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#148368 - 04/16/12 03:05 PM Scar tissue v tumor  
Joined: Aug 2011
Posts: 78
sallyanne Offline
Supporting Member (50+ posts)
sallyanne  Offline
Supporting Member (50+ posts)

Joined: Aug 2011
Posts: 78
New York, NY
Hi Everyone!

Tomorrow I will be 16 weeks out from my last radiation treatment. But, I am experiencing some pain in the back corner of the left side of my tongue where my last tooth meets my tongue.

I had the partial glossectomy back at the end of September. Then, after a hot PET during pre-radiation prep, and after much discussion, they decided to go in and do a surgical biopsy to make sure that this spot on the left back corner of my tongue near my last molar, was clear. It was. No cancer, no dysplasia- just inflammation caused from the first surgery.

Now, it feels as though my tongue is still too big for my mouth- and it rests up against that back tooth still on the left side. There is a hardened groove along the tongue, where the tongue & tooth meet. There is a fairly consistent dull pain, throbs once in a while, which seems lesser than what it did before my diagnosis... But, I am worried.

I have an appt with the SO tomorrow. My first scans are not scheduled until May 31 so that the inflammation has a chance to subside.

Has anyone had a similar experience? Can tge scar tissue cause discomfort as I am describing? I am nervous, but hopeful that it is just scar tissue.

Thanks,
Sally


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
#148369 - 04/16/12 05:31 PM Re: Scar tissue v tumor [Re: sallyanne]  
Joined: Jun 2007
Posts: 9,775
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,775
PA
Ive seen several others describe similar after effect situations. Some members have their dentures rub and make sore spots while for others its their teeth rubbing. All too often scar tissue can be very painful. Its normal to get the jitters when things like this pop up. If its there for 2 weeks then ease your mind and get yourself checked out. Do you have an ENT? Thats who I usually go to for my check ups or things like this.

Good luck!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#148370 - 04/16/12 05:46 PM Re: Scar tissue v tumor [Re: ChristineB]  
Joined: Apr 2009
Posts: 329
ConnieFL Offline
Platinum Member (300+ posts)
ConnieFL  Offline
Platinum Member (300+ posts)

Joined: Apr 2009
Posts: 329
Fort Myers, FL, Lockport, NY
Sallyanne,

I have the same problem as you. I also have a small lump in the middle of my tongue inside. I play with it with my teeth it's a habit I now have. I immediately went to my surgeon, after the CT Scan I was told it's scar tissue. Sometimes it get a little painful but not much and is noticeable to me. Yes, my tongue seems to big for my mouth too.

Hope this helps and that's the problem with you.

Keep us posted..Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



#148371 - 04/16/12 06:27 PM Re: Scar tissue v tumor [Re: ConnieFL]  
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 there... I had a very similar surgery to yours except they rebuilt my tongue on the operative side so sensation is minimal there... I have no pain, but on my real tongue, for a while post rads I had two areas that would flare up. On the right side. It was because I have two molars that are a bit inset and they rub up against my already irritated tongue. It's not continual but I find it's linked to foods I eat - anything with a hard texture - crackers, or acidic foods sets it off makes it sensitive and then my teeth make it worse. This isn't all the time. You're sp early out of rads that it will take a while to heal, even a year out - which I will be in two weeks, I have my days when things are better than others.

Keep an eye on it for changes in the area, but it's likely rads fall out. I add more rinses, and switch to bland foods for a few days and it goes away. As for feeling swollen, a neck dissection removes your lymph nodes, these guys carry lymph fluid from your head and neck... Less nodes, less drainage - more swelling - even your tongue. I find when I do my lymphatic massage my tongue thins out and I can feel it drain. Also sleep position makes a difference too. If its rubbing on your left try sleeping on your right or with your head to the right to lessen the contact while you're sleeping. - it might help. Hugs and good luck with your appointment. I'm actually waiting to see my SO now, for my checkup! Take care.


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
#148376 - 04/16/12 09:36 PM Re: Scar tissue v tumor [Re: Cheryld]  
Joined: Aug 2011
Posts: 78
sallyanne Offline
Supporting Member (50+ posts)
sallyanne  Offline
Supporting Member (50+ posts)

Joined: Aug 2011
Posts: 78
New York, NY
Thank you all for your insights. I will let you know how things go after tomorrow's appt. Cheryl- I hope your appt went well today!!

Thank you all!!


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
#148379 - 04/16/12 10:28 PM Re: Scar tissue v tumor [Re: sallyanne]  
Joined: Aug 2007
Posts: 1,301
Gabe Offline
"OCF Down Under"
Gabe  Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
Sydney NSW Australia


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

#148381 - 04/16/12 11:11 PM Re: Scar tissue v tumor [Re: Gabe]  
Joined: Dec 2010
Posts: 289
AnneO Offline
Gold Member (200+ posts)
AnneO  Offline
Gold Member (200+ posts)

Joined: Dec 2010
Posts: 289
Kansas
I too really think what you are feeling is because of radiation side effects, or a combination of radiation and surgery. I'm past a year now from treatment, and I have those kind of things happen, not all the time, but some days. I agree with Cheryl that the massage helps the swollen face, neck, tongue. A physical therapist who worked with me said I should touch my neck periodically especially when I feel it is swollen because what we feel and what is are often two different things. By touching my neck I can reassure my brain that my neck is essentially normal, well you know, new normal, but not swollen like I think it is. The PT said our minds perceive things being wrong because they don't match what our previous normal was, and the sense of touch restores an impression of normalcy. Interesting. It does not work all the time, but some of the time.

It's hard because we cannot ignore symptoms that might be a recurrence, but on the other hand often what we are experiencing are side effects of treatment. When in doubt have it checked out! (which you are doing)

Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of 10/2015
#148425 - 04/17/12 07:30 PM Re: Scar tissue v tumor [Re: AnneO]  
Joined: Aug 2011
Posts: 78
sallyanne Offline
Supporting Member (50+ posts)
sallyanne  Offline
Supporting Member (50+ posts)

Joined: Aug 2011
Posts: 78
New York, NY
Great news!! It is scar tissue!! The SO had a close look at things and he was certain that it is scar tissue. I had several surgeries prior to my cancer diagnosis- so there is a LOT of scar tissue, and now, combined with the effects of radiation- it's made that much worse.
He was so kind and told me not to hesitate going back to see him as and when I feel anything that I don't like. I assume it's going to take some time to understand these "new normals", and I was very appreciative of his attitude.
Needless to say I was so happy, I nearly danced out of the hospital!!!

Thank you again for sharing your stories, and your continued kindness and support!! If anyone is going to be at the April 28 NYC walk- let me know. I plan to be there!!

Thank you!! Sally


Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
#148426 - 04/17/12 07:36 PM Re: Scar tissue v tumor [Re: sallyanne]  
Joined: Apr 2012
Posts: 10
ilyse Offline
Member
ilyse  Offline
Member

Joined: Apr 2012
Posts: 10
california
Good news sally. Wish I was in NY. Take care. Ilyse


Ilyse
46 non smoker non drinker.
SCC stage 2 in 1999 and 2010.
Recurrence 2011. Stage 4. Modified neck, thyroid cancer found. 7 weeks IMRT/Chemo cisplatin. Aug - Sept 2011.
2012 shwanna tumor on right auditory nerve. Not Cancerous only 20% removed. Wll do Gamma
knife.

#148431 - 04/17/12 08:21 PM Re: Scar tissue v tumor [Re: ilyse]  
Joined: Jun 2007
Posts: 9,775
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,775
PA
Thats very good news, Sally! So glad its just scar tissue bothering you.

Wish I was attending the NY walk but I will be at the Philadelphia walk on the 29th. Maybe next year!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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