Topic: Hello, I'm new
I've been lurking here for about 3 weeks and have found you all to be so informative and knowledgeable.
My 53 yr old hubby was diagnosed (intrahepatic cc) about 8 weeks ago---what a nightmare--it boils down to this: after many endoscopic procedures, bile drainage tubes, etc., he finally had a probable diagnosis of cc. Surgeon says he's confident he can 'get it all with clean margins', however after the surgery he says that he couldn't resect because of 2 positive lymph nodes, then announces that my hubby has about a year to live and refers us to their oncology department (big *world class* Boston hospital). He has titanium stents to keep bile ducts open and takes ursodiol daily to stop the itching and keep the bile flowing to prevent clogging, surgeon said he'll need to take this for the rest of his life.
I can't tell you how non-forthcoming these people have been. Getting ANY information out of them is like pulling teeth. I just found out today (because ofthis site I am actually learning what questions to ask) that they didn't resect because the 5.6 cm tumor is intertwined with the inferior vena cava, not because of nodes as previously told--eh?
Hubby has started on gem/cis 3 weeks ago (2 weeks on, 1 week off). The onc actually told him that he wouldn't have any side effects---eh?
She tried to tell him he didn't need the ursodiol anymore--eh?
She told him not to bother with stool softeners anymore (he can become very constipated, not fun) and then proceded to write a prescription for zophran, which can be very constipating.
I have absolutely no confidence in these people--every time we've gone in the onc doesn't even remember him and asks him if he's seen the radio oncologist yet (we met with him for his plan when she brought this guy in for the first consultation). Also, this is kind of laughable (and there's nothing else laughable), this doc looks at me every time we're there and says, 'Please don't try to get pregnant during chemotherapy'---I'm 52 years old, are you kidding lady????
I'm trying to set up a 2nd opinion at the New York Presbyterian/Columbia Hosp. that I've seen some of you talk about----with their liver center that has some of the Drs I've seen mentioned here--Kato, Emond, etc.
Good idea, right?
I'm sorry if I'm rambling, I'm scared, confused and feel like someone threw me into a washing machine and hit 'spin'.
Any advice from you guys would be greatly appreciated.
Thanks for listening,