Translate
Subscribe to Blog via Email
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?
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
Subscribe to Blog via Email
Thanks for reading.
I’m also active on Facebook. Like this page.
I’m also active on this Facebook page. Follow this page.
Also like this awareness page on Facebook.
Sign up for my newsletters – Click Here
My Diagnosis and Treatment History
Check out my online presentations
Check out my WEGO Health Awards
Like my new awareness page – click here or on the photo. (Like rather than follow please!)
Check out my Glossary of Terms – click here
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Sometimes, you gotta climb that hill, even if it hurts
I started my “sometimes you gotta climb that hill” series/campaign some years so. I used it as a metaphor based on my own experience of
A spotlight on duodenal Neuroendocrine Neoplasms (dNENs)
What are Duodenal Neuroendocrine Neoplasms (dNEN)? The duodenum is technically part of the small intestine, and you can find that in most anatomy-based descriptions. One
Neuroendocrine Cancer: Awareness is key, but it must be the right message
Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010. But it
Summary of May 2023 on RonnyAllan.NET
Summary May produced the best statistics in 2023, mainly due to your support for my blog post on Maria Menounos whose announcement headlined as “Pancreatic
Getting back in the saddle
Those who follow my Facebook page Ronny Allan may remember my cycling faux pas in April causing me to bruise or fracture a rib (here
Clinical Trial: Phase 1/2a Study of 23ME-00610 in Patients With Advanced Solid Malignancies (incl Neuroendocrine Neoplasms)
Who are 23andMe? I personally had not heard of 23andMe but many people in North America might have. When you first look at what they
A spotlight on Chromogranin A
What is Chromogranin A? Chromogranin A (CgA) is an acidic protein released along with catecholamines from chromaffin cells and nerve terminals. This statement alone might
Neuroendocrine Cancer: Catch them early, not late!
Diagnosing Neuroendocrine Neoplasms (NENs). It’s no secret that Neuroendocrine Neoplasms (NENs) can be difficult to diagnose, particularly well differentiated slow growing types (NETs) which can
A spotlight on Rectal Neuroendocrine Neoplasms
What are Rectal NENs Rectal Neuroendocrine Neoplasms (NENs) (rNENs) account for approximately 1-2% of all primary cancers in the rectum. The other main cancer types
A cup of tea
I would also mention those who contributed to my “Tea Fund” which resides on PayPal. You don’t need a PayPal account as you can select a card but don’t forget to select the number of units first (i.e. 1 = £4, 2 = £8, 3 = £12, and so on), plus further on, tick a button to NOT create a PayPal account if you don’t need one. Clearly, if you have a PayPal account, the process is much simpler
Through your generosity, I am able to keep my sites running and provide various services for you. I have some ideas for 2023 but they are not detailed enough to make announcements yet.
This screenshot is from every single post on my website and depending on which machine you are using, it will either be top right of the post or at the bottom (my posts are often long, so scroll down!)
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.
https://polldaddy.com/js/rating/rating.js
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 ☺