29 Apr 2014, I never imagined for one second it would be anything other than an obscure and niche site getting a couple of hits per day. I’m therefore really grateful to those who are supporting me including my most recent followers. It’s your support that inspires me to write the posts and then offer them up as awareness messages or simply words to help patients. Now, not a day goes by where I have not tweeted or posted something about Neuroendocrine Cancer. Although 10 Nov is approaching once again, for me……..

EVERY SINGLE DAY OF THE YEAR IS NET CANCER DAY

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Ronny

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I woke up on NET Cancer day

C&R at Planets (2)
what I mainly remember was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security

 

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It was 10th November 2010 just after midnight. I gradually woke up after a marathon 9 hour surgery – the first of what was to be several visits to an operating theatre.  The last thing I remembered before going ‘under’ was the voices of the surgical staff. When I woke up, I remember it being dark and I appeared to be constrained and pinned down by the dozen or so tubes going in and out of my weak and battered body.  I can still remember the feeling today, it was like I was pinned to the bed and I was completely vulnerable and helpless.  However, what I mainly remember was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security.

The build up to this day began on 26 July 2010 when I was given the news that I had metastatic Neuroendocrine Tumours and that the prognosis without any treatment wasn’t too good making the decision to have treatment a lot easier. I told my Oncologist to ‘crack on’ with whatever treatment would be required.

However, it wasn’t that easy and as I was yet to find out, Neuroendocrine Cancer isn’t a simple disease. I first had to undergo a plethora of other tests including specialist scans, blood and urine tests. The specialist scans (crucially) confirmed my tumours were ‘avid’ to a something called a somatostatin analogue’. The scan also confirmed I had more tumours than initially thought.  This was key to working out my treatment plan as I now had a grading,  staging and I had the right tumour ‘receptors’ to assist along the way.

When I initially presented in May 2010, I hadn’t realised for some months that I was showing symptoms of one of the Neuroendocrine Tumour syndromes (in my case carcinoid syndrome‘. This was mainly facial flushing but thinking back, there was some diarrhea albeit infrequent.  The subsequent specialist blood and urine tests (CgA and 5HIAA respectively) were way out of range confirming both the diagnosis of tumour bulk and tumour activity respectively.  The tumour activity (or function) is one thing which makes NETs different from most cancers and is caused by excessive secretion of specific hormones applicable to the primary location of the tumour.  Thus why I had to be established on a ‘somatostatin analogue’ which is designed to inhibit the excessive secretion.  I self-injected Octreotide daily for 2 months until the flushing was under control. When Neuroendocrine Tumours cause carcinoid syndrome, there is a risk of a phenomenon known as ‘Carcinoid Crisis’.  This is the immediate onset of debilitating and life-threatening symptoms that can be triggered by a number of events including anaesthesia. As an additional precaution to prevent such complications, I was admitted on the 8th November 2010 in order to have an ‘Octreotide soak’ (Octreotide on a drip) prior to the surgery on 9th November 2010.

As is normal for such procedures, I had the risks explained to me.  There seemed to be a lot of risks on the list and my surgeon, Mr Neil Pearce, carefully explained each one. Death was on the list but I was happy to hear he had a 100% record on his ‘table’. Trust is an extremely important word when you’re in this situation.

As a snub to cancer, I refused the offer of a wheelchair and chose to walk to the operating theatre at around 2.30pm. So together with my ‘drip fed’ Octreotide trolley and wearing my surgical stockings and gown (carefully fastened at the rear!), I wandered down to the operating theatre with my escorting nurse.

The 9-hour operation was designed to debulk what was described as “extensive intra-abdominal neuroendocrine disease”.  The operation comprised the removal of 3 feet of small intestine at the terminal ileum plus a right hemicolectomy, a mesenteric root dissection taking out the nodes on the superior mesenteric artery and a mesenteric vein reconstruction.  With the assistance of a vascular surgeon, my NET surgeon also dissected out a dense fibrotic retro-peritoneal reaction which had encircled my aorta and cava below the level of the superior mesenteric artery.  Phew! Thank goodness I was asleep 🙂

In those days, I had no idea that 10th November was NET Cancer Day.  Some 8 years later I not only celebrate the fact that I woke up on this date after my first major surgery but that I have also woken up to the idea and inspiration behind NET Cancer Day in terms of an awareness window of opportunity.

However, on the basis that you can never have enough awareness windows, for me  EVERY DAY IS NET CANCER DAY and via my own social media channels, I’m making sure everyone knows! 

Thanks for listening

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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