| Joined: Mar 2010 Posts: 12 Member | OP Member Joined: Mar 2010 Posts: 12 | Hello everyone,
I have been looking around this site since I finished my 33 Radiation treatments with 3 major Chemo sessions, 6 weeks ago. It's been helpful to know I'm not alone and get some reassurance that the symptoms / side effects I'm having are common.
My story begins with a small blemish on the floor of my mouth, 7 years ago. My dentist found it. He referred me to a maxillofacial surgeon who cut the entire thing out with a quick swipe of a scalpel, then sent it for biopsy. (Only suspected to be Cancer), he told me to quit smoking and drinking beer. Or it would come back!, I didn't and it did.
5 years it lay dormant, then my dentist said "better get it looked at again". I ended up having the entire floor of my mouth removed at Sunnybrook Cancer hospital in Toronto, Canada.
The surgeons were brutal, knocking out teeth and slicing out all the lymph nodes from my neck. Cutting a big swatch from the underside of my left forearm, a piece of vein was removed for use in my mouth. The flesh acted as skin graph to re-upholstered the floor of my mouth. My shortened tongue was re-attached onto it. Then, twisting the skin together on my forearm, they managed to stitch that wound closed. (I have only minor numbness when I grip things with my left hand).
That was back in April 2009, over a year ago. The major swelling of my neck, and lower jaw took a few months to receed as I underwent physio-therapy to regain my neck muscles. I had quit smoking the day of my operation, but I continued to drink until August.
By early October, I had just been fitted with a new lower denture plate. Having trouble getting it to fit comfortably, by November I ended up with the oral surgeon trimming the 'flap' he graphed into my mouth. He decided to biopsy the extra bits. The cancer was back, it came right through the New floor of my mouth! In December, more surgery, removing more tissue, teeth and a part of my lower jaw. A piece of titanium replaced the missing jawbone.
Because the cancer reoccurred so quickly, I was fast tracked into the radiation / chemo program during March.
Now I am trying to get teeth again, sigh. (I sure could use a cigar and a bottle of scotch).
Fed up, but still hungry! From Canada, Art2Go
T4N0 squamous cell carcinoma of the anterior floor of mouth 2 surgeries, 33 radiation treatments w/3 chemo sesions | | | | 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 | Sorry you had to go thru so much but lets pray the chemo/rad did the trick.
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: 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 | Welcome to OCF. Sorry you have gone thru so much. I also have a jaw of steel Im sure your experiences can help many people. Hope you are still smokefree. 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: Mar 2010 Posts: 12 Member | OP Member Joined: Mar 2010 Posts: 12 | FYI - I am still sober and smoke free, I just miss it sometimes!
A2G
T4N0 squamous cell carcinoma of the anterior floor of mouth 2 surgeries, 33 radiation treatments w/3 chemo sesions | | | | 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 | Good job!!!! Glad to read you are still smokless. I am a former smoker too. I quit about a week after my initial diagnosis. Told my son, thats it I quit and threw the cigs right out the car window and never smoked again. I never was much of a drinker, so that wasnt a problem for me. Some people have a really hard time quitting. Hope you stay smoke free 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: 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 | Like you Art I had a few biopsies by a maxillofacial surgeon on the white patches on the floor of my mouth over about a 5 year period. These were negative but the biopsy in 2006 was not. Met up with an ex colleague (doctor) last week who knew about the cancer. He asked if I was still smoking. My first reaction was to laugh as I thought it was a silly question but I guess not. Like Christine I gave up a week before the surgery. I was a heavy smoker but the cancer put an end to that for good. Like a former addict I know not to risk having even one !! Best of luck recovering from all you have been through recently.
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I quit smoking 3 years ago, but still have that urge. It's that we reached for a smoke when the hands were idle and lit one. Man that is a habit, the reaching that is, that must last forever. Wecome to our home away from home and good luck Art.
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: Apr 2010 Posts: 24 Member | Member Joined: Apr 2010 Posts: 24 | I have to agree that quiting smoking was one of the hardest things I have ever done.. I guit 1/2/2010.. about 2 1/2 months before my diagnosis... While I am certainly not advocating it my wife and I are using the new electronic cigarettes.. It definetly helps with the needing something in your hands. I have shown it to all my doctors along with the liquid nicotine that goes in it, they have all given me their blessing to use it....
Tommy
Initial Staging T1N0M0 Invasive SCC of the R Lateral tongue Moderately Differentiated Evidence of Perinureal Invasion Depth > 3 cm Diag on: 03/25/2010 Partial Glossectomy and Modified Neck Disscection on 04/21/2010 Clear Margins/No Radiation or Chemo Age 40 Former Smoker Quit 1/03/2010
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | Sorry for all that u have been thru but welcome to the OCF!!!
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Hi Art and welcome fellow Canuck. Sounds like you have had a brutal time, but not unlike what many have been thru so they will certainly be able to relate to your jaw surgery. I am glad that they were proactive about that last biopsy and were able to fasttrack you through the system - early action is the cure.
Keep posting, many here can help you deal with side effects and other questions you might have.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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