| Joined: Mar 2006 Posts: 90 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2006 Posts: 90 | Any of you that have had reconstruction of the tongue and now have a flap I could use some advice for my father. He had the left half side of his tongue removed and to appropriately do reconstruction they took a piece of his thigh and reconstructed the tongue but had to attached it to the right side for blood flow because of his previous neck dissection. He is one month out of surgery and we do not have a followup appointment with the surgeon until the 21st. He is asking me if his new flap will move and how it is attached. I remember I think the surgeon saying it would not move. Do any of you know how if it is attached to the floor of his mouth. If so his next question for me was what about my saliva gland on that side. Which of course because he has been previously radiated 7+ years ago he does not have much saliva but every bit helps. I realize we ultimately need to talk to the surgeon but any insights from those of you with flaps would be greatly appreciated. He has always been extremely diligent in his mouth/teeth care his whole life so he is wondering how it all will work now. He is not allowed anything by mouth as of yet. Too much swelling from surgery and Intraoperative radiation. Thanks, Kim
Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT. 25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I don't have a tongue flap, but just responding since I have a pec flap in the cervical neck. Hopefully someone else can help.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | 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 | Ive seen members with tongue flaps anchored to the floor of their mouths and others with it added to the side of their tongue. Its pretty much different for each individual patient as the tumor (and margins) could be located anywhere on the tongue. Im sure previous medical history also plays a role in this as well.
Best wishes to your father. 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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Okay I do have a flap - mine is not adhered to the floor of my mouth - so it looks a lot like my normal tongue. They rebuilt my tongue and put in a floor on the operative side. However I do know some surgeons adhere it. I know some patients go back to have it separated or redone,  hope this helps.
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
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Kris has a flap. As he had a total Glossectomy and now has absolutely no tongue, the surgeons fashioned an abdominal flap into a tongue and placed that in his mouth. It is adherrant and does not move an iota. But, it looks like a tongue. Just doesn't function like one. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Mine (forearm flap) does move. It is anchored only at the back, and I have trained it to work with the "old" tongue. The flap is heavier than the tongue, so it has a tendency to "lean" to the left. I still work on tongue physio to try and correct that (I can feel a pull in the left jaw when I do it).
I have also seen people write of having the anchor released partially if there problems with mobility.
Saliva is definitely down. Immediately after surgery I drooled like Cujo, then the dry mouth hit, and has stuck around, although now (a year later) it is better than it was.
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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