Topic: New to Board, to CC, that's what they think I have now...
Hi everyone. I just found this site last night and have been poking in every corner!
I was diagnosed 8/1/07 with adenocarcinoma in my liver - of unknown primary (they didn't know what kind it was) I had a biopsy that confirmed the cancer, but still no origin. So they treated me with several courses of chemo. I've had Gemcitibine and Carboplaxin and then Carbo and Taxol. The first batch wasn't bad, but the second really wore me out, lost my hair, etc.
Since then and many CT scans, they have found no change in the tumors in my liver. No growth, no shrinkage...at all. So they stopped the chemo and for the last 13 weeks (another CT in between with no change) I have been just sitting here wondering "what the heck?"
I have a CT scan tomorrow. My oncologist called me yesterday to tell me she was not going to be there for my appt. next week for the results (AUGGH!) but she told me that she had my biopsy slides re-evaluated and worked with the GI expert who thinks I have cholangiocarcinoma!!!!!
Now I do not have any symptoms. certainly nothing like you all on this board talk about. But then, the only reason they found the masses in my liver (many, 3 main ones up to about 4mm) is because I had a CT scan due to a lingering cough. Recently I'm getting pains in my right side, but that's it.
Do you know Anyone who presents like this? Am I just so early that I don't have the jaundice, etc? My doctor told me that if it is cc that it's "intra" within my liver, not outside and though I've had PET scan and many CT's, nothing has shown up. I don't know much about my blood tests, apparently nothing to indicate anything specific. BUT the biopsy is confirmed for adenocarcinoma.
Having cancer of unknown primary (it's called CUP and is rare too) is bad enough, and I am sort of wishing I knew at least what kind of cancer I have, but from poking around on this site (thanks SO MUCH it exists!!) it sounds like I've jumped from the frying pan into the fire!
Prognosis for mets cancer to the liver with unknown primary is pretty dismal too. I'm already half way through THAT guesstimate!
It would be a dream if I could consider a surgical procedure - they said a definite NO before, but I've been hearing that Mayo will consider it for cc if there are no lymph nodes involved. As far as I know to this point, all of my masses are all over my liver, but no where else.
Anyone have any comments or insight or suggestions for me? I go to the Az Cancer Center (UMC) which is supposed to be pretty good, but with an unknown cancer type no one has really known what to do with me anywhere!
Thanks for letting me spout off, and if you don't mind, I'll hang around here for a bit. :-)