Welcome to the forum Clint,
I don't have oral cancer, but my Aunt does and she's been battling this damned disease in her mind as well as her body for almost 3 1/2 yrs. When my Aunt was first diagnosed, she asked pretty much the same questions as you have- except for the clinical trials questions. Mainly her issues were quality of life issues. For as much as I explained -in detail- what was going on in her body, amazingly she still asked her doctor "what happens if I do nothing?" and for a short time, I REALLY thought she was going to do nothing. The long and the short of her story was that she thought she could tell the doctors what they "could do" and what they "absolutely couldn't do". That is, she made a deal with them. Her deal was surgery alone. That was all she would/could tolerate. No radiation because of quality of life issues. She didn't want dry mouth for the rest of her life, or to loose teeth or to suffer skin burns and mouth sores. Quality of life.......... Some deal. Stupid doctors. And so my Aunt had a partial glossectomy, the floor of her mouth was reconstructed, a saliva gland was removed as well as only one lymph node from her neck that was "only cancerous on the shell of it but not inside". They considered this fortunate. She thought she was safe. Let me say that after ALL that surgery, 19 hrs. worth, I had a message on my answering machine a week later in a raspy voice, "hey my little tomata', it's me, I'm OK". And after that, when she got home, we started talking a blue streak on the phone again every couple of days just like we always did. OK, let's bring this to the present..... As of 7/27, my Aunt's cancer is back. As of 8/18, it has spread to her right lung as well as to the lymph nodes in her chest as well as other places in her oral cavity. My Aunt is dying. And as much as she's heard the word "untreatable" and "terminal" from her doctors recently, she's still asking the dumb questions "isn't there a wholistic cure for this?", "what if I do nothing?" We're replaying all of the events and conversations from three yrs. ago. I love my Aunt dearly, more than I can explain. She's one of my best friends. But she's dumb. She made a HUGE mistake. And she still doesn't get it now.
Please keep talking to all the good people here, they may not have medical degrees but they are experts. Ask the smart questions, not the dumb ones. There IS NO QUALITY OF LIFE ON THE OTHER SIDE OF THE GRASS! as Brian says. A great surgeon "can" reconstruct the entire inside of your mouth and you will still be eating, talking and swallowing very close to normally IF you don't wait too long to mull all this over. Be smart, take it all in, consider it all VERY carefully, find the best, feeling informed- ACT QUICKLY.
Am I angry? Yeah........ I'm going to lose one of my closest dearest friends and my heart is breaking. Please don't do that to anyone you love or loves you. This thing is a beast. A runaway train. It can't be stopped if you do nothing or if you make half hearted deals. You got to go full out, roll out the cannons. You're going to war. This is a war that will be hard to win long term but YOU CAN do it. Be one of the great people on this board who kicks this thing in the butt!!!
I'll be praying for you.
