| | Joined: Jan 2009 Posts: 33 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jan 2009 Posts: 33 | I just want to say thanks to everyone for your responses. It's really comforting to know I'm not alone. Also, I can't believe how many other young oral cancer survivors there are out there! My surgeon at the Mayo Clinic had only seen a handful of young oral cancer patients before me. I was so young he actually had a lady come in to take pictures of my tongue for them to use in training papers/textbooks. I kept asking myself "why me?" I had no risk factors. I was so young. I had always tried to be so healthy. The more I look on this forum and the more I educate myself, the more young, low risk patients I find. I really hope that I can somehow help to make a difference in future research and oral cancer diagnosis. This really is an amazing group. I greatly appreciate this forum for existing. Thanks!
9.29.08: Dx @ 24 w/ T2 SCC, tongue
10.14.08: Partial gloss. & r. neck dissection. Margins/nodes all clear. No HPV. No rad.
10.06.09: Recurrence in l. lymphnode
11.16.09: L. neck dissection + lost nerve XII
12.28.09: 33xIMRT w/ concurrent 3xCisplatin (no PEG)
02.15.10: Done with treatment!
| | | | | 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 | Good luck and I hope you will stay with us and share your experiences with this site.
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Sometimes I wonder if it is dentistry related somehow. Some of my Drs. seemed to think this could be the link. I wonder if they've done any research on a correlation there.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Jen - if you get the chance to read misskate's blog here at OCF I would encourage you to. It is such an inspiration and really helped me to look forward at what I an do instead of focusing so much on what I am told I can not do, especially with foods.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | oh thanks patty! you are a sweetie. Hope you are doing well 
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Jan 2009 Posts: 10 Member | | Member
Joined: Jan 2009 Posts: 10 | I cant believe your story, the first I knew about oral cancer was my mum being diagnosed with base tongue cancer (she gave up smoking 25 yrs ago) she has had all the surgery and now will have radiotherapy and we have to have hope! What I understand about you is there is no rime or reason - why? No alcohol, no smoking, just bad luck, Im 37 and that would make me mad - Im mad about my mun, but I realise that there are so many survivors out there, and that makes you one of the bravest people alive!
Mum: rare muco epidermoid carcinoma of left tongue base. Partial glossectomy with radial free flap reconstruction, left modified neck dissection, tracheostomy. Due to undergo radiotherapy.
| | | | | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | Hello, Welcome to the site. I guess I'm comparatively old at 41, but I was diagnosed when I was 38. Unfortunately I'm on my second recurrence, with it now having spread into both my lungs. I too never smoked a cigarette or chewed, etc. I was also recently tested for HPV and turned up negative. You'll be surprised how many people you run into on this site who had no risk factors like us, and yet got the disease anyhow. I've been amazed by it. It sounds like you're clear and I hope you stay that way. Welcome to a new group of friends who can give you a lot of support and encouragement in your journey. -Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | | 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 | Steve,
Haven't you been keeping up? We now can close the book on all those unsolved cases....think Listerine.
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: Jan 2009 Posts: 33 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2009 Posts: 33 | I realize you're being sarcastic, yet I'd just like to say that the mouthwash can't be what caused my cancer. I always hated the idea/taste of the stuff growing up, so I never used it. In recent years I started using a whitening mouthwash, but it's alcohol-free. Researchers are going to have to come up with a different theory for me. :\
9.29.08: Dx @ 24 w/ T2 SCC, tongue
10.14.08: Partial gloss. & r. neck dissection. Margins/nodes all clear. No HPV. No rad.
10.06.09: Recurrence in l. lymphnode
11.16.09: L. neck dissection + lost nerve XII
12.28.09: 33xIMRT w/ concurrent 3xCisplatin (no PEG)
02.15.10: Done with treatment!
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | david ...sarcastic...heaven forbid!
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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