Neuroendocrine Cancer: Patient Power!

Awareness, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
There's a saying that the patient is the most underused person in healthcare and I think there's a lot of truth in that. However, I would suggest with Neuroendocrine Cancer, it's less true than for many other cancers. There are so many NET Cancer patients out there who know quite a lot about their cancer, and in some detail. Even the great Dr Liu once said that NET Patients frequently know more about NET Cancer than their doctors. If you go onto Twitter, if you go onto Facebook, if you read newspaper stories, you will find cancer patient stories in abundance and they will normally be patients diagnosed with the big 4 cancers. This is not surprising as these tend to affect more people.  However, the ratio of NET Cancer…
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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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Metastatic Neuroendocrine Tumours – Incurable is not untreatable

Metastatic Neuroendocrine Tumours – Incurable is not untreatable

Awareness, Inspiration, Living with Neuroendocrine Cancer, Patient Advocacy, Survivorship, Treatment
OPINION.  Metastatic Neuroendocrine Tumours - incurable is not untreatable.When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ..... I asked "how long do I have".  The Oncologist started off with " ... perhaps just months ........".  That must have been quite a shock because for a few moments after that, I heard nothing - my brain was clearly still trying to process those words - I wasn't even feeling unwell! The really important bit I missed was him go on to say "...but with the right treatment, you should be able to live for a lot longer".  Fortunately, my wife Chris heard it all and I was refocused.  "OK Doc - let's go" I said.  Always take someone with you…
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Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes)

Grading and Staging – Neuroendocrine Neoplasms (incorporating WHO 2021 changes)

Patient Advocacy
One of the most discussed and sometimes confusing subjects on forums is the staging and grading of Neuroendocrine Neoplasms (NENs). Mixing them up is a common error and so it's important to understand the difference despite the apparent complexity.Stage vs GradeIn the most basic of terms, stage is the spread or extent of cancer and grade is the aggressiveness of cancer. They are totally different things and an understanding of both is important as they are critical to predicting outcomes (to a certain extent) and guiding therapy. There is no correlation between the two, you can have the lowest grade with the highest stage (actually very common with NETs).  Remember S for Stage (Spread), G for Grade (Growing fast or slow)The stage is essentially worked out via scans and biopsy,…
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North of the wall is a dangerous place – you must never go there!

Living with Neuroendocrine Cancer
  There was a 60 minute silence last night as another episode of Game of Thrones was aired.  Not a Facebook post or tweet in sight.  This has to be 'up there' in a list of the best TV series ever?  Don't know about you but I'm sometimes confused about who is who and how they are related and/or connected!  (see useful chart at the bottom of this post) Chris and I love the introduction bit.  She likes the music, I like the geography.  There are some obvious correlations there, e.g. 'The Wall' is meant to relate to Hadrian's Wall with those horrible barbarian Scots to the north :-)  Thank God Hadrian's Wall and the climate in particular, isn't as bad as portrayed on GOT!   I did contemplate using 'trousers' as…
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