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#176544 01-15-2014 02:17 PM
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fish Offline OP
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I have a quick question relating to my diagnosis. The hospital is beating around the bush and will not confirm whether my cancer was from HPV or not. My surgical oncologist mentioned that HPV is only related to cancers at the BOT and neck. Should I push to have them test for this? Is there anyone out there who had SCC in the front of tongue who was HPV +?

Thanks!


SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
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If they did not test for HPV then they have no answer. If they did, they should be able to tell you the results. My understanding HPV status does not factor into the treatment plan, so some doctors may feel it is not critical info to have. I may be way off base but that is my understanding of it.

Overall survivability is greatly influenced by HPV status so it is something you may or may not wish to know.

From what I gather base of tongue is more associated with HPV+, front of tongue tends to be more common in smoker related oral cancer.

Don

Last edited by donfoo; 01-15-2014 02:53 PM.

Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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No expert here, but we're specifically talking about HPV-16, which 90% of the time it is if HPV cancer related, and to a lesser extent, HPV-18, which effects the oropharynx. There are cases of HPV-16 occurring in the oral tongue, to what extent is not sure, and some thought is it may be a misdiagnosis as oral tongue or a metasteses when it was in fact the oropharynx, BOT all along. HPV-16 can occurr in the nasopharynx and larynx also, but majority of cases is the oropharynx, and is where they should look for the primary. Treatment is pretty much the same for HPV positive or negative in the oropharynx, but in the oropharynx there is better response to treatment and prognosis, but that's only in the oropharyx, and no positive change in survival or response is seen outside this area. There are trials for treatment deescalation for HPV positive oropharynx cancer. If they did a surgical biopsy, they should still have a sample on file, frozen section, which can be tested for HPV.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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agreed. Usually oral tongue is NOT related to oral tongue cancer. But this does have bearing on treatment. HPV related cancers often respond very well to rads and chemo because of this they often avoid doing surgery. (Unless it's in the tonsils or a massive tumor they want to debulk) usually non HPV related oral tongue cancer is treated with surgery first (hemiglossectomy possible flap - and nodes) or cheek or gum cancer is often treated the same way.

Hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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The NCCI standard of care does not differentiate different courses of therapy based on HPV status. We all know it will change once sufficient studies are fully vetted and the medical community coalesces around the finding that the etiology of HPV p16+ is different and is treated differently.


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jul 2012
Posts: 3,267
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In addition, NCCN guidelines recommends tumor HPV testing as part of the initial work-up for oropharyngeal cancer, for prognostic purposes, but there is no recommendation for HPV testing in the oral cavity, elsewhere, in the head and neck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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If you want your cancer cells tested, TELL 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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Mr. Fish (aka Se�or Pesce), is there a particular reason you want to know? I suspect the bean counter in you is looking at numbers. That's just what we do. If you zero in on the recurrence rate of HPV+ as a predictor of future problems, you discount the massive benefit you received from early detection. That alone is a huge factor!

Keep on...you rocked it up to this point and no reason to believe that will change.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Dec 2003
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Gawd...I love the last phantom post.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Copy & Paste = Phantom Posts = No-No.


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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