Diagnosed with SCC of lower lip Dec 08 (had 12 yr history of cheilitic keratosis), Moh's Jan 09-1pass clear. Feb found lump under left jaw. 2nd needle biopsy showed squamous. Bilateral neck dissection May '09. Only cancerous node was the 6 centimeter tumor, all others were clear. 33 treatments IMRT with Erbitux once a week. Just had 1st PET yesterday and got a call today from neck surgeon about rt tonsil lighting up. He said it's no big deal, he has seen a lot of false positives with the tonsils on PET's. Said everything else in head/neck and torso looked great. I'm 62 and never had any serious illness before, so I'm just happy to be alive! Having a lot of soreness, stiffness in neck and back, shoulders have some degree of atrophy from the nerve trauma from surgery, and some thickening of a couple tendons in my neck/back and still don't have my energy and stamina back yet. Still having some problems with swallowing, but as I said, it's nice to still be here! I would welcome all feedback.

I can't offer you any feedback since I'm new to the board and oral cancer. I do know that you're in the best possible place for support. They really are amazing here.

Welcome~

I wish I coudl offer you some advice. I just had surgery for my cancer, but others have been through what you have. So glad you found this place. This is a great palce for support and comfort. About the PET scan light up areas around the trauma if it is not completely healed. Did the Dr. offer you any suggestions as when and if they would repeat the PET scan?

It seems I have had a few lite ups with scans and even had to sweat canceling surgery twice because of them. It was just false positives as you were told. Do as I do, ignore it and live life as it was meant. Fight the bad and stick with the good. I have been put to sleep 2 times in the last 7 days but heading out to do yard work.

2 dogs,

I have 2 dogs as well. Anyway if you haven't heard your recovery will most likely be very slow and may take all of 2 years so don't push it and don't get frustrated. Taste and saliva will probably take all of that time to recover as much as it's going to so again don't look for quick rebounds in either dept. Consume as many calories as you can and don't worry about how you get them either. Watch out for thyroid problems so have them constantly stay on top of your TSH levels. Also watch out for some post Tx depression as many have experienced it anywhere from barley noticeable to requiring meds to cope.

I had 2 post Tx scans that showed "areas that can not be excluded" and they turned out to be nothing.

Congrats on getting to this point.

Thank you, yes it looks like this is a great site!

Yes, the Dr wants to see me on Tuesday, he said not to worry about this, just wants to palpate the tonsil to make sure it's not hard. I don't know what the frequency of further tests will be, just that there will be monitoring for the rest of my life. Thanks for your reply!

Thanks Jim for the reply, yes that is what I'm gonna do, just keep on keeping on. The Dr really emphasized that he's seen a lot of false positives with tonsils.

Thanks, David, for your reassurance and also for the valuable advice. I will hang in there, right now I'm really happy that nothing real bad has shown up in this first petscan. I think I'm gonna be ok, just have to recover from the side effects of the treatment. This is a great site, I will be visiting here often.

The side affects are nasty so go in with determination and you will be fine 2 dogs. I say this with an onfire tongue and tryng to eat little soft food. LOL

Hi 2 dogs:) Welcome to OCF. The support you will find here will be wonderful, I promise!!

My experience with the PET was there are a lot of false positives. My first doc wanted PET's every 3 months. Then I switched doctors and she doesn't do them at all, doesn't believe in them. So, try not to worry about the "light up"

I didn't have chemo or radiation but I have learned a lot from the people here and I'm sure more will chime in. I know it can be a long process for some. So, take your time, enjoy your small victories and you will be just fine.

Thanks Suzanne, I see the ent surgeon Tuesday about the tonsil lighting up, he said "no big deal", and that he has seen a lot of false positives with tonsils because any inflammation caused by infection will show up, and the tonsils are the most likely to do that with an infection in that area. I'll keep hanging in there! Thanks again for your note!