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

Hello Con,
Just read about your recurrence, so sorry that you have to go through so much again-and am so inspired with your strength and courage to do so! People on this fourm are truly amazing.
Shar is right, my mom did recently go through brachy therapy. She was not able to have a partial glossectomy due to new found heart problems that we were unaware of until pre-op testing.
I'm not sure what questions you have, I am happy to help you in any way that I can. I can tell you right up front that her RO was very pleased the last few times we saw him, we see him again today--hoping for the same results!
My mom's brachy was done in a CCC, I do believe that you need a skilled person to do this procedure.
I'm here and available to any questions I can help you try to answer. You can also e-mail me, it is listed in my profile.
Will be thinking of you.
Donna

I just found out the cancer is back and on the left side again. I posted this in the anger & fear area. I still am in shock that they didn't call sooner and tell me. LOL but i am gonna whip it again.

You 'second-time arounders' have done it once before and just need to open a bigger can of whoopass this time around!!
So sorry to hear that and so feel for you,
Brenda

Ilost 1/3rd of my tongue the 1st time and had no rad or chemo. I hope this time is just as easy to deal with. I had a radiologist tell me I should have had rad & chemo last time. Maybe he was right, maybe not but I hope to find out tomorrow after they finish in the operating room. Whatever they want I will agree to.

Con,
I'm on my second cancer, tongue this time, and I had one third of my tongue removed. My speech is very good, better than I expected and I am slowly working my way back to eating. Good luck with your surgery or whichever treatment option you choose.
Minnie

Hi Con,
Just met with mom's RO yesterday, he is so pleased with her healing. Brachy made all the difference!

Take it from me,, they can all make mistakes as I found out yesterday at the James Cancer Center at Ohio State. Seems a local radiologist was right and I should have had Rad Chemo combo. My Dr at the Cancer Center says I need it now as before he didn't think so. Oh well , we are all human and make human mistakes, Just as long as it works I will be happy to go thru it.

So sorry to read about your recurrance. In answer to your question about how you will know if the cancer is gone without surgery, I think the answer is that you will never "know." But I've read enough on this board to believe that even with surgery you never really "know" either. From what I've read, it seems that each case is different. There are so many variables in the mix. My advice is to find a doctor that you believe is knowledgable and one that you can trust to look at your case and your particular set of circumstances. Make sure the doctor knows what is important to you. For example, living to see another month or year is of utmost importance to some. For others, it's quality of our time on earth that matters. Some will avoid death at any cost; others believe there are things worse than death. If there are several options for treatment, ask him what he would do if he were in your place. Ask him to explain his answers fully.

Well - it's been about 3 months since my bio and I've been through a CT, PET and now just had a MRI. Both rad Drs. think the internal Rad is the way to go. The CA Dr. still thinks I should have the whole works. The PET showed the CA on the left side of my tongue ( same place as 7 years ago ) and going from the front to the back, however it has not crossed the center of my tongue to the right side. Now I'm waiting for a review of all the information from the Dr. I really feel that I want to have the internal and see what that does before I commit to Chemo and surgery. Who knows!! My ENT seems to confir with the rad Drs. Thanks for all your support.

Connie

Well Things have changed. I am now going to a oncologist surgeon, the best we have around. I start chemo tomorrow, had a scope done on Thurs. ended up on a ventilator for awhile ( I really don't know why) and morphine, so I went home a happy camper. I started a blog because I appreciated Kate's so much. Hope my experience will help someone else.

Con: Hoping that your first round of chemo went well...we'll be checking your blog for updates....Please know that we are here for you, if needed....

Lois & Buzz in NC