#54512 03-12-2004 04:32 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | OP  Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Hello all, Eric here... I haven't posted in awhile, and actually I've been doing pretty well of late... My doctor doesn't like that my weight dropped again, but other than that he believes I'm healing up well...
That being said, I've had some interesting pain on the right side of my tongue/mouth the past few days. It reminds me of the pain I felt on the left side of my tongue before my cancer diagnosis. It kind of shoots down into my neck and up into my ear... I looked into my mouth tonight and I noticed a think white line on my tongue -- toward the very back (the opposite side of my tongue where my original tumor was).
It could just be iritation from food (I'm trying lots of "normal" food again, even Chinese food) or from my teeth rubbing, but of course everything out of the ordinary freaks me out... Anyone else have something like this as you healed up? It's been about 8 weeks post-radiation for me... This is the most acute pain I've felt in weeks...
Any thoughts? Am I over-reacting? I hope so, but I don't want to take any chances...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54513 03-12-2004 06:52 PM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | Hi Eric,
I initialy had a sore under my tongue that was biopsied in May 02. Results were negative. In September 02 I started noticing a white line where the biopsy was. Saw the oral surgeon immediately and he said Keep an eye on it, you may have a lumpy tongue. My dentist saw it in March, by that time it had developed into SCC, lucky for me stage 1. Everyone is different, but if it were me, I would check it out.
Sincerely,
Lisa
PS Edited to note that I did NOT have radiation and can't respond from that perspective. I am sure you will get many responses from folks that did have radiation.
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#54514 03-13-2004 03:00 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Eric,
You need to get everything new in your mouth checked out BUT if I learned one thing after radiation it is this............there are going to be so many weird things pop up in there. Brian told me one time to "be prepared mentally for the TONS of things" I would find in my mouth. The first thing I dealt with was an ulcer on the end of my tongue, had it biopsied as it hung around and it was negative for cancer. It is much smaller but is still there. I also have an area on my cheek that I continue to bite, both sides of my tongue have some trauma from my teeth and from eating all the new foods.
I have a feeling this will continue for awhile yet. Please have it checked out but at the same time take a deep breath and remember that the inside of your mouth is very delicate right now and things will take a bit longer to heal.
Take care,
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#54515 03-13-2004 03:30 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Minnie, you and others always have a way of bringing comfort with your posts -- thanks a lot... My gut is that some food has iritated the back end of my tongue pretty good, as I'm trying to delve back into the world of normal again (even dry foods, which I know I should avoid for awhile)... Since I keep biting my tongue on the left side when I chew, I tend to send most of the food down the right side, where this iritation is... But it still freaked me out to feel this type of pain and then see a little white patch last night...
Consider this my deep breath... ahhhh...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54516 03-13-2004 07:58 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Eric,
I don't bite my tongue much but I have turned my inner cheeks into hamburger more than a few times. They tell me it has nothing to do with the treatment but it wasn't that way before as I can recall. I also notice a lot of stuff in my mouth that I was oblivious too before. So far all have been normal parts of my anatomy. I still have unusual pains from muscle damage from the radiation which is a part of my "new normal".
It takes time to sort out the stuff that is normal vs. stuff that you should have genuine concern about. I relied heavily on my doctors to educate me and people on the site (like Joanna) helped a lot too. It's all part of the rite of passage of being a cancer survivor.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#54517 03-13-2004 08:01 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | The little white patch could very well be thrush also...
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#54518 03-14-2004 04:11 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | OP Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Hi everyone, thanks for the responses... here's the deal as of today (Sunday night): there's a little white streak on my tongue that is still there from the other night... I think that might be thrush or the last remaining white layer of mucosa (spelling?) that used to cover the entire right and left sides of my tongue right after radiation...
What really is giving me pain is where my tongue and the floor of my mouth meet, way in the back on the right side. It's hard to stick my tongue out very far as you can imagine after all it's been through, but we shined a flashlight in on it tonight. My wife says it looks like it's been cut or something. It's definitely irritated somehow and definitely bothersome when I eat... I'm wondering if my jump into eating real foods has anything to do with it since I was on a liquid diet for so long... Anyway, I'll probably call my doc tomorrow and at least have them look at it for my well-being...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54519 03-14-2004 08:27 PM | Joined: Feb 2004 Posts: 45 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2004 Posts: 45 | Being checked out by your doctor sounds like a good idea.
Khaja
SCC Base of Tongue Stage IV. Diagnosed 12/02
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#54520 03-15-2004 06:12 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Eric, The fun we have looking in places we never looked before!  There is a thing called "geographic tongue" that is a benign problem. It shows up as white lines in a random pattern like borders on a map. You may very well have a problem with thrush. Last of all the "irritated" area is most likely because of the problem we all have with no saliva. If you haven't tried it yet get some Biotene mouth wash, and use it. I frequently get raw irritated areas on my tongue and other tissues. Yes they will cause panic attacks. And YES you should make an appointment to have things checked out. More than likely the problem will go away before you get in the dr.'s office. If you are going to be looking in there with a flash light, get used to having the panic attacks! EVERY time I do that I see something that is sure to be fatal. SO FAR I HAVE BEEN WRONG!  Trust your doctors to do the looking.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#54521 03-15-2004 09:06 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Mark,
I can really empathize! Every little pain, every new nook and cranny causes a quick acceleration in the heartbeat, for sure. I tried to get in to see the doc four times when my mouth hurt so bad I couldn't breathe and every time it was cleared up when I went to see the doc. It turned out to be one of the many faces of thrush and is a bugger to get under control.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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