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Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,502
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Get your hearing checked and a full blood count with thyroid included. You will want to have a baseline of what is normal for you for the future. Glad to see you have decided to go with the port and feeding tube, smart decision.


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
Joined: Apr 2009
Posts: 329
Platinum Member (300+ posts)
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Posts: 329
Ben,

You have all the good people on the forum to lean on during the process. Take advantage, they will help you through this they are so very knowledgeable and a great group of people.

Glad you came back...God Bless... I hope all goes well, runs smoothly. Keep us posted.

Take care,
Connie



SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



Joined: Jan 2012
Posts: 26
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My tumor was along the left side edge/under my tongue, and they pulled my four lower left-side molars. And I've had fluoride trays since a few weeks before surgery, yeah.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
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That's great - did they rebuild your tongue at all? Good luck with everything as long as your not claustrophobic the mask making won't be too bad! Beware they lock you to the table... That surprised me the first time!!! Take care


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: Apr 2009
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Posts: 329
Ben,

You'll do fine hang it there. Mine was on the left side ridge too it was a T1 possibly a T2. If the Dr.'s didn't drag their feet it wouldn't have been a T anything!

I know it's scary at first you'll make it through this with flying colors.

Take care your in my thoughts and prayers.

Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



Joined: Jan 2012
Posts: 26
Contributing Member (25+ posts)
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Posts: 26
The mask fitting and the simulation weren't so bad, and it'll be better next time because the mask is already made, and they won't have to stick me any more. My veins are hard to find, and it took three tries to get the contrast dye into me. I'm getting a cath port installed on Thursday, same time as the feeding tube, so I won't be stuck from here on.

I didn't lose a lot of my tongue to surgery, so there hasn't been and I suspect won't be any reconstruction. I only lost a 1.8 cm thick sliver off the side (6 cm long and 3 cm high). Margins were clear on all sides to 0.4-0.5 cm. My tongue is a little short, I can't lick the outside of my teeth very well. My swallowing isn't effected and my speech is effected more by the lost teeth than by the lost portion of my tongue. I feel very lucky, when I hear how little tongue some of you guys are living with. Or I will, so long as it doesn't recur because such a conservative amount was taken. Only time will tell.


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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Yikes - seriously... My tumor was 2.4 cmx 1.4 cm - they took a third of my tongue and reconstructed it... are you sure it's cm. not mm? Regardless... Good luck!


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 2011
Posts: 126
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Posts: 126
From what my doctor explained to me, there are 2 different types of staging. You are first staged after your biopsy based on the size of the tumor, then once again after surgery, based on whether any nodes were positive and if the cancer broke through the node walls. I was treated at MD Anderson. I know I was told before surgery I was stage 2, then after surgery they said stage 3.


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Posts: 5,260
This is true they ball park it based on scans then give you an accurate staging post op. I stayed the same - I was a T2, N0 - the a T2, N1 - both are stage 2 (size- and nodallt) more nodes - bigger tumor - higher staging. Ugh! Take care!


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: Jan 2012
Posts: 26
Contributing Member (25+ posts)
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Joined: Jan 2012
Posts: 26
Cheryl, it may be the placement of the tumors. Mine was on the left edge, and growing outward. Might yours have been placed more centrally? Or deeper, growing inward?


-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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