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.

Thanks for reading

Ronny Allan

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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

Thanks for reading

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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Surgery is risky but so is driving a car


surgery

I enjoyed reading the recent blog written by Dr Eric Liu entitled The Complications of Surgery.  In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks and patients should be made aware and able to discuss these risks with their doctors.

This got me thinking about my own experience which goes back to the autumn (fall) of 2010 when I first met my surgeon.  At that time, there were a few articles about whether surgery or biochemistry was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs).  Another difficult issue for NETs can be the decision to cut or not to cut – as outlined in this article.

NETs are not that much different to other Cancers in this respect – there is always a balance between maximizing QoL and extending life.  I was very lucky that I lived on the south central coast of England because the local Neuroendocrine Cancer expertise was (and still is) one of the best in the country.  After initial diagnosis, I was followed up with more specialist tests and then offered multimodal treatment including surgery. The risks of surgery were always fully explained to me – in any case I had to sign the consent forms where they were listed!  Not sure why but I couldn’t help laughing (probably nervously!) when I noted that ‘death’ was one of the risks.  It didn’t put me off and I told him to “get on with it“.

What also caused me to smirk was my surgical labelling as a “young, slim and fit man”. I was then 55 years old, slightly heavier than I thought I should be and although I had been fit for most of my life, I wasn’t that fit at the time of diagnosis. However, my surgeon was clearly doing his own risk assessment and I seemed to tick all the boxes to be able to withstand what was to be a fairly rigorous 9 hours on his table. However, it was clear to me that age, weight/BMI and level of fitness are risk factors for surgery.

risk

I don’t want to get too deep into the moral and ethical dilemmas faced by surgeons but Dr Liu’s very honest blog and my own patient experience, highlights the need, not only for a two-way conversation between surgeon and patient, but also the need for informed consent.

I clearly survived but to be honest, it was a tough period.  During my first major operation, some risks were realised resulting in a much longer stay in hospital and some effects are still present today.  Many of the risks involved the dissection of desmopasia (fibrosis from NETs) around the aortic area (read more here). The planned 10 day stay was extended to 19 due to a suspected infection (elevated white blood cell count) and a post operative seroma (a pool of ‘liquid’) which was causing some pain. The white blood cell count eventually settled down but for the post operative seroma, I was subjected to a CT guided needle aspiration which was great fun to watch. Fortunately for this short notice and risky procedure, I was in the hands of one of the best Interventional Radiologists in the country.  Some six weeks after discharge, a follow-up scan spotted Pulmonary Emboli (blood clots) on one of my lungs and I’ve been on blood thinning treatment ever since. I returned to the same surgeon’s table 4 months later for a liver resection using laparoscopic techniques (keyhole). Again the risks were explained but it was a breeze and I was home after 6 days.

Yes, surgery comes with risks – sometimes they are realised, sometimes they are not.  Action planning to counter the common risks if realised is no doubt sensible (and I suspect already part of surgical procedures and training). However, as Dr Liu says, there can be unforeseen circumstances in the course of the operation and recovery.

Almost 8 years on from diagnosis, I’m certain the two major surgeries have played a big part in keeping me alive and as well as can be expected.  For me surgery remains the The Gift that keeps on Giving.  If you have time, I also published a blog Surgery for NETs – Chop Chop! which contains links to surgeons talking about surgery for Neuroendocrine Cancer.  There are also links to some surgical videos – I personally found them fascinating.

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

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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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