Amazingly - you will get some sensation back in the replaced area (assuming they did a good job) I'm 32 mos out of surgery (the same kind you had, they removed and replaced a 3rd to half of my tongue on the left side.) and I can feel it if I bite my new tongue, I can feel it if there is food caught there and my mobility is remarkable for a tongue that isn't really all tongue. it starts off almost like bee sting in sensation but its gotten better. Try to chew and eat on your good side, or drink that way too. Thicker liquids will help you get food down, (milk? A smoothie?) and if you hate the nutritional drinks make your own protein smoothie with stuff you like. Hugs and keep on truckin'

lvredrock - I understand your frustration. I had invasive squamous cell 5 years ago under the tongue. T1N0M0. It was surgically removed. For 3 years my followups were perfect. Then they noticed something, wasn't cancer, but the topology had changed. Surgically removed. Now at the 5 year mark, it's back - not invasive, caught early. Also, NOT HPV, and I also do not (and never have) smoked or chewed. Everything I read says survival rates are cut in half on recurrence, so naturally I am scared. My doctor also says that there is no explanation for the recurrence, just that this is what happens, the body just doesn't build those cells correctly anymore - and that this may go on for the rest of my life - round after round.

I have an excellent doctor, but it seems, in this arena, nobody really understands the cause or why it keeps coming back.

I guess the good thing it to keep catching it early, but the bad part is constant surgery.

I'm looking for answers - does anybody know if that stuff on the internet about survival rates cut in half for recurrence is true?

Does anybody understand why it keeps coming back?

Mathew1,

There are all kinds of statistics out there, some outdated, and for different type cancers, including any negative aspects like extracapsular spread, lymphovasculsr invasion, Perineural invasion, positive margins, etc, and that they are even debatable, have different levels or involvement, and may not all be the same negativity, including distant metastases. It also depends if there is nodal involvement, if so, I heard the rates are cut in half, on both sides, half again. Sounds like persistent cancer. It could be from field cancerization from exposure to a carcinogen or other, metachronous or synchronous cancer. I don't know if I read a recurrence cuts the survival rate in half, I forget, and I looked, and had 5 recurrences myself. Good luck.

So, is my understanding of "field cancerization" correct, in that it is not a NEW tumor or even a recurrence, but rather a tumor caused by cells that existed around the original tumor that were not removed initially (because they didn't show as cancer at that time).

Pretty much correct, but it can be a new tumor, synchronous, in the aerodigestive tract that was normal, pre-malignant, but undetectable at the time.