| | Joined: May 2010 Posts: 224 Gold Member (200+ posts) |  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
| | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | OP "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.
| | | | | 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 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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Great news about your biopsy!!!! Best of luck with your speech improvements.
ChristineSCC 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  | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Ooops, posted twice.
Last edited by ChristineB; 09-17-2010 06:35 AM. Reason: duplicate post
ChristineSCC 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 | | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "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  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
| | | | | Joined: Feb 2010 Posts: 38 Contributing Member (25+ posts) | | 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."
| | | | | Joined: Sep 2008 Posts: 12 Member | | 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.... | | | | | Joined: Sep 2008 Posts: 12 Member | | 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.... | | |
| Forums23 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
