Topic: Chemo or radiation: a tough choice

Hi,
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....

KrisJ
"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.

Re: Chemo or radiation: a tough choice

Gosh and gee wiz, Kris. The only thing I can say is I have read and re read your post and only one gut suggestion jumped out at me. A 3rd opinion. I know, I know, it's a time waster but thought it would be interesting to see which side a 3rd DOC would go with, not sure if you had done this yet but it seems these 2 have always had such different opinions. I DO believe that the DEoctor needs to listen and hear not just listen and that  explanations need to be given. Wish I could be of more help, girl.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Chemo or radiation: a tough choice

Hi Kris,  What do the doctors say will be the result of radiation? Do they believe it will shrink the lympth node? A tough decision; hope you can get the answers you need to make the best decision. Thinking of you. Hugs. Nancy

Loving my husband from afar.

Re: Chemo or radiation: a tough choice

Kris...I would consider making an appointment with the radiation oncologist.  You will then have pro and cons as to why one treatment may prove to be more beneficial over the other. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Chemo or radiation: a tough choice

I heard back from my surgeon today. He was in surgery all week so couldn't get back to me.... Guess what?? His version of my CT scan differs from Dr. Kemeny's. She said the nodes were different and I shouldn't try oxaliplatin. She doesn't want to give me oxy because of the chance of nerve damage. I understand that.
But Dr. Fong said it's probably the same node(s) as last year. He DOES, however, suggest I do radiation instead of going back on oxaliplatin. He says the chances of it responding to radiation is very good. And I have the oxy to fall back on if it doesn't work.
So I got all the stuff to Fox Chase today (except the pathology slides). Hopefully this all gets going within a week. This is taking quite a while, and I'm getting nervous about how fast the nodes grew already....

I just wonder why Dr. K misinformed me?????

KrisJ
"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.

Re: Chemo or radiation: a tough choice

Yay, Kris, you now have a new game plan. And near home. It all worked out. I'm not so sure about misinformation. I think it's more that each Doctor has their own interpetation which is why it is so important to have more than 1 opinion for anything with CC. Wouldn't it be nice if CC stood for Cancer Cured?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Chemo or radiation: a tough choice

Kris...I don't believe that Dr. K misinformed you rather her opinion differs from that of Dr. Fong - experts disagree more often than not -.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Chemo or radiation: a tough choice

Hi,
But if I understand your statement correctly, all of the doctors you mentioned, including your oncologist, agree on one thing. NO MORE OXALIPLATIN. Right?
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Chemo or radiation: a tough choice

Hi Kris! How about asking KAryn Goodman, the radiation onc at Sloan? another suggestion, of course, would be Abby Seigel at Columbia Pres but that might require a trip into the city. (not sure --maybe you could ask Goodman over phone, since she is a Sloan doc and can easily see the records?)

Re: Chemo or radiation: a tough choice

Good idea Audrey. And since I've met with her before she might talk to me.... I don't know: I think I'll just listen to the docs and see what the Fox Chase doc says. He should be looking at all 85 lbs (sarcasm) of paperwork Monday I hope. He has a lot to wade through. Honestly there is about an inch of papers and 10 discs or so... I hope he has all he needs...
I also want to meet with the "regular" gastro onc at Fox Chase and see what he says.

KrisJ
"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.