raig

Since you posted the exact same question about radiation TX in two separate threads, I've reconsidered my initial decision not to reply (plus replied to both). I held back because we all try to be very positive and supportive here at OCF, and my experience was exactly the opposite of your understanding. While radiation was "challenging", all the real "damage" was done to me by my partial glossectomy and selective neck dissection. After my 40 IMRT TX and 8 Erbitux, I was back to eating normally, talking normally, and even did a triumphant "victory" trip to Rome & Venice.
The surgeries however devastated me. Plus my hospital stay of 12 days rivalled Dr. Brook's horror story.
I want to emphasize that I would do the surgeries all over again as that was the only way to stay alive.
I'm not a doctor and I'm in no position to evaluate your doctor's decision to treat your cancer with surgery first instead of radiation or chemotherapy. My understanding is the polar opposite of yours: I had thought radiation and chemo were now the first choices because of all the life long and permanent complications of surgery. However, my tumor was at the base of my tongue. It could very well be that your tumor is much more accessible and that you will sail through with flying colors and minimal complications. You asked about the "reality" of RT, and in my minds, it's the lesser of two evils. Since you asked for thoughts, those are mine.
Best Wishes
Charm

Oh Charm...I've missed your comments:) It's good to be back.

Cheryl, I agree with you, a scar is nothing to worry about it. Your life if much more important. I like your thoughts of becoming close friends with a plastic surgeon:) It's important to have a sense of humor!! Hopefully the doctor will be able to get all the cancer without disturbing your jaw. Keep us posted with a date and stay stong!!

I think - wait until the pathology comes back. I think that will be the definitive. According to my Dr. I am at one of the top two hospitals for this kind of cancer in the country. That said, I was told by the radiation oncologist that it would be determined post op based on the pathology. He said they will only offer me radiation if the possibility of recurrence is greater than 20% since radiation cuts those odds in half. It think it is too early to make any decisions. I understand radiation sucks BIG TIME. But if the doctors tell me my cancer is aggressive (hopefully not) and that I have a 50/50 chance of recurrence then I will take it... because it brings those odds down to 25%. It also has to do with whether there is nerve involvement etc... (he said they punch a bunch of numbers into a machine and then that determines whether I am offered it) Apparently, if there is nerve involvement (and lets face it your tongue has lots of nerves) then it ups the odds of recurrence because it's easy for the cancer to travel along the nerve pathways. The path of least resistance and all that. I am going into this with the mind set of - yes it is likely that I will have to have radiation and I am planning my life accordingly (with work and family) If at the end they say I don't need it then that's great. But I am ready to face whatever challenges it presents because in the end I want it gone.

Let me know what happens with you.

Cheryl

As we approach February, please focus on how your upcoming surgery is going to deal with this cancer issue. As the resident OCF contrarian, even if you do need radiation later, it's not so bad. And scars? you can't even see mine anymore although at first you could not ignore them. You are NOT having a really disfiguring surgery although it does sound gross. It's cool that you are taking your Ipad into the hospital with you, my experience is that the hospitals have their own wireless network and they will give you a password and access if you ask.
Your attitude and posts are exemplary. You are right on the money with your assessment of perineural involvement. I don't mean to minimize the consequences of this TX and surgery but hey, as someone who can't eat, drink or speak clearly, I have to say life is great nevertheless. You have said it all with your last sentence: [quote]But I am ready to face whatever challenges it presents because in the end I want it gone.[/quote] My wish is that you have the very best pathology report in the history of OCF and that you share that joyous news with us.
Keep the Faith
Charm

I agree Charm....Cheryl, you have a wonderful "can do" attitide and that is awesome. Keep up those good spirits and be sure to allow yourself to feel the frustration too. There are so many different feelings when dealing with this disease and that is when you lean on us and your family. We are all here for you and you will get through this.

Thanks both of you - all of you - actually - I know this isn't an easy disease - and yes I have my moments - of "holy #*^%!" but for the most part I am good for now. I may at some point feel like road kill but I want to hold onto good for as long as I can! Charm you are an inspiration - thank you! Suzanne - you too - I honestly hope that we all can kick this disease in the deriere! I am prepping for my surgery - I know it won't be easy and I hope I am ready for the organized trauma that's heading my way! For now though I am just having fun walking my dog, and being with my family! And of course visiting you all here. It's amazing what the human spirit can endure.

All good stuff here. Just packed my bag to head off for a day of pre-op appointments and then tomorrow early a.m. check in for surgery. As soon as I am able I'll post and update post op.

Good luck Craig..I'll be thinking of you. Maybe you can start your own thread when you post again so all of the posts will be for you:)

Cheryl....I bet you will still be able to walk your dog after surgery. I think that would do you some good and make you feel human!! That was always my buggest thing after surgery...I can only take so much daytime tv:)

Good luck... and may the surgical gods bless you.

I finally got my OR date! Feb 4th! EEEK!
Will be thinking of you and saying my prayers for you and everyone else here.!

Thanks Suzanne... I will do what I can as soon as I can without causing myself unnecessary pain. I had (plastic) surgery this past summer - frankly my children ruined my stomach (they were 12lbs each) so no matter how much weight I lost I always had a terrible belly... so I had a tuck done and let me tell you... it may have been day surgery but I went home with drains in - and was flat on my back for almost 2 weeks (trying to sit up from laying was a task and a half) and basically became all knowing in all things Gene Simmons... (never once watched the show before my surgery!!) but since it was me my couch and my dog for about two weeks... It was Gene or utter boredom - SO I heartily concur... there is only so much day time TV one can survive without becoming a total lunatic.
I figure my head and neck will be a mess but if my lower limbs are working okay a walk will do me good!

Have a great day!