Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#121116 08-30-2010 02:21 PM
Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Hi everyone
I'm now 10 months after surgery and have developed a small,hard, quite painful lump on my flap, near the tip. The join between the flap and old tongue (nearby) is also sore. I don't think it is worth seeing my GP so have rung the hospital to see if I can be seen before my next 3 monthly check up. The nurse was quite helpful so I'm looking forward to an appointment in the next week or two.

Meanwhile I'm very puzzled. The flap has no nerves in it. How can it be painful? I'm also slightly worried. I read somewhere that on rare occasions people have developed SCC in their flaps!

It's very difficult to find information on flaps on the internet. I found one abstract which mentioned the growth of nerves in an insensate flap ... Hmmm


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #121122 08-30-2010 03:55 PM
Joined: Apr 2010
Posts: 201
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Apr 2010
Posts: 201
Hey Alpaca. My sister developed a lump on her real tongue right next to the flap. They took her right in and did a biopsy which came back as inflammation. I think if u would call your surgeon they will take you in and do the same. I also read about granulomas developing too if u want to look that up. I would call and get a biopsy done ASAP. The quicker you get in the faster you are to knowing what it is and can solve the worrying you are dealing with right now. Please keep us posted.


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
Susan3175 #121131 08-30-2010 07:13 PM
Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Thank you Susan - that is very good advice. In fact at my last check up a month or so ago I heard the surgeon mutter something to his surgeons about "granuloma" or "granulation". Because he wasn't MY surgeon who had been called into an urgent operation, I didn't follow this up, I was sort of put off guard by seeing a different doctor. If I did hear right, it could have grown bigger and painful since then. I'm still waiting to hear when I will get an appointment - I'm sure it will be sometime soon.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #121132 08-30-2010 07:16 PM
Joined: Sep 2008
Posts: 12
Member
Offline
Member

Joined: Sep 2008
Posts: 12
Hi- I am out 6 years after a successful SCC T1N0MO free flap. I developed a granuloma on the joint of the flap to the bottom. It was diagnosed, lasered oblated 6 weeks ago and soon reappeared ON the flap... Will probably have it lasered again. It is raw looking but does not really hurt. No words of advice to you other than these sometimes come from residual sutures, but good luck.

ebayman #121135 08-30-2010 08:40 PM
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
Hi M,
At the clinic early on with my flap/tongue problems they tried silver nitrate sticks for granulation with only minor results in my case. (search nitrate..it may work for you).
Some of my past problem was caused by rubbing on a bottom tooth.
Here are a few links with recent postings that may be of interest.
I had my 6 month check at the clinic last Friday and one with my oral surgeon the previous Monday.
Next visit with OS is in November I will discuss lasering as it is still an option he mentioned and I am keen to try it.
http://oralcancersupport.org/forums...;Main=10513&Number=118192#Post118192
http://oralcancersupport.org/forums...;Main=10572&Number=118981#Post118981
http://oralcancersupport.org/forums...;Main=10575&Number=118861#Post118861


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

Gabe #121137 08-30-2010 09:35 PM
Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Thanks - funnily enough I didn't come up with anything when I searched for "flap". Does anyone know about feeling, nerves, sensation in flaps?


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #121141 08-31-2010 02:41 AM
Joined: Sep 2008
Posts: 12
Member
Offline
Member

Joined: Sep 2008
Posts: 12
My free flap has no pain sensation and as a result I had burned it on pizza. That looks like a skin burn.

ebayman #121414 09-06-2010 10:39 PM
Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Hi everyone
Had an appointment with the local ENT guy today. He took a biospy. The inflammation had died right down in the last week or so leaving the lump smaller and more manageable - he actually took it right off. He doesn't think it is malignant - nor do I. I'm quite glad to be rid of it though because the tongue looks pretty awful anyway without another irregularity developing! (I have been relieving teaching in a rough school and the younger kids have given me a hard time about my lisp and scars. So here's hoping that it was just a granuloma or some such and I can continue the progress I have made with my speech.:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #121465 09-07-2010 09:02 PM
Joined: Apr 2010
Posts: 201
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Apr 2010
Posts: 201
Woohoo. Great news. Very glad you had it checked out.
Ugh kids could be very mean. I know I could have been when I was younger also and regret it immensely. Maybe just telling them before class. Hello my name is....... And I am an oral cancer survivor!!!! How about that for some inpowerment. I know that if my teacher told me that when I was younger I would talk to my friends about it. Which would spread the word.
I know it's hard but don't be embarrassed by what you have gone through be proud!!!!


CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads
1/10/2011 Clear PET!!!
Susan3175 #121481 09-08-2010 07:51 AM
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
What a great suggestion, Susan. Kids can be unthinking and uninformed. When I was teaching Spanish and French at college level, one of the native speaker teachers happened to be from Spain, where everyone speaks Castillian Spanish which includes a lisp for many of the words. So - when teacher evaluations came around, several of her students complained that her "speech defect" made it difficult to understand her! And we all had to chuckle about that one. The students were then informed about Castillian Spanish and that it was the intention of the language department that all students be exposed to various types of Spanish accents. So - Alpaca may have a temporary "Castillian accent" and the students should just "get over it"! Throughout life they will be meeting a lot of people who may not talk exactly the way they do. No one undersood me either when I first came South from "Up North"! It took the Manager and three clerks at Grocery store a good 20 minutes before they could understand that I wanted to know where the rice was. (you know,those tiny little white things that are hard and they swell up when you boil them in water and no, it's not grits!).


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Anne-Marie #121528 09-08-2010 09:01 PM
Joined: May 2010
Posts: 224
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: May 2010
Posts: 224
My flap is still painful and no one can tell me why. When I put my tongue to the roof of my mouth or to the floor or side of my mouth for that matter, the suture line is painful. Although I can't feel when food or water go on it, it's still painful.
I am 4 months out of surgery and the docs said it could be some deep sutures still trying to work their way out, but it could be that way the rest of my life.
Same with my "free-flap" transplant site and the blood vessel incision. Docs say it shouldn't hurt, but it does.
As for the speech, i have the lisp and I can't say my L's or R's very well but otherwise I am ok. Docs say it should get better when my lymphedema is taken care of, but eh, you work with what you have to to get through.


25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
bethers0808 #121848 09-16-2010 11:19 PM
Joined: Nov 2009
Posts: 644
Likes: 1
Alpaca Offline OP
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
OP Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
Likes: 1
Hey, it's good to hear about flap and speech issues. I love the idea of the Spanish lisp. Funnily enough I've been thinking of learning Spanish just for fun:) And I have just heard from my GP. My biopsy showed no cancer but I have thrush. That might be why I had a flare up of pain a few weeks ago.

I'm determined to achieve optimal speech and have bought a little Sony voice recorder. It's so easy to read something into it and listen and try to improve.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Alpaca #121855 09-17-2010 04:39 AM
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
I had thrush twice in my 1st 2 years of recovery and it wasn't fun. The first time my tongue literally split down the middle but fortunately it came back together.


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.
davidcpa #121860 09-17-2010 06:34 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Great news about your biopsy!!!! Best of luck with your speech improvements.


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
davidcpa #121861 09-17-2010 06:34 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Ooops, posted twice.

Last edited by ChristineB; 09-17-2010 06:35 AM. Reason: duplicate post

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
ChristineB #121871 09-17-2010 03:44 PM
Joined: Aug 2007
Posts: 1,301
"OCF Down Under"
Patient Advocate (1000+ posts)
Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Joined: Aug 2007
Posts: 1,301
Fantastic news that the biopsy is clear of cancer. It is very worrying until you get the result.
I presume you have medication for the thrush?
Good luck with the DIY speech therapy wink
What a great idea! You could even take it on your walks and describe the scenery that you are photographing.
Gabriele


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

Gabe #121942 09-19-2010 12:25 PM
Joined: Feb 2010
Posts: 38
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Feb 2010
Posts: 38
Hey Alpaca,
I'm happy to hear that your lump doesn't seem to be problematic any more. I also am a teacher and I am also currently teaching myself how to speak more clearly and effectively. My speech therapist sent me a gazzilion tongue twisters and told me to call her if I needed anything else, so I have been talking to a school speech therapist in my building. She mentioned putting a long wet frozen q-tip on the middle of the tongue to create a hollow there. She said that would improve the s sound and it does, to some degree. It takes a few weeks of once a day for about 10 minutes to see results. Good luck. Let me know if that helps.

I also love the Spanish lisp idea. I teach in an international school and will have to use that one. I also will use my tape recorder. So far, only one student has asked me what is wrong with my speech. It's a new teaching job for me, so they never heard me before the surgery. And only one student has noticed and commented on my neck scar. Funny how you think these things are more noticeable than others do.


Teacher aged 48, SCC Left side and floor of Tongue, Dx December, 2009. Stage II T2 N0 M0 Successful partial glossectomy surgery with thigh flap and neck dissection 3/8/10. 6 weeks of radiation tx ended 6/30/10. Happily surviving!

"Get outside every day. Miracles are waiting everywhere."
ebayman #126549 12-20-2010 02:01 PM
Joined: Sep 2008
Posts: 12
Member
Offline
Member

Joined: Sep 2008
Posts: 12
Since my granuloma laser oblation and subsequent 3 granuloma regrowth we figured out it is Crohn's Disease related which can manifest anywhere in the digestive system. The normal part of my tongue always has little white sores. Anyway the lump was treated twice with cortisone injection and has shrunk significantly. just an FYI

7 year survivor SCC stage 1 N0M0 forearm flap reconstruction no chem or rad. "Get someone/ someplace to treat you who does this everyday" you can only have one succesful first surgery....

ebayman #126550 12-20-2010 02:01 PM
Joined: Sep 2008
Posts: 12
Member
Offline
Member

Joined: Sep 2008
Posts: 12
Since my granuloma laser oblation and subsequent 3 granuloma regrowth we figured out it is Crohn's Disease related which can manifest anywhere in the digestive system. The normal part of my tongue always has little white sores. Anyway the lump was treated twice with cortisone injection and has shrunk significantly. just an FYI

7 year survivor SCC stage 1 N0M0 forearm flap reconstruction no chem or rad. "Get someone/ someplace to treat you who does this everyday" you can only have one successful first surgery....

Page 1 of 2 1 2

Moderated by  Brian Hill 

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