Previous Thread
Next Thread
Print Thread
Joined: Jul 2012
Posts: 50
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jul 2012
Posts: 50
Hello. My name is John. As my signature says I had a small portion of the right side of my tongue removed after they found a dime sized tumor that I thought was a canker sore and caused me immense pain.
That was 2 years ago.
Now I have dry mouth after radiation and it feels like the side of my tongue that didn't have cancer is always tender, can't stand most tooth pastes and it gets stuck to the side of my teeth while sleeping.
Well I bit it or something a few weeks ago and it healed but today I woke up and looked at my tongue, the side that didn't have cancer where I had bit it or cut it had what almost looked like a white scab. I peeled it off but now my brain is like "you have cancer again you have cancer again".
Have any of you expierenced this? I'm going to see my ent and onc soon but in the mean time I was wondering if the other side of your tongue getting hurt by the dry mouth is normal since the other side of my tongue can't touch my teeth and if anyone has had similar expierences. I'm kinda freaking out.


Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
You are doing the right thing to get it checked out. Let us know.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
I agree with David, get it checked, so you won't have to worry about it.

With your rads being two years ago I'm interested in what other things you've expeienced over the last two years. I'm about 18 months behind you.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: May 2012
Posts: 31
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: May 2012
Posts: 31
Always check this stuff out...if for anything, the relief in hearing that you are fine.

And it's perfectly normal to get freaked out. My initial reaction to ANYTHING happening above my shoulders is to freak...then logic kicks in, and I calm down a little. Give whatever is going on a couple days to resolve itself, and if it doesn't I run to my ENT.

p


Nasopharyngeal Carcinoma Stage III T1N2M0, diagnosed March, 2012...Treatments started April 24, 2012, finished 8/28/12.
Joined: Jul 2012
Posts: 50
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Jul 2012
Posts: 50
Thank you for your support. The white scab like thing and sore went away. Phew!
N74tg- as far as I what I've expierenced the first 6 months after radiation were the worst. I got mucositious bad and kind of lost all hope. I couldn't talk or eat properly. I lost a ton of weight, lost all but a few of my friends and was pretty isolated from most people. I was drugged to the high heavens and pretty much was in a haze.
I had the magic mouth wash I held in my mouth all day everyday unless I went to bed and if it hadn't been for me being so loopy from all the pain meds and very mildly and very accidentally slightly overdosing and vomiting I would have never know I didn't need the magic mouth wash or the pain meds anymore. That's when life got a bit better.
It was really an experiment to see what real foods I could eat. I just never knew what would be easy and go down like a dream or make my mouth feel like someone had poured gasoline in it and lit a match and threw it in.
The dry mouth was also pretty severe. I'd wake up and if I didn't remember I had to take a drink of water before trying to talk or wake up I'd end up peeling the opposite side of my tongue off my teeth and causing a minor wound.
This has all improved greatly and you figure out things that help yourself.
Flash forward to now and I'm eating pretty normally. Even foods I never thought I'd eat again, like taco bell. Some really spicy foods still bother me but for the most part I can eat what I want. And after trying that biotene stuff and realizing how little it worked and that it's not really meant for people with dead saliva glands I found if I chew gum through out the day it's as if both saliva glands are normal.
I still end up hurting the side of my tongue that didn't have the cancer regularly because unlike the side that had the cancer this side does touch me teeth and does most of the work. I wake up and still end up hurting it most days which adds to the panic like I had above.
I will say your mouth will never be like it was and you'll never not worry and at least for me there isn't a day I don't think about it.


Large sore on right side tongue. Had for 3 mos. biopsied came back stage 2 well differentiated tongue cancer. Partial tongue removal and neck disect. On feb142012. Rads for 6weeks finished in June. Couldn't speak or eat for 5 months. Clear pet scan dec 2012. Former smoker hpv- 27male. Recent ENT visit said "as far as I can tell you're cured" 💗
Joined: Mar 2014
Posts: 286
"OCF Down Under"
Gold Member (200+ posts)
Offline
"OCF Down Under"
Gold Member (200+ posts)

Joined: Mar 2014
Posts: 286
Thanks for your perspective. I'll try the gum!


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5