| | Joined: Jan 2013 Posts: 80 Supporting Member (50+ posts) | | Supporting Member (50+ posts) Joined: Jan 2013 Posts: 80 | Hi All, One are that my mind has gotten caught up in is HPV status and how it relates to our partners. Iknow my knowledge is very limited and may be wrong, so I wonder if others here have more insight or understanding. I know that most individuals are exposed to HPV at sometime in our lives and science doesn't quite understand, at this time, what makes it cause cancer in some individuals and not others. I also know (well believe) that we can have HPV+ tumors but test negative for HPV (through Oral Swaps, PAP smears, etc.) So I guess some of my questions are - if we have/had an HPV+ tumor, are our partners at a greater risk for cancer? And my nightmare scenario - if my HPV+ cancer is successfully treated, would I be at a greater risk of another cancer if my partner is HPV+? Does the cycle keep repeating? (And I am talking lifestyles with 1 committed partner?) Thanks in advance, Nancy
Nancy Age 56 at diagnosis Neck Lymph node removed 11/2012 Tonsillectomy perfomed 12/2012 - identified as primary SCC Left Tonsil with Left Node involvement, DX 12/2012 RX started 1/29/2013, finished 3/23/2013; Daily IMRT (35 Sessions) Weekly Taxol/Carboplatin (6 weeks) PEG placed after week 4 (3/1/2013) PEG removed 6 1/2 months later (8/12/2013) | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 8 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 8 | Hi Nancy! Im sorry, I am not an expert about HPV but I do know some info. At this time there is more unknown about HPV than is known. That is why research is so important. OCF funds research projects to try to find the answers to many tough questions including how some get HPV while others dont. The best thing young people ages 12-26 can do (both male and female) is to get the series of three Guardisil shots. This will protect them for the 2 most common cancer causing strains of HPV #16 and #18. Besides oral cancer, HPV is known to cause cervical cancer, anal cancer, penile cancer and genital warts. By getting the shots it will protect the young people from going thru what you currently are. I suggest taking a look at the HPV info on the main OCF pages. HPV ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | 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 | What I read, the medical experts say, partner's of anogenital HPV positive, have an increased risk of contacting scchn HPV cancer. The heading is probably a typo for HIV, but while on the subject, they also say being hiv has increased, forget the percentages, of an increased risk of having oropharyngeal HPV cancer than being non hiv. Hope this helps answering the question.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Nancy This topic comes up regularly. Usually it is the unspoken context of fear that a loving sexual relations with the spouse or partner who has cancer will cause the other one to get oral cancer also. As far as I know, there are zero valid studies showing that having a partner with HPV oral cancer increases the risk for the other partner to get oral cancer. If there are, then no one has cited to them. As a practical matter, in the past I have noted that considering over 8,000 members here, and usually only one partner posts, so it covers 16.000 people, no one posted that both partners now had it. Last year, one poster tracked down one couple who did both end up with oral cancer. I do not think there is any valid comparison between HIV and HPV,considering what happens to the majority of people who get HIV as opposed to the majority who get HPV and never develop cancer. Two very different viruses. Short answer: with all the real things you have to worry about now, IMO, this is not one of them Charm 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
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Just to clarify the link between HIV and HPV: those with HIV have an increased risk of contracting HPV related oral cancer (and penile, cervical, anal cancers). This is a consequence of an impaired immune function added to lifestyle choices. I believe that because the chances of converting an HPV infection to an HPV cancer is so tiny, the chances of the partner ALSO converting an HPV infection to HPV cancer is even smaller. Remember that of all the millions of people who contract HPV at some point in their lives, less than 1% (I read 0.8% somewhere) fail to clear the virus naturally. It then takes years for it to develop into something nasty and may never do so. The odds of having two of you in the same relationship with the same unlucky set of circumstances would be astronomical indeed. I also wonder if successful treatment would have erradicated the HPV infection as well as the cancer. Without putting too finer point on it, Alex had HPV caused oropharyngeal cancer and it has not changed my attitude to the intimacies in life. However, after going through what we all have, it would be understandable if this did give some people pause for thought. Vaccinate your kids/grandkids though and educate the nay sayers who think the handful of disability/deaths that may or may not have been caused by the HPV vaccine in any way equates to the thousands who die because no vaccine was available to them.
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  Still underweight
| | | | | 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 | HIV Men have a higher than expected rates of certain non aids related cancers, tonsil cancer is SIR 10.9, standardized incidence ratios to compate cancer risks of HIV positive to HIV negative. I havn't seen many numbers on many articles, only that HIV positve have an increased frequency of HPV associated oral lesions, higher risk of HPV, and with CD-4 counts less than 350, 200, a three-fold increase of tonsilar cancers on various abstracts, but Dr. Gillison has mentioned some, high risk HPV in HIV at 13.7 percent vs 4.5 in non HIV. http://www.cancerpage.com/news/article.asp?id=6837http://www.ncbi.nlm.nih.gov/pubmed/19339939?dopt=AbstractPlusA Sweden study says husbands of patients with HPV associared cervical cancer had an increased risk of tonsillar cancer..standardized incidence rate greater than 2.00
Last edited by PaulB; 03-02-2013 07:07 PM.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Klo See why you can't leave OCF. You no sooner spell out that unless you are talking about AIDS or HIV, there are not any studies showing that HPV infected partners put their partner at any more risk than non HPV, then Paul puts up links to two studies that if you did not read them, you might think otherwise. Once you read them, you realize that unless you or your partner has AIDS, it is not relevant to the OP's question, but an academic aside. (although they do support Paul's first post that partners with AIDS can catch cancer more than non AIDS). But how many posters here actually click thru and read the study to realize that neither of them address the original question by Nancy. Plus of course Dr. Gillison, with OCF's help, has developed her HPV information quite a lot in the last nine years since that 2004 study cited. You are so much better and nicer at pointing out that studies cited by posters do not always mean what is implied or are irrelevant to the question. Of course neither one of those studies contradicts your opinion and mine , it only tells the common sense that AIDS patients get sick from things that non AIDS patients do not, and that would include HPV. I'm sensitive to this subject, since my little brother died 26 years ago from HIV complications: a common fungus that we all carry but does not kill us. So the "news" that HIV men get more cancers, more diseases seems totally off topic to question posed in this thread. So to repeat, zero evidence anywhere that partners without AIDS or HIV, but only HPV, have an increased risk of giving each other oral cancer.
Last edited by Charm2017; 03-03-2013 07:17 AM. Reason: toned it down
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
| | | | | 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 | Charm, the original title of the post was "HIV Questions" but the content was about HPV, so both were addressed to the posters inquiry, and may be of interest to some. The title has since changed to " HPV questions." I'm sorry to hear of your brother, and mine too passed away at age 26, as well as two other brothers at 48, and 52 for other causes. I live in NYC, and many friends, coworkers are gone due to Aids. The HIV abstract post was also revelant to the title, and continuation of facts since there is increase in tonsil cancer, as well as high risk HPV, in this group. The poster, Nancy14, asked how HPV status relates to partners, and if there is a greater risk of cancer. I just included what I read, "there is an increased risk with partners with cervical cancer, anogenital cancer," and posted before Klo, who repeated basically what I said with some numbers, guesswork, but did not include actual studies. I never saw any numbers either, that I recall, only one quoted in a Swedish study. Also, you should not try to insult anyone politely, by saying to Klo, "You are much better and nicer at pointing out that studies cited by posters do not always mean what is implied or are irrelevant to the question." That butt kissing can be done by private message. Btw, you are wrong about the HIV fungus being in everyone, but that's another topic, and conspiracy theory of yours. I was actually worried about you not posting recently, but see you are doing much better.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Paul Thanks for clarifying that. I had only saw the HPV subject and wondered what the heck you were doing. So I apologize for my accusing you of going off topic and conflating HPV with HIV. As for my remarks to Klo, they were primarily self deprecating as unless you go back into the past threads on Erbitux, you would not know that "You are much better and nicer at pointing out that studies cited by posters do not always mean what is implied or are irrelevant to the question." was self deprecatory and only tangentionally about you. It was an apt description of how Klo handled some of my citations on Erbitux being worthless. But that was before you joined the board so you may have missed it. She kept me sharp and I was able to muster the later criticisms of the studies which suggest her Alex was a very lucky man not to have gotten Erbitux. I do not know of any HIV fungus in everyone nor have I ever even heard about such a thing But in reading my post, I can see that it is unclear that I meant that if you do have HIV, then common fungal infections, spores, parasites that all of us encounter and our immune system handily dispatches with perhaps diarrhea, can turn fatal. Even normal everyday stuff that everyone has can suddenly rage out of control for AIDS patients. The medical term is opportunistic infection. It looks like we both agree that anyone who thinks there is an HIV fungus inside us does have a major conspiracy issue as well as being wrong. Do you have any citation to the Swedish study, as I have not seen anything like that Charm
Last edited by Charm2017; 03-03-2013 09:25 AM. Reason: clarify
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
| | | | | 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 | No troubles, Charm. Makes for a lively discussion. I may add, and a little butt kissing myself lol, you and Klo do add a certain element of authenticity to the mix. I don't think this is the end of the subject being HPV is complex, as you know. I hope we answered the nancy14's question. Btw, I have plenty of conspiracy theories lol. Not much info, here are three seperate articles, last was the swedish mention. "Oral HPV infection therefore has important health consequences, and yet, little is known about risk factors for infection. Limited available data suggest that oral HPV infection is likely sexually acquired: a history of sexually transmitted disease and number of oral sexual partners are associated with both oral HPV infection (6, 7) and HPV-positive oropharyngeal cancer. (4) Additionally, the presence and persistence of an oral high-risk HPV infection has been associated with a persistent oral infection in a spouse (8). Consistent with this data are the increased risk for oral cancer among husbands of women with cervical cancer (9, 10) as well as the increased risk for oral cancer among women with a history of cervical cancer. (11, 12) Indeed, husband-wife pairs have been diagnosed with HPV16-positive tonsillar cancer and viral sequencing revealed the HPV16 variant to be identical in the tumors, consistent with transmission of the virus between the couple. (13)" (8) "although squamous cell carcinoma of the head and neck (SCCHN) is closely linked to tobacco and alcohol use, there is an increasing incidence HPV16-related SCCHN arising in the oropharynx. The mechanisms of viral transmission, carcinogenesis and natural history are not well understood. Here, we report a couple-husband and wife diagnosed synchronously with squamous cell carcinoma of the head and neck wherein the tumors were positive for HPV16 by PCR diagnosis. Both viral genomes were genetically identical and closely related to the revised European prototype, HPV16R. An uncommon signal variant nucleotide was identified in both genomes that is not present in the HPV16R. These tumors likely represent transmission between the couple. PMID: 18061523 [PubMed - indexed for MEDLINE]" "Such an increased risk of tonsillar cancer was not associated with cervical HPV lesions in another study in Sweden.27 Different rates of tonsillectomy might partly explain the discrepancy between these two studies. More importantly, however, it was shown that husbands of patients with HPV associated cervical cancer had an increased risk of tonsillar cancer (standardised incidence rate, > 2.00), which also suggests that HPV might be involved in tonsillar carcinogenesis. Such an association is further supported by the fact that HPV associated tonsillar carcinomas have been detected in transplant recipients, who have an increased risk of HPV infections.31,32"
Last edited by PaulB; 03-03-2013 10:31 AM. Reason: added articles
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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