As most of you know, I have only had glossectomies, no radiation or chemo. I still have some random pangs of pain where my glossectomies have been. Common sense tells me this is normal but I don't seem to get a straight answer from my doctor.

Any thoughts on this are appreciated. I guess just knowing radiation may be in future SCARES me, and these pangs makes me think it's back. My doc said she doesn't want to do it now because I could be a candidate for it in the future. If I have to do that I know I can with all the support here but man...it scares me so much.

I am only 8 weeks out of surery, but my ENT told me that I may have pain in the tongue area for 6 months or more. He said that it make take that long for it to completely heal. I know what you mean about pangs of pain. I have them quite a bit and always worry about whether or not it could be more cancer.

Hi Angelina,

Thank you for such a speedy response!! Looks like we have had similar treatment so although I don't want either of us to have "pangs" it makes me feel better that I'm not alone. My last surgery was in Feb 2009 and it was my 4th one. I think I should anticipate some pain. Thanks for letting me know what you ENT said. That's another questions I have...most people here have seen an ENT, and I see a surgical oncologist. This is Suzanne's Stupid of the day....are they the same?

Suzanne, it's been just about 2 years for my surgery and my tongue really feels no better than it did. Everything and everything make it hurt and burn, I hate to be so blunt, but if you are like me, you want the upfront truth and not some prefab story from some that really don't know.

An oncologist is your cancer Dr, an ENT LOL who knows.

I have not seen an oncologist yet. I May be stupid in the area, but I really trust my ENT. He has done research in head and neck cancers and studied under a head and neck cancer Dr.

I had pain for around 6 months - it took forever for the mouth sores to heal - they took the longest time. I also had numerous bouts with thrush, which caused a lot of pain and burning sensation as well. From my own personal experience I found the MO to be the most understanding about the meds I needed, but maybe your ENT, surgeon or even PCP is the right one to ask, try them out and see where you get the most satisfactory results. Many institutions now have pain management specialists as well.

I guess my problem is whenever I feel something I think "oh no..it's back" I try to reel myself back to reality and remember my last appointment in June where the doc said "all looks good" but....after my last surgery, it was severe dysplasia on right tongue and moderate dysplasia on my left cheek. Am I just supposed to live with this? How do I know when it's changing to cancer? In my experience when I have more pain that's when we do surgery.

Suzanne,
I am sitting in my bed doing the same thing. I woke up this morning with a pain in my hard palate, near my last molar on my right side. This pain shoots off into my ear every so often. I am trying to tell myself that I just have a spot that's healing, a nerve or something. I just had a ct scan that showed not one thing to worry about. So why am I worried? I'm afaid it's going to be like this for at least the next couple of year.
Amy

Suzanne, as mouthy as I get and as tough as I act, I worry too and just about everyday. It seems the pain is always making a reminder to us,.One day tho.... " POW RIGHT IN THE KISSER" as Jackie Gleason used to say to Alice LOL.