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Hi all,

A group of doctors at UPenn reviewed my case and determined my cancer had to have been caused by HPV. So now I have some questions.

Is it contagious?
Does is come and go?
What else do I need to know that I don't know to ask?



Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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Suzanne,

Wasn't your cancer on your mobile tongue? I thought HPV was only the cause for some BOT and throat/tonsil cancers. Has this changed?

Did they send your biopsy for HPV testing or did they come to this conclusion another way?

M-


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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My cancer was on the right side of my tongue. Is that considered the mobile tongue?

They did not biopsy. Not for a lack of me trying, I asked 6 different docs to test for HPV and nobody would. They made the determination based on my health history and my pathology reports.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Jun 2007
Posts: 718
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If it is the right side of your tongue by your teeth...then, that is the mobile part. The base of the tongue goes down to the throat area.

I think you'd be the first here to have HPV on the mobile tongue. My understanding was that HPV could only be determined from testing a sample of the biopsy.

Did they present HPV to you as a definitive conclusion or as their best guess?


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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It sure sounds like a pacify her guess. I think you had better go for another Dr to test you. If it is HPV there is much less chance of a reoccurence.


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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Margaret,

I think statistically, there is something like a 5% chance of SCC on the mobile tongue being caused by HPV. My tumor wasn't tested, for example, because the assumption was that it wasn't HPV+, but I wonder now if it was.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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These guys can't know from taking your history. This is utter BS. Only a tissue sample plus a PCR test of that tissue is going to tell them anything. Anything else is speculation. Given the anatomical site, it is more likely that you are just one of those people that will never definitively know why.

Anything is possible and in cancer there are high likelihood's. As those relate to HPV the likelihood is that the lesion is in the posterior oral cavity, not the anterior tongue. Anterior tongue cancers are not a likely location for an HPV lesion. They certainly could tell if an HPV test was done on any of the removed tissue from your surgery. Confirm with them that that was how they determined it and let them show you the pathology report that says so. Other than that it is a bad guess.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Just as we always tell newbies that a biopsy is the only way to determine if you have cancer, the same is true with determining if the cancer cells contain HPV markers so only after the actual confirmed cancer cells are tested can they conclude HPV+ or HPV-.

While they were guessing did they also tell you what strain of HPV was in your cells? lol


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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Suzanne

I echo Brian and David's concern and wonder if you are a victim of typical medical condescension when a patient pushes back. they should have some tissue samples frozen that they can test for HPV otherwise its a SWAG (simple wild ass guess). I am curious as to what in a pathology report would indicate HPV.
I know how frustrating it is to have them refuse to do the HPV tests but that's because most institutions are not set up to do it. I only got my recent surgery tissue tested because my CCC finally made it "routine" for all head and neck cancers, before that they would not make an exception for me. (I was negative for HPV - bad news actually from what I read)

Last edited by Charm2017; 09-26-2009 06:34 AM. Reason: typos

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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Suzanne,

Not all sites are able to perform HPV tests. When Dan was newly diagnosed, there was a poster here by the name of GailMac who provided a link to a form at Johns Hopkins that had all of the requirements for an HPV test.

I brought the form to Dan's doctors to request that the HPV test be done. Our doctors sent a tissue sample to Johns Hopkins and handled all of the paperwork. Our insurance did not cover the cost...hopefully that has changed in the past couple of years.

Up until I brought the form in, Dan's doc's kind of brushed me off regarding the testing.

I've been told that they keep tissue samples for quite some time. So, if you really want to know for sure, you could call Johns Hopkins:

http://headneckcancer.hopkinskimmelcancercenter.org/index.cfm/cID/1607

The link above is to the oral cancer contacts at Johns Hopkins. I no longer have the link to the form. I'm sure you could get it if you called.

M-


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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