I had two meetings over the last two days. Yesterday I met with my Radiation Oncologist, and today I met with the surgeon who took out my left stent. Lots to report about that.
Yesterday, I got a copy of the radiologists report, and I looked at the scans myself with my Oncologist - looking at the difference between March and last week. First of all, radiologists must perform some kind of black art to make sense of all those blobs of gray. I hadn't seen my own scans before, but I assumed they were a little more clear. Things like large cancerous lymph nodes are easy to see, but the primary tumour in the liver is just some darker shade of gray with medium gray boundaries. My Oncologist wasn't that great at interpreting the scan, and I certainly had no idea. Generally the primary tumour did seem a little smaller. I guess. Very hard to tell.
Meeting with the Surgeon today was very informative and useful, but also quite depressing. As a surgeon he had much more experience studying CT scans, and was able to say that the medium gray areas around the dark gray of the tumour were the uncertain part. Maybe they were also tumour, or maybe they were swelling or temporary damage from the radiation. He did say it looked to him like it was about 1cm smaller - which is what the radiologist's report says. So vaguely, from 5x6cm down to 5x5cm, which is still very large to have in the middle of your liver. So he agreed with the Oncologist that we should wait a few weeks before doing another CT scan to see if these medium gray areas go to light or dark. I now have a scan scheduled for about 3 weeks from now.
The really depressing part was more of a re-iteration of the things that were told to me back in early March. I am very unlucky to be so young with an otherwise healthy liver and get this cholangiocarcinoma (it is very very rare), and I am doubly unlucky that it is positioned in exactly the worst spot it could be, in the middle of my liver pressing right against and encasing two very important blood vessels, the hepatic artery and the portal vein. So his opinion was that based on the latest scan, there was still no way a surgeon would go in and try to remove it. It was much too big. And he doubted that things would show up as improved enough in the next scan too. Still, he said he would get other surgeons to look at the scans (he wouldn't be the one who would resect) and get their opinions too.
Another piece of bad news is that there is a tumour marker, measured from a blood sample, called CA199S. Apparently in a normal person this would be about 30 U/mL. In early March, before treatment started, my level was about 6500. Last week it was measured at more like 15000. Now this may be a spike due to radiation, so before the CT scan we will check it again.
We also talked about growth rates, because I really have no idea how fast this thing is growing, and thus, assuming no further treatment (which is unlikely - I'll do something, I guess), how long do I have to live? He said a typical doubling period for cancer (not necessarily cholangio) might be 120 days. Of course, I don't know how large a tumour I could tolerate in my liver before things really go awry in my system. Needless to say, all this news is all hard to deal with. But I am glad I am informed.
So in other news, because the tumour is pressing on the portal vein, I will have to continue with the daily Fragmin blood thinner injections. Probably for the rest of my life.
My Oncologist tells me that my stomach and eating problems should settle down in a week or so. I hope he is right.
Any finally, the only real good news, I was able to remove the bile bag. I still have the tube sticking out to do daily flushes of saline to make sure everything is flowing well. If I ever get feverish, or swelling, or jaundice, I will have to attach the bag again right away. It feels good not to have it there smelling and looking disgusting. So yay! - a modicum of extra freedom in my life.
