| | Joined: Aug 2013 Posts: 21 Member | OP  Member
Joined: Aug 2013 Posts: 21 | Hi, just thought I'd update - I'm back home from a week at Univ of Mich hospital where I had the surgery to remove about half my tongue and rebuild with 'harvest' from my left latissimus dorsi.
First, to anyone who got through this with their spirit intact, I salute you. Not going to get into details, but I've never suffered physically anywhere near this. Second, my prognosis is somewhat better than going in (which was: feeding tube for the rest of my life, might not be able to speak, needed to check lymph nodes for metastasis), the tumor was smaller than they could tell from the CT scan so they took a little less of the tongue and there was no evidence of cancer in the lymph nodes. Now they're saying I will definitely speak, and are holding off judgement on swallowing.
The most important lesson I learned is that when lying in the hospital and hearing about all the stuff your kids are doing without you, you realize it's not the steak sandwiches you'll never eat again that are important, it's being alive and with your family (whatever constitutes your family) in just everyday moments that you have to be there for. I'm home now and relishing every moment.
Joe
SCC BOT T3N0 Aged 36 (1999)
Unknown HPV status (before they knew)
SWOG Protocol - 2 rounds chemo, 6 weeks radiation
Recurrence Age 50 (2013) - same site
SCCa BOT T2N0M0
HPV negative
60% Glossectomy/Free Flap from Latissimus Dorsi Recon,
Neck Dissection + 6wks Rad Tx
Non-tobacco user
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | J, I had the same, and am walking, talking and eating. It took a bunch of work, but it was well worth it!
Push yourself as much as you can. My team was surprised at my results, but I wasn't and I'm still not done.
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 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 | More power to both of you..  keep plugging away...
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: 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 | Congrats on the successful surgery! Im sure its a huge relief hearing the tumor was much smaller so everything has a better outlook now.
I bet you are so happy to be home with your family. You sure hit the nail on the head with whats most important in life and its not food. We had a very special member who recently passed away who was dependent on a feeding tube. He really knew how to live and made the most of life without taking even one bite of food or a sip of water.
Best wishes with your continued recovery.
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 2013 Posts: 21 Member | | OP Member
Joined: Aug 2013 Posts: 21 | [quote=tina77]J, I had the same, and am walking, talking and eating. It took a bunch of work, but it was well worth it!
Push yourself as much as you can. My team was surprised at my results, but I wasn't and I'm still not done. [/quote]
I'll keep your story in mind Tina, your clinical details sound very similar to mine, and it's inspiring to hear that hard work can pay off in this.
Joe
SCC BOT T3N0 Aged 36 (1999)
Unknown HPV status (before they knew)
SWOG Protocol - 2 rounds chemo, 6 weeks radiation
Recurrence Age 50 (2013) - same site
SCCa BOT T2N0M0
HPV negative
60% Glossectomy/Free Flap from Latissimus Dorsi Recon,
Neck Dissection + 6wks Rad Tx
Non-tobacco user
| | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 | You don't have to be in the norm. You can defy the odds! Take the victory and persevere to the next step expecting bigger and better. Your will is a powerful motivational tool.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
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