| | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) |  "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Hi Ankur, sorry for the delay, I was away over Christmas visiting family, and my parents internet access is limited.
Yes, I lost about 55% of my tongue. I have the tip, but lost most of the back (the incision is diagonal toward the back). The 5% of my speech "missing" is small stuff (I have a longer "s" sound than before), but most people wouldn't notice.
My tongue was reconstructed with a forearm flap. If you want to see the photos of post-surgery, you can "friend me" on facebook - send me a pm and I will give you the full name to search me.
All of my swallowing function is back, although I have to be careful to take smaller bites, and I drink lots of water when I eat, as there is limited saliva production. The benefit is that I lost weight and am now a size 6!
I immediately started eating after release from hospital. Pureed food lasted about 2-3 days and I started with soft foods (pasta, soup, etc.). I was released from hospital October 20, and was eating turkey that Christmas (albeit with a fair bit of gravy).
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
| | | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Dec 2013 Posts: 78 | Tina thank you so much for getting back to me. I usually come here every day bit didn't reply your message. i do apologize for the same. Did you have a breathing and feeding tube for couple of weeks?
Thanks
Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear | | | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Dec 2013 Posts: 78 |
Here comes complete end of diagnosis.
Finalized the treatment blueprint today with a highly experienced (and admirable) team after a month of nationwide opinion hunt at multiple CCCs.
Surgery on tongue
One side neck dissection
Reconstruction (Free Flap, not an option, its mandatory)
Will keep you posted after that.
Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear | | | | | 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 | Sounds like a good plan, and research. Good luck.
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: 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 | Sounds about right...  that's the standard treatment- 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
| | | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Dec 2013 Posts: 78 | Thanks all for your "well wishes" for my upcoming trip to a standard treatment journey.
Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear | | | | | 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 | We will be here as long as you need us so let's clear this crap from your body!
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: Dec 2013 Posts: 78 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Dec 2013 Posts: 78 | All I say, thank you all. Still working (of course from home) a week prior to treatment. I am fully functional. Enjoying all food I love before upcoming expected changes.
Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear | | |
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