| | Joined: Jul 2010 Posts: 4 Member | OP  Member
Joined: Jul 2010 Posts: 4 | hi everybody,
6/21 summer solstice, diagnosed with SCAA of left base of tongue metastatic to left neck lymph node. former smoker, non-drinker, runner, singer, dog lover, hardly sick a day in my life, feeling betrayed by my own body.
seeking possible robotic surgery at sloan-kettering, exploratory surgery on saturday 7/17 will determine whether or not i'm a candidate, if so, may mean reduced radiation and possibly no chemo. found out on friday my PET scan was clear.
am hopeful, have run 6 marathons so far, and am aiming to run my seventh soon-
thanks for listening-
jane
DX 6/21/10, SCC BOT, left node involvement.
7/3/10, PET scan clear.
possible robotic surgery, possible alternative therapy.
| | | | | 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 | Have they tested you for HPV?
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: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Hello Jane. Welcome to OCF. Thoughts and prayers are with you. Am sure you will find lots of support and help here. Hugs.
Dodie
Last edited by penners; 07-11-2010 02:39 PM.
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Jul 2010 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2010 Posts: 27 | Hi, Jane. Best of luck with your options and future running. I just got to this Web site myself.
I, too, am a former smoker and current non-drinker who runs marathons. I got my official diagnosis on May 26, and ran my 22nd marathon on May 30. Look at davidcpa's signature line. He was back to riding his bike 100 miles a week within 10 months of finishing treatment. (Tx, they abbreviate it here.)
My primary site was found in my right tonsil during surgery 6/29. One right lymph node enlarged; CT scan shows potential changes in neighboring nodes, though they are not enlarged. I start seven weeks of chemo and radiation 7/21.
I plan to run my 23rd marathon (and beyond) as fund-raisers for cancer, quite possibly oral cancer education. I have to believe that our physical condition, mental toughness and discipline will help us through the tough time ahead.
Randy, Stage 3 tonsil SCC, node involvement, HPV-positive. 7 sessions of Taxol-Carboplatin, 35 rads finished 9/8/10. Post-TX PET and CT 12/1 showed "no metabolic evidence of residual or recurrent disease." Yay!
| | | | | Joined: Jul 2010 Posts: 4 Member | | OP Member
Joined: Jul 2010 Posts: 4 | thanks for the replies, my sister had found this forum for me, and i've been having a hard time getting myself to access it, kind of sticking my head in the sand i guess, a lot of the info is hard to read. but thanks for the support. david- as far as I know, i have not been tested for HPV, although sloan-kettering did draw blood on friday, maybe they are doing it? will find out. randy thanks for the positive feedback re: running. i also like to feel that running has given us the physical stamina and tenacity to tackle this challenge as well. i wish you luck with your treatment-
DX 6/21/10, SCC BOT, left node involvement.
7/3/10, PET scan clear.
possible robotic surgery, possible alternative therapy.
| | | | | 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 | Jane, welcome to OCF. With a clear PET scan does that mean you are an almost stage 1? I had a friend who's tumor didnt show cuz it was caught so early. Hope thats the case with you. You will get lots of good info here to help get you thru this. Sounds like you are a younger person who is in good health. That will help get you thru this easier.
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: 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 | Jane, The HPV test is done from your confirmed cancer slides. I wish it were that easy top take a blood draw but not the case today, maybe in the future a better testing method will be found for orally located HPV.
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.
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