Hey there. as an oral tongue cancer patient I have to tell you that while chemo works well for HPV+ cancers there is no proof that induction chemo will work on non HPV - two different causes two different responses. I am not saying don't try it. I am just saying that time is important and this cancer can be tricky.

Chemo is usually used in conjunction with rads because it works to soften up and damage the tumor so the rads can kill it But for your type of cancer surgery is the first line of defense with a follow up of rads and chemo if need be (with the size of the tumor and the PNI - I would be surprised if it wasn't needed) I'm sure someone here will correct me if I am wrong, but I as far as I know chemo isn't curative or overly effective. (and think of it this way - you have a tumor in 90% of your tongue - so they do three months of inductive chemo - then it shrinks say maybe to 60% - being a dr. I would still take the whole tongue or most of it to get margins and guarantee there are no cells still lurking - so what have you accomplished?) Maybe you can suggest they try rads and chemo first with an eye on surgery post treatment. But the problem with that is that tissue has a difficult time healing after it's been radiated. ROCK - meet hard place. It's a difficult decision.

I also know that no one wants to have a total glossectomy - which is what your dr. is suggesting but you need to know that it has been done successfully and eating and drinking and talking (though with a lisp) is very much a possibility after all of it and you've healed. This is where the skill of all of your drs comes into play.

You need to be at a top CCC (sloan is one of them) with the best Drs./surgeons.

You have two young children. You are young yourself (I was only a couple of years older when I was Dx'd so I know exactly what you are going through). My only plus was that I had 3 children who were almost adults (had my kids very young) I guess my point is... do whatever you have to. If it means a glossectomy - then do it. If it means a neck dissection - then say okay... schedule me now. I know it's daunting but realistically this cancer is aggressive and deadly so do whatever you can now to stop it in it's tracks.

I know that's probably not what you wanted to hear but I've never understood the tentative approach to this cancer.
I know some people are all quality of life yada yada yada. Well aside from the fact that you can have a good quality of life post this surgery / treatment despite how radical it is, I would also say you have kids a family and people who love you.

also this is an add on because I just read your other post. If your dr is telling you he has no way of determining if it will work that's a red flag right there. He is experienced - he does this all the time - this is what he does. If it worked he would likely have suggested it from the outset. Drs will not tell you what you should do. Assuming he is a top ENT - at a CCC then you can assume that he does this all the time (in fact this is ALL he does) then his advice is based on years of experience. Please give it the weight it deserves.

Now I'll shut up.

Hugs.... and many blessings to you. and I am so sorry you have to be here...


Last edited by Cheryld; 06-17-2015 01:01 PM.

Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan