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I woke up on NET Cancer day

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what I mainly remember was my wife Chris holding my hand which gave me a great deal of much-needed comfort and security

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 by the dozen or so ‘connections’ to my body. 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 good.  A liver biopsy graded one liver tumour sample at Ki-67 5+. 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. The specialist scans (crucially) confirmed my tumours were ‘avid’ to a substance known as Octreotide which is a type of drug called a somatostatin analogue. The scan also confirmed I had more tumours than initially thought.  This was key to working out my treatment plan.

When I presented in July 2010, Although I hadn’t realised, I was showing symptoms of carcinoid syndrome although mainly flushing but thinking back, there was some diarrhea albiet infrequent.  The subsequent specialist blood and urine tests (CgA and 5HIAA respectively) were way out of range confirming the diagnosis.  The elevated readings were due to the tumour bulk and excessive secretion of specific hormones which is one of the facets of metastatic carcinoid.  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 Carcinoid 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 2.00-2.30pm – about 3 hours later than planned (it was worth the wait because I’m still here!).  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 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.  Thank goodness I was asleep 🙂

In those days, I had no idea that 10th November was NET Cancer Day. Some 6 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!

However, for me now, EVERY DAY IS NET CANCER DAY

 

 

Thanks for reading
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8 Comments

  1. Coral says:

    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! 😉

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  2. spudders says:

    Wow! Scary times for you and Chris. Glad it all went well. Those surgeons deserve absolute respect for their great work.

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  3. Debbie Hooper says:

    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.

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    • ronnyallan says:

      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!

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      • 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

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    • ronnyallan says:

      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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