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5 years since liver surgery

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flc9jdhxzzs4z2m.jpgFrom 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 in this area.

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′. This occurred in Nov 2010 and I blogged 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 should 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 disease was described as significant on inspection but 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.

I recovered quickly after only 5 days in hospital and was back at work in 3 weeks.  My next Chromogranin A had 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 5 years.  It’s no secret that debulking or cyto-reductive surgery can be of benefit even to those with advanced or metastatic Neuroendocrine disease.  I remain thankful for the care and attention I received in the months after my diagnosis.

Thanks for reading

Ronny Allan

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6 Comments

  1. donna head says:

    Hi Ronny,
    My husband had an 8 cm neuroendocrine tumor in his pancreas, which reduced in size to 5.9 cm after 9 months of CAPTEM oral chemo and SBRT (radiation). Our surgeon still would not do the whipple operation on him because the tumor was encasing both the SMV and the SMA, and they knew they probably could not get it 100%. We did a little searching around, and found a surgeon at Johns Hopkins Hospital, Dr. Makary, who not only did the Whipple, but told us that in the case of neuroendocrine tumors, it is definitely beneficial to debulk the tumor. Fortunately Marks tumor is a low grade (slow growing) tumor, so by removing so much of it will hopefully buy us lots more time before it rears it’s ugly head again!!
    Thanks for your advocacy-I enjoy reading your blog!
    Donna from Rochester, NY

    Liked by 1 person

  2. Irene says:

    Hi Ronnie, My husband had 2 liver embolisation last year. The first one he reacted badly to and was very poorly. The second one was better. He has been having sandostatin for 18 months now. The last scan showed a 15% reduction in tumors and he feels well at the moment. Unfortunately the late diagnosis resulted in some tricuspid heart valve damage but no need for surgery at present. Christie have been great and the NET nurse specialist has arranged for the injections to be delivered to our home address so the GP’S can do them. Next scan is May so fingers crossed. It almost feels we have our lives back again and there is a small light at the end of the tunnel.
    It helps to keep positive and your blog has been so helpful.
    Hope things go well with you. xx

    Liked by 1 person

  3. j. borden says:

    I think you share great hope with your stories and the accuracy of your information is such a benefit to many.

    Liked by 1 person

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