
Ronny Allan
I enjoyed reading an article written by Dr Eric Liu entitled The Complications of Surgery. In his article, Dr Liu, himself a surgeon, explains that surgery comes with risks, and patients should be made aware and be able to discuss these risks with their doctors. This got me thinking about my own experience which goes back to the autumn of 2010 when I first met my surgeon. At that time, there were a few articles about whether surgery or ‘biochemistry’ was the best treatment for certain types, grades and stages of Neuroendocrine Tumours (NETs).
To some extent, these debates continue, particularly for pancreatic NETs. Surgery for certain NETs in certain scenarios is a controversial issue for NETs – as outlined in this article – to cut or not to cut. I’ve read many stories about people being told they were inoperable only to find that other surgeons were happy to undertake the surgery. I suspect there are often a number of issues including the availability of the necessary skills but also the necessary knowledge about debulking in NET cases which may not be offered in other cancers (normally more aggressive types). That said, there is always a fine balance between maximizing QoL and extending life. I was very lucky that I lived on the south-central coast of England because the local Neuroendocrine Cancer expertise was (and still is) one of the best in the country. After the initial diagnosis, I was followed up with more specialist tests and then offered multimodal treatment including surgery. The risks of surgery were always fully explained to me. In any case, I had to sign the consent forms where they were listed! Not sure why but I couldn’t help laughing (probably nervously!) when I noted that ‘death’ was one of the risks. It didn’t put me off and I told him to “get on with it” – I think we naturally trust doctors. But I had a good reason for my trust, he was one of the most brilliant surgeons in the UK with a reputation for taking on tricky jobs.
What also caused me to smirk was the surgical labelling of me as a “young, slim and fit man”. I was then 55 years old and didn’t feel young! I also felt I had lost some of my ‘slimness’, and although I had been ‘fit’ for most of my life, I wasn’t as fit as I could (and should) have been at the time of diagnosis. However, my surgeon was clearly doing his own risk assessment and I seemed to tick all the boxes to be able to withstand what was to be a fairly rigorous 9 hours on his table. However, it was clear to me from the conversation that age and general condition were risk factors for surgery. I don’t want to get too deep into the moral and ethical dilemmas faced by surgeons, but my own patient experience highlights the need, not only for a two-way conversation between surgeon and patient but also the need for informed consent. Older patients or patients in a weak condition may not be able to tolerate the surgery or the side effects that it could produce.
I clearly survived but to be honest, it wasn’t a walk in the park. During my first major operation, some risks were realised resulting in a much longer stay in hospital and some effects are still present today. Many of the risks involved the dissection of desmoplasia (fibrosis from NETs) around the aortic area (read more here). The planned 10-day stay was extended to 19 due to a suspected infection (elevated white blood cell count) and a post-operative seroma (a pool of ‘liquid’) which was causing pain (read about this here). The white blood cell count eventually settled down but for the post-operative seroma, I was subjected to a CT-guided needle aspiration which was great fun to watch. Fortunately for this short notice and risky procedure, I was in the hands of one of the best Interventional Radiologists in the country (more luck). Some six weeks after discharge, a follow-up scan spotted Pulmonary Emboli (blood clots) on one of my lungs and I’ve been on blood thinning treatment ever since. I returned to the same surgeon’s table 4 months later for a liver resection using laparoscopic techniques (keyhole). Again, the risks were explained but, in the end, it was a breeze compared to my first encounter and I was home after 6 days.
Yes, surgery comes with risks – sometimes they are realised, sometimes they are not. What is equally important is the action plan to counter the common risks. I’m sure this is part of surgical procedures and training. My own surgeon once told me that sometimes the pre-surgical risk analysis changes once ‘inside’. However, as Dr Liu also confirms, there can be unforeseen circumstances in the course of the operation and recovery. These are not just the additional complications to be considered with Neuroendocrine disease, not least the peri-operative requirements to prevent the hormonal crises, these are issues that can present in many surgeries undertaken for many conditions. It’s one of the reasons why major surgeries need a period of critical care immediately after the procedure. Often beyond that critical period, issues can still present – in my own case, the post-operative seroma and the blood clots are examples. Fortunately for me, these unforeseen circumstances were quickly dealt with. The former resulted in a risky procedure while I still had several post-operative ‘input/output’ tubes doing their job, an added complication. The latter was resolved by speedy administration of anticoagulants, which unfortunately I still take today. These issues also emphasise the importance of a multi-disciplinary team approach to preoperative, perioperative, and postoperative problems in addition to decisions on treatments plans and operative monitoring, for example, anesthetists and interventional radiologists. Unfortunately, despite the most extensive planning, preparation and monitoring, and herculean efforts by healthcare professionals, unforeseen circumstances can sometimes lead to patient morbidity – there is no totally risk-free surgical procedure.
Since my diagnosis in 2010, I’m certain the two major surgeries have played a big part in keeping me alive and as well as can be expected, despite the consequences of the treatment. Given the extent of my disease, the decision to cut or not to cut was probably easier than some. One thing I’m also certain about is that without a diagnosis and therapeutic intervention, I would have eventually ‘keeled over’ and died or at best presented as an emergency. For me, surgery remains The Gift that keeps on Giving. If you have time, I also published an article Surgery for NETs – Chop Chop! which contains links to surgeons talking about surgery for Neuroendocrine Cancer. There are also links to some surgical videos. Since this article was published, I’ve also written “to cut or not to cut” articles for pancreatic NETs and Small Intestine NETs.
Surgery is risky but so is driving a car. We know driving a car is risky and we assess these risks every time we get behind the wheel – we have no control over external factors but useful to be aware of the likelihood to anticipate events. It’s the same with surgery to a certain extent, in fact, more so.
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Thanks for the article. My partner had surgery recently and is still in the hospital a month later with some of the same complications you had. If you don’t mind sharing, what kind of drugs do you take for blood clots? They’re telling him he may need to do self injections several times a day for the rest of his life. Are there other options?
I’m currently on a pill called Eliquis (Apixaban) but before that I had to self inject Clexane (Enoxaparin sodium) once a day.
Very informative. Thanks for sharing.
Reblogged this on Tony Reynolds Blog and commented:
Really worth reading. True to life stuff, that could be very helpful even if you or friends/relatives are not ill at the moment.