| | Joined: Oct 2012 Posts: 7 Member | OP  Member
Joined: Oct 2012 Posts: 7 | Pet scan and CT results are in. They showed a 2-3 cm mass in right cheek with possible involvement of upper right jaw. ENT still says this is very treatable. I am so grateful there is no node involvement, however, this still sounds so scary to me. He said I will probably require extensive surgery or (surgeries) and chemo.
I know some of you have walked down this road. If anyone has anything words of wisdom and/or advice, it would be much appreciated. I am staying positive and am in fighting mode!! I want to beat this horrible disease AGAIN!!!
P.S. My ENT has referred me over and have started the process at MD Anderson Cancer Center and hope to get in there soon.
Thanks for listening.
Allyson
8/20/04 Dx'd w/ SCC - Stage II-III L BOT. 2 surgeries. No clear margins. 33 IMRT, chemo. Clear PET
10/26/12 Dx'd 2-3 cm SCC buccal lesion. Non-Smoker, Non-Drinker, Healthy lifestyle.
| | | | | 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 | Sorry for the results but you are in good hands at MDA. Keep us posted.
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: 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 | Allyson, so sorry to hear of your diagnosis! This will be a major surgery with a long recovery. Prepare yourself for the worst and hope for the best. Ive had a mandibulectomy with my lower left jaw and left cheek removed. I did have some complications with mine. It was a 10 hour surgery and my recovery was a year. Ive seen others sail right thru this with 10 days in the hospital and a quick recovery. For those lucky patients, you can barely detect they ever had anything wrong once they have healed.
At this point I suggest eating all your favorite foods and not to worry about gaining weight. This surgery will compromise your ability to eat so do it now. You probably will be eating ok once you recovery but it can take a while.
Glad to hear you will be going to a major cancer center. They will have the most experience with this.
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 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Allyson,
Ok...this just stinks! I'm so sorry.
I'm glad you are at MDA too, at least you know they know what they are doing!!
We did not have any surgery so can't offer much help in that realm, but, you know we are here when you need us!
Please keep in touch with us as you can.
Blessings,
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | 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 | Everyone here is right it sucks, you are in good hands at MDA and the surgery will probably be extensive. I would push for rads and chemo post surgery. Just to be on the safe side. Assuming they can do more rads... hugs to you - you will get through this again.
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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