Endoscopy for NETs – taking the camera to the tumour

Endoscopy for NETs – taking the camera to the tumour

Awareness, Living with Neuroendocrine Cancer, Technical NETs
An Endoscopy is a procedure where the inside of your body is examined using an instrument called an endoscope. This is a long, thin, flexible tube that has a light source and camera at one end. Images of the inside of your body are relayed to a television screen. Endoscopes can be inserted into the body through a natural opening, such as the mouth and down the throat, or through the bottom.  The mouth route is more accurately called a Gastroscopy and the anal route is called a Colonoscopy (or a reduced version called a Sigmoidoscopy).  An endoscope can also be inserted through a small cut (incision) made in the skin when keyhole surgery is being carried out. Gastroscopy During a routine 6 monthly check-up at the end of 2016, I mentioned to…
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Happy Thanksgiving

Happy Thanksgiving

Diet and Nutrition, Living with Neuroendocrine Cancer, Technical NETs
Just a note to say Happy Thanksgiving to my friends in USA or who may be celebrating it elsewhere.  I am so thankful for the support I get from the US who make up the biggest proportion of subscribers to my blog and associated Facebook page.  So I'm thinking of y'all today! Now ........ I hate to stereotype but I guess a lot of you might be eating turkey today?  No Thanksgiving is complete without a turkey at the table (... so I'm told!).  And also a nap right after it’s eaten..... right? As you know I like to analyse such things ...... Apparently, the meat has a bad reputation for making eaters sleepy, but is there really science to back that up?   My google alerts feed increases around this time of…
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I’m only as good as my last scan

I’m only as good as my last scan

Living with Neuroendocrine Cancer, Survivorship
[caption id="attachment_5240" align="aligncenter" width="600"] Scanning - a piece of cake![/caption] "I'm only as good as my last scan". I received this comment last week in response to one of my posts and I thought it was a very pragmatic thing for someone to say. A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5HIAA are clearly useful but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and a scan is normally the confirmation required whether it's a CT, MRI or PET (etc). IF YOU CAN SEE…
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Neuroendocrine Cancer – my initial surgery – a patient experience (part 2)

Neuroendocrine Cancer – my initial surgery – a patient experience (part 2)

Technical NETs
  [caption id="attachment_8022" align="aligncenter" width="2048"] Surgeon Mr Neil Pearce and Interventional Radiologist Dr Brian Stedman[/caption] The surgery on 9 Nov 2010 had lasted 9 hours but according to my surgeon Mr Neil Pearce, I tolerated it well.  My first week was quite tough and I outlined how this went in my blog 'patient experience' part 1.  If you've not read it yet, please click on this link before reading any further. By this stage of my stay, I'm now minus most of the temporary tubes attached to my body, a good sign of recovery. The one which seemed to offer me the greatest freedom when removed, was the urine catheter. It doubled my speed down the hospital corridor during my daily exercises.  It was also so much easier to get to the toilet, a much frequented…
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Neuroendocrine Cancer Surgery – a patient experience (part 1)

Neuroendocrine Cancer Surgery – a patient experience (part 1)

Living with Neuroendocrine Cancer, Survivorship, Technical NETs, Treatment
[caption id="attachment_4373" align="aligncenter" width="678"] Chris and I with our friend and hero Mr Neil Pearce - my surgeon.[/caption] First Surgery - 8th - 26th November 2010 Memories of my 18 day stay in hospital from 8 - 26 Nov 2010, are not only reminding me of how important that particular treatment was to be, but also how surreal it felt at the time. Some of it is still a blur, particularly the early days where the morphine was in control.  For many NET patients, surgery can be a mainstay treatment, even for those with metastatic disease.  In fact, I now know from my own research that NETs is one of a small number of cancers for which surgical debulking can in many cases confer some survival advantage in a metastatic…
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Screw that diagnosis and get on with it!

General
  [caption id="attachment_3902" align="alignleft" width="300"] Screw that diagnosis and get on with it![/caption] Every now and then I see a positive story during my travels around the internet.  When I saw this one from K**** in Pennsylvania, I had to share.  If you're feeling a little bit down and need cheering up, dig out this blog and take a read :-) K**** wrote: "I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43.  I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life. But, things get in the way and can get bumpy - cancer, being one of them (and a now, 16yo…
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Please flush after use!

Please flush after use!

Awareness, Diet and Nutrition, Humour, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
In the past couple of years, I've read so many stories about the quite natural act of using a toilet (.....some more repeatable than others).  I think if there was a 'Bachelor of Science degree in Toiletry', I might pass with First Class Honours. I jest clearly but it's strange that such a routine activity for most can actually become quite scientific in the world of Neuroendocrine Cancer and other ailments which might be described in some scenarios as invisible illnesses. I also found myself smiling at the fact that flushing is connected with the toilet and a type of red warm feeling in the upper torso - the two main symptoms of the Carcinoid Syndrome associated with the most common type of Neuroendocrine Cancer.  "Please flush after use" - erm...yes sure but actually -…
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No Fear

No Fear

Inspiration, Survivorship
It's that time again, every 6 months I need some checks. I've done the specialist blood test (Chromogranin A - CgA) and the 24 hour urine (5HIAA) and am waiting on my CT scan appointment. It's also time for my annual Echocardiogram. I then see my Consultant and he delivers the news.  Happy days :-) I positively look forward to my tests and I cannot wait to get into that scanner! 'Scanxiety' isn't in my dictionary.  Why? Because testing is one thing that's going to keep me alive for as long as possible.  If I don't get regularly tested, then one day I might just 'keel over' because something wasn't spotted early enough.  Even in the event of 'not so good news', I still see that as a positive because it…
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Colonoscopy Comedy

Colonoscopy Comedy

Humour, Living with Neuroendocrine Cancer
  [caption id="attachment_2643" align="aligncenter" width="500"] No more prep please![/caption] Last year I wrote a series of blogs on the 'coping' side of cancer, one of which was about still being able to have a laugh. This was my way of saying no matter how tough life is, you need to stay positive and maintain your sense of humour. When I think back to some of the treatments I've had, I sometimes have a little laugh even although I wasn't laughing at the time!  My favourite 'treatment laugh' is the 'suppository story' which occurred in hospital shortly after my first major surgery - it wasn't funny at the time but I smile when I think back to it. On a similar subject, I had a colonoscopy around 21 months prior to my actual NET Cancer…
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Living with an incurable cancer – does mind over matter help?

Living with an incurable cancer – does mind over matter help?

Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship
When I started blogging in 2014, it was relatively easy - all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian's Wall for a local Charity.  The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going.  That suddenly made it more difficult! In my early blogs, there were several 'no go areas' which were either too complex or potentially controversial.  I didn't really have much time to think them through properly at that point in time. However, I've since dabbled in some of these areas to test the waters.   I'm not a healthcare…
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Glass half full or half empty?

Inspiration, Living with Neuroendocrine Cancer
Most people have probably heard of the saying "is your glass half empty or half full".  If you said 'half empty', you have more of a pessimistic view on life; if you said 'half full', you tend to have more of an optimistic or positive outlook. I don't think a positive outlook actually means you permanently wear 'rose tinted glasses' and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way.  I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to time. I'm only human and I've been in some dark places in the last 5 years since diagnosis. However, I believe to continuously be in 'half empty mode' can have a…
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Laughter is the best medicine

Humour
How many times have you heard it said that laughter is the best medicine?  I can certainly remember this phrase being said when I was a child.   There is some Science in Medicine (more applied than pure), so where is the scientific evidence for this claim?  Well after all this time, someone has decided to carry out a study.  Apparently when we laugh, we exercise our muscles, get blood flowing, decrease our blood pressure and stress hormones, improve sleep patterns and boost our immune system. It's a new area of research known as 'Psychoneuroimmunology' - the study of how emotions affect our nervous and immune systems. It's still a relatively new area of research, but the insights are promising. The study looked at 20 healthy older adults in their 60s…
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