Thank you all for the helpful suggestions. I did what you said, Christine and left your replies out (a little edited LOL, so that she didn't see that you said to do this.) I think this went a long way toward her deciding to have the Peg tube put in while she was put out for her panendoscopy. They did this on Thursday the 15th.
She has a really good surgeon...I researched him. He was in Boston magazine as one of the top 50 ENT-Otolaryngologists in the U.S. 2 years ago and this year in U.S. News Report "out of 1,071 top ENT-otolaryngologists listed, 285 have been named to a highly selective list of America's Top Doctors (ATD) by achieving national recognition for outstanding work.".
Sadly, this surgeon didn't find what he thought he would though. I think I mentioned it was being done again because he believed it was smaller than her ENT oncologist found and he wanted to investigate it himself. He found that it was even worse. The BOT tumor goes right through from top to under tongue and more importantly, deep inside it spreads and it is over the midline. (I'm sorry, I don't know all the technical terms...he pretty much laid it out in laymans and this was my understanding of it.) He says that once they add the margins it would mean removing the complete tongue as well as the voicebox. He says if I asked what he would do if he were in her circumstances, he would try chemo and radiation and hope for the best...LOL he does not sugar coat at all. He then said that most likely in the end it will be the same outcome but with C&R there is at least a chance with therapy to have some small use of it. He said that when the radiation destroys the cancer, because of the size and placement, it will most likely destroy the tongue. We met with the radiation oncologist and she agrees. She also agrees it may not work. Personally, I got the feeling she wanted to go further and say to us that we may not want to bother. Don't get me wrong, she didn't say that, but that's just what I felt. Do you know if they DO ever say that? Everyone is very nice and says to be positive. There's been a lot of "quality of life"s being tossed around by everyone, but no one has said NOT to do anything. She wants to be very agressive and has scheduled 7 weeks of radiation for her, 5 days a week along with a weekly chemo. She starts on 12/6. A couple of weeks to get used to the tube and to try and fatten up. More than once, talk about "surviving the treatment" has come up. Anyway on Friday and Monday we met with everyone you could think of...chemo, radiation, her surgeon again to reiterate what he'd said after the panendoscopy and exploratory, a pathologist for speech and eating to get a baseline, a nutritionist. It's been a whirlwind. So a couple of weeks and then she'll start.
Does anyone know of anyone with a really bad prognosis who may have survived? For at least a bit? It's okay if you don't. that's a bad question. If I can will her through it, I will do my best. She's being so brave ... we have lots of macabre tongue jokes 'cause she says she's not a 'Lifetime Channel movie of the week' type.
Anyway, I'd better try to get some sleep. Please keep my sister, Marie in your thoughts and prayers.
Janie
