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 – the diagnostic scan confirmed I had an incurable disease. 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 with 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 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 my initial surgery as there was an option to look at the liver whilst I was ‘open’. However, after 9 hours of sorting out my other areas including a significant chunk of time looking at my retroperitoneal fibrosis, 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 which took place on 12 Apr 2011. The ‘luck’ word has to be mentioned again because my local NET MDT was at the time led by Mr Neil 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!  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.

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 the primary surgery. 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-centimeter “deposits”. Interestingly he said the pattern of disease was more conspicuous on intra-abdominal ultrasound than it had been on previous scans. 

I recovered quickly after only 5 days in the 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 the resected liver.

A follow-up chemoembolization 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 primary surgery.

I still have some residual (but stable) disease on my liver but there has been no real progression since – in fact I met Neil Pearce in 2018 and he’s surprised there hasn’t been progression – I hope to keep surprising him. It’s no secret that debulking or cytoreductive 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. 

Despite being clearly seen on CT at diagnosis, my remnant liver mets appear to be better seen on Ga68 PET/CT than on standalone CT – read about why this might be here.