Update On Tongue Surgery W/Graft

It's been 5 days since surgery and am in some pain but nothing too awfully bad. I have hydrocodone when I need it. Before I couldn't swallow well because of the thick mucus 3 months after last radiation, and the mucus is still there but now my tongue hurts so I still can't swallow! Thank goodness for the PEG tube. Can't brush teeth or take a shower (due to graft from upper leg) until after May 8 when I see the surgeon again. How bad is that? I have some prescription mouthwash that kills bacteria, etc. so that's a plus. Now on to thinking about a PET scan and eventually eating solid food again. 

Becky  

Can you tell me your story? I may be facing the same thing at some point. I had SCC of the left tonsil and went through 35 raditaion treatments that ended Feb. 25th. Never was there a discussion or concern about my tongue. Now all of a sudden the ent has noticed something under my tongue, way in the back left corner. He is waiting 4 weeks to see if it heals on it's own becuase it could be radiation fallout. If it is still there, they'll need to do a biopsy of it.

Tell me what you've been through.

Thanks and God bless,

Rick

Question for you'll.  Is your tongue any different since radiation???  Mine seems to have been swollen since the radiaition.  I seem to be going in some form of cycle.

I get blisters due to the dry mouth, then they multiply, I take Difulcan immediately, cause I know the thrush is coming, then after a few days of pain, the thrush starts up, Ioose all taste and in deep pain.  And then I start using the Pink Magic for relief at least to put down something in the stomach.  Even water hurts to put to the lips.  I know it will be better in a few days, it is just sometimes unbarible at times.

Thanks, Patricia'

Patricia,

No, I've never had any of that. I have painless white bumps on the sides from time to time that I was told is from the tongue sticking to the teeth at night because of the dry mouth. I did notice a swollen area on the left back and was told nothing to worry about. It's what is going on under my tongue now that has everyone concerned.

Rick

Rick, here goes:

I was diagosed with SCC, pharyngeal cancer last Nov. that was very near voice box so they couldn't operate first without removing it. I don't know what stage it was but the surgeon said it was "bulky." I had gone to an ENT because I was having trouble swallowing and there was a beginning-to-be painful lump on the left side of my throat.  At the same time there was a small lesion, also SCC, under my tongue, same side. Dr. wanted to wait until radiation (total of 33, with 7 Erbitux treatments) was finished before removing it. I haven't had a PET scan yet--was scheduled for last week then this surgery came up so now I have to wait again. I was scoped last month and there were no visible signs of cancer left in the throat, but of course a scan will be the final "judge." Strange, but I was never bothered by the lesion under my tongue so I can't say anything about that part. I'm just waiting now for May 8 when I go for a follow-up. My tongue is still swollen and painful so it's even hard to get a sip of water down. Wish I could tell you more--good luck and keep us posted.      Becky 

Hi Becky. I had tonsil cancer, stage 4a, and finished my treatment ( cisplatin and 7 weeks IMRT) in October, in January I had a fairly invasive biopsy of several sites inside my throat (under general anasthesia), shortly after that I had a LOT of mouth pain and tooth/gum sensitivity to temperature and sweets. The ent told me it was a combination of trauma from the procedure with a topping of thrush. It eventually went away after 2 weeks of diflucan, along with painkillers and Magic Mouthwash ( my formula had Nystatin in it).

To help control the thrush, I use Biotene toothpaste and mouthwash for drymouth (because drymouth promotes thrush) and I eat active culture yogurt and take acidophilus supplements which fight the organism that causes thrush.

We're looking forward to your clean PET scan too, nothing better than a clean scan.

Best wishes ( and fingers crossed for you)

Mike