I’m reluctant to post this, for fear of “jinxing” myself, but I wanted to share. I only posted once about a year ago, but I thought an update would be good anyway. I was diagnosed on 12/13/12 with adenocarcinoma with poorly differentiated cells, which they still to this day aren't sure if it is intrahepatic cholangiocarcinoma or something else - maybe metastatic colon cancer (although all my scan prescriptions describe my condition as bile-duct cancer). I had scads of tests done and they weren't able to find cancer anywhere else but my liver. There aren't any support groups that I can find for “Cancer of Unknown Primary,” so I hope you all don’t mind that I post here despite the haziness of my diagnosis.
Anyway, I had two months of gemcitabine and irrinotecan which shrunk my tumors a bit. They added panitumumab after that (after a long battle with my insurance company to get it approved). Again, the tumors shrunk after two months, so I was sent to the surgeon. I had a liver resection at the end of June where they removed all of my left lobe and a couple of wedges from my right. The surgeon was able to get all the tumors with clear margins and was very pleased. He said that I sailed through surgery. I spent five days in the hospital.The awesome thing was, when they did the pathology on my tumors (and there were a bunch of them), it showed that nearly all the cells in all the tumors where hyalinized – which I guess for their purposes means they were dead. There were only a couple of tiny spots of live cancer cells. My surgeon and oncologist were shocked. Apparently I’m only the third or fourth person to respond so well to this treatment. I went through another two months of chemo with all three drugs and finished up in October.
My PET scan in October was good and my oncologist announced that I was in remission. My tumor markers (CA 19-9 and CEA) were both low and within normal range too. I generally tolerated the chemo well, with the exception of a pretty terrible acne-like rash from the panitumumab on my face, chest and back. That was actually helped by acupuncture though (I think so at least). However, my side effects were worse after I stopped the chemo for a few months before surgery and then started up again afterward (I guess that is normal).
I have been feeling better and life is slowly getting back to normal. My skin has all but healed, with only a little scarring. However, sometimes I get really emotional about my experience. I feel incredibly angry about the time that was lost to treatment and the fact that I have to worry about recurrence (which I know the rate of is high). I’m also very angry about what my husband and family has to go through during my treatment too. I'm terrified of recurrence. Every ache and pain causes me to panic that it has come back and spread. My next scan is toward the end of January and I am absolutely dreading it. I just want to move forward with my life, but I feel like this will haunt me forever. I read that these emotions are normal and I am seeing a doctor about them, but it is still hard. I’m just trying to be cautiously optimistic about the future. This time last year, things didn't look so good and I know how quickly I could be in that situation again. I’m going to try to enjoy the holidays and be like Scarlett O’Hara and worry about it tomorrow. I don’t want worrying about the future to ruin the time I have now.
Thanks for reading,