Does anyone have any links to a good Clear site to read a little more about HPV symptoms and transmission?
There are no symptoms, per se, to oral HPV related cancer as the cancer can go undetected until it is Staged a III or even a IV. Most times and I say that with some hesitation, patients first notice a non painful lump on one side of their neck which leads to some biopsy OR they notice a "difference" in the back of their throat or tonsils and again a biopsy follows. The typical Oral HPV patient is a white male (younger than most non HPV oral patients) with a Primary in either the base of tongue or tonsils and again, usually by the time it is discovered, it has already spread to a node or 2 on the same side of the Primary.
Re transmission....HPV is extremely contagious and may easily be transmitted to the oral cavity by French kissing, mouth to vagina or any other means that collect cells in the vagina and transmits them to one's oral cavity (you can be creative here). This all assumes an HPV presence in the other person.
With regards to HPV transmission, our MO just said many experts feel it could even be possible to contract the virus from a drinking glass one HPV+ has used. In our case we are baffled at how/when infection occurred since we've been in a monogomous marriage/relationship for 36 yrs. ????
Bonnie
So, can the HPV (gardasil) shots for young females be helpful in terms of prevention of oral cancers???
Your oncologist is not a virologist. There is no evidence that the virus can live on a surface for any period of time. Only in the last 12 months have we even been able to culture it outside the body to study it, so what we know about its life history, is minimal. The science community at large believes that the vaccine will protect from all disease that HPV16 causes, anal, penis, vulvar, cervical and oral cancer. If you can't get the virus, you can't get the diseases that it causes. There is no scientific clinical trial that proves this, but the logic dictates it. This is discussed to some extent at the bottom of the page I referenced above.
I also heard that comment (re acquiring from a glass) from a viral researcher at Moffitt who told me that it would be possible for the virus to exist on a recently used glass and I imagined a party atmosphere. As Brian says there is way to little info out there about HPV considering the worldwide population it invades.
After I pushed and pushed to find out what caused my cancer and Moffitt finally (post Tx) sent my slides to Johns Hopkins which confirmed HPV16, my wife & I who were married 18 years at the time were talking to my SO at Moffitt and I was sitting down between the 2 of them and my wife casually asked the Dr "so how do you get the virus?". Innocent enough question, right but I had failed to tell her anything about HPV so the Dr blurts out "IT'S AN STD, IT'S SEXUALLY TRANSMITTED." Well I didn't have to look at my wife to know that after enduring all I went through with my Tx that I was a dead man walking when, as he must have sensed the icy tension that had suddenly come come over the entire hospital, he states "but it can take decades for the virus to cause cancer." PHEW, I WAS ALIVE AGAIN!! Anyway, my point is that some researchers still believe the virus can go dormant in the body for decades. No one knows why it goes dormant or why it comes back out but that MAY explain Bonnie's question.
I've also read that it can take decades for the cancer to show up after HPV infection. I had a class 2 PAP (suspicious cells - precancerous) that had to be treated with a colposcopy and cryosurgery 30 years ago. No one knew about HPV back then, but I probably had it. Imagine the guilt thinking I might have passed this on to my husband. He blames it on his previous girlfriend, who really got around, but who knows? I can imagine your discomfort David, albeit from another angle.
Our ENT surgeon was fairly sensitive when I blurted out that I'd had precancer of the cervix, and said there was no way of knowing where Gordon's HPV came from. He said you could even get HPV from a doorknob (no off-colour jokes, please!) but I think he was just saying that to diffuse the atmosphere. It's about as plausible as getting HPV from a glass. Anne
There has been no proof that the virus goes dormant, though as David says some people believe this since SOME other viruses can. But we have found no evidence in anyone of a dormant HPV virus and that has ever been published in any peer reviewed literature.
Sometime in the next year we should have an idea how long it can live on a surface outside of a cell. No one currently believes this is any protracted period of time, but if it did, there would be way more of it around in people than there is. Just think, one HPV positive person could touch a door knob entering Grand Central Station, and infect hundreds of thousands of people in a day or two. That isn't happening.
Given the multiple contacts that most people have with others, pegging any one person as the one that gave it to you is impossible, and an exercise in how to start useless fights with people that you care about. The blame game in something like this has no means to be accurate, and no one should engage in it.
Of course, blame is not helpful to anyone, I agree. It's hard not to want to know where the HPV came from, but it's a futile exercise. I was ridden with guilt for months after Gordon's diagnosis. As for the door knob theory, I'm pretty sure the ENT was pulling our legs a bit (he also said "no kissing") in an attempt to ease the tension. He's known for having a somewhat offbeat sense of humour. Anne
Well, I went on TV to do a story about my HPV+ disease and of course the subject of my wife and our sex life came up - on national TV- and when I got home she was convinced, since we had never discussed how this came about that she had given it to me. It took a couple of years of reading articles about the virus, before she finally believed that I could have been the one that brought it into our relationship... and idea I wanted her to embrace. Both of us had multiple sex partners before our marriage. But the truth is there is no way to know, and the past is the past. There is only today, and we all hope for a tomorrow. But tomorrow is guaranteed to no one.
I know quite a few people who deal with HPV not necessarily orally, but ya. Its not a fun disease, but it's also not always detectable, and people can pass it on without knowing as well.
What I don't understand is why doctors tell people they don't have it anymore after 3 years of clear checkups and then 6 years later you get another symptom or it shows up again? Wouldn't this generally mean that it's been there the whole time, and not that it goes away. I have heard it both ways from doctors, some say it's life long and others tell you it goes away. Do we really know the correct answer to this?? If not, doctors shouldn't really be telling people one way or the other.
Well I don't see how your doctor could ever declare you HPV free. Again there is waaay to little known about HPV and that's one reason I started my little crusade to bring this virus to my public 4 years ago. Certainly not because of me but there is a lot more info out there today than there was 4 years ago and hopefully 4 years from now we will know a lot more.
Bethers -Wouldn't it be just as likely that your immune system cleared it for several years, and given how common it is, you just got reinfected? The person I turn to with this question is Maura Gillison, and her answer is that the immune system is certainly capable of clearing it. Whether or not it has periods of latency, no one knows, and I do not think we will have an answer for that.
Latent and dormant are not the same thing, and people/doctors that use those terms interchangeably I believe are mistaken. Latent would mean that you get a disease, and that takes some period of time, weeks, years, before it becomes active and manifests itself in a manner that can be recognized. A latent disease could be cured and not exist in your body afterwards, whether by your immune system or outside intervention.
Dormant insinuates that it stays with you like herpes forever, and has periods when it is active and periods when it is not, but it is something that you have for life. We know Herpes simplex 1 and 2, are like this because when non active we can still go and find it living on the ganglion of your nerves. We do not know the same thing about HPV, and that is why many science people believe that because of the fact, that it is so common that -cure, reinfection, cure, reinfection etc. - is the most likely scenario.
It will be many years before we have answers for this and many other questions about HPV. Not a lot of research is being done on it specifically, so it will unveil itself to us over years not some shorter period of time. OCF gets phone calls everyday from so many misinformed people that I am truly sick of explaining this to wives that think their husbands have had extra marital affairs, couples who have a woman test positive and wonder if they should stop having sex and so much more. The Oral dna test being sold to dentists, and which has limited value, is being used by dentists as much for profit motive in my mind as any other reason, and they are creating a lot of anxious patients out there, who really have noting to worry about. Of course they don't know much about HPV so what they tell patients is most of the time when I hear it wrong.
Yes, HPV is a major health issue that is not getting the attention it deserves. Let's not forget the numbers here. According to the CDC (Center for Disease Control)
[quote]Human papillomavirus (HPV) is the most common sexually transmitted virus in the United States. At least 50% of sexually active people will have genital HPV at some time in their lives.[/quote] Even more shocking was this CDC statistic
[quote]By age 50, at least 4 out of every 5 women will have been infected with HPV at one point in their lives. HPV is also very common in men, and often has no symptoms.
[/quote]
Keep up the good work Brian and David on spreading the warning about HPV.
Charm
My main concern is can I still give this to someone else by just kissing them? Since I'm a guy maybe I also have it in the genital area and don't know? Also, why the hell did we get this and other people who have multiple oral sex partners don't get it. I've talked to several of my military bodies and old college friends and they have all had roughly the same amount of partners and they didn't get it; why did I have to draw the short straw!!!
Sorry just wanted to vent! Would it be safe to say that if and when I meet someone in the future if she gets the vaccine she would be safe?
Charles,
No, it's not a matter of not "getting it" because if we come in contact with it we will "get it" but in most of us our immune system clears it. So we go through life passing it back and forth and our immune systems constantly clears it but the trouble begins when, for reasons not known, our immune system doesn't clear it. Some think the virus can go hide some place and then come out at an opportune time and cause problems and some, like Brian and myself, think it gets cleared and we get reinfected and sometimes it just doesn't get cleared and then it starts trouble.
I have a delicate question, "IF" sometone does have HPV+ 16 would it be recommended NOT to have any future oral sex contact?
We are waiting on results of my husbands HPV connection and I am just thinking to the future..
AND would I be more suspectible to getting cervical cancer if my husband has the HPV 16 strain?
Thanks
First off IF his cancer is positive for HPV 16 then he must have gotten it from someone and his immune system apparently didn't do it's job of clearing it. As for the person he got it from, perhaps theirs did and they no longer have the active virus. I don't know how old you are but chances are GREAT that you have contracted the virus before and your immune system has most likely cleared it. You can be tested for the presence of HPV.
As I have said there are many unknown questions about this virus and I doubt that unless you were to talk to Dr HPV, Maura Gillison, herself that you could get reliable answers.
Yes, David, I agree, there is WAY too little info out there on HPV, given there are epidemic proportions of it at our universities and colleges.
WHEN will the ads become real and state the facts?? The Gardasil ads are so mamby pamby and people don't realize how scary this is.
I'm mad as hell and worry about the future of our childrens' generation with this, let alone am furious knowing this will take my loving husband of 34 yrs from me.
Bonnie
The Gardasil ads and what the company can say is dictated by the cervical cancer clinical trials and the FDA. Neither of the vaccine manufacturers are able to talk about anything but warts and cervical cancer. That does not stop OCF and private individuals that know what they are talking about, from spreading the word about the opportunity that vaccinating our children presents.
Ok, now i'm scared after reading this. I was never tested for HPV - should I and what do i need to do to protect my husband and 2 yr old against it? I've never had the Gardasil, is it now too late to protect myself agains cervical cancer with it (assuming i'm HPV positive)? Gosh so many things to worry about now!!!
Minh
more than 99% of people have an immune system that recognizes it as a threat and clears it. So unless you have some genetic abnormality that messes this nice system up like me, David, and a few others here, you have nothing to be scared of.
Well this is a bummer.. We found out today that my husband is HPV Negative.. We were actually hoping for a positive since we have read that the prognosis is better. Plus he isn't a smoker, so how the heck did he get it?? I know no one knows, but it just would have been nice to get that positive in our minds and go into the treatment with more confidence..
Don't worry. He could still do very well. Just stay positive. There is only one way to think right now- it is that you are going to beat this. Any other line of thinking will drive you up a wall.
JDR - I agree with misskate - you have to get into the fight mode, otherwise it's a crazy-maker. My son is also a non-smoker and doctors said because of his age, it "could" be from HPV but he was never tested. That was 4 years ago and he is doing just fine now.
JDR
I'd ask your doctors what HPV test they did. When I insisted that my CCC do an HPV test on my tumor, (because of what I learned on OCF, they also told me that I was HPV negative.) So I was surprised to get the following email from them this January
[quote]Remember back earlier last year you asked for us to test your tumor for HPV status. Our pathologists at that time did a study using one technique (immunohistochemistry staining), and it was negative. We now use a more sensitive testing technique (called PCR). We reran your tumor using this technique, and it was positive for HPV subtype 16. I thought you would be interested.[/quote]
I had been suffering total bewilderment on how following all the exhortations on exercise, nutrition, meditation, etc. could have failed me so badly. It is good to get an answer.
Remember though that being HPV positive is no guarantee of things going great - as my recurrence proves. So Keep the Faith
Charm
PCR is a good test, but they are old versions of the test that are less accurate. The best test, done at Hopkins and that Gillison does at James, is- in situ hybridization.
I don't talk about it much but some cancer centers, don't even do PCR because of costs. Maura told me that she had come across centers that were dong a brush collection of the cells from the lesion, and then doing a conventional cervical cancer wet prep test for HPV 16. We have no idea if that works on oral tissues or not, and it is the least reliable of any of the tests. Since it doesn't impact treatments today, they are just thinking about costs and not about collecting great data.
Brian
That's is all too true. If it were not for OCF, patients would have no way of knowing that their doctors use different HPV tests, since a reasonable assumption would be that they are like blood tests. Guess I should be glad my CCC didn't use that unproven oral swab method. While it may not impact TX, having a reason or cause for oral cancer is a great comfort to many. Sloppy or inaccurate tests deny us that.
Charm
Are you saying that the tumor cells must be tested, that a blood test for HPV isn't enough?
Do most CCCs keep tumor samples on file? Clark's original surgery was in November 2007. We are very interested in getting his tumor tested.
There is no blood test for HPV.
All biopsy samples must be kept 7 years in most states by law.
I suppose if you were a research laboratory ( not available to the public) you could look for HPV16 antibodies in the blood, but that would only indicate that at some point in your life you had come in contact with it. I take that back, I am not even sure that is possible.
Back in the day when I insisted that my slides be tested there were only a few in the U.S. that had reliable oral HPV testing facilities. Mine were sent to Johns Hopkins where Maura Gillison resided at that time. Alas, it's not much better today.
I haven't had any luck finding information that clearly explains the different HPV tests or for that matter explains why there is a different test for oral HPV than cervical (pap smear digene) HPV testing and if so why!
Charm indicated his first test (at a major CCC) was negative (immunohistochemistry) and a different test (PCR) was positive.
Mine was ambiguous (sensitivity levels??) from a CCC lab just trying to get up to speed on these test having numerous problems (and no primary tumor).
I'm sure over the past couple years that there have been improvements, but apparently there are still various test protocols, few standards, and disagreements on the sensitivity levels (among other things).
Anyway since HPV+ OC is a major issue on this forum it would be nice to get a lot more knowledge about best practices and what we should be asking for and expecting from these test results.
Anita
It can not hurt to contact Clark's doctors to get his tumor tested for HPV. Be persistent. I had to work my way thru the medical team since my ENT surgeon and RO explained they would not have changed past treatment nor even future treatment based on my HPV status so it wasn't "medically necessary". My MO however finally agreed based on my psychological plea (but it would help me sleep better if I knew). Lucky for me, my CCC had changed its protocol and was now doing HPV tests routinely and I would be one more data point so I didn't get charged anything. (Catch 22: most insurance won't pay for individual tests that are not certified "medically necessary" although they pay for mandatory hospital procedures assuming they are necessary)
I did not mean to confuse the issue by mentioning blood tests, that was just an example of a highly standarized test, uniformly administered and evaluated ( at least for cholesterol, WBC, creatine, etc all the things they tested me for weekly during TX).
But I'm glad I did since it gave Brian the opportunity to explain that HPV needs to have the tumor tested and there is no relevant blood test to see if the cancer was HPV.
So call the doctors up and ask to have the tumor tested for HPV with at least PCR or the better one Brian posted: in situ hybridization.
Charm
Thanks, Charm, I am printing this out and will take it with us at our next appointment with the ENT.
Exposure to human papilloma virus (HPV) can be measured by testing the blood (serum) for antibodies.
This was a rather common test a few years ago that many of us involved with research studies may have had.
Don
Your point is correct but as Brian pointed out, exposure to HPV doesn't prove anything about a cancer tumor. Although I used the qualifier "relevant" in my comment about blood tests not telling whether a cancer tumor is HPV or not, it would have been more accurate to use "probative". As I posted in another thread,the CDC stats 4 out of 5 women had HPV by age 50 so their blood tests would show HPV exposure but thank God 80% of women don't get oral cancer. I just wanted to be sure that Anita knew not to let her doctors try to pawn off a meaningless blood test instead of a meaningful HPV test on Clark's tumor. This cancer pretty much destroyed any trust I had about doctors' knowledge about HPV. As always, you keep me honest and accurate. Thanks
Charm
Here is a place where you can get a state of the art pathology report.
http://pathology.jhu.edu/department/services/consults/hpv.cfmI will ask Gilison on MOnday if the Lab at James is taking samples form outside their facility so we can post a second back up. If it is they will be doing insitu hybridization.
I just e mailed Dr Giuliano at Moffitt. She researches HPV and we have traveled many places and spoke in favor of the Gardasil vaccination. Let's see what she tells me.
Here is Dr Giuliano's response to my e mail. Clear as mud to me.
David,
There are sever different polymerase chain reaction (PCR) primers that are used to test for HPV. The ideal assay is dependent on the type of specimen. For example, in our studies of female and males where we obtain freshly collected exfoliated cell samples of the cervix, penile epithelium, or oral gargle we use Roche�s assay � Linear Array, which allows us to simultaneously detect 37 different HPV types. When we are working with tumor specimens we prefer to use the LiPa assay which uses a much smaller PCR primer that gives much higher sensitivity in tumor specimens � this detects 27 HPV types simultaneously. We are using the LiPa assay for our funded lung cancer study. We have another assay which is used to quantify viral load. This assay uses an HPV type specific primer and is also very sensitive. Currently we quantify viral load from specimens that are HPV 6, 11, 16, and 18 positive. None of the above assays are licensed for use in clinical practice.
In the hospital laboratory I understand that p16 is used as an assay as it strongly correlates with HPV status.
Hope this helps and hope to see you soon.
Anna
Anna R. Giuliano, PhD
Chair, Department of Cancer Epidemiology and Genetics
H. Lee Moffitt Cancer Center and Research Institute
Thanks everyone for your positive thought and encouragement! We will stay positive and focused on getting rid of this cancer!!
Hi David,
I am new here. I was reading the about HPV. Is it that contagious? a person get through kissing or drinking from some elses glass. We are a monogamous couple it is actually insane how he got this virus. Can the spouse get it too ?
Roma,
Click on the HPV and read all about it.
Roma
Before you get too freaked out, even if you got an HPV infection it does NOT mean you would get oral cancer. When you read about how easy it is to spread HPV and the connection with oral cancer, you would expect this board to be full of sad sad stories about how our spouses all now have HPV and oral cancer. Yet it simply is not happening.
Personal example: While my tumor tested positive for HPV, my wife's cervical swabs all test negative for HPV. Yet we have been married for 26 years, faithful to each other the entire time and have had a very active sex life (still do). I sometimes worry that new readers will think they have to stop having sex whether they are caretakers or oral cancer patients. Short and sweet answer to your real question;
Oral Cancer is NOT CONTAGIOUS to spouses.
Hope this makes you feel better
charm
Thanks again to all of you. Today we got know the results the lab slides showing my husband is HPV -. Cancer is only because of smoking,the doctor said.
Thank you all for your help and support. Cant thank enough for what i have learned here.
I got genitle warts when I was 13.I was a virgin & believe I got it from using the same towel my mother used after a shower,or the toilet seat.My mother got it from my step-dad.I had them removed.Then when I was 17 I got them again,but this time they went away on their own.In 2003 I noticed a white bumpy lesion at the back of my throat.Had a surgeon look at it ,he said it was "eckasia?"from my sinuses draining.2 days ago I saw an ENT Dr.& was told it could be cancer from the hpv virus.I am terrified!I don't have insurance & am trying to find a Dr.to do the biopsy that I can make payments to.I live in rural eastern Or.with not to many options.I'm having pain in my ear & jaw on the side of the legion,but have also had pain & swelling on the other side for several years which the Drs. said was my muscle swollen from fibromyalgia,insomnia & stress.Am so angry with these Days.I am also in remission from Hepatitis-C.The drugs for that were chemo-like,suppressed my immune system,gave me alot of side-affects,arthritis,gout & I believe triggered this HPV in my throat.I am 54.Any ideas out there?Thank-you,have been crying for 2 days now,funds are limited,don't qualify for any state or govt.help,what to do,what to do???
Were/are you a tobacco user?
HPV normally attacks the cells in the back of the tongue or the tonsils. It also usually shows up in men. I said "usually" so that doesn't mean always. The only way to confirm HPV or not is to first be confirmed as having cancer and then the slides can be further tested for HPV. Forget the HPV right now and focus on finding out if you have cancer.
Anne,
I can relate to your comment about the futility of the blame game...and to try finding out the cause/origination of the virus. However, imagine my shock when our ENT/Surgeon said to me after John's biopsy (he was still in recovery) and HPV+ diagnosis, "Have you had any abnormal pap tests? (No) .. well I don't want to cause any problems in your marriage, but, you know, this is a sexually transmitted virus!"
Not knowing a thing at that point about HPV, I was speechless.
Bonnie
Bonnie,
You could have acquired HPV, passed it on and then cleared it within your body before it was ever detected by a PAP. Much is known about HPV but MUCH more isn't.