Topic: I need some guidance
i posted in introductions a couple of weeks ago. I mostly read, read, read and learn, learn, learn from all of you wonderful people.
I need your guidance & opinions.
My wonderful hubby was diagnosed intrahepatic cc on 6/1, failed resection on that date due to one local hot node. the single tumor in right side of liver is 5.6 by 5.2 by 5.8 cm according to last ct scan done on 5/17. This is what we were told. He started gem/cis on 7/02, completed 2 cycles (4 doses), onc says that ca19-9 dropped by 30% by end of 2nd dose and orders ct scan for one week after 4th dose, which was last tues.
Yesterday we went in for results--so much anxiety, anyway the news she says is good----the tumor is stable, hasn't grown at all. So she feels that chemo is doing 'something' and wants hubby to see the radiologist for cyberknife consult--the goal she stated from the outset is to shrink the tumor and resect.
Here is the problem; when we went onto the internet patient site where all of his records are posted---I mean everything---we looked at the new ct scan report where it states that 'there is no significant change' then it states that the tumor is still 5 cm by 7.5 cm as recorded in the last comparison scan on 5/17. Um, I'm a bit confused, these numbers don't match up, right? Am I just getting myself worked up for nothing? We have put a call in to the onc first thing this morning--of course no one ever answers the phone or will return phone calls for days (like 4 days last time), even though we leave multiple messages, though to be fair it was concerning short term disability paper work that was never completed, not a medical question.
Yes, these people are very well familiar with cc, a very large metro hosp in Boston, one of the teaching hospitals for Harvard medical school and they partner in research with Dana Farber. The liver surgeon is very respected and runs the transplant unit
These people don't voluntarily explain anything---we have to know the questions to ask and then they'll answer them. For instance, we also found out yesterday that the original scan found 2 nodules on his lungs, probably granulomas, but to repeat the scan in about 3 months to look for stability (which are stable according to new ct) but what does this mean??? Do they think it's mets possibly??-----this was never, ever mentioned to us at all.
Please, somebody advise me!!! I'm sooo upset.