Ray,

Your Primary may have been too large for Radiation alone to handle.

I was told radiation alone is only considered effective if the tumor(s) are small (somewhat less than 2Cm in size).

Radiation and Chemo is considered effective on somewhat larger tumors since the Chemo sensitizes the cancer to the radiation, but I don't know how large of a tumor this combo can effectively handle.

Rita-

I had right at about half of my mobile tongue removed and a free flap put in its place. I eat whatever the heck I want to! From pizza to croutons or fried food and soups. So, I hope I don't ever wear a hole in my flap! Haha. I can stick my tongue out of my mouth about a half an inch and I can touch my teeth up to about half way back except for the bottom teeth on the side of my flap - I can't reach beyond my incisor tooth on that side! My biggest complaint is that foods get stuck in the area between my original tongue and the flap - there's a crevice there which I'm told is normal. I also still have the tip of my tongue and on the very outside edge the graft didn't connect all the way so I can wiggle it separately like I have a bifurcated tongue! It's kind of a neat trick! My flap was placed during the same surgery that the tumor was removed in. I had a second surgery though for the graft on my arm about a month later.

Pete

It sounds to me like we have had the same surgery on the tongue or close. I still have the back part of my tongue, they told me that they removed 80% of it. Then I have a flap which was constructed from my right pectoral muscle, attached to the base of my tongue and sewn to the floor of my mouth. At this point I can not move food back with it though. I am glad to hear that you can and I am hoping that will come with time, practice and after radiation ends and the mouth heals. What types of foods can you eat?

My doctors also wanted the radiation to begin as soon as possible and it was started 6 weeks after my surgery, once the incision had healed. My tumor was a fast growing one also and was over 4 CM from June 8 to Sept 25 when the surgery was done. I wish that I would have pushed for follow up PET/CT's after my first surgery. The oncologist said that I did not need him anymore when I went on to radiation and I believed him. My ENT never mentioned having another one and they all kept telling me that it is mostly visual check ups. I started having the night sweats and the hot flashes again last winter but wrote it off to menapause since I was now healthy and "cancer free".

You are right Pete - there is no way to not adjust. Some days are better than others. Again I appreciate you because I am learning so much from your posts and you give me hope.

I did the whole thing backwards, having my radiation two years before the new tumor started growing -- The surgery on top of the radiation has left me with very thick scar tissue under the skin of my neck (Plus the visible large "W" scar that no doubt Doctor Haakenslash and the Cutthroats made in honor of UDub!) -- Lymphedema physical therapy is helping that.

I considered sword swallowing, because my gag reflex is almost gone, but the scarring keeps me from tilting my head back far enough to get a straight line from BOT to stomach -- Maybe I can find a curved sword after I have some throat dilation -- Or maybe I'll just stick to plastic flies...

I forgot to mention the food -- I can eat stuf that is not crunchy or spicy -- I have to cut it into little pieces and chew it well, which is not always easy because of my recycled tongue's limitations -- I have apple pie with some milk (or eggnog), but don't eat the dry edge crust, for example -- Nothing like rice or couscous because the smaller, non-clumping particles are more likely to be aspirated.

Very similar to what I am experiencing - after radiation I plan to try some new things like softboiled eggs. Right now everything burns and I'm not taking much by mouth except liquids.