Let me preface this by saying that I know uncertainty is the name of the game when dealing with CRC, but I have a second appt with my onc on Wednesday before Cycle 3 infusion and I'm looking for input as to what, if anything, I can ask him that would clarify matters a bit.
Here's my situation:
Firstly, I presented at the ER with severe abdominal pain, and so the only scan I had before surgery was a CAT scan with contrast of the abdomen, which only included the "bases" of my lungs. That scan revealed that I had a blockage which was putting me in danger of perforation, so we went ahead with surgery right away. The scan showed my liver and lungs as clear, but luckily my surgery was open, and my surgeon was able to find and remove a tiny subcapsular liver node (0.5 cm). Lymph nodes removed as indicated in my sig. I gather the mesentery clump was indicated by stranding on the scan. So I am left wondering whether there were other liver or lung mets that were undetected.
Secondly, my tumor didn't express CEA, so that is useless as an indication of what is or is not going on.
Thirdly, a PET scan after surgery was deemed useless because of all the surgery-related activity that would light up.
Fourthly, I am STILL waiting to get the results of the genetic testing that will, I hope clear up the Lynch question. It's been a little over 6 weeks. Meanwhile, D-F put up a detailed genetic report on the tumor a week ago on the Patient Gateway, and they had 2 weeks less to work on it. But I need the blood results to tell if it the mutations are germline or not. GRRR!! Okay, maybe he is going to tell me on Wednesday. I hope. I guess I am mostly venting on this one, and of course it is mostly about the outside lab.
The consultant at D-F indicated that pretty much all I can do is go through the 12 cycles of FOLFOX and then have thoracic and abdominal CAT scans when its all done to see if there is anything there. Sure, I *could* have a scan somewhere in between.
I maintain a positive outlook and all that, and I have been extremely lucky so far with fairly minor side effects of FOLFOX compared to a lot of people. I try not to borrow trouble, and not get worked up about issues before I know I need to. But that is at odds with my need to research my condition on the internet and obsessively read other people's stories.
Maybe I need to turn off the computer and go outside and weed.