Surgery for Neuroendocrine Neoplasms – to cut or not to cut?
Surgery can sometimes be a tough call (......to cut or not to cut?) I see a lot of patients asking very specific surgical questions in my group (and also direct messages to me). Some ask outright "should I get surgery" and that is a very difficult question for anyone to ask, and should be something directed at their own doctors. If they lack trust in their doctors, they should seek a second opinion. All I can do, along with others in my private patient group, is to let these people know about our own experiences. 'To cut or not to…
Serotonin – the NET effect
BackgroundI'd never heard of Serotonin until I was diagnosed with Neuroendocrine Cancer in 2010. It is frequently discussed, often with contrasting views from the respondents. One common assumption/question is that it is responsible for many things that can go wrong with Neuroendocrine Cancer patients who have serotonin-producing tumours. To a certain extent, that's true but statement such as "it's the hormones" is an easy assumption to make; or an easy answer to give in response to a complex set of circumstances. It's difficult to get a definitive answer and the science behind the behaviour of our hormones isn't really 100%…
“What are you doing this afternoon”
On 8th July 2010, I was sat in front of a secondary care consultant. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this "non-issue" was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour - after all, in my head, I wasn't actually ill..... two months…
Surgery is risky but so is driving a car
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,…
Neuroendocrine Cancer: Fibrosis – an unsolved mystery?
What happened to me?Since I was diagnosed in 2010, I've always known about a fibrosis issue in my retroperitoneal area. It was identified on the very first CT scan which triggered my diagnosis. Here's how the radiologist described it - "There is a rind of abnormal tissue surrounding the aorta extending distally from below the renal vessels. This measures up to 15mm in thickness". Followed by a statement saying that it was "almost certainly malignant". The second and third scans would go on to describe as "retroperitoneal fibrosis" and "a plaque-like substance". Interestingly the fibrosis itself does not appear to…
Neuroendocrine Cancer – Clinical Esoterica
The good news ....... things are improving, the latest US figures confirm two major changes:1. Most diagnoses are now early stage2. The disease is no longer rare and no longer an orphan diseaseOne of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after.Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or…
20th November 2010 – feeling perkier
Every year I cast my mind back to this time in 2010. Diagnosed on 26th July that year, I was in hospital from 8th - 26th November, an extended period due to complications. At that point, I had been keeping my diagnosis within close family and friends and my manager at work. People at work and my wider list of friends were probably wondering what was going on with me. Cleary, I let my emotions slip by posting this on my personal Facebook profile on 20th November 2010. Perhaps this was my way of opening up. To be honest, the first…
Neuroendocrine Cancer Hormonal Syndromes – a witch’s brew
One of the key awareness messages for Neuroendocrine Cancer is the hormonal syndromes that can often accompany the diagnosis for many people. As it's a difficult disease to diagnose, many people struggle with these syndromes for some time before formal diagnosis of Neuroendocrine Cancer. Some continue to struggle after. Neuroendocrine Cancer can often be uncannily quiet, but the tumours can be 'functional' and over-secrete certain hormones to add or introduce symptoms that mimic many other diseases or conditions, such as Irritable Bowel Syndrome, Menopause, Heart disease and Asthma. In addition to common symptoms of flushing and diarrhea, others include…
Does your body now have an extra organ? The MESENTERY
One of the very first words I heard at diagnosis was the word "Mesentery". In the news today is the announcement that is now might just be a new organ following accepted findings from research conducted in the University of Limerick Ireland. I always knew it was something which held the small and large intestines in place within the abdomen so like many others, I just thought it was some kind of membrane type structure and I also knew there was some kind of interaction with the peritoneum, another word which I was to become familiar with. This is an important area…