I have been reading these posts for a few weeks when I can, but never had the time to post an introduction. Things seem to have happened so fast, it's hard to keep up.
My husband John, age 54, was diagnosed with CC on 11/1/13. He is being treated at Duke. (Luckily, we live nearby and I work down the street from the hospital. I work with Dr. Andrew Muir, who is my husband's hepatologist.)
The surgeon says John is not a surgical candidate because his portal pressure is 14mmHg and the degree of fibrosis in his liver is too high, which would put him at risk for acute liver failure if they did the surgery. He also said John is not a candidate for liver transplant because his tumor is too large (4cm.) This was an incredible blow, and my husband took it very hard. We have 9 year old twin boys and he really wants to be around to see them grow up!
We met with the oncologist and radiology oncologist today to discuss palliative therapy. Here is the plan:
1. We sent John's medical records to Dr. Chapman in St. Louis for review, just because it can't hurt to get another set of eyes on them.
2. On Monday, they will be replacing John's external biliary drain with a metal stent.
3. On Wednesday, they will do the "planning CT" in prep for radiation treatment.
4. In the mean time, our oncologist is working to see if she can get us in to MD Anderson for an in-person evaluation and second opinion.
5. If we consent, he will start treatment with 5-FU and radiation in about 2-3 weeks.
My questions for the board are:
a) Are we doing the right thing?
b) If given the opportunity to go to MDA for a second opinion, would you go? Is that the right place?
Here's our blog, in case you're interested.