Surgery is risky but so is driving a car


surgery

I enjoyed reading the recent blog 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 able to discuss these risks with their doctors.

This got me thinking about my own experience which goes back to the autumn (fall) 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).  Another difficult issue for NETs can be the decision to cut or not to cut – as outlined in this article.

NETs are not that much different to other Cancers in this respect – there is always a 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 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“.

What also caused me to smirk was my surgical labelling as a “young, slim and fit man”. I was then 55 years old, slightly heavier than I thought I should be and although I had been fit for most of my life, I wasn’t that fit 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 that age, weight/BMI and level of fitness are risk factors for surgery.

risk

I don’t want to get too deep into the moral and ethical dilemmas faced by surgeons but Dr Liu’s very honest blog and 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.

I clearly survived but to be honest, it was a tough period.  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 desmopasia (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 some pain. 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.  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 it was a breeze and I was home after 6 days.

Yes, surgery comes with risks – sometimes they are realised, sometimes they are not.  Action planning to counter the common risks if realised is no doubt sensible (and I suspect already part of surgical procedures and training). However, as Dr Liu says, there can be unforeseen circumstances in the course of the operation and recovery.

Almost 8 years on from diagnosis, I’m certain the two major surgeries have played a big part in keeping me alive and as well as can be expected.  For me surgery remains the The Gift that keeps on Giving.  If you have time, I also published a blog Surgery for NETs – Chop Chop! which contains links to surgeons talking about surgery for Neuroendocrine Cancer.  There are also links to some surgical videos – I personally found them fascinating.

Thanks for reading

Ronny

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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

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Chasing normality

Chasing NormalityCancer isn’t always a one-time event. It can be a chronic (ongoing) illness, much like diabetes or heart disease. Cancer can be closely watched and treated, but sometimes it never completely goes away. The cancer may be ‘controlled‘ with treatment, meaning it might seem to go away or stay the same, and it doesn’t grow or spread as long as you are getting appropriate treatment. Sometimes the treatment shrinks the cancer, but the cancer is still there – it doesn’t go away and stay away – it’s not cured.  More people are living with cancer than ever before and the ratio is on the increase thanks to better treatments.

For the first 18 months following my diagnosis, I underwent a significant number of treatments and tests.  As I continue living with my cancer, that tempo doesn’t seem to have gone away.  Every 6 months (and sometimes in between too) I undergo a plethora of tests and appointments.  Some tests are annual.  I feel I’m stuck in this perpetual surveillance world – sometimes I’m not sure what to expect or what’s going to happen next!  I suspect this is the case for many Neuroendocrine Cancer patients.

I saw a post on one of the forums last week – the question was “what does stable actually mean”. The answer may seem obvious but one reputable website defines it as follows “A doctor may use the term controlled if tests or scans show that the cancer is not changing over time. Another way of defining control would be calling the disease stable“.  Worth noting that “not changing” can also mean ‘not decreasing’.

It’s 2 months until my next Multidisciplinary Team (MDT) and if I was a betting man, I would guess they will say “stable” having confirmed no remnant tumour growth and my blood and urine tests will be “unremarkable” (don’t you just love those medical terms!).

So is this normal?  I guess it could be for me but I like to tie quality of life into my ‘normal’ definition.  I also think that living with an incurable cancer is not so much about “getting back to normal” but rather what’s normal for me now (i.e. I can’t put back bits of my small intestine back in!).  As I’m tying this into quality of life which is something I’m constantly trying to improve, I must therefore be constantly trying to improve my ‘normal’. I guess for me, normal isn’t really a static thing.

Being stable and finding a new normal doesn’t mean you don’t need support.  The surveillance scans and tests are a given but the support isn’t always there in the quantity and quality you might like.  I may be stable but I still need support and often this can only be acquired by being a proactive patient.  I have a number of ongoing issue which might present bumps on the road ahead (at least the ones I can see) and these present a challenge to my normality.

  1. Thyroid lesion (ongoing).  Although it has not grown since discovered. Watch and wait.  Check out my Thyroid blog for the full story.
  2. I’m on long-term blood thinners (Clexane) due to the discovery of blood clots in one of my lungs following major surgery in 2010.  To keep an eye on the risk of developing osteoporosis arising from long-term use of this drug, I have an annual DEXA scan which measures bone density. My last scan indicated a slight reduction (nothing drastic).  I’m not getting any younger, so my bones are starting to ‘moan’ a little.
  3. I’m not syndromic but I do have some post surgical side effects.  Anyone who’s had classic NET gastrointestinal or pancreatic surgery will know the issues. It’s a constant battle but I’ve made some improvements by understanding why these side effects occur and taking action to reduce their impact.  For example, since my ‘turning point’ in 2014, I’ve managed to reduce bathroom visits by 300%, so things are pretty normal frequency wise.  I continue to work on this.  Small intestinal bacterial overgrowth  (SIBO) is something I’d like to explore with my MDT, particularly as a big increase in my probiotics dose made a difference. Check out my Nutrition series of blogs.
  4. My fatigue levels are vastly improved since my 2014 turnaround and I put this down to my turnaround changes in the last two years including keeping active and reducing stress levels.  I continue to work on this too.

A new normal can be found.  They can be improved.  However, they need to be guarded by being proactive and positive.   And …. it’s not the same for everyone.

Thanks for listening.

Ronny

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