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Surgery for NETs – Chop Chop

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Carcinoid liver tumour debulking

Carcinoid liver tumour debulking

At the end of last year, I was feeling pretty good celebrating 4 years since my first ‘big’ surgery in 2010. It prompted me to write a blog – Surgery – the gift that keeps on giving. In that blog I really just wanted to say I was grateful for the early surgical treatment and as I was just about to spend another Christmas with my family, I was reminiscing what a wonderful gift it was at the time……….and of course it remains so today. Other than some detail of the surgery, I didn’t get too technical, I just wanted to generate a thankful and festive mood. However, a recent private message from a subscriber prompted me to study the current benefits of surgery for Neuroendocrine Tumours (NETs) in more detail just to ensure my understanding was still in line with best practice.

It’s very well known that NETs can present a major challenge to physicians in their recognition and treatment requirements.  Midgut NETs (carcinoid) are the most common cause of carcinoid syndrome, requiring surgery for primary and mesenteric tumours to minimise the risk for abdominal complications and future growth; but also for removal of liver metastases to palliate hormonal symptoms. Among pancreatic neuroendocrine tumours (pNETs), insulinoma and gastrinoma often cause severe symptoms of hormone excess despite their inconspicuous size, but they can be successfully removed with improved pre- and intraoperative localisation. Other tumours–glucagonoma, VIPoma, and non-functioning endocrine pancreatic tumours–are often large or metastasising, but generally require surgical debulking to alleviate hormonal symptoms and have favourable survival.

I searched reputable websites and European and North American NET treatment guidelines to find that surgical treatment of these tumours still appears to be increasingly important and not just for curative treatment (where this is possible) but also for symptom palliation and survival. Although more treatment modalities are available than ever before (e.g. radiotherapy, liver embolisation, liver ablation, somatostatin analogues and other new drugs and chemo combinations), surgery still appears to be the mainstay treatment to be offered when it is appropriate.

I had an amazing surgeon with an impressive CV in Neuroendocrine disease.  He believes in early and aggressive surgery (within normal guidelines) and always in conjunction with other treatment modalities.  I found a video of one of his lectures which you may find useful.  Another surgeon who talks with knowledge and passion is Dr Pommier and one of his videos can be viewed here. I’m sure there are many others.   They are different characters but they both seem to believe in getting as much tumour out as early as possible and also emphasise that sometimes it can be too risky so the focus moves to other treatment.  Both presentations provide statistical evidence that debulking/cytoreductive surgery offers a better outlook even for those with advanced neuroendocrine disease.

I think I have a soft spot for surgeons probably because they are mostly straight talkers, no holds barred.  They also seem to love their job despite it being particularly ‘gory’.  On the subject of ‘gory’, I recently came across another surgical video which I found totally fascinating.  This one contains amazing footage of real surgery and if you are like me, you will find this very educational. It’s also quite recent (2014) so perhaps offers more up to date techniques. It’s also a very well structured presentation. Some of you might have seen it before and some of you could even have even been at the presentation! If you don’t have time, skip forward to approximately ’19 minutes’ and watch them take out large and small tumours of the liver using a technique called enucleation!   (Click here to watch).

Hope you enjoyed this session as much as I enjoyed writing it!


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My Diagnosis and Treatment History


  1. zebrakat says:

    Very informative Ronny 😄


  2. Saudade says:

    Thank you so much for this great session, Ronny! It was really educational. I often wonder, especially when I read your brilliant posts, until what extent the doctors here really did everything they could for my twin sister. This thought consumes me since I lost her… Thank you for your amazing work! A lot of doctors, especially here in Portugal, could learn a lot from you!


    • ronnyallan says:

      Dear Patricia, I’m so sorry you might be thinking that but please bear in mind that not all patients can be treated with surgery, there are so many factors involved. I know I make it sound simple sometimes but it is almost definitely very complex and this may have been the case with Susanna.

      I would like to think that doctors will do everything they can to save a patient. Hopefully through our blogs we can spread awareness of this terrible disease which in some way might help patients get the treatment they need quicker and more efficiently?


      Liked by 1 person

      • Saudade says:

        Dear Ronny, I’m so sorry for the late reply. Thank you so much for your wonderfully kind words regarding Susana. I really hope so… I think I have this feeling of being powerless and that they didn’t do everything they should because of this horrible feeling of loss of my best friend, and sister and because I wished a different “story” for my twin. It’s so painful and confusing at the same time, you know? I wish I was certain they did everything. I wish I knew more about NET cancer when everything happened. Susana said that she wanted to get treatment in the UK, but we didn’t have enough time for that. Next week it will be a year since we lost her, and I miss Susana so much everyday. You make such an outstanding difference as a patient and also as an advocate for this cause! Reading your posts always makes me feel a bit better because you are making such a huge difference in raising awareness for this horrible disease that took away my wonderful twin before her time. I long for the day when I’ll be able to be strong enough to travel again, and hopefully tell you in person how much I admire you for what you do. I hope to also help in a smaller way to bring awareness to this awful disease so that more patients can get treatment sooner and more efficiently. Thank you for inspiring me in my daily struggle.
        Patricia x


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