| | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I never knew tongue cancer existed until I got it...My Nanny told me about her and her newphews after I was diagnosed.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I was floating along on the same sort of ignorance, thinking that if smoking gave you cancer, it would be lung cancer until they finally started proclaiming the ills stemming from using smokeless tobacco.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | 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 | My hope is that the vaccine route stops the cancer before it has a chance to get started and then we won't need to pinpoint the causes. Maybe they can develop a vaccine against the tobacco link to OC? I know, wishful thinking
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | In keeping with the Christmas spirit of peace and understanding, I'm updating this thread with an excerpt from "Cancer made me a shallower person". It's a cartoon titled Family History and shows friends asking about the cause, and the realization by the cancer survivor of the motive behind the judgments and blame: "They all want assurance that they're safe". What tickled me most is the medallion she wears in one panel that would make a perfect OCF T shirt: " I GOT CANCER - ASK ME HOW"
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Love it and it would make a great T Shirt only I wouldn't be game enough to wear it 
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Time and money and the fact that OC is relatively rare in the scheme of things. If it wasn't for prostate cancer we'd probably all be dead. That's where most OC cures originate from.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I like the Tee Shirt that says, " I have Cancer, What's your Excuse"?
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2008 Posts: 9 Member | | Member
Joined: Dec 2008 Posts: 9 | Many compare themselves to others...
For it seems, we are all running a race, some longer than the other, but life is not fair, some run 100 meters and others a marathon. But it does not matter. I don't begrudge others- their success or health-except when they taunt after they've finished, but I'm struggling, not even at the halfway point.
Ryobi~
Last edited by Ryobi; 12-27-2008 07:31 PM.
| | | | | Joined: Jul 2008 Posts: 56 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2008 Posts: 56 | Well, I don't want people's sympathy. I would rather have their empathy.
I can't believe people get blamed for their illnesses. That's just inexcusable. I would like to see these people get the short end of the stick sometime and see how they like it. | | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | We're ALL going to get the short end of the stick eventually - life is a terminal illness. That's exactly why we have a forum - to show empathy for others who are facing this. But remember that before the HPV connection was discovered (and that within the time that I have been a member of the forum) the main cause of OC was use of tobacco products and/or heavy alcohol use. At one time they thought that 80% of OC was by those causes. 20% were unknown cause. People said a lot of dumb stuff to me as well. The ones I resented the most were people foisting their multilevel marketing "cures" on me like noni juice, etc. I got a lot of that BS.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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