| Joined: Jul 2013 Posts: 16 Likes: 1 Member | OP Member Joined: Jul 2013 Posts: 16 Likes: 1 | Thanks for all of the advice and encouragement. I promise to get my signature up as soon as I get my official diagnosis on Monday. Also wanted to clarify that I'm a non-smoker/tobacco user of any kind and fairly active so trying to stay optimistic about recovery.
Dan
Stage 4 SCC on right underside of tongue
DX on 7/19/13 at age 29, no tobacco, light drinking
Partial Glossectomy/reconstruction/neck disection 8/20/13 Temp Trach, PEG tube
4/59 lymph nodes cancerous, 1 with extracapsular extension
Chemo - Cisplatin - 3 treatments started on 10/01/13 Radiation - 33 treatments started on 10/02/13
| | | | Joined: Jan 2012 Posts: 112 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2012 Posts: 112 | Hi Danbert, how are you doing? Just saw your message and i will be glad to help. Just like you i was diagnosed with tongye cancer in my 29s, also at the right side and no risk factors. Almost 2 years later here i am, with a pretty normal life. Exercising a lot, eating well and talking as crazy. Im not saying it was easy, i also tought i was not going to make it. If you want i can support you throught facebook or email
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
| | | | Joined: Sep 2011 Posts: 61 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2011 Posts: 61 | Hi Danbert. I was 31 at diagnosis. Two years after surgery I am still cancer free. I had surgery followed by radiation. Please feel free to ask any questions or look me up on Facebook. Best of luck to you!
Do not go gentle into that good night. Rage, rage against the dying of the light.
31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated") 33 rads ended 10/21/11. Dx Non small cell lung cancer 05/18/15 | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Welcom Danbert, I am at UH at the Mentor campus. I also looked at Cleveland Clinic as an option. Its a tough call, both are great options. Talk to both of them. Keep us posted.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Jul 2013 Posts: 16 Likes: 1 Member | OP Member Joined: Jul 2013 Posts: 16 Likes: 1 | First off, A very big thank you to everyone responding. Just knowing that others have come through this is a huge help for my sanity and in turn, my wife's sanity.
We just got back from my appointment at University Hospital and I was very impressed with everything and all the staff there.
The doctors said they saw a few nodes that looked suspicious to them so they are putting me at Stage 2 right now but say it may go up to Stage 3 once they get a better look at the nodes. We scheduled my surgery for 8/20/13 which will include a partial glossectomy with reconstruction from either wrist or back of arm, then from thigh to cover that. They will also be doing a right side neck dissection to check nodes, and will be doing a temporary tracheotomy and PEG to help take pressure away from my face as it heals. After surgery is when we will be discussing possible radiation.
Thanks again to everyone for your help. I'll be sure to keep updating as I get more info, or asking as I need more help. It still amazes me that a trauma in common can bring strangers together like this. You guys rock!!!
Dan
Stage 4 SCC on right underside of tongue
DX on 7/19/13 at age 29, no tobacco, light drinking
Partial Glossectomy/reconstruction/neck disection 8/20/13 Temp Trach, PEG tube
4/59 lymph nodes cancerous, 1 with extracapsular extension
Chemo - Cisplatin - 3 treatments started on 10/01/13 Radiation - 33 treatments started on 10/02/13
| | | | 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 | The trache they put in was the worst part for me. Bring something to write with. hugs and good luck. I would also push them for an earlier date if possible,
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Hi Danbert - My son was also Stage 2 with no history of tobacco use. He had SCC under the right side of his tongue and had 1/6 of his tongue removed. He has been cancer-free for 6+ years now. It's good if you can bring someone with you to appointments so they can help you remember what the doctors tell you and check back with each other later. You can also browse thru the main pages of OCF and write down your questions ahead of time. With all the great people we have here to support you and guide you, you will do just fine!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | 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 | Danbert,
Hang tough with that great positive attitude and rest assured we will be with you 24/7 throughout your treatment and your recovery.
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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