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okay they removed most of my cervix back 9 years ago because it had HPV on it how do you get your throat tested for the virus


KIM P
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They (Johns Hopkins and probably a few other CCC's by now) can test the slides confirming your cancer. My CCC, Moffitt, sent my slides off to JH and the results were back within 2 weeks.


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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My oncologist explained me that only the biopsy can be tested for HPV. My biopsy was not tested at the time, so no test can be done now to determine an HPV connection.

He did mention that as more is learned about HPV and oral cancer, that it may lead to more customized treatment for those cases.


Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
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oh so there is no test to see if the virus is in your throat before you develope cancer


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Kim,

Not to my knowledge at the present time. They must preform the test for HPV from the slides that confirmed the presence of SCC.


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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Ron,

While what you said about the testing of the biopsy slides is correct, what your doctor lead you to believe is not. Most, probably all, "keepers of your biopsy slides" keep them for years. Moffitt told me they keep the slides for 7 years so there may be some law in effect. Anyway, I'm sure your slides are still available for testing if you want.


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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David,

That's interesting. It was my medical oncologist I spoke to. Maybe the ent surgeon who did the biopsy would provide a test option.

I do have mixed feelings about knowing at this point. On one hand, I'm curious. On the other, I don't want my mind to get into a "what if" kind of mode, or at least any more then it has.


Stage III BOT, 14 weeks chemotherapy, 7 weeks IMRT. Finished treatment Jan. 2007.
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My medical oncologist said that while they are a CCC, they are not set up for HPV testing of the biopsy. He looked into getting it done elsewhere but at least in the DC area, Blue Cross Blue Shield doesn't pay for such testing post biopsy. I had asked to get it done after reading the info here. Sort of moot at this point, since I had maximum treatment anyway although it would be reassuring in light of indications that HPV base of tongue cancer is more amenable to having a CPR (complete pathological response) go with the CCR (complete clinical response) that I got so far.


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
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Moffitt at first resisted saying things to me like "what difference does it make (meaning I was a non smoker and casual drinker) you have the cancer." Well it did make a difference to me finding out what and why I was being attacked. Back then HPV was as hard to find as a 3 legged snake. It was not even mentioned by my Moffitt team as a possible cause so I went thru the entire Tx wondering why I had a cancer caused by heavy tobacco use combined with heavy drinking. They even referred to my cancer as the "Old Foggies Cancer" describing it as attacking someone in their 70's who sat in bars all their life drinking and smoking. Their description, not mine.

So after I started to walk out of my Tx tunnel I for the first time went to the web and found another OC website and started asking questions. This site would take DAYS to get a response posted. UGH Then one day Brian e mailed me and said "Come to my site, it's better." I did and even though I was appx 3 weeks post Tx, found this site to be wonderful. It was also here that I was told of a poster's husband who was similar to me and tested positive for HPV. I was like...What is HPV and what does it have to do with his cancer. He was being Tx at Johns Hopkins and we traded e mails and the rest is history. Even before a recent study concluded that there may be advantages (stupid word here) of HPV+ vs HPV- SCC I felt relieved to know that my decision to quit smoking 40 years ago was not wasted. After discovering the facts about HPV I wanted to get on my soapbox and tell as many people as I could so that they would not have to go thru what I did to find out what was trying to kill them.


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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Well all I can say is that the Tribune article made me feel like a slut... Given the prevalence of HPV in the general populace it is horible that the media has to focus on the "oral sex" aspects of transmission. It might sell more papers, but it really puts a stigma on those effected...like we deserve it for being so promiscious. Our disease has nothing to do with our virtue, of that I am certain.

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