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#197214 - 09/23/18 03:16 PM HPV 16 really?  
Joined: Sep 2018
Posts: 11
BCGeorge Offline
Member
BCGeorge  Offline
Member

Joined: Sep 2018
Posts: 11
Hello,
Last Friday I got what the Dr called good news.. I am HPV16 positive, which has a better cure rate. That's great news, but how can a man who has been married and faithful for nearly 29 years have this? Should my wife be tested for the virus? Should I ask to have the pathology repeated? I understand that the treatment is the same, so does it really matter?

I will begin radiation treatments this wednesday (1 of 40) and I see my MO tomorrow for the first time.

George

( I will be adding information to my sig asap, I have one node, one tumor in the tonsil area and positive for HPV..)


GeoH
#197215 - 09/23/18 10:13 PM Re: HPV 16 really? [Re: BCGeorge]  
Joined: Aug 2018
Posts: 124
ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
Senior Member (100+ posts)

Joined: Aug 2018
Posts: 124
I have also wondered about the testing. I hope to see some info posted by others


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16
3 chemo treatments cisplantin
35 radiation treatments
husband was former smoker/chewed tobacco for 38 yrs.
#197219 - 09/24/18 12:33 PM Re: HPV 16 really? [Re: BCGeorge]  
Joined: Oct 2012
Posts: 1,012
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,012
Toronto, Canada
Over 80% of the general population contract the HPV virus sometime in their lives. Most are able to clear it from their systems without their having to do anything or even knowledge that they have it in their bodies.

Some members of the forum have had their spouses tested, I was never tested. Some people have chosen to get the gardasil vaccine even though they are already sexually active just in case. I would take it up with your doctors if I were you.

Here’s the info on HPV on the main OCF site.

https://oralcancerfoundation.org/?s=HPV

Last edited by gmcraft; 09/24/18 12:36 PM. Reason: Added information.

Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#197222 - 09/24/18 11:29 PM Re: HPV 16 really? [Re: BCGeorge]  
Joined: Sep 2018
Posts: 11
BCGeorge Offline
Member
BCGeorge  Offline
Member

Joined: Sep 2018
Posts: 11
Thanks,
That was one of the questions I had written down and forgot to ask today.


GeoH
#197223 - 09/25/18 02:41 AM Re: HPV 16 really? [Re: BCGeorge]  
Joined: Jun 2013
Posts: 241
KristenS Offline
Gold Member (200+ posts)
KristenS  Offline
Gold Member (200+ posts)

Joined: Jun 2013
Posts: 241
alabama
Mine was HPV positive, and we have no idea how that happened. I think (personally, as I am NOT a doctor) that there are unknown transmission vectors at play. We too are a long time faithful and monogamous couple, and nothing at all before marriage, so where the heck did it come from? (And yes, I had doctors try circular arguments with me, but the virus still had to come from somewhere, and it can't have been from my husband ... so where?)

I tend not to share my HPV status outside this group because people leap to dreadful conclusions because of it, and it's just not so. And either way, it's still a crappy cancer, and we all get the same rads and chemo and surgeries and whatnot.

We never did think of worrying over testing for my husband ... we figured he either had it or didn't, and his body was clearly dealing with it better than mine was. And if something happens down the road, it happens, and we'll be better prepared.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
#197225 - 09/25/18 03:16 AM Re: HPV 16 really? [Re: BCGeorge]  
Joined: Aug 2018
Posts: 124
ConnieT Offline
Senior Member (100+ posts)
ConnieT  Offline
Senior Member (100+ posts)

Joined: Aug 2018
Posts: 124
I'm with you KristenS on this.....husband was telling everyone his was HPV16 and I don't think he actually knows for sure but it made him look better than admitting he had smoked and chewed tobacco for over half of his life. I don't want to say it's HPV16, first of all because I don't know but also it makes people question your lifestyle!


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16
3 chemo treatments cisplantin
35 radiation treatments
husband was former smoker/chewed tobacco for 38 yrs.
#197231 - 09/25/18 03:06 PM Re: HPV 16 really? [Re: BCGeorge]  
Joined: Jun 2015
Posts: 15
Neumann Offline
Member
Neumann  Offline
Member

Joined: Jun 2015
Posts: 15
Il
It is CANCER and thats all that matters. Getting the right treatment and trying to get our lives back is the most important. My husband was a 2 pk a day smoker of Kools and HPV Positive. You can't tell me that the darn smokes had nothing to do with his stage 4 soft palate cancer. I had a pap and I I do not have HPV. I never even gave the HPV thing a thought. I know you can harbor that virus for years and I also believe that you can contract it other ways. My husband has had terrible fall out from all the treatment : Osteoradionecrosis of his Maxilla and 2 Heart attacks and the last was a massive. He is still going strong and pushes forward everyday. He still runs a business and takes care of us. We are flat broke and financially struggle. But all I care about is him staying healthy and positive! Your Health is Your Wealth! Bless all of the Warriors and their Caretakers!


Husband diagnosed 2/13 lower lip scc in situ 2 surgeries never scanned. 8 months later diagnosed soft palate scc stage 4A, tonsil and nodes involved. Hpv positive. Told by ENT small t1 tumor brought in to surgery for tumor removal and neck disection. Aborded surgery. Stage 4!! Finished rads and chemo Jan 2014. Grade 4 ORN of the maxilla, 30 HBOT , sinus surgery , maxilla surgery, buccal flap 4/2015. Doing good. 9-2015 red patch on soft palate , waiting to see.

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