At the end of 2014, I was feeling pretty good celebrating 4 years since my first ‘big’ surgery in 2010. It prompted me to write an article Surgery – the gift that keeps on giving. In that particlar article, 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. 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. Some of the surgeries involved with NETs are not normal for the area of the anatomy involved. Take my own primary as an example where I wrote this explanation of something described as “not normal bowel surgery” – Small Intestine, Large Surgery
It’s very well known that NETs can present a major challenge to physicians in their recognition and treatment requirements. For example, NETs can cause various syndromes, not only for requiring treatment for primary and loco-regional tumours to minimise the risk of abdominal complications and future growth; but also for removal of tumour including liver and other metastases to palliate hormonal symptoms. Some tumours can be quite large and require extensive surgery to remove.
I searched reputable websites and European and North American NET treatment guidelines to find that surgical treatment of these tumours still appears to remain an important intervention, 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 including PRRT, liver embolisation, liver ablation, somatostatin analogues and other new drugs, some with chemo combinations), surgery still appears to be the mainstay treatment to be offered when it is appropriate. For some it isn’t appropriate or will be held in reserve for watch and wait scenarios or as ‘adjuvant’ treatment downstream. On paper, it appears to be the only current option for a curative scenario if the cancer is caught early enough.
I had an amazing surgeon with an impressive CV in Neuroendocrine disease. Mr Neil Pearce of Southampton UK believes in early and aggressive surgery (within normal guidelines) and always in conjunction with other treatment modalities and only when required. I found a video of one of his lectures which you may find useful. Another surgeon who talks with knowledge and passion is Rodney F. Pommier, MD of Portland, Oregon 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 can often offer a better outlook even for those with advanced neuroendocrine disease.
I think I have a soft spot for surgeons – 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 – Nicholas Nissen, MD from Cedars Sinai, LA, California. This one contains amazing footage of real surgery and if you are like me, you will find this very educational. It’s also fairly recent (2015) so perhaps offers more up to date techniques. It’s also a very well-structured presentation. Some of you may 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). There’s another one here from the same surgeon in 2016 covering a wider abdominal area – (Click here to watch).
Here’s another well-constructed video by Dr James Howe at a NET Research Foundation conference – click here
Hope you enjoyed this session as much as I enjoyed writing it?
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P.S. Just found the date on the page from your email, this is from 2015. Would you say the information is still accurate today?
I tweak articles as I find new stuff. Surgery takes longer to change
Hi Ronny. Thank you for these articles. Is there an easy way to see the date of the article? Is it possible to add the date by the title? For example, is this a recent article?
Thank you.
All articles have dates?
Hi Ronny, thanks for all your hard work. It’s so appreciated. When I was 37 I was diagnosed with NET well differentiated, primitive on the left lung, metastasis in the liver, spleen and bones. So G2 IV. Ki69 is now 18% (liver biopsy December 2018), the first liver biopsy back in 2015 ki69 was 5% but they explained to me that each tumor can have different ki69. I’ve been on Ipstyl from 2015 to mid 2018, it was stable, then in April 2018 the scan revealed a progression of the metastasis in the liver and spleen. The primitive in the lung and those in the bones still stable. I started temozolomide for 6 months but the progression did not stop so new biopsy (dic. 2018) stopped temozolomide and added afinitor/everolimus to ipstyl. I always wondered why they wouldn’t remove surgically the tumor in the liver and the spleen (the biggest is 5 cm) and they said it wouldn’t make a difference cause I had the one in the lung and the ones in the bones. I’m not an oncologist so I obviously do what they say. After seeing this Video I was wondering if I should ask the opinion of a surgeon as well. Maybe the Oncologists r not too keen on surgery and prefer treatments? But since I’m in “perfect health” now : blood tests r ok, my kidney r perfect, I’m strong, no symptoms, no side effects from treatments, I sometimes think I’m strong enough now to undergo surgery now, what if I get weaker, my kidneys start suffering the treatments etc and then I would be less strong to face surgery? It’s driving me crazy, I want these beasts out of my body, they’r ruining my mental health cause I think of them 24/7. And what drives me mad is that I have no symptoms at all, I look perfectly healthy, feel healthy and yet the tumor is progressing only in the liver and spleen, so I don’t really understand why they wouldn’t take them out 🙁 . Sorry I probably said a lot of stupid things, but I’m so tired and depressed. I live and get treatment in Italy. Thank you. I know u can’t tell me what to do, I probably just needed to speak with someone who knows what I’m going through. A big hug.
I understand the issues. Oncologists often think a watch and wait approach is better for quality of life, give that these tumours tend to grow slowly. However, another thought is that removal of tumours can often result in a better quality of life if someone is symptomatic (syndrome) and some might say it can extend life. And you’re correct that it is better to do surgery when you are strong, age and general condition is a factor for deciding surgery or not surgery. I can only suggest you get a second opinion. I don’t know how it works in Italy. I have a Facebook group with some Italians on there if you wanted to speak to other patients.
Very informative Ronny 😄
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!
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?
Ronny
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