Topic: Deciding To Continue To Do Nothing
Haven't written much here in a bit, though I do read pretty regularly -- it feels like checking in on extended family when I visit here.
Briefly, here is my current situation: tumor first seen in April 08, finally diagnosed in July 08, failed surgery in Sept. 08. I have the intrahepatic kind of tumor, anywhere from 5.5 to 6.5 cm when last measured. No symptoms except for fatigue, which is bothersome but consistent. Liver function and other bloodwork remains generally normal, except for CA 19-9, which has risen from roughly 69 to 85.
Based on all of my own research and consult with various docs, I opted to decline treatment after the failed surgery -- I felt and feel as if chemo will do more to upset the delicate balance in my body that is, at the moment, keeping symptoms at bay than it will benefit me.
I was supposed to have CT scan and assorted further bloodwork in December but cancelled it. My thought was that since I am opting not to do treatment (at least until symptoms, and at that point I am not sure how I will proceed, since chemo, in my opinion, does little good for this vile cancer) there is no particular point to regular CT scans except to make me upset.
I had planned, however, to have a scan in April, which seemed a good timeframe since it will mark a year since the tumor was first seen.
Now, however, I am rethinking that, and wondering if there is an argument (other than my own magical thinking) against having any further CT scans/lab work until symptoms appear. We know that size and growth of tumor do not necessarily serve as gret predictor of progress of illness, and it occurs to me that if I find out, for example, that the tumor has doubled in size, it will be terribly upsetting but doesn't necessarily "mean" anything.
So -- and I apologize for this long post -- I wondered if others would care to offer an opinion. Part of me also feels like having as much control as I can is a good thing, and that means knowing, exactly, what the tumor is up to and whether there are more. On the other hand, there is something to be said to living a life as long as I can "as if" I do not have the tumor, so is it better to keep my head *and my bile duct) in the sand?
Thanks for feedback -- and courage to us all.