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Ronny Allan
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.
Visualising NET metastases in the liver
Liver NETs can often be difficult to see and there is some potential for false positives on imaging e.g. cysts and haemangiomas. However, NETs are known for their hypervascularity, and imaging techniques can often take advantage of that. Most liver metastases will have been found by CT with IV contrast where they will show as hyperenhancing lesions. However, what is not that well known is that they are best seen in the arterial phase of a triple phase CT scan. You can read more about some my own experience of surveillance since 2010 – click here.
MRI is the best conventional study to detail hepatic metastases in NETs although not as good as the CT for some primaries including the GI tract and mesentery lesions.
Ultrasound is another method and as most liver biopsies use ultrasound to guide the tissue removal, the visibility must clearly be acceptable – but in general, they are otherwise only useful for estimating hepatic tumor burden. It was a useful tool during my liver surgery as per above.
Somatostatin Receptor PETs are great for seeing somatostatin receptor (SSTR) positive tumours but physicians and radiologists must be aware of various physiologic and other pathologic processes in which cellular expression of SSTR can result in interpretative error.
Other surgery blog posts which may be of interest (click on the titles below):
Surgery for Neuroendocrine Neoplasms – to cut or not to cut?
Small Intestine Neuroendocrine Tumours (SI NETs): To cut or not to cut?
Pancreatic Neuroendocrine Tumours – to cut or not to cut
Now you see them now you don’t
LIver Lesions – something or nothing?
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Hi Ronny,
Thanks for your blog. It is so helpful to so many. I had a 16cm PNET removed in 2015 and lanreotide as well as PRRT in 2019. PRRT didn’t do much. I met with a surgeon at Mayo clinic who thought removing 70% of my liver in the next 6 months as well as a tumor in may left retroperitoneal would be the next move. I have around 20% liver load. The surgeon is very experienced but does not do laparoscopic procedures. Any thoughts? It sounds like you had 66% of your liver removed so I would sure appreciate your input. Thanks for all you do!!
it’s all about confidence in your surgeon. I was lucky because I had one of the best surgeons in the UK, he was particularly experienced in upper GI area and was a laparoscopic expert. He had conducted a big open surgery 5 months prior to my liver resection, thus the choice of keyhole. There are statistics in guidelines that liver tumours are worth debulking if you can reduce tumour burden by 90% – although there’s talk of reducing that to 70%. All surgery has risks but liver surgery seems to me to be lower risk than in the GI tract. The left retroperitoneal is a bit trickier – as I understand it’s behind the intestines. Whatever you decide, my best wishes
Thank you so much for sharing your story! It definitely gave me hope after being diagnosed with Stage 4, metastatic NET, grade 2 late last year 2019…
What has held your tumors in the liver stable? The monthly shots only, or did you get other medical treatment as well?
I had a liver embolization prior for surgery. Other than that, just Lanreotide
Thanks for sharing your stories and Im so glad I was told about your blog. Before this I felt alone with my cancer! Good luck to you and your health.
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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
Glad you found someone. My own surgeon was known to tackle surgeries others would not. Hope Mark’s doing well.
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
Pleased for you both 😃
I think you share great hope with your stories and the accuracy of your information is such a benefit to many.
Thanks ☺