| Joined: Feb 2013 Posts: 13 Member | OP Member Joined: Feb 2013 Posts: 13 | My husband was diagnosed with BOT cancer, but his HPV swish test came back negative. They never did an HPV test when they did his biopsy. He did not have surgery to remove the tumor. I'm scheduled to go see my GYN next week, and is there a specific test that I should ask for in order to be screened? Any suggestions on what to make sure she does that might not be tested for normally?
Wife of Wayne, diagnosed in August 2012 with SCC stage 3 BOT, 8 weeks radiation/chemo in Aug-Oct 2012, currently in week 4 (as of Feb 2013) of 12-18 weeks of additional chemo. My blog on being "The Spouse" of someone fighting cancer: http://hubbyscancer.blogspot.com/ | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Your HPV test can be done at the same time as a Pap smear. Here's information about the test from the Centers for Disease Control and from the National Cancer Institute. The two tests -- HPV and Pap -- are commonly both done these days as part of a regular cervical cancer screening; you can double-check with your GYN to make sure the HPV test is being done. As for the swish test -- that only indicates whether there is something in the area that got swished. Depending on gargling technique, the test might not reach to the BOT area, so even if there is HPV at the BOT, it may not get identified. Here's a thread about the limitations of the swish test. And like the swish test, the gynecological HPV test is a snapshot of the moment it was taken. If your test comes back negative for HPV, that doesn't necessarily mean that your husband's tumor wasn't caused by the virus, which can lurk unseen for years. You may have been exposed at some point and then, like most people, simply cleared the virus on your own.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Feb 2013 Posts: 13 Member | OP Member Joined: Feb 2013 Posts: 13 | Leslie, Thank you so much for taking the time to respond. I read over the links, and I now have a better idea of what to insist on. I am, however, still confused about the whole HPV link. Not exactly confused, but puzzled maybe? My husband and I have been together for over 15 years, and I have had regular pap tests during that time, but I don't remember if they ever tested for HPV. I've never had any issues come up during the test, and the last time, my GYN said I could wait 2-3 years before getting the next one (as the article also suggested). With that said, since my husband has now gotten BOT cancer, is it likely that I have been exposed at some point in the past even if nothing shows up now? Is this considered a risk factor that would require more regular testing than the 2-3 years for a normal test? Arrgh. This whole thing is definitely not the fun event I was promised!
Wife of Wayne, diagnosed in August 2012 with SCC stage 3 BOT, 8 weeks radiation/chemo in Aug-Oct 2012, currently in week 4 (as of Feb 2013) of 12-18 weeks of additional chemo. My blog on being "The Spouse" of someone fighting cancer: http://hubbyscancer.blogspot.com/ | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Yes, you certainly could have been exposed to HPV in the past and cleared it. Also, if your husband had any partners before he met you, he could have been exposed then -- and the virus just lay dormant until recently. It's sneaky that way. I would talk with your GYN about HPV and whether your testing schedule needs to be different from the usual recommendations. Given what you said about your husband in your initial post (non-smoker/non-drinker), it sounds like HPV+ BOT is a possibility, though without testing of the tumor it's impossible to know for sure. I think the HPV test has been offered as part of a regular GYN exam only in the last few years, so it's not something you would have had annually over the last 15 years. And if you haven't done so already, click on the HPV link in any of these posts to read more about the virus on the main part of the OCF site.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | They can still do an HPV DNA testing on your husband's surgical biopsy, if a sample is kept frozen, which usually are, If he wants to know his status for multiple purposes. Good luck.
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
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | December of 2011, after Kevin had completed tx for BOT HPV+, I had a PAP. It came back abnormal. I asked them to test it for HPV, but the doc said it is not a routine test and they could do it, but it would be expensive and insurance most likely wouldn't cover it. He asked me to wait 6 months and redo the PAP. After 4 months I couldn't stand it and they got me in and did another PAP. This one was also abnormal so they tested it. It came back HPV+, so I had a hysterectomy. Just our story.... We have been married 30 years. Kevin was married for 4 years before me and his ex wife had cervical cancer from HPV16 about 19 years ago. So, it hangs around a long time I guess... Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Hi Kathy,
I've been following the boards closely about the link between partners and it seemed like there was little empirical or observed or even anecdotal instances of husband/wife passing the virus to each other and then the virus morphing into full cancer (HNC for men and cervical for women).
Now your story is either extremely atypical or certainly at face value indicates some sort of link. What's the odds of such a thing happening out there?
Don
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | I have no idea, but I wasn't messing around. I did NOT have cervical cancer, just abnormal PAP's twice and with HPV present, I was done. Scary enough for the kids to watch Kev go through tx without me doing it too.
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Stacie, your husband's biopsy can stil be tested for the HPV virus. My husband's wasn't tested until a couple of months after his surgery. The reality is most adults have been exposed to the HPV virus. I talked to my GYN about the HPV virus which causes cervical cancer. The way she explained it to me is that quite a few women will have an abnormal pap test in their lifetime. A lot of the time by the time they come back to have the pap test done again their body will have cleared the virus and the test is "normal". I had an "abnormal" pap test 20 years ago. When I went back to have the pap test done again it was still "abnormal". I had cyrosurgery done and haven't had an abnormal pap test in 20 years. The HPV virus can lay dormant for years so there is no way of knowing where it came from. I do get a yearly pap test with the HPV screening.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Women can take from a year to 20 months to clear a cervical HPV infection. This happens through their immune mechanisms. Most will never know that they even had the infection, and most will clear the infection. Why some peoples immune system does not recognize oncogenic HPV's as a threat is not well understood right now, but they are definitely in the minority of the population. The estimate that I hear at cancer conferences all the time now is about 1% of people that have an oral high risk (16) infection will have it progress to a malignancy. But it is not good science to assume with these small odds that having an HPV16 infection will cascade into a cancer. My wife is positive occasionally for HPV16 and her system always eventually clears it without consequence. But this is not like getting a cold and having it go away in a week, it can take a protracted period of time. A four month window to expect you body to remove the infection is not realistic, this is common knowledge in the GYN community. As I have posted at length on the boards before, the oral swish test is worthless, and the results mean nothing that is actionable. It just creates anxiety in people that will never develop a problem for the most part.
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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