Hey, it's super Sunday, so here is a super Question. It's come to my attention that many patients and caregivers are afraid that if they have sex, the caregiver will "catch" the patient's Cancer. It appears to be a conflation of the separate facts that HPV is transmitted sexually and can cause oral cancer into an new ugly Urban Legend.
I have not seen any valid studies showing that our oral cancer is contagious. My wife is cancer free yet we still enjoy the full panoply of sex. I have not read of any documented instances of a patient giving oral cancer to their sexual partner.
The majority of HPV infections are resolved by our immune system without causing oral cancer. Since this is something my doctors never talked about, not even once, I assumed they would have warned my wife and I if there were indeed something to worry about.
With over 7 thousand forum members, if a patient having sex with their caregiver or spouse causes cancer, why haven't we heard even one instance? I submit because while there is plenty to worry about, "catching" oral cancer from your patient is not one of them.
I've been told by a top authority that people do actually think and fear this to the point of marriages breaking up.
So I'm speaking out here.
Charm
We did ask Ken's oncologist about this and she said that if you have had more than 2 partners in your lifetime you have most likely been exposed to HPV and it just depends on how your body deals with it. She said I should continue to get annual pap smears and she said we should give our daughter the vaccination when she is old enough.
80% of women will have been infected by one strain or another of HPV by the time they are 50. Chances are if you are reading this then you have one strain or another. Big Whoop.
When I was asked by the Men's Health writer if my knowledge of HPV has changed my sexual practices my response was "Nope, I try and have sex with my wife as much as possible."
It doesn't matter to me IF I was HPV+ or not. If I was, it wouldn't matter if I gave it to my wife or she gave it to me...lord knows we both have had more then two partners. So say she leaves me over it...statistics are in favor of her getting one form or another from the next person she's with.
It just makes sense that the more you know about HPV, the more you make sure you get checked out regularly, both dental exams and Paps. You can't turn back time and suddenly be celibate or reduce the number of partners you've had. Trust me there's a few I wish I could knock off the list and still blame the tequila for...damn you Cazadores!!
my $.02
Eric
Hee, hee, hee, David. You are so funny. But, if someone does tell you what it is, please tell me
julieann
Charm you posted this just so you can brag about your prowress didnt you. hahahahha.
xMinh
xMinh
It was more of a (Pun alert!) Pubic Service Announcement.
Charm
And that's what you get if you service too much of the public!!! Badump bump,
My sister inlaw is HPV + I think she got it from her first partner - if it has links to oral cancer etc... then technically having sex can cause cancer - in certain people - you can't un get it though so best just to see if you can have your daughters vaccinated! And if you are negative protect yourself!
Cheryl
It's not just the daughters that need the vaccine, the sons do also as it will protect them also from HPV infection.
Charm
So let's have a reality check here. Numbers. 300 million people in the US. 37,000 this year got oral cancers. About 50% of those were caused by HPV16. This virus is one of the most common viruses groups (130 versions - 9 cause cancer and 6 more are suspect of doing so because they are often found with the oncogenic ones, but do not appear to do it alone) out there, it's certainly the most common sexually transferred infection of all according to the CDC. There will be about 3700 deaths from cervical cancer, 8-9k from oral. It also causes anal, and penis cancers, which have really low incidence and death rates. (Not to many people die from penis cancer... they see the problem early and they just lop that puppy off..ouch) So when we speak of risks, we really should add them all up, not just oral. Even if you do that, with this common very ubiquitous virus, 99.9% of the population has an immune system that recognizes it as a threat and in some period of time between 2 months and 14 months clears it from your system. (This is based on the cervical experience not oral, but we suspect it is the same or faster in the mouth as the cells of the oral cavity turn over and are replaced faster there than just about anywhere in the body through apoptosis.) So who has a calculator out there and wants to figure out your odds?
Some of us (me) have immune systems, and a genetic profile I can thank my grandparents for, that does not recognize HPV16 as a threat, and I don't clear it. My wife has a more robust system. But those of us that the virus persists in for protracted periods of time (the real risk), are a small minority of the population. We just finished a study with Gillison and NCI soon to be published, and this virus is going to rapidly increase in incidence of disease in the next 5 years, particularly oral cancers. Big Time. This is a math problem not a sex (change your behavior) problem, and we can do nothing about what is coming down the pike today. The only thing that we can do is see that the vaccine is used on our kids so the next generation deals with a reservoir of the virus that is significantly smaller, and get screened routinely to catch very early stage disease. Yes, the vaccine is for cervical cancer, but the net of it is that it prevents you from getting infected period. Even just considering cervical cancer, men are vectors of the virus to women, so they need to be injected too. Then the incidence of oral cancers will begin to decline and go back to the lifestyle choice etiologies like smoking. Remember there is no such thing as a viracide, so we can't kill it with some outside intervention. It has to be done by our normal immune responses. If we could kill viruses, we could cure the common cold, which is a virus.
So now one of you Google fans.... Please post how many people in the US are hit by lightening, have a catastrophic reaction to peanuts or bee stings, or are bitten by sharks, etc. and things we think are rare. Let's put the HPV issue in a context that we all can relate to. Also find out how many people die in car accidents every year in the US, or perhaps just in California. When someone does, let's see what those odds are and look at things with a balanced eye. Don't forget Charm's favorite thing to say which is - if it happens to you the chances were 100%..... 300 million people - let's do the math.
Good solid info there Brian. Thanks. Since, some years back, I discovered that I'd actually forgotten how to do long division I'll leave the mathematics to those adept at it.
I would hate to see the fear of an admittedly frightening though extremely low-incidence and furthermore now pretty much preventable cancer added to the shrill drumbeat of anti-sex hysteria promulgated by certain elements in American society.
D2
Grin - I agree with the vaccinations totally - I am also totally aware that the stats make it a minuscule number of incindences - and there are always other contributing factors - mostly I was just being facetious!
So have oral sex or drive your car? (Well it's not that simple a choice for some of us, but I wanted to make the point of what is risky and what isn't)
Every 13 minutes someone dies in a car accident in the US.
Here's another one I use in lectures... 3.3 million Americans are allergic to nuts, and even more � 6.9 million � are allergic to seafood. Some of those people go into anaphylactic shock and die. Put some more prawns on the barby will ya mate...
Good on ya for learning a new language Brian
With around 22 million here I would also would have to get the calculator out but will not bother.
Seems simple to me that vaccinations are the way to go.
G'day all!
Charm, just be careful of what type of sex maybe???
Jim here's a news story from the OCF web/news site about contagious cancers that ran in the Boston Globe.
http://oralcancernews.org/wp/contagious-cancers/
I am going to jump in with a question. I have been studying health in my Mini Schnauzers, wait there is a related people question, since they tend to have more of a problem with vaccinations than many breeds. There is an entire plethora of new diseases including vaccinosis and a number of autoimmune diseases being caused by vaccinations and not is just Mini's. I realize that we aren't vaccinated annually, but if you research the subject a vaccinnation effectively sends your immune system into overdrive. I used to be first in line for Flu Vaccinations but now I am very hesitant. If my immune system is off busy dealing with a vaccination am I risking it missing a new MEC cell. I doubt it works that way but............. I just cringe when I see the TV ads to vaccinate your daughter. Autoimmune disease can be a disaster in both us and our Pets.
I can hardly speak to people who give their beloved pets a full blast of every vaccine every year just because the Vet says so.
Seda
Please don't go Jenny McCarthy on us. I have an answer that you won't like. The vaccine overload/ overdrive theory you mention is complete and total nonsense. It's a disservice to OCF members to suggest that getting a flu shot may cause a recurrence. I'm aware of the natural dog food gurus peddling vaccinois as a way to discredit veterinarians who debunk their products but thank god for mandatory rabies vaccine laws. But Brian has been very good in debunking the naturopathic and homeopathic falsehoods one of which is vaccinosis. I'm disappointed to see you raising them here.
For those who don't keep up with psuedoscience and fake medicine, here's a quick summary of the Vaccine overload theory spelled out in Wikipedia
[quote]Vaccine overload is the notion that giving many vaccines at once may overwhelm or weaken a child's immune system and lead to adverse effects.[44] Although the scientific evidence does not support and even contradicts this idea,[43] many parents of autistic children firmly believe that vaccine overload causes autism,[45] and it has caused many parents to delay or avoid immunizing their children.[44] Such parental misperceptions are major obstacles towards immunization of children.[46]
The idea of vaccine overload is flawed, for several reasons.[43] First, vaccines do not overwhelm the immune system; in fact, conservative estimates predict that the immune system can respond to thousands of viruses simultaneously.[43] Moreover, despite the increase in the number of vaccines over recent decades, improvements in vaccine design have reduced the immunologic load from vaccines, such that the number of immunological components in the fourteen vaccines administered to U.S. children in 2009 is less than 10% of what it was in the seven vaccines given in 1980.[43] Furthermore, vaccines constitute only a tiny fraction of the pathogens naturally encountered by a child in a typical year[43] and common childhood conditions such as fevers and middle ear infections pose a much greater challenge to the immune system than vaccines do.[47] Second, studies have shown that vaccinations, and even multiple concurrent vaccinations, do not weaken the immune system[43] or compromise overall immunity.[48] Finally, there is no evidence of an immune-system role in autism.[43] The lack of evidence supporting the vaccine overload hypothesis, combined with these findings directly contradicting it, have led to the conclusion that currently recommended vaccine programs do not "overload" or weaken the immune system.[1][49][50][/quote]
For a Wikipedia article, it's surprisingly good. It was better than Quackwatch's or the NCI
Here is the link to the complete article
Vaccine "controversy" I know we all worry about cancer coming back but skipping a flu shot is not going to protect you.
Charm
Now back on topic
With all of the stories on HPV and oral sex causing cancer, here is some important information from. Dr. William Lydiatt, division chief for head and neck surgical oncology at the University of Nebraska Medical Center.
[quote]
Lydiatt said it may take some 20 years for HPV in the tonsil or tongue to turn into cancer. He said that even though the numbers are going up considerably, the odds of getting the cancer remain extremely slim.
Those odds increase, however, if a person has many sex partners. Abstinence obviously is the most reliable way to avoid transmission of the virus, Lydiatt said. Monogamy also provides considerable protection, he said.[/quote]
Here is the news article I excerpted that from
HPV cancer Charm
@Charm
Interesting article.
I had wondered why the guys seemed to show up with HPV+ OC more than than gals. Dr. Lydiatt indicates a 3X transmission ratio, but it seems on this forum to be much higher.
I had also wondered about the impact of HPV+ OC on the gay community since little or nothing seems to be written about an epidemic among gay men.
Is HPV+ OC transmission predominately due to heterosexual oral sex (female to male), but HPV+ genital transmission isn't?
Don
I took the article to answer your first question with a resounding No. The way I read it implied that it was males giving females oral sex that causes OC via HPV and not females giving males oral sex especially considering the physical method described. The reference to AIDS scare I took to be when the hetero population learned the Michael Jordan defense: too many women. I put those extracts below with bolded emphasis.
[quote]The virus can be contracted through oral sex when it is lodged in a woman's vagina. The virus then becomes trapped in the soft tissue and tiny pockets of the tonsils and base of tongue, where it gradually can cause cancer.
Men are far more likely to contract HPV-caused tonsil and base-of-tongue cancer. The Centers for Disease Control and Prevention said a study from 1998 to 2003 found men were more than three times as likely to acquire them.
Lydiatt said DNA testing of tonsil and base-of-tongue cancers now reveals the presence of the virus in the majority of those cases. The virus appeared in less than one-quarter of those cases 30 years ago, he said.
Lydiatt said the sexual revolution of the 1960s and the AIDS crisis beginning in the 1980s led to more oral sex, which is mistakenly viewed as safe sex. He said the virus also can probably be transmitted through French kissing.
Dr. Robert Haddad, a head and neck cancer specialist at the Dana-Farber Cancer Institute in Boston, said the link between the virus and cancers of the tonsil and base of tongue is clear.
�We know that the incidence is rising significantly,� Haddad said. He attributed it to sexual behaviors such as oral sex and people having multiple sex partners.
[/quote]
Charm
Charm,
Thanks for this very informative post.
Brian,
In the Globe you said that both you and your wife get tested regularly to see if HPV has returned (or do you mean active). What is the test and how will your behaviors as a couple be affected if the results are positive? Would one have to abstain from sex with their spouse until the next test was negative? I apologize if I am invading your privacy. I don't mean to. I only ask because this topic is thought-provoking and of concern to me.
I understood that the reason younger people (high school) chose oral sex over traditional sex was to avoid pregnancy. Anyway, there is an overwhelming need to educate everyone about OC. Let's keep the candle burning.
Anita
First, Haddad and the other doctor are not virologists, nor experts on HPV. We don't even know the entire life history of the HPV16 virus, so it is pure speculation that you could have a long latency period, or that the virus goes dormant. The absolute truth TODAY is that is speculation and there is no proof that it does or does not behave that way. It is just as likely that since the virus is so common, that you get infected and repeatedly clear it, having periods of activity, and non activity in testing as a result. There are viruses that behave both ways, and what this particular HPV does no one knows. Another misconception is that all people who have been exposed to it will develop a serum antibody that matches it, and that, while it does happen often, is far from an absolute. I have said it many times before here, that we only have been able to culture HPV16 outside a host in the last two years. That should give you an idea how far behind the 8 ball we are on understanding this thing. If you can't examine it and test it in a laboratory environment, learning everything about it can be difficult, and without that ability you have numerous cofounders that make what you find out far from absolute.
I had to laugh at that description of the virus lodging in the folds of the vaginal walls or tonsillar crypt though, that is a sophomoric description of an incredibly complex and elegant organism's behavior. Do they get how small a virus is? Trapped in the folds of tissue? Really? These little guys penetrate cell walls, they don't have to hide in crevices...
Since 30 years ago we were not aware that the HPV16 virus was anything of consequence, we don't have many oral tissue samples (in any significant numbers) that would allow anyone to have a percentage of growth from current peer reviewed published data..... that would only be available in the cervical world, then extrapolated into what is likely to be happening in oral. There is a retrospective study about to be published, and it also has a projection for the next 5-10 years by Gillison et. al. funded partially by OCF, and the future is really staggering bad looking. Yes, it has been ramping up, for some period of time and that is accelerating, it is hardly remaining at 3% per year.
Testing for Ingrid and I is cervical in her, and oral in me. The testing I have done is not available to the public, and is not fun. I don't do it to "watch out" for anything, but for scientific purposes that benefit someone else's knowledge. As to invading my privacy, I have none by design. I have been the poster boy for HPV+ oral cancer on TV and in articles for years. Ingrid used to cringe when I talked about our sex life in public venues, but not anymore, and if people like me are not willing to discuss things openly, then it is hard to advocate for the disease. I wouldn't have chosen to do all this, it chose me. For the record, I have not changed my sexual behavior with my wife in the last 12 years since my OC. It is clear from the many tests that Ingrid's immune system defends well against the virus. Obviously mine does not do a very robust job of things.
I do not think there is a proven scientific reason for the propensity in the numbers for males to get HPV+ oral cancers in far greater numbers than women. I would make a layman's guess that just as men men go south on women as vice versa. Speculation would be that this is a virus that has been infecting women for years, (high reservoir of virally infected females, since it can take a year+ to clear the infection) that environment attracts it (Squamous cells everywhere) and men's penis on the exterior has less of a propensity to harbor the virus. It lives in the urethra which is significantly smaller but lined with squamous cells.
Brian
OOPs, look like I linked to the Glenn Beck of HPV - sorry.
Out of all the points you make, IMO the fact that you have continued the same love life pre and post cancer is the take away message. Not being cavalier, but unless OCF somehow attracts only robust immune caregivers, I'd expect to see more responses on this thread about - be careful, my spouse had OC and now I have it too.
Seems like an unvoiced fear on some of the threads, one which I think unfounded. Which admittedly is (as you note) pure (impure?)speculation on my part
Charm
After watching many patients on their paths, after reading voraciously every research article that the disease generates for a decade, I have learned that we do not know enough about oral cancers that come from HPV to speak with ABSOLUTE certainty about it. What we do not know is staggering, given how long this virus has been known.
I try to speak factually, and keep my opinions to myself, as the two (and my gut beliefs) do not aways coincide with each other. My opinions are also colored by conversations with experts like Maura who has many clinical impressions from her treatment and research experience. The woman has epiphanies about this that spin off into her research efforts, which so far have been dead on. I am colored by her insights and best guesses, which are just that- guesses, even if educated.
That a patient could pass a virus to another person or mate, who would also have an immune system that did not recognize it as a threat is certainly possible, but the mathematical odds are low, but certainly not zero.
For all those that read my opinions, Please - read them carefully, I try to state what is fact, and if something is my opinion I try to say that also. I can't count the number of times in my life that I have been wrong. I do my best not to spread innuendo, cause fear, or even create unrealistic hope. We learn something new about the oral cancer and HPV situation literally every week. When I know it, I will pass the relevant things on, often in the news section of the web site first.
To add another perspective to this not every woman, who tests positive for HPV will develop cancer and that might translate to OC as well and for all of the reasons that Brian stated in his exceptional posts. It is certainly a very good question however, and being one of those that probably had an HPV induced OC, I do wonder about my wife's risk factor (although since I was simultaneously Dx'd with HCV, HPV is the least of my worries). My doctors can't give me any answers for any of these questions (and believe me, I've asked).
Hi Don
I am going to place my spin on the prevalence of male dominated HPV+ cancer on this forum vs the rest of the country/world. It strikes me that we have more than our fair share of young and non-smoking survivors too and I have put it down to the fact this forum is web-based, therefore attracting a younger crowd less likely to be the stereotypical smoking, drinking oral cancer victim. I hadn't noticed this preponderance of male HPV+ve survivors but will pay attention from now on.
I have also noticed nearly all carers are women - which means their carees are often men (not all the time). Surely there are male carers out there but for some reason this forum doesn't appeal to them (silly buggers).
Re the gay community comment/question: Yes there is an epidemic of HPV+ cancers in gay men. Part of the push for free vaccinations for boys comes from the gay community who are surviving HIV only to be struck down with anal cancer. Anal transmission is not uncommon amongst the gay community and likely overshadows the oral cancer transmission as the most stigmatised of the two.
There is a lot written about this in Australia (although rarely in the mainstream press), maybe because we have an epidemiologist who has taken to riding this as his new high horse.
Well it's a chicken and the egg thing. Obviously women don't infect themselves and now the pap smear, in the US includes an HPV panel. IMHO men or women can be a carrier.
Viruses such as HCV and HPV are in the frontier of modern medicine, I would bet there there are many epedemiologists who find this a subject of great interest.
We have known for years that men are vectors for the virus and now Anna Giuliano's study proves that we actually carry it longer and don't develop immunities to it as well as our female counterparts.
Bottom line is to tell everyone you know that is presexually active or sexually active in a non monogamous relationship to get the vaccine and IMO you are never to old to get the vaccine. Anna told me the last time we traveled together to speak that she would even recommend it for me if I were single.
David, that's interesting. As a single man who one day hopes to be in a relationship again, I'm reading it with interest. I take it Anna is an oncologist. I'll ask mine about it when I see her in a few months. Thanks.
d2
Anna is a PhD and is a professor at Moffitt and Chair of the Dept of Cancer Epidemiology. I have had the privileged of speaking along side of her numerous times and therefore have had the opportunity to seek her advice on OC matters.
I need to add that Brian, whom I respect as much if not more than any of my cancer contacts, does not agree with this "theory" so as always consult your own knowledgeable expert before listening to me.