| | Joined: Jun 2010 Posts: 27 "OCF Down Under" Contributing Member (25+ posts) | OP  "OCF Down Under" Contributing Member (25+ posts)
Joined: Jun 2010 Posts: 27 | My name is Tony and am new to this, so a big HI!!! I am 45 years old non smoker light drinker Fitness trainer for 25 years. Have had four operations and pet scans ct etc resulting in 9 weeks ago I had a 5.5cm mass removed from the base of my tongue with a forarm graft implanted to remodel my tongue. Cant eat but I can talk. I am scared as, that this cancer will return and cant get much of a prognosis. The most acurate info I got from my surgeon that I am greatfull off was. If you live 2 years you can perhaps look at being a long term survivor, if there is anything important you want to do now is the time as you have definatally got 2 years of good health. Any one else struggling in a similar way. or everyone may be my guess. Havent gone into how bad the opps where as I guess you all know. I have lost my parter for 5 years as she could not handle any more stress in her life and will try and go back to work in a week and I dont know how that will go. Not feeling on top of the world!!!
Tony
lyph node positive 10/08
Parotodectomy 4/09
Rad six wks 65 grey
Pet scan clear 03/10 no primary
Pet 01/10 base tonge primary
CT 3.5 Tumor 01/2010
radical tongue reconstruction
with forearm flap 2/10
severe Trismus 06/10
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | Welcome to OCF Tony!
You've come to the right place. There are a lot of folks here that have been through a lot and are such an inspiration to us all. They're beating it, so don't let anyone talk ya down!
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Tony,
Two years is just a bench mark. It's an arbitrary date set out in the future that says if you have made it this far you stand a better chance of no reoccurance.
Its a fairly meaningless date as we all plan on making it two years at the very least.
Simply put, every day you put behind you lowers your chance of a reoccurance, and the more of thaos days you can string together, the better your chances on no reocurane.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | 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 | We all hate to say welcome but we are glad you found OCF and have posted on Introduce yourself..
Got your email in response to mine and I will post here tomorrow morning as it is now evening here. Your already have couple of great responses and no doubt will have more when I look in the morning.
Gabriele
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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Hi Tony!
Welcome to OCF! Everyday is a blessing in my book, praying you have many years ahead of you! Sorry to hear about your partner.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | 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 | Tony, Asked to be tested for HPV. There is a 70% chance you will test positive and with that comes a less chance of recurrence.
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: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Tony,
Were any of the lymph nodes removed from your neck cancerous?
Are you going to have radiation (and/or Chemo)?
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Tony, I was given up as a dead man at least 3 times and here it is 3 years later and I am still among the living and doing more than most, even the younger healthier ones. No Dr that I have heard of can give you a day or date that you have to survive. If I payed attention to the Drs words, I would be at most an unhappy character. Keep an upbeat great attitude and live as if nothing was wrong with you and that whatever was is getting beaten by you and your body. Welcome to our home and read some of the posts of the survivors. Go for the gold man and live that way too. I also ignored a lot of surgeries I was told I needed. I have trouble eating anything but I force it. Ggod luck.
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: 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 | Hi Tony,
Sorry to hear you are going through so much but some of your issues should be resolved in time. If you can answer some of the questions it will help others here to help you. (see davidcpa�s and don's question's). Your major surgery was not that long ago but can you please advise what the 4 operations were? How are you getting your nourishment at the moment? I could not eat anything that was not liquidised but then later could eat roughly pureed and after that could introduce other soft food. Now I am happy to say I can eat almost anything. As you can see by my signature it is nearly 4 years since my operation and I do not understand the statistics that the surgeon is giving you. In the early days I used to beat myself up about them too but with all I have learnt here I know that my use by date is not dictated by statistics! Are you seeing a team of people, how often are your visits and are they and was the surgery at a CCC (Comprehensive Cancer Centre). Sorry to ask so many questions it all helps to reply to your concerns. Jim's advice is always worth reading.
Gabriele
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: Jun 2010 Posts: 11 Member | | Member
Joined: Jun 2010 Posts: 11 | Hi Tony,
You're from Perth? So am i. May I ask who's your dr/specialist? | | |
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