I had squamous cell about 7 years ago and just found out it is back - in the same location- left side of my tongue. 7 years ago had 1/4 tongue removed and 33 rad treatments. Been ca free until now- my ENT said a couple of treatments could be planned. 1- take out about another 1/4 of my tongue and if the margins are not clear as before- more rad. YES- he said that the Radiologist said since it has been 7 years he thinks my body can do it again. 2. Rad again only and leave the tongue alone.
My ENT did not seem to want to do remove anymore of the tongue. He said it would leave me functionally impaired! I have a CT next week and meet with my Rad Dr. and my Oncologist. Can anyone give me any insight? I need help!

If mine is back, My Dr said the same.. no more tongue surgery, just rad & chemo combination

Thanks for the input Jim. My ENT also said that unless the CA is found in the lymph nodes that chemo is not recommended, just more rad. He also mentioned the possibility of a rad inplant into my tongue, but in reading about it it seems that that may require a specilized hospital to be able to do it. Have you heard anything about this. ?

Con

That is called Brachytherapy, it is a form of Radiation that is done with inserts , there is more information on the home page about it and it is a more localized form of Rad it I am correct.

Donnarose, has more experience with this as well .. As this is the treatment her mom had. Again if I am NOT MISTAKEN .

Shar

Hi Con,

Let me know if there is any information I can offer that might help you. I've been living with recurrent tongue cancer for about 12 years. I've never had chemo or radiation. I have 4 surgeries cutting off various degrees of my tongue, some jaw, some teeth and once a neck disection to remove lymph nodes. I've had as much as 5 years between some surgeries and 10 days between others! How can I help?

Mine came back after 3 1/2 years, 2 lymph nodes involved this time. First occurrance I had about 1/2 of my tongue removed, 2nd time about 3/8 of the remaining half which leaves with with approx 1/8 of my original tongue. I have the very back of the tongue, the muscle down the center and the very tip on the right side. I am able to eat and speak fairly clearly although it has been rough getting to this point. I will have radiation - 33 treatments - plus chemo starting Jan 7th. It is an aggressive disease and personally I am telling my doctors to "hit me with your best shot". I want it GONE. I am 53, and otherwise healthy so I believe I will get over the treatment. Just FYI.

Donna

I want Donna in my corner . What a fighter Donna must be. I hope I handle whatever is going on this time like the heavyweight champion she is.

Con,, that is the reason my Dr said no surgery, I would lose too many functions involving my tongue. That sure wouldn't make Barb happy . LOL sorry all but had to say it.

WOW, Leslie...I can't believe all that you have been through, you must be one TOUGH cookie! I'm quite sure you'll be great encouragement to many here who have had similiar surgeries!

...and DONNA...you KNOW we'll be right there with you as you begin your treatments..EACH of you are a great inspiration to everyone here!

Lois & Buzz

Thanks to all of you for the insight you all gave. Leslie, can you still eat and talk with that much of your tongue out? I wish I could have the surgery done and the Dr. would get it all - otherwise I would have to go through the rad again anyway. On the otherhand, if I have the rad it would save my tongue. I meet with my rad Dr. and Oncologist next week. Hope there is some insight from them. I am hoping that my ENT is not wanting to avoid the surgery for other reasons. I guess I should ask him if he has ever taken that much of a tongue before. He was my Dr. the first time around and was great, only thing he did not get a clear margin that time so we opted for the rad. Who knows? Then I am also wondering if I have the rad and no surgery how will I know if the CA has been eliminated or not. Any thoughts from any of you on this?

Thanks again, Con