#73876 04-30-2008 05:11 AM | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | I have a band of scar tissue that has developed in my mouth and I'm wondering if anyone else has encountered this. The scar tissue has built a bridge that connects the floor of my mouth, the healed hemi-glossectomy site on the side of my tongue and my left tonsil. It has become uncomfortable. My speech therapist was the first to notice it (I'm due to be seen by my surgeon later this week) and is having me massage the band of tissue to keep it from getting "tough" for 5 minutes a day. She casually mentioned that the surgeon may want to "release" it, but she wasn't sure if he would because radiation damage would cause the tissues to have difficulty healing.
So - I'm wondering what to expect next. I would imagine that if this scar tissue does indeed become tough and fibrous - right now it is fairly stretchy - I would have more problems with speech and eating than I already do. Anyone out there who has dealt with such a thing?! Advice? Opinions?
Thanks!
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Lisa,
I'm encountering the very same thing right now. The bridge of scar tissue has tethered one side of my tongue to the floor of my mouth. It has had a pronounced effect on my speech which really upset me because my speech was so good after the surgery. My doctor talked to me about releasing it, but he said with it being radiated tissue that it would probably just become scar tissue all over again. He said it's usually not successful. If your doc tells you anything different, please let me know and good luck with it!
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.
| | | | | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | Hi Minnie,
Good to hear that I'm not alone! Sounds like our scar tissue bridges are doing the same basic thing - mine is tethering the side of my tongue to the floor of my mouth as well as to the tonsil. My speech has been a bit more difficult lately, but where I'm really noticing trouble has been in eating. I've been getting a lot more "stuff" caught in the v that the scar bridge is making on the floor of the mouth and it can be very painful. The floor of the mouth itself is numb, but the scar tissue sure does seem to have plenty of nerves! I particularly notice a lot of discomfort if food is a little too warm - it can make it past my lips without hurting, but boy, when it hits the scar tissue it is agony!
I'll update if I hear anything from my doctor other than what you've been told by yours. I wonder why the body is so keen to generate new tissue in the form of scar tissue, but won't properly generate healthy tissue to promote post surgical healing after radiation?
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hey Lisa,
I've wondered to why scar tissue is so darn adamant to be part of us..........it's been my single biggest issue in the past five years. It causes my neck to be very stiff and difficult to do what I want to do, it makes the left side of my bottom lip droop. I've had some procedures to done in the past to try to help my lip but it simply made it worse by creating more scar tissue. No win situation in my case. BUT, I build up scar tissue easily, that was obvious from my first surgery. Your case may be much different so keep pursuing options to help it.
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.
| | | | | Joined: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | Hi Minnie,
I just got back from the doctor - my surgeon does think that he would have good results in revising the scar. He said that he would use a skin graft from my thigh and thinks that it wouldn't be a problem. I'm not eager to rush into anymore surgery just yet - but it is good to know that it is an option if the scar tissue gets any tougher and causes any more trouble with my speech/eating.
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I'm sure you'll make the right decision but lets hope it resolves itself and that's not needed.
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: Mar 2007 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2007 Posts: 55 | I have an update on my body's impressive ability to build grand new structures of scar tissue on the inside of my mouth....
While my surgeon said he didn't think there would be a problem with DOING the surgery- he thinks he'll be able to do the skin graft even with the irradiated tissue - I've since been told by the speech therapist that the surgery won't exactly be a cakewalk in terms of eating post surgery. She said that the last patient that he did a scar revision on wasn't able to eat anything other than liquids for about 4 weeks after the surgery - and I'm not in a place nutritionally where I can afford to go even one day without eating as I've been struggling to stay above the 18.5 number on the BMI index (18.5 indicates that you are underweight!). So - that was frustrating enough of a thought!
Well - last night while doing my weekly very thorough inspection of my oral cavity with a pen light - I noticed that I have a new scar band developing on the right side of my mouth! This one is tethering my tongue to my right tonsil. No wonder I've been feeling discomfort and stretching on that side of my mouth - I was attributing the sensations to overdoing my speech therapy exercises. UGH! How annoying! The thing that really worries me about these scar tissue growths is that the back of my throat opening is getting more and more narrow as the growths develop - and I already am dealing with dysphagia from a base of tongue weakness - and I am also concerned that my my tongue will become even more restricted with the new tethers in place.
I have an appointment with the radiation oncologist this week and plan to ask him more directly what the deal is with these scar tissue growths. Will the tissue ever stop trying to repair itself in such a grand fashion? Or will scar tissue be a regular, ongoing problem?
Lisa
36 years old at diagnosis
SCC of the tongue T2N2bM0 Stage IV
post hemi glossectomy and neck dissection (3/28/07), finished 6 weeks of radiation and Cisplatin x2 6/19/07. Biopsy taken from right side of tongue 7/17/08 - results showed infected abscess and no return of SCC!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Lisa,
What a pain in the butt. I feel for you. I hope someone is able to do something to help you.
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.
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