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Philly Offline OP
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Hello everyone. Since reading the information on this site about the link between HPV and Oral Cancer I asked David's Dr. about whether or not his tested positive for HPV.

His response was that it's not something they generally test for in hard palate tumors, that it was more common it is most common for tumors of the oropharynx or back of the throat, and treatment would be the same regardless. He is checking with pathology to see if there is a way to test it after the fact (his surgery was in January 09).

I wanted to see if anyone else has had a similar experience with having to ask for testing?



Mom of 4, wife and caregiver to David, 37 yrs old, diagnosed 12/4/08 SSC T4NXMX Maxillectomy on 1/8/09. 19 out of 30 scheduled rounds of IMRT Radiation Therapy. Cancer free!! (Last checkup 8/09) Next 10/23/09


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I had to scream but that was 3 years ago and there was only one U.S. testing facility, Johns Hopkins, and Moffitt really didn't care what caused my OC but I didn't care that they didn't care cause I DID.


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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Philly, simple answer YES, they can test a Jan 09 sample if they want to. I had to ask for two years before I got an okay, My doctors knew that base of tongue cancer often involves HPV but gave the same reasons back in 07 and 08 on not testing my 07 samples: no change in treatment plan plus the medical Catch 22: we don't usually do it so it's not customary and routine, so your insurance won't pay for it. I wish I could claim credit for being a persuasive and persistent advocate, but what changed was my CCC now is "routinely" testing pathology samples for HPV in oral cancers due to the research sponsored in part by OCF. Even though my surgery was in February 09 before they changed the pathology routine, they agreed to run the test. It was negative but I had guessed that from its coming back so strongly in the same place. I still haven't seen the insurance claim or bill but that's a posting for another thread in the future.


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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I was told the same thing about my insurance would probably not pay for the test (again 3 years ago) and I had to agree to pay for it if insurance didn't cover it and I was told it would cost appx $600. Bottom line is that my insurance covered it and I never did see a bill.


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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Philly Offline OP
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Thank you for your responses. I'll update once he gets back w/ the word from the pathologist.




Mom of 4, wife and caregiver to David, 37 yrs old, diagnosed 12/4/08 SSC T4NXMX Maxillectomy on 1/8/09. 19 out of 30 scheduled rounds of IMRT Radiation Therapy. Cancer free!! (Last checkup 8/09) Next 10/23/09


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I was tested at Ohio Sate James CCC and didn't have to ask. THey just added it to the bill that my insurance wouldn't pay . If anyone has a few thousand they can spare, LOL you can pay off Ohio State for me.


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
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[quote=EzJim] THey just added it to the bill that my insurance wouldn't pay . [/quote]

Funny Jim but all to true.


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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Very true David. LOL Like I will be dead and that bill will never be paid. The Drs forgave theirs but the one year I needed to get out of the Hospital bill is 2007 ,, the only year I can't find. Tried to tell them my income is fixed and the only change is SS cost of living increases. Way over that head of hers LOL I sent 2006 and 2008 but she still wants 2007.


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

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