What does 'remission' really mean?

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Hi all There's been some discussion recently about the meaning of remission, and Ray's blog about the AA man has made me think too about it. Like Ray, I have also been in 'remission' for coming up for 15 months. But I have a problem with that word, rather loosely used in public circles. My own oncologist doesn't use it, he says he is pleased that currently there is 'No Evidence of Disease' (NED as it is known). Remission - sounds to me like a retrospective term, to describe a period when you were NED. Or is it a time when you are NED but waiting, anticipating ED? I find myself oscillating between feeling lucky and feeling anxious. Lucky that the treatment worked, anxious that with no treatment for 15 months that it may be growing again. Whichever I am feeling I still try to make the most of every day, and have enjoyed huge personal growth through and after my experience. But I also wonder sometimes if I am realistic or pessimistic (maybe even disturbed?) to be anxious that it may return. Problem is the medics don't know. We attend the monitoring clinics (mine are now every three months, and will decrease to 6 months, then to nothing after five years - if I am one of the 70% disease free, (or is it 70% survivors?). Or is the % different because I had a different chemo from the norm on a trial - now not thought to be as effective as the UK standard - though full results have not yet been published. I don't like to ask my oncologise outright, as I am afraid of the reply. Last time I asked for reassurance, he said as a rare cancer its activity was unknown and they preferred to monitor closely because of that, and to collect data no doubt. I'm not sure if this should have been a group message, or a blog, or what. But I just felt a need to debate it. I am so glad I am in 'remission', don't get me wrong, but what does it mean exactly? For all of you awaiting results, I hope you get to hear the NED result. This must seem pretty stupid to those of you still striving for 'remission', but hope you'll forgive me for indulging the anxiety of uncertainty it brings, out of the system for most of the time. Best wishes Peachy x
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