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#123512 10-24-2010 02:04 AM
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Hi guys,

Can you clear something up for me please? So my cancer is on the left side of my tongue - more towards the front of the tongue and the middle rather than at the base of the tongue. Does this mean that it's not HPV related? Thats what i have concluded from the posts on this website. Am i right? Should i get tested for HPV then or not?

Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
Joined: Nov 2006
Posts: 2,671
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I was wondering about that, too, Minh. My son's cancer was on the right under side of his tongue. In searching OCF in News, re HPV, I also noted this: "The study looked at patients with nasopharyngeal cancer, a tumor that grows behind the nose and at the top of the throat, above the tonsils. The quote was at this link:
http://oralcancernews.org/wp/rare-head-and-neck-cancer-linked-to-HPV-study-finds/
I'm sure someone else will be able to comment on this.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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The large majority of HPV positive SCC cancers begin have these commonalities: white male, primary BOT or tonsils with mets to the nodes. If I remember correctly college educated was also listed so I guess we have to go to college & join a wild fat house to get the good HPV. lol

The reason for the BOT and tonsil location is the type of cell that located in that region is the type of cell that HPV "prefers".


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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Anterior of the mouth HPV+ oral cancers are pretty rare. They tend to be base of tongue, where it begins to curve down your throat, the tonsils, the tonsillar crypt behind them and the oropharynx itself or the very back of the mouth you see when you look in the mirror. In order to type your cancer to HPV they have to test cells from the biopsy or the surgical removal of tumor tissue itself. Thousands of patients into this we just don't see that many anterior of the mouth HPV + SCC's.

That news story does not relate to either of you as nasopharyngeal cancers are in the back of the oral cavity and above it. The reason that news story was worth putting on the oCF site was that these types of cancers were historically the realm of the Epstein Barr virus not HPV. But now we are seeing some of those turn out to be HPV16 caused. Again an area right above the oropharynx.

I am assuming that you have all read the HPV page listed when you click the word HPV in any posting, or on the OCF web site.


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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Hi Brian,

Yes i have read all the HPV stuff. Just that english is a second language for me so sometimes i'm not too sure about what i read - get a bit confused with all the information. Thanx again.

Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
Joined: Sep 2010
Posts: 179
"OCF Down Under"
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Joined: Sep 2010
Posts: 179
Thanx David, that was what i thought and was trying to get a confirmation on it.

Minh


35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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That does explain things. Thanks, Brian and David.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Hi Minh

Whilst I appreciate that HPV related tumour where yours was is rare, so is being your age and female. Maybe you are one of the rare ones (we already know you are one of the special ones).

For the common good an HPV test may be worthwhile as it may provide data that will give us a more accurate picture of the incidence and prevalence of HPV related cancers, who is at risk, and importantly, balance against how many HPV infections DONT progress to oral cancer. It may also put it on your doctor's radar for other patients. We pushed hard for my Alex to be tested which achieved the unexpected but welcome bonus for the half dozen patients in our "group" who were also tested when Alex came back positive in addition to a "complete response" to treatment.

I have just finished reading an absolutely appalling news report on another thread which reported that in Australia and New Zealand, we have less HPV related cancer than the rest of the world.... Well, duh, if we don't routinely test for it, our incidence is going to be a bit low isn't it? I really hate journalists who make such obviously foolish statements.

Karen


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: May 2010
Posts: 638
klo Offline
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and no obvious/smutty comments speculating on why the incidence of HPV is low in Australia please blush


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Sep 2006
Posts: 8,311
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OK, I just erased mine.


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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