We've been doing a little research today, but I'm not sure its getting me anywhere constructive at the moment.
The key factor is that this appears to be very rare (one quote is 0.02% of all Oesophageal cancers - that's one in 5000), which means that there is not a lot of case material to go on.
From what I've found, the prognosis is not good (only one survivor out of 7 cases), but most of the info seems to be quite old (80's or 90's), so things will have developed since then. Also, most cases are for older people, so again the results are likely to be skewed. I'm not sure this is particularly useful delving into these type of figures - potentially misleading and obviously depressing.
We have quite a few questions which won't get answered until we see the oncologist(s), so we might even be going off on the wrong track entirely wit this research - I'm not going to worry about this data until I am a little better informed.
In the meantime, a better day on the eating front today, so I'm focusing my efforts on that until the next consultant meeting!
Cheers,
Colin.
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Hi mate. Just caught up on the blog. Well that's quite a surprise about the histology. Main thing is to say is stay away from the internet and looking at the "research". I confess I'm no expert on neuroendocrine tumours but what I do know is there is a HUGE variety and nature of these. eg. gastrinomas, VIPomas, glugagonomas, insulinomas etc etc etc (the point being that there are many types all carrying different treatments and approaches). Therefore searching the net without knowing the detail WILL be counterproductive and most probably scary (as it is even if you search for something as inoccuous as lower back pain).
Deffo wait until you've seen the oncologist as they will have much more (correct and appropriate) information about your histology and the treatment. Try to ignore what you've read so far as it is almost certain to be irrelevant to you.
I can't believe you actually LIKE the taste of those drinks!!! I've tried them all and frankly most made me feel sick. LOL.
You've had an awful lot to deal with mate and you're doing admirably. Seriously. Like you said, keep the chin up cos I'm confident the eating/sickness/hunger cycle will sort itself out over the next week or two.
WIll be missing you at the gig tmoz!
Dave
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