Hi all

my question is the doc says it's rare but ??? i want your guys opinion please . ok here it is i had tongue cancer on the left side of the tongue and went through all the surgerys and radiation my last radiation was on may 2 I had a pet scan like month ago and it can back showing that there was concern on the right side of the tongue the oncologist and the surgeon both looked me over good and fill that there is nothing there but i am going in for another pet scan on the 10 of october so my question is has anyone had this night mare happen to them ?? getting it on both sides? ? my tongue feels good still alittle sore from radiation and the dry mouth but all is good i guess i am just a little scared and i am keeping the faith and just want some advice from you guys who have been there .
thanks to all you for your advice and support!!!!!
mbt
REMEMBER TO KEEP THE FAITH -FOR IT WILL TAKE YOU THROUGH IT ALL

Hi MBT. In reply to your earlier posting this I am not qualified to advise you but this is what happened to me. I was operated on in April this year. They took away 80% of my tongue. The tumour was over the half way mark.(durhhh). The main concern from the doctors was that the disease had spread further afield. Luckily, only spread down my left side neck where I had 34 glands removed of which three were infected. My MRI scan showed something up on the RHS. This is now thought to be just a mis development in the scan picture. I was seen by the radiologist a month ago and she gave me the all clear.

So to try and help all I can add is more detail about the operation. Apparently the guideleines are to remoove the tumour leaving a sufficient safe zone, in UK this is 5mm of good tissue. Now due to my case there was not much left to atttach to so the safe zone was infact only 0.5mm, as shown up by the histology report. It is because of this reason that I wa subjected too such severe after-treatment which I note you have undergone also.

So it seems to me the doctors know what they are doing, so by all means go for a check up but I wouldn't doubt their ability.

I have my first check up MRI on 7th Nov. I do however have a general feeling of well being and being rid if this mennace for good.

Keep us posted.

Like you I have the dry mouth, and my tongue is tender. I can taste most things tho, which belies belief, my numness in my face is just about gone, my LHS shoulder aches abit. But you know what, I am thinking of having my PEG out next, then pushing on with some weights, with a dream to regrow some saliva glands.

Nothing is Impossible.

Nigel

Nigel

Thanks for your reply it made me feel better !!And yes as for your saliva glands mine well some of mine did come back I had my surgeries in Nov&Dec. of last yr.and in Feb.. of this yr it came back so in all I had a total of 3 surgeies and the nightmare of 6 wks radiation 5 days a wk 20mins each and ya i have gotten some of the glands back as for taste ya it is good but I still can not taste salt or sugar but it's all good

I was not given a peg I have lost alot of weight but they say I am still doing good on my eating lets just say alot of soups and oatmeal and carnation drinks.so yes think positive and keep the faith about your saliva glands anything is possible!!!! ;thanks again
mbt
REMEMBER TO KEEP THE FAITH -FOR IT WILL TAKE YOU THROUGH IT ALL