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Joined: Sep 2006
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Steve,

Sorry to hear some symptoms are causing you concern. I hope and pray they aren't what you suspect. Keep us posted please.


Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
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hi all!! im an oral/tongue scc "survivor",2 yrs out in april..knock on wood!I was a moderate/heavy drinker and smoked 1 ppd.My first occurance was @the age of 31. 2nd occurance just 3 months after that. In total 4 partial glossectomies. 33yo I found the tumor in my neck.
I have been told by several doctors....I was 2 young 4 oral cancer...drinking and smoking didnt cause it.. AND of course several doctors say it was the cause..what do you all think? HPV,HERPES?Im hearing alot of different things!!!

THANKS

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rosebuddy,

I had no risks factors and the pathologists could still not determine the cause of my cancer in my tongue. You are probably never going to get a good answer to your question from any doctor.


T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
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rosebuddy,

You can be tested for HPV.


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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How does one get tested for HPV? Is it a blood test? Is it different from a PAP smear?


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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If you are a woman - you can ask for the HPV test with your pap smear. They automatically do the test now if you have ABnormal pap results - but do not if you have normal results (and you CAN have high rish HPV with normal paps!). So, you have to make sure to ask specifically to have the HPV test in addition to the pap. If you tell the doc that your ENT suspects that your tongue / tonsil etc cancer could be caused from HPV - they shouldn't give you a problem ordering the test.

Sorry - for men - I do not know.

I think they can also test your pathology slides somehow - but I don't know much about that part.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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Thanks, Amy.....I did ask for an HPV test to be done when I had my last PAP smear done. My dr. looked askance at me, but he said ok. His nurse reminded him that they had received a notice that for the separate HPV test, they need to do a separate smear. He still didn't know for sure that he was doing the right thing, but he did it, and I got a report saying that both tests were negative.

I didn't know if this was the right kind of test or if I needed some sort of blood test.

If this was adequate, then I guess that my negative results give me the information I needed to know that my OC wasn't caused by the HPV virus.

As a virtual non-drinker, who hasn't smoked for 37 years, and who has NO cancer whatever in my family history, I am at a loss for determining a cause for my cancer. My surgeon feels that the smoking, even that long ago, must be the cause. It seems like a stretch to me.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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