Since someone has just brought up base of tongue surgery, I wanted to comment that that is an option that should be LAST. It has significant long term quality of life issues, and these are primarily treated with radiation and chemo. The base of the tongue has all the nerves that control it's movement, cutting through any of them shouldn't be done without exhausting other ideas.

Fighter

I know only too well just how accurate Brian's post is about the serious life quality issues after base of tongue tumor surgery. While there are many similarities between oral cancer tumor, there are important treatment differences between cancer on the lateral or front part of the tongue or the cheeks and tumors at the base of the tongue My understanding is that surgery for BOT tumors is almost exclusively "salvage surgery", not done until and unless the tumor recurs after radiation and chemo. That's what my entire CCC team told me and assured me there that there radiation with chemo is quite "aggressive" enough treatment.
My suggestion is that your uncle demand a blood test for his TSH level and get the actual results with the numbers instead of just hearing the doctor say it's within "normal range". He will need a pre TX baseline if he does end up with thyroid damage (many do not, but of those who do, the "normal range" is so high it's hard to get the medicine needed without a baseline)
As you can see from my signature line, I had Stage IV BOT as well as "salvage surgery" and I learned this all the hard way
Best wishes for your uncle.
Charm

Wow, I wish I would have heard this earlier. My ENT did give me the choice of radiation first, but my sister who had breast cancer so considers herself a cancer expert, insisted the best thing was to "cut it all out", just because it worked for her to have a mastectomy. So I let them cut on my tongue.

Now I have much more cancer and even possibly oral cancer back, but I must say that so far my worst quality of life problem for two years is the constant tongue pain. My mouth is only ever not burning up when I have strong pain medicine and then I can't drive, so I try to avoid that. It has ruined my desire to eat anything and to even talk too much. They have treated me for thrush a few times, but it is not thrush. It is a permanent pain in my tongue that I'll have to put up with forever and I hate it. My kids try to lure me out to eat by promising me cheese cake and all kinds of things, but I would just as soon drink my Boost. I find myself just sucking on my tongue full time. I think I got a lot of nerve damage in that first "little" surgery to remove that tiny tumor.

I found I did my best with the acidic foods and still eat a lot of tomato mixed in food. Go with what you have bold and he has to force feed if necessary. It seems we also lose our appetites but must have nourishment. At this time, I eat more donuts, pies and such that it's w onder I'm not diabetic. But the tests show I am fine and not close to being diabetic. All the advice you have been given here is great. They have all been there, done that. Good luck to your uncle . Self determination is the one thing not medical that works.

Bloop

Don't beat yourself up on the choice you made. If you had not done the surgery, then when your cancer came back, you would be thinking about your sister's advice. What if? What could I have done? In most cases of BOT recurrance, it's just like the American Cancer Society says: [quote]But even if you do everything just right, you can't change the possibility that cancer will come back. [/quote]

Fighter
Also share the above with your uncle since it's too easy to blame something you did or didn't do on the cancer (okay, it's too easy for me at least)
Charm

Thanks for the wonderful support from all of you. Could not agree more with Brian and Charm2017; surgery should be the last resort for BOT cases. So far for my uncle, the doctors are thinking of a combination of chemo & radiation. Has anybody received the proton radiation therapy for BOT? Can it be used for lymph nodes in the neck region as well?

so sorry to hear about ur uncle. Hope everything goes great with his treatment and hope he doesn't need surgery! My friend was treated at sloan for tongue cancer, and she loves it there, and has met so many great survivors, one that was even stage 4 and terminal and now has an all clear!
Whatever one you go to they both sound like great places. Just go with which ever one feels best to you, after you do research and maybe ask docs from both places how many cases of this they have treated and what not.
I wish you and your uncle the best and will keep you both in my thoughts!

Thanks a lot for your support, Bethers0808. Was your friend who got treated at Sloan, a Stage 4 as well? I would like to know the line of treatment in that case, if possible. Right now, we are torn between IMRT and proton therapy and trying to get a second opinion.

Hi Barbara:
This is just an idea you might want to check out. Have you had your thyroid level checked lately? There's something called "burning tongue/mouth syndrome" that is somehow associated with the thyroid level being hypo(hypothyroidism) where your thyroid medicine has to be increased, which is what my GP did when I jumped from taking 60 mg of synthroid to 112 mg in 1 year. I insisted on seeing a thyroid doctor (tomorrow) after reading some things associated with low thyroid, to include the burning tongue/mouth. Just a thought, I'll email you after thyroid dr. visit tomorrow.
Hugs,
julieann