thanks again guys...

they're confident of getting a clear margin when they do the surgery. also doing a partial (i think) neck dissection to remove my left lymph bits and pieces. My surgeon says if they get clear margin (tongue) and clear pathology from the lymph nodes then they will prefer not to do radiation cause i'm still kind of young (32), and you only get one go at being zapped.

meeting the plastic surgeon on friday so will get the lowdown on how he is planning to turn some of my wrist into some of my tongue!

best,
jp

Have they confirmed through a biopsy that you have nodal involvement? If not I would not be inclined to do a potentially unnecessary ND especially at your young age.

It is also not necessarily true that you can only be radiated one as we have had several members here get it more than once and some even to the same area.

These are just my opinions and I am not a doctor of any means.

not confirmed yet. I was unsure about that too. will do some more asking, thanks for your thoughts on that.

JP,

We have quite similar situation in that my primary is on the left side of the tongue, and it took me also about 3 months from what I also thought was tongue ulcer to getting biopsy results confirming SCC. I did have nodal involvement, however, and underwent ND and total glossectomy, per my signature.

Regarding turning your wrist as a potential future part of your tongue, you may also want to bring up with your doctors the possibility of getting tissue from your thigh, like in my case (left thigh) which was preferred, aesthetically, over getting tissue from my forearm/wrist. I have no regrets with this choice, but there might be other reasons in your case for the wrist.

Jojo

thanks for the advice Jojo
I met with the plastic surgeon yesterday and he decided he wanted to take it from my upper arm just above my elbow.
he said better skin to work with and bit bulkier. i'm not fussed about how things will look, so i've given him free reign to take it from wherever. Whatever bit gives him the best chance at giving me chance to speak reasonably normally (hopefully sing normally!) and eat and all that stuff.

was a fair reality-check of a day though i have to say.

anyway, thanks again to all who dropped in with advice/well-wishes....i hope christmas day finds you all eating some tasty food and sharing the day with good friends and family.

peace
jp

JP,
First of all welcome to the OCF Forum.
You have already discovered how valuable it is for getting helpful advice from those who have experienced OC as either patients and carers.
As you can see by my signature I had the flap from my wrist and while it is a crater that I refer to as a shark bite if asked, it does not bother me anymore when people see it and look puzzled.
Just one thing re taking the flap from the wrist is that there is little hair and even though I had some growing initially I think with time it rubs off. Will look at my mouth again in the mirror shortly
Someone mentioned the thigh and I see yours will be above the elbow. Suspect it will be from the inside also which would not be too hairy?
The very very best wishes for the operation on Monday.
Where are you in Australia?
Gabriele

Hi Jon,
Good luck with your surgery.�

As you can see from my signature, I was a Stage I with a neck dissection.� No chemo and no Radiation. I am very close to 5 years.

Hi Jon and welcome aboard our slow moving express special of surviving. I will taste Christmas Dinner if they have some good home made dressing with potatoes and dressing. We musn't forget the home made pie with well cooked apples. It might sound strange, but with this mouth, apples have to be almost sauce to be edible. Merry Christmas all. Notice I didn't say Happy Holidays!!!!I celebrate for Christs birth not some idiot's misery he trys to shove at us. JIM

hi Gabriele

sorry i didnt see your post earlier, so replying now!

yup they went for above elbow, but on the lateral (outside) of the arm along the bicep muscle. PS said best tissue to work with there, and will give me some bulk in my new tongue.

you might have spotted one of my other posts about the nerve damage i've had as a result of the graft. annoying, but slowly getting over it i think. still not able to sleep without painkillers because of it though which is a bummer.

my arm not very hairy where they took it so i might get lucky and not get a hairy tongue!

im in sydney also, was on the northern beaches, but moved out of my place back to mums (inland a bit!) before going in for surgery. staying here till i start working again regularly.

cheers
jp

I, too have just been diagnosed, having an MRI Friday, and scheduling surgery within the next few weeks. I appreciate the advice to eat, and I am going to the fridge for some ravioli as we speak. I have already lost 20 pounds because of the ulcer on my tongue, so do not want to lose too much more. Proud to weigh what I did when hubby and I met 18 years ago, but unfortunate that it is due to SCC.

Barb