| | Joined: Aug 2015 Posts: 22 Member | OP  Member
Joined: Aug 2015 Posts: 22 | I begin clinical trial tomorrow and surgery for hemi glossectomy with reconstruction, neck dissection on the 29th. It has been a very long wait, since June 23rd. But it's finally here Thank God! My doctor says that I have a wide tongue and if they can get a wide enough clear margin there is a 75% chance I may avoid reconstruction and have a fully functional tongue. Don't know if I believe that and don't want to get my hopes up to be disappointed. So I will remain hopeful and see how I wake up. Pain and weakness has progressed so will be glad to have the surgery.
6/23/15 DX SCC left lateral tongue and dysplasia floor of mouth
Surgery in October procedure: partial glossectomy, dissection L floor of mouth and neck
No RT or Chemo
Radial flap reconstruction
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | Good luck tomorrow. Waiting is the worst.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | 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 | Best wishes with everything tomorrow!!! Hopefully everything will go as planned. Please dont forget to check in and let us know how you are making out.
Good luck!!!
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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Good luck, please do keep us updated.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 |
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: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | Good luck and best wishes for a speedy recovery. Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 |
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Aug 2015 Posts: 22 Member | | OP Member
Joined: Aug 2015 Posts: 22 | I got turned down for the clinical trial because of something seen on EKG but remaining positive for the surgery. Thanks for the encouragement
6/23/15 DX SCC left lateral tongue and dysplasia floor of mouth
Surgery in October procedure: partial glossectomy, dissection L floor of mouth and neck
No RT or Chemo
Radial flap reconstruction
| | | | | Joined: Apr 2015 Posts: 91 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2015 Posts: 91 | Good luck with your surgery. I will say a prayer for you. I had same surgery (no flap reconstruction though). It honestly was no where near as bad as I was worrying about. Denise
Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
| | | | | Joined: Aug 2015 Posts: 22 Member | | OP Member
Joined: Aug 2015 Posts: 22 | Did you have a trach? If you didn't have reconstruction, did they do a good job of leaving you with a functional tongue? So many questions.
6/23/15 DX SCC left lateral tongue and dysplasia floor of mouth
Surgery in October procedure: partial glossectomy, dissection L floor of mouth and neck
No RT or Chemo
Radial flap reconstruction
| | | | | Joined: Apr 2015 Posts: 91 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2015 Posts: 91 | I did not require the reconstruction. They had to remove the front portion and a bit less than 1/3 of the right side of my tongue. I had about 30 nodes removed from the right side of my neck and had a drain in place after the surgery. Tongue and neck were all puffed out and did hurt some. But it really didn't hurt for too long maybe a day or two then just mild after that. I did not have a trach. I felt pretty crappy when I got to the hospital room after the surgery but by the next morning was feeling loads better. I was allowed to go home the day after surgery. Armed with my pain and nausea meds of course. I got through it ok!! You will too!!! It was no where near as bad as I had envisioned. Denise
Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
| | | | | Joined: Apr 2015 Posts: 91 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2015 Posts: 91 | Oh about the function of the tongue that was left.... Well I think the front portion removal has had more effect than the side portion removal. I also had a tumor removed from the floor of my mouth on that side so they sewed the side of the tongue to the open area on the floor of mouth to close the area up. Main difference in function for me is I don't chew food on the right side of my mouth as my tongue can't really move the food around on that side. But I think that is due to the length being lessened and not due to the width being lessened. I hope that helps answer your question. I am trying different foods to chew on right side lately though. Denise
Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
| | | | | Joined: May 2015 Posts: 18 Member | | Member
Joined: May 2015 Posts: 18 | Corlis, the wait is the worst. My husband had left lateral hemiglossectomy 6/1. He has finished chemo and rads, only lost 5 pounds, no feeding tube or trach. The worst part was the 10 days post op where there was a big dressing on his tongue. He had no reconstruction and his tongue is functional.
Kate, wife of husband with
May 2015, SSCA left lateral tongue, T2N2bM0 Stage 4 , Age 58
06/01/15, L hemiglossectomy, modified L radical neck, clear margins, 2 nodes positive, no extracapsular extension. Perineural invasion on lingual nerve in tongue.
Tx completed 8/28/15, IMRT and 2 high dose cisplatin.
12/15 negative PT scan
5/16 negative PT scan
2/16 fitted with partial denture
12/16 3mm area of exposed mandible identified. Started on pentoxifylline regime
3/17 completed 40 HBO dives.
| | | | | Joined: Apr 2015 Posts: 91 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2015 Posts: 91 | Hope it went well and you have a smooth recovery! Denise
Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Corlis... you've had cancer now their doing a hemiglossectomy... I'm assuming due to more cancer...? I would most definitely be glad they didn't get you into the trial. if this is your second go around with this cancer. Ask for rads and chemo.
hugs.
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
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