Well, I finished treatement back at the end of June. Thought all was going very well. I was doing all I was told to do. Eating at least something everyday to stimulate the tongue to regain my taste buds back. I was working in the garage refinishing some furniture and doing well. The last two weeks though have been bad. My tounge is swollen bad. The tumor is really swollen and so now is the lymph node. Went to see the R/O and he says He thinks the cancer did not respond to the treaments. He thinks the mucas membranes are now affected and may need surgery to clean it up in the back of the throat. I am on steriods to help with swelling, but the tumor is not responding to that well either. It feels like it did back in January when the whole mess started only worse pain now. It is as if we have pissed off the cancer and it is coming back tri-fold. I have to get a biopsy to confirm, but must wait on medicare or medicaid to kick in and get approved. My fear is that they will want to cut out half my tongue to rid the tumors and get clear margins. Life goes down from there I hear. How long can you go with only half a toungue? Or worse yet......no tongue? It gets tougher to keep that strong upper chin I tell ya!

John, When your tonsil was removed I would think that the surgeon removed any tumors and nodes that could be affected. There are other conditions that can cause swelling after surgery such as lymphodema ( a build up of lymph fluid). Same with membranes after radiation, red,swollen. My tongue was also swollen and felt very thick and heavy. My taste come back somewhat. I don't eat apples, oranges,lemons,pickles (anything tart). My salivia is back well enough. The biopsy is the most important thing! It will tell which way to go. It is a big worry about the tongue, but there are solutions, such as grafts from your forearm. It works quite well in someone I know. Try not to think of all the worst things that can happen in the future. Worrying and Stress are bad for your health is what I say to myself. We do what we have to do. It always seems worst when we think about it, especially late at night. Take some deep breaths and wait patiently for the biopsy results.It's the best thing to do. There are lots of surprises on this journey! Live Strong Tom Roussell

You can go forever with half a tongue! Heck I'd give 3/8 of a tongue to get 1/2 a tongue...lol. My first surgery they took half, my next they took 3/8 of what was left, leaving me with 1/8 of my original tongue. I wish I could send you a pic because you would see that I am DEFINITELY not fading away!

Kate used to be around and she had her entire tongue removed - she was doing great.

I know this is hard for you, but hang in there and go through the surgery required to rid the beast. You can and will get through it.

Donna

I have a little less than half a tongue and I'm planning on going a LONG time with that seeing as I'm only 23! I do have a flap from my forearm and my only complaint about it is that I don't have feeling in it and I "lose" food on that side of my mouth sometimes! Having half a tongue is definitely better than having cancer! It didn't take me too long to relearn how to use it either!

John:

Im so sorry to hear of your latest ordeal. Its such a rotten feeling thinking that the cancer is back. Remember only a biopsy will tell for sure if it is cancer again. Luckily you have a team of doctors ready to help take care of this. If it is cancer, then it has been caught very early this time.

Ive been thru this awful feeling too. What helped me get thru my recurrance was knowing I did it once and I could do it again. My second round made me angry, I was tired of not feeling well and people treating me differently. I was never one who thought 'why me', I always thought ok I have cancer lets fix it and move on.

When I had cancer the first time it was located in two different places in my mouth. My cheek had a sore for at least 6 months and behind my molar had a spot for about 2 months before I was officially diagnosed. That cancer could have been there for months before it showed itself. I rationalized it with knwoing I had a clear pet scan then 3 months later cancer showed up, this told me it was caught very very early for a recurrance.

Please try to find some comfort in knowing that it has been found early, that is IF it is cancer. You are still trying to recover from going thru treatments and your body is changing trying to heal. If it does turn out to be cancer then its early. Im hoping its nothing, but if it is back, you know there is support just a quick post away to help you thru it.

I will say this, tis nice to know that people have been through at least parts of what you have in order to help. This reaccurance is not a different one it is the same as was before. I declined the Free Flap surgery. I see that it masy have been a mistake. However, I did not know that my body would not respond to the treaments either. YET< this all has to be proven via cat scan and biopsy. Still waiting and the beloved medicaid approval.

Johnny,

The free flap isn't so bad, really! Compared to radiation, its a piece of cake. For me, the most painful part was the site on my thigh where the skin graft was taken to cover the donor site on my forearm. That stung like a !@#$%. But once the swelling on my tongue went down, I was able to speak and eat very normally.

Don't sell yourself short. You got through it all once, you do have it in you to do it again!

- Margaret

Johnny,
I had no problem at all with the skin graft from my thigh or donor site on my forearm. At a couple of visits this year with the plastic surgeon, the offer was there to reduced the size of the shark bite but it does not bother me any more and I now have a great range of watches with from 1" to 2" modern,trendy bands if I want to hide it :-))

I'm still recovering from my Free Flap, but it does indeed beat heck out of radiation! Wrist is great and thigh didn't bother me much except for a little stinging. Still using PEG, but drinking stuf and occasionally eating slippery stuf like pasta, so I expect to be eating again more or less as normal -- Not sure about the talking however, but I am getting by, even on the telephone.

Hey Johnny,

I had almost 50 percent of my oral tongue removed and I'm doing okay. In fact, every day it gets a little better...just in time for radiation. No free flap...not even discussed...I'm not sure if I should have had it or not. The biggest issue is that I talk a lot slower and I loose food on my left side. I have a feeling if the numbness leaves...then I would be able to talk a lot better. The numbness from my neck dissection bothers me more.

I saw something after surgery and was concerned...Heck, it just freaked me out and I was a major pain in the a$$ to everyone around me. My Doctor's told me that I went through a lot and it was only a couple of weeks post-op...to calm down and let the healing process to take it's course. I suppose I was being impatient. Since then my half-a-tongue is looking pretty good.

Good luck

Johnny any updates yet?