Topic: Chemo or radiation: a tough choice
As many of you know, I was on Gem/Ox last fall and it did a wonderful job of shrinking not only the tumor, but the affected lymph nodes. It also had to be cut short after only 6 treatments because of neuropathy in my feet.
After months of no treatment, my March 2012 CT scan showed increased growth in the tumor and a periportal lymph node. The same node? I am not sure.
Dr. K. decided we should try Gem/Xeloda for 4 cycles. The tumor has shrunk again. Unfortunately, the lymph node (actually more than one, but called one node for some reason) has grown so large it is dangerously close to my "good" bile ducts, among other things.
My surgeon, Dr. Fong, was very confused when he walked into the consult room and saw me. He expected to see someone sick. He looked at the paperwork and back at me and didn't know what to say. He actually said he needed a minute....
Then he said surgery is not an option at present. It would probably cause more harm than good in that he would probably leave cells there free to roam throughout the body. I asked him why the nodes grew on Xeloda when the tumor shrunk. One thing I have not seen on this board yet (not that it hasn't been stated) is this:
When the cc mets to another organ, etc., it often mutates so the cell structure is not the same. It is still cc, but there is enough difference that it may or may not react to the same treatments.
Kind of an important thing for everyone to know and remember just in case.
Here's my predicament: both doctors want me to have radiation. I want to know if it's the same node as last year. If it's the same node, chances are it's the same cell structure as last year, I would assume. And I know oxaliplatin worked on it.
I still have neuropathy in my feet, although it is a little better than a few months ago. I want to try oxaliplatin for 2 cycles if it is the same node(s). Dr. K doesn't want to give it to me. She asked if I understood what I was chancing. I said yes. She doesn't want to give me nerve damage for the rest of my life. I asked her if she could promise right now that I already didn't have nerve damage to my feet. Obviously the answer is no, she can't promise that.
I still want quality of life over quantity of life. BUT, if I have a good chance oxy will work, I am willing to chance having neuropathy for the rest of my life. And that's a lot for me to know I may have to give up. I dance, walk, dance, ride a motorcycle, and did I mention dance? With neuropathy, dancing is hard. There has to be a happy medium somewhere. And I figure what more harm can 2 cycles do?
At what point do you demand that your doctors listen more closely??? At what point do you demand to try what YOU want???
I know this is a little ranty and I hope what I'm trying to convey and ask is clear. I just don't know which road to take, and I'm hoping she will start to cooperate with my questions, etc. Maybe I'll call Dr. Fong and see if HE will answer the node question....
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.