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#157580 - 11/14/12 08:50 AM Oral tongue SCC - can you stick out your tongue?  
Joined: Oct 2011
Posts: 67
Shauneen Offline
"OCF Canuck"
Shauneen  Offline
"OCF Canuck"
Supporting Member (50+ posts)

Joined: Oct 2011
Posts: 67
Calgary, Alberta
I can only reach my front teeth now. I used to love sticking out my tongue at my husband when he was being goofy. I can't lick my lips or an ice cream cone.

I had 1/2 of my oral tongue removed and my surgeon said that it was a matter of no strength on the part that was removed - it's skin from my wrist now - but I can't even wave with it. Hahaha...

It's not tethered, but there is a big lump of skin under my tongue that I can't stretch out. It pulls, and my tongue just goes sideways.

What is your experience?


Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
#157581 - 11/14/12 01:07 PM Re: Oral tongue SCC - can you stick out your tongue? [Re: Shauneen]  
Joined: Dec 2011
Posts: 124
emilyp Offline
Senior Member (100+ posts)
emilyp  Offline
Senior Member (100+ posts)

Joined: Dec 2011
Posts: 124
New Orleans, LA
Unfortunately I am in the same exact boat! the speech pathologist told me to get some gauze and pull on it a few times a day to stretch it. It seemed to help a bit, but it would only be able to stick out a tiny bit further temporarily, and the next day it would seem to shrink back. I stopped doing it because it was starting to irritate my tongue, but I might try again. My real tongue will stretch, its the flap that has no give.


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
#157588 - 11/14/12 04:32 PM Re: Oral tongue SCC - can you stick out your tongue? [Re: Shauneen]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
Hi, maybe I had less removed but it has to be close to a half. I can stick my tongue out. Probably not as far as I used to, but I can - I can lick a cone and wet my lips - the tongue pulling to the side is normal and typical of this type of surgery (go figure) try to strengthen your real tongue by doing the exercises. This may help, and the surgeon may be able to adjust the tightened skin.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
#157598 - 11/14/12 09:36 PM Re: Oral tongue SCC - can you stick out your tongue? [Re: Shauneen]  
Joined: Sep 2006
Posts: 1,332
Pandora99 Offline
"OCF Canuck"
Pandora99  Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Sep 2006
Posts: 1,332
Winnipeg, Manitoba Canada
My tongue can make it all the way to my lower teeth - which is where it rests anyway!

Lots of things I miss, but I am still here. I am very excited that now neither stamps or envelopes require licking wink

Donna

Last edited by Pandora99; 11/14/12 09:37 PM.

Donna,63, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!
#157605 - 11/15/12 02:22 AM Re: Oral tongue SCC - can you stick out your tongue? [Re: Shauneen]  
Joined: Sep 2012
Posts: 379
tina77 Offline
"OCF Canuck"
tina77  Offline
"OCF Canuck"
Platinum Member (300+ posts)

Joined: Sep 2012
Posts: 379
Edmonton, Alberta, Canada
My tongue was 1/2 gone and I can stick it out almost all the way. I stick it out whenever someone wants to see it!


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
#157618 - 11/15/12 02:34 PM Re: Oral tongue SCC - can you stick out your tongue? [Re: Shauneen]  
Joined: Dec 2011
Posts: 124
emilyp Offline
Senior Member (100+ posts)
emilyp  Offline
Senior Member (100+ posts)

Joined: Dec 2011
Posts: 124
New Orleans, LA
I am jealous of you Tina! I guess it just depends on exactly what was taken. I know they took a small part of my base, extending to half of my oral tongue, so I think the combined effect of that has hindered my ability to stick it out, I guess? I would say that maybe the surgeon didn't make my flap big enough, but I don't think that is the case, because it mirrors my real tongue perfectly. I think the flap tissue just doesn't stretch.

I think my inability to stick out my tongue is the main reason why my speech sounds the way it does. It is very hard to make the "l" and "th" sound when your tongue can't go past your teeth. I subconsciously tend to jut my bottom jaw forward to try and compensate, but I don't think it is good for my jaw. Do you have the same issues Shauneen and Donna?

As long as this darn cancer doesn't come back though, I can live with my limitations! I can still eat pretty well, which is way more important smile

Last edited by emilyp; 11/15/12 02:36 PM.

Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
#157631 - 11/15/12 08:12 PM Re: Oral tongue SCC - can you stick out your tongue? [Re: Shauneen]  
Joined: May 2011
Posts: 267
msmac Offline
Gold Member (200+ posts)
msmac  Offline
Gold Member (200+ posts)

Joined: May 2011
Posts: 267
california
I could not stick my tongue past my lips at first but after a year of doing the stretching exercises I can stick it out about 3/4 of an inch and it is much stronger and more mobile overall.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
#157697 - 11/17/12 08:27 AM Re: Oral tongue SCC - can you stick out your tongue? [Re: Shauneen]  
Joined: Oct 2011
Posts: 67
Shauneen Offline
"OCF Canuck"
Shauneen  Offline
"OCF Canuck"
Supporting Member (50+ posts)

Joined: Oct 2011
Posts: 67
Calgary, Alberta
Yeth Emily - but I have twouble with 'S' and 'R'.

And Tracy - good to hear that stretching can work. My surgeon said to give it another year and they can take another look at the scar tissue.

In the meantime, I will continue to yawn as wide as I can, and stick my tongue out at people.


Pain late 2009. Dx as change in altitude. Sore spot on tongue late 2010. Dx as irritation.
Leukoplakia Bx Feb 2011 - Lichen Planus.
Bx May 2011 - Hyperplasia. Same sample retested as SCC.
June 2011 Rt Hemigloss,ND,rff,33 Rads. Hosp for 15 days w/bi-lateral pneumonia.
T3N1M0 Stage IV.
#157762 - 11/19/12 02:56 AM Re: Oral tongue SCC - can you stick out your tongue? [Re: Shauneen]  
Joined: Jan 2012
Posts: 112
braziliangirl82 Offline
Senior Member (100+ posts)
braziliangirl82  Offline
Senior Member (100+ posts)

Joined: Jan 2012
Posts: 112
br


December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
#157765 - 11/19/12 03:08 AM Re: Oral tongue SCC - can you stick out your tongue? [Re: Shauneen]  
Joined: Sep 2012
Posts: 379
tina77 Offline
"OCF Canuck"
tina77  Offline
"OCF Canuck"
Platinum Member (300+ posts)

Joined: Sep 2012
Posts: 379
Edmonton, Alberta, Canada
Shauneen, you and I are twins! I keep saying I sound like Elmer Fudd with a lisp!

My swelling hasn't gone away so I'm hoping that will change...

Until then beware all wascally wabbits!


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
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