Craig, I've heard wonderful things about Loma Linda over the years. You're in excellent hands.

D2

Craig,
Sorry you are are here. Glad you found us. Eat as much as you can now. Good luck on your surgery.

Curious about conversations with the doctors and then the reality relating to RT: I am having my Partial Glossectomy and Selective ND on Friday with similar presentation to many I have seen in these forums and the possibility of RT seems to be remote according to the discussions with my care providers to date. From what I understand it seems like most challenges of treatment come from the RT and collateral damage associated with same and I am hoping to dodge that bullet. Any thoughts?

Hi,
So sorry you have to go through this..my surgery was April 2010. The best advice i can give you is to have someone who can be your advocate for at least the first 2 weeks while in hospital...get some one to bring you and MP3 player with your favorite, soothing music...it will truly help get through those "moments"..are they doing a graft from your arm? and then your thigh? At this stage, I only wish i would have pictures taken from the beginning so i could see the improvement...be strong knowing that you are not alone..you can do this !!!!
Karen

Craig

Since you posted the exact same question about radiation TX in two separate threads, I've reconsidered my initial decision not to reply. 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

Charm: Please excuse me if I am being redundant as I am still somewhat unfamiliar about how to best use the forum and since I have only a day and a half until my surgery I have some sense of urgency. Thanks for the feedback. The ND is being done as a precautionary measure is my understanding (plus I have a history or Lymphoma Dx 1998, clear since). I guess reality is that I won't know about the probability of the RT until the pathology is completed on the nodes and yes, it seems everyone's experience is different. Since I am being treated at a teaching hospital there has been a panel of all possible potential care providers that have reviewed my case and concurred with the surgery first option. The lesion is on the right side, mid-tongue so should be relatively accessible. I won't have to wait much longer as the surgery is Friday. I'll update you all when the facts are known.

I had the opposite reactions from Charm. If all I had to have was the surgery, I could have been back to work in a month, but then, my tumor was in the left side of my tongue. The radiation and chemo really did a number on me, however. I am still having issues with eating. But, of course, everybody is different.

Craig - best of luck with your surgery, I'm sure you'll come through with flying colors.

Clearly each one of us is unique in both physiology and emotional fortitude, and therefore reactions to treatment are like the proverbial differences among snowflakes. But I think, and this is my opinion, that you'd find most of us who've had radiation and surgery have found the former to be more taxing. Which is a lot for me to report given that my surgery involved a serious complication. (and of course mine was not a glossectomy but only a RND)

No question, RT is a bitch. But even so... I've read here about people going through it with relative ease. If you do end up needing it I'm sure your docs and nurses will help you to make it as smooth as possible. And there will be lots of people here, myself included, who'll be part of your cyber-team.

I'll be thinking of you Friday.

David 2

Craig

Not a problem. From what I've read as well as the posts here on OCF, there is a major difference between surgery on the base of the tongue and the front two thirds with your surgery having very good results with less complications. Here's wishing you an excellent pathology report showing no neural involvement with totally clear margins.
Charm

PS. The Mayo clinic website says that usually cancers on your portion of the tongue are treated with surgery first while base of tongue cancers are treated with radiation first.
So it sounds like you are all set to beat this cancer

Hi Craig,
Welcome to OCF! I just wanted to put in a few recommendations for helpful things after surgery. Try and work out a schedule for family members to be with you during your hospital stay. Also get a dry erase board for when you need to communicate when someone isn't around. Your goin to be sore from surgery and sound like you ate 10 packs of gum so doing these things would be great. Also chapstick!! That was my sisters BFF for a few days. Cheap wash clothes from a dollar store. You drool due to the swelling and using your blanket and sheets really isn't a good thing. my sister brought her laptop and had netflix and watched all her favorite movies. I can't think of anything else off the top of my head. But tomorrow eat your most favorite dinner in the world. I will be thinking of u on Friday. Good Luck!!