#93077 04-02-2009 07:35 PM | Joined: Feb 2009 Posts: 11 Member | OP  Member
Joined: Feb 2009 Posts: 11 | I just has a successful operation to remove cancer from my lower left tongue - succesful because nothing found in my lymph nodes and clean margins. However, because of the depth of the tumor - .9 cm, the radiologist is recommending radiation. My encologist can go either way so I'm not exactly sure what to do. I will get a second opinion. While I want to be aggressive as I can, I'm also reading all of side affects of radiation and wondering if I shouldn't just keep a close watch for the next several years.
Any thoughts?
SCC T1N0M0 Floor of mouth (under tongue) - Surgery 2-13-09. Forearm free flap with partial glassectomy and left neck dissection. Clean margins and nodes! Contemplating radiation. Non-smoker/casual wine drinker
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | A second opinion is what I would suggest before making any decision, even a third opinion cant hurt. Radiation is pretty much a one shot deal. Not very many people go thru it twice and thats because of your body only being able to take so much of it during a lifetime. It gets more complicated than I am able to explain. Please do not let side effects determine your decision about radiation. Sure its not easy, but it can be done.
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: 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 | Partovis,
I had 5 different opinions and my decision grew easier with the knowledge and understanding I obtained going thru that process. Each of our situations can be different so keep that always in mind but ultimately you must place your trust in someone so the sooner you can get to that point, the better.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Joined: Feb 2009 Posts: 11 | You're right, the more opinions the better. With the internet and different opinions, I 'm getting closer to a decision. I'm leaning towards not doing it and then if it does come back, I won't hesitate.
SCC T1N0M0 Floor of mouth (under tongue) - Surgery 2-13-09. Forearm free flap with partial glassectomy and left neck dissection. Clean margins and nodes! Contemplating radiation. Non-smoker/casual wine drinker
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Also keep this in mind. From my brief exposure to this site and this cancer I have concluded that cancers of the tongue seem more prone to return than anywhere else in the OC.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Joined: Feb 2007 Posts: 790 | I agree with David. The side effects are well worth the peace of mind of knowing you followed the reccomended protocolfor this disease. Sorry you are going through this treatment!
It is important to erradicate this cancer form your system once and for all. Recurrances are a lot more difficult to deal with.
Hope you are healing up and getting back to your old self.
Radiation sure isn't fun but it is manageable.
Last edited by misskate; 04-03-2009 04:13 PM.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
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Joined: Feb 2007 Posts: 790 | I had the same surgery as you and 2 years out I'm very functional.My speech is not as good because I had almost all of my tongue removed. I just ran 3 miles on my lunch break I even do handstands in yoga class now - working on head stands...the scar on my forearm has really faded A LOT this past year- I was Ok with how it looked last summer but now its almost the same color as the rest of my arm skin (same with the scars on my chin and neck.)so this is exciting. I have come to like my scar there... - its a badge of honor for what I went through. Also it helps for me and everyone I meet who notices it to remember what an ordeal I went through and how much to appreciate my good health and recovery I was 33 when diagnosed. So I know how tough it is these first few months are. It sucks! Wishing you a speedy recovery. Thinking of you! K
Last edited by misskate; 04-03-2009 04:32 PM.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
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Joined: Apr 2005 Posts: 2,219 | Partovis,
Just curious as to where you are being treated. I had my surgery at Fox Chase.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Feb 2009 Posts: 11 Member | | OP Member
Joined: Feb 2009 Posts: 11 | Hi Jerry,
I went to Fox Chase first but then decided to go with Jefferson University because they presented the forearm free flap. I was worried about regaining my full speech so the free flap seemed like a good option. I also liked the fact that Jefferson had a plastic surgeon doing the reconstruction.
Glad to see you are a 4 year survivor. Reading all of the statistics are really scary for oral cancer. Curious if you changed something in your lifestyle...diet, exercise, etc?
SCC T1N0M0 Floor of mouth (under tongue) - Surgery 2-13-09. Forearm free flap with partial glassectomy and left neck dissection. Clean margins and nodes! Contemplating radiation. Non-smoker/casual wine drinker
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