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 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 remember most 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 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 grade, stage 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 that 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 excessive secretion.  I self-injected Octreotide daily for 2 months until the flushing was under control. When certain 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 several events including anaesthesia. As an additional precaution to prevent such complications, I was admitted on the 8th November 2010 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 2pm. 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 anaesthetist injected the anaesthesia and commenced his countdown.  It worked!

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 the 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 that had encircled my aorta and cava below the level of the superior mesenteric artery.  Phew! Thank goodness I was asleep!  Read the remainder of my therapy story here.

When I woke up just after midnight on 10th Nov 2010, what I remember most was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security.

I’m still here!

One day per year doesn’t cut it for me, so on the basis you can never have enough awareness windows, for me, EVERY DAY IS WORLD NEUROENDOCRINE CANCER DAY and via my own social media channels, I’m making sure everyone knows! 

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10 thoughts on “I woke up on World Neuroendocrine Cancer Day

  • Ellen Dunn

    I am the Washington State Ambassador for NETS AWARENESS DAY in the US. Just posted a proclamation from the governor on my page. Getting the word out on Nov 10th. Ellen Dunn

  • Amazing how dates can hold so much meaning to us. My surgery to remove my primary tumor and the mesenteric tumor and two of the smaller tumors on my liver was performed on June 21st, 2012. It is the first day of summer, the longest daylight day of the year. It meant something to me, because I felt that I had been in such darkness for the two months prior to that, having been told I had a short time to live. And here we are, nearly two and a half years after that surgery, still with many tumors on my live, but still alive and kicking! LIFE is joyous… and we continue to wake up from time-to-time! 😉

    • Debbie Hooper

      So good to hear you are enjoying life despite the remaining tumours, I look forward to that day too, in the meantime, while I heal, it’s good enough to know I survived and have much to look forward to again.

  • Debbie Hooper

    Debbie Hooper
    Hi Ronny, it was good to read of your successful surgery. I too have just had major surgery to remove two thirds of my liver etc. I had a massive carcinoid crisis as soon as the operation started in spite of octreotide top ups to my lanreotide. I then had a cardiac arrest. I was very lucky, I had a superb surgeon and team who decided to continue with the debulking anyway. 9 hours later I came out to an incredibly grateful husband, daughter and son. That was on the 26th September. I am going back for another op to remove the primary from the small intestine ( which they decided against on the original op) on 24th November. This will leave me with 7 tumours on what’s left of my Left liver lobe. Tests have shown that these are currently inactive (very good news) my Oncologist was astounded to tell me my serotonin levels were normal at 29 when just a few short weeks earlier they had been over 1000. I will continue with lanreotide and maybe have some radiotherapy on the remaining tumours (lutetium dotate) in the new year. Did you or will you be having any radiotherapy and do you have any remaining tumours? What has your follow up care consisted of and any prognosis if you have been given any. I continue to grow stronger but of course can’t help having a bit of a melt down from time to time when there is still so much unknown.

    • sorry to hear about the crisis problems. I read a lot about that and am thankful to have never had any issues. My liver tumours appear to be stable. When you say ‘Serotonin’, do you mean either CgA or 5HIAA? No radiotherapy planned yet but waiting on investigation into new hotspot in thyroid. I am on Lanreotide with watch and wait surveillance (notwithstanding thyroid issue). I sometimes don’t think I’m ill at all (mostly). My surgeon thinks I’ll outlive him!

      • The regular tests I have are for 5HIAA. I’m due in on 24th to remove primary and the anaesthetist is deciding with my Oncologist if an infusion of Octreotide is warranted or just a single shot. So sorry to hear of thyroid hotspot, please keep us posted. It’s just very difficult to talk to anybody who really understands this cancer, knowledge appears to be hard to come by. Many thanks

    • Best of luck with your surgery on 24th, let me know how you get on. Keep as active as you can; and as soon as you can. They will introduce you to the physio earlier than you think!

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