#86911 12-29-2008 08:30 PM | Joined: Dec 2008 Posts: 3 Member | OP Member Joined: Dec 2008 Posts: 3 | I have been combing the literature and asking the Doctors but can�t seem to come up with any definitive answers to my situation. Would anyone out there mind addressing the following specific concerns for me ? I assume that my tongue cancer was caused by HPV through oral sex. If this is the case, and I do in fact have (had ?) HPV� - What is the treatment for HPV if any ? - How do I know if I still have it ( HPV) ? - How long does HPV stay in the body ? - Can the virus re-manifest as cancer ? - Can I transmit the HPV to a partner ? � In what ways ? � How easily ? - Can any type of sexual activity (including kissing) transmit the virus ? - Can I re-acquire the same virus (+16) or a different strain through sexual contact ? - Am I at increased risk of re-infection or re-manifest because it�s already caused cancer once ? - Are there any limitations or restrictions (other than abstinence)that I must observe regarding sexual activity (including oral sex) to protect myself and my partner ? - Can my mucus / saliva be stained for HPV strains to see if I still have it ? I appreciate your indulgence in what I�m sure seem like na�ve questions. It�s just that now that I�ve concluded this intensive course of Chemo, Radiation and Immuno Therapies, and am showing cancer free scans, I am looking forward to getting my life back to some semblance of normalcy (including dating) during the coming months/year and these are things that have been on my mind as I undertake this process. I can't take the chance with someone else's life/health and I'm not going to even get into the situation if there's a chance I'm still contagious. I'd really hate to think that my sexual days are over but if that's what it takes...
DON - Age 49 at Dx 2/08, HPV 16+ HNSCC, T1N2bM0, Stage IV BOT + 2 nodes L&R, non smoker, casual drinker. Treated w/ Cisplatin x4,concurrent IMRT x37, Cetuximab x10, no surgery (other than feeding tube, twice!), no Peg, Tx at Massey Cancer Center VCU, concluded 7/25/08. 3 scans clean now !!! YEAH!!!
| | | | 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 | First before you go through this exercise and potential lifestyle changing ideas, you are basing all you questions on a likelihood but one that is really unknown. You may not be HPV 16 positive. No treatment for HPVTest your next cervical swab with the Digene test the CDC recommends. NO test available for your husband. There is no oral test, except on biopsied tissue right now that is practical. There are swish collection systems, but no guarantee where all the cells are coming from and therefore there are no for sure ways of testing the mouth. No one knows, and it is different in different people, some might be forever, some might be years, smoe months. (You really should take the time to read all the stuff on the OCF HPV page). Unknown Yes Intimate contact - cell to cell contact not fluids Not known, but easy enough since it is the most common sexually transfered virus in the world Yes Unknown, despiete what logic dictates. No No. Even if you are contagious, there is no way of knowing if your husband is a person that the virus will persist in or not. No persistence, no malignancy. So no scientific answer to your question. What we know is far outweighed by what we don't. Your OCF donations go to research that is looking into all this. Just gave a new grant to Gillison today. Now read all the PDF documents on the OCF HPV page, and the page itself.
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. | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I am sure that Brian will have better info but here is what I know. There is no treatment for HPV, like most other viruses To find out whether you have HPV you would have to obtain a specimen of your biopsy and have it sent to a specialty lab. It stays in the body forever. No one knows whether it can re-manifest itself again as cancer - I asked Brian that very question about 5 minutes ago. Transmission: that's tricky. Some doctors feels it is an issue of the amount of exposure over time. The immune system of the other party plays a role as well. I would suspect that it can be transmitted genitally and/or orally if the virus is active (and I'm really guessing there because the herpes virus can be passed when it is not active). This is certainly an area needing more basic research. I would guess that under the right conditions you could pass this to a partner. It is an STD. There is no Wrights (or other) stain test for this virus that I know of. It can go dormant like herpes zoster and is nearly impossible to detect while in that state. These are NOT naive questions - they are very good ones and we would all like to see some more research on this. Also the efficaciouness of the new vaccine may play a role (Gardasil). It is really on the frontier of modern medicine.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | Brian, I'm curious...two questions: (1) If HPV has to be transmitted through intimate contact not fluids, why are heterosexual men getting HPV related cancers? Nothing on a woman's body can reach my tonsils or BOT... (2) We have two different HPV related topics in progress, where's David? LOL
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | That's why I mentioned earlier it is an STD. See: http://www.cdc.gov/eid/content/14/6/888.htm
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | David doesn't stay on line 24/7. He does try to work occasionally besides both Brian and Gary answered all the questions to the best of anyone's knowledge on HPV so nothing I can add nothing except I encourage anyone Dx'ed with SCC of the tonsils or BOT to get tested for HPV. Maybe anyone Dx'ed with SCC would be better. Ray your question #1...don't you think oral sex could explain it for OC or vaginal sex for Penal Cancers? I have also been told kissing can as well for OC.
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.
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | David, It seems as if we need you at all times!!! Isn't this your full time job?  At least you know we love your opinions!!!
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | 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 | Because it transfers easily through epithelial cells touching epitherleal cells, that means it isn't carried in semen, blood saliva etc. as a necesssary delivery mechanism. It may (we do not know for sure) live in cells that are exfoiated and transfered around, and it may live in some cell types in which it does not cuase malignancies. There's a whole bunch that we do not know. As an illustration of virus behavior, just consider the herpes simplex 1 or 2 virus. It is in your mouth or on your genitals when active, it can also be on your skin, in your eyes, and other places causing painful ulcerations when active. You NEVER shed or get rid of it, you have it for life. But you don't have sores for life so.... it goes dormant. When it chooses to do that, driven there by your immune system, it lives on the ganglions of your nerves. It's there, but it isn't causing a HSV1 or 2 lesions there, it is just hanging out there until the next time that it desires to manifest itself. Some researchers say the HPV can be dormant in you for decades. Interesting idea. Certainly possible. Provable? NO. If it is dormant in you, they have no idea where it is, or even where to go look for it. Who would have thought that HSV1 would go live on your nerves? That isn't where it manifests itself. So even researchers make comments sometimes that are a best guess, with no scientific proof, like - because another virus does something, perhaps this one does the same thing. A leap of possibility, but not proof of actuality. But is that a fact? No way. I can't count the number of doctors and dentists I have heard say this dormant thing with conviction / belief and teach it to others in courses as if it were fact. It ain't. It is just as plausible that because the virus is so common and transfers so easily, that you get it, get rid of it, and get it again, over and over. Perhaps from your monogamous sex partner who has an immune system and/or genetic make-up that allows it to persist in them. Since it doesn't produce visible, painful sores/lesions, they and you, wouldn't know.
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. | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Believe me that Dormant thing proved life saving to me. When I finally was Dx'ed with HPV16 which was several months post Tx my wife, my Vida, the Love of My Life, etc, etc of 20 years asked what causes HPV and the doctor calmly said "it's transmitted sexually". I was sitting in the docs chair and remember catching the "I'm going to KILL YOU" look on my wife's face and I guess the doc did to and he quickly responded "it can lay dormant for DECADES in the body and then cause cancer" and I felt like he just saved my life again!!
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.
| | | | Joined: Dec 2008 Posts: 3 Member | OP Member Joined: Dec 2008 Posts: 3 | Thank you David, Brian, Gary and Ray for your candor and information. I will thoroughly review the HPV section for ongoing additional information. It would appear though from your responses that I "might, could, possibly" be an ongoing risk to infect a sexual partner because there is no way of determining whether I continue to have or be able to transmit the HPV +16 that I was diagnosed with at biopsy. Any intimate sexual contact at this point would be playing Russian Roulette with their health/life. Also, I'm pretty sure that the "oh BTW, before we go any further, I seem to have this teensie oncogenic virus that you might get" comment is likely to leave skid marks from my front door. I know I wouldn't take the chance if I knew. Oh well, there is lots more to life than sex and at this point, I am grateful to just be alive and able to do them. I'll keep an eye on this "string" (?) to see what other responses pop up. FYI, my Radiation Oncologist at MCV-VCU (Shiyu Song, M.D.) has indicated that he has a long history of studying HPV and may be interested in conducting a clinical trial along these lines. I'm sure he's already familiar with OCF but may be able to obtain some grant funds to begin.
DON - Age 49 at Dx 2/08, HPV 16+ HNSCC, T1N2bM0, Stage IV BOT + 2 nodes L&R, non smoker, casual drinker. Treated w/ Cisplatin x4,concurrent IMRT x37, Cetuximab x10, no surgery (other than feeding tube, twice!), no Peg, Tx at Massey Cancer Center VCU, concluded 7/25/08. 3 scans clean now !!! YEAH!!!
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