When I first created my blog in April 2014, I had to find some material to lead up to my 84 mile walk (at the time, it was a temporary vehicle for the single purpose of raising money for charity). An idea I had probably led to the longer term survival of this blog after people quite liked the descriptions of well known words used in NET parlance. I managed this using an A to Z list over approximately 26 days which was perfect for my timeline.
I gradually renamed those early blog posts and I just noticed that the “F words” survived and this is a remaster!
Enjoy the F words, I’m sure we have all used them many times 🤬😊
Flushing
In early 2010, I had been experiencing mild and infrequent warm feelings in my face and neck and I did notice a slight reddening whilst looking in a mirror when it occurred. It was odd and nothing like I had experienced before. I thought nothing of it, dismissing it as something to do with my age! When I was going through the diagnostic phase some months later, the Consultant who carried out the initial set of tests was interrogating me (literally) for any clues which could help him pin down the nature of my problem (I now know he had evidence of cancer but not the type). I ran through every single niggle and pain I had attributing most of them to age! Just as I thought the barrel was empty, I suddenly remembered about the flushing and mentioned it. Eureka.
Neuroendocrine Cancer is not that common. It can occur in various parts of the body. Some types present with vague symptoms but my type can present with something called ‘Carcinoid Syndrome’ which is even less common despite what you see in patient groups and advocate org websites (only affecting 10% of NETs). This syndrome includes (amongst others) a symptom of facial flushing invoked by the secretion of particular hormones from functioning neuroendocrine tumours. This syndrome which initially worsened, did not come fully under control until after my first major operation some 6 months later. At the time I was keeping my condition private in the workplace which led to some interesting conversations in meetings! Many people thought I had a blood pressure issue!
The treatment for this syndrome is a man-made drug type known generically as a ‘Somatostatin Analogue‘. Basically this drug inhibits the release of excess hormones and therefore reduces the effects of the syndrome (but also has some collateral problems). I now receive a monthly injection of this amazing drug which comprises a rather large needle in the ‘jacksie’.
Read more about NET related flushing by clicking here or on the picture below.
Fibrosis
One of the other strange behaviours of this type of tumour is that they can sometimes cause fibrosis, mostly mesentery and right sided heart, but it also and less commonly includes retroperitoneal fibrosis – again due to the release of excess hormones (mainly serotonin). In my case, the tumours had caused a dense fibrotic retroperitoneal reaction encircling my aorta and intravenous cava (biggest artery and vein in the body respectively) almost blocking the latter. I signed up to the risks for this ‘technically demanding’ phase of my initial operation and two surgeons spent 3 hours (within the 9 hour total time in theatre), dissecting this fibrosis achieving a 270 degree clearance freeing them up and re-establishing normal flow.
Read more about NET related fibrosis by clicking here or on the picture below.
More F words
Ronny Allan’s The A to Z of Neuroendocrine Cancer
Disclaimer
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me.
Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional.
Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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Ronny
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Reblogged this on Tony Reynolds Blog.