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National Cervical Cancer Coalition


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PostPosted: Mon Dec 07, 2009 7:50 pm 

Joined: Fri Dec 04, 2009 10:22 pm
Posts: 9
I am starting this topic in the hope that men like myself who know that they have been exposed to high risk genital HPV, but are having a very difficult time finding a doctor to test them, can work together and share information in order to find doctors who conduct such testing on men.

First and foremost, if anyone reading this post knows of any doctors who will test men for high risk genital HPV, or thinks that he/she might know of such a doctor, please share that information.

Second, several important points need to be made about testing men for high risk genital HPV.

(1) Men can be tested with reasonable accuracy for high risk genital HPV. Viable samples for high risk HPV testing can be obtained from men. See the following journal article: http://www.journals.uchicago.edu/doi/pdf/10.1086/381395

Also at least one sperm bank in the U.S. currently tests sperm for HPV. See the following link: http://www.fairfaxcryobank.com/hpv.shtml It should be noted that having your sperm tested could not give you much confidence that you are HPV negative, because the HPV may not have shed into the sperm. See the link at (1) above for the most appropriate methods for gaining samples from men.

Men are also being tested in research studies that are designed to track HPV infection in men. It is important to underscore that these studies are not designed to assess the ability to test men for high risk HPV. Rather the scientists involved appear confident that men can be tested, and are using the tests to track infection. See the following link: http://www.moffitt.org/Site.aspx?spid=F ... D9CF599528

(2) The cumulative risk of HPV-related cancer in men is significant, when HPV-induced oral cancer, penile cancer, and anal cancer are considered. In addition, these cancers are harder to screen for than cervical cancer, effectively making them more dangerous. See the following article, which quotes Dr. Gillison, who is the leading expert on HPV-induced oral cancer: http://jhu.edu/~gazette/2009/20jan09/20needed.html

(3) Doctors can legally test men for high risk genital HPV. While there are no "FDA approved" tests for high risk HPV in men, this simply means that the companies that have patented the tests marketed to women cannot market these same tests to men. However doctors may still choose to test men using these and/or other HPV tests. For example, there is currently no "FDA approved" test for high risk anal HPV infections, yet some doctors and labs test men for high risk anal HPV infections. Here is the link to a U.S. lab that tests men for high risk anal HPV: http://www.specialtylabs.com/clients/ou ... 0&keyword=

(4) Money, ignorance, and poorly-reasoned cost-benefit analysis are the primary reasons that it is difficult for men to find testing for high risk genital HPV infections. Most doctors have only a passing familiarity with HPV. There certainly could be an FDA approved test for high risk HPV in men. However the companies who develop such tests have concluded that it is not worth their time to bring such a test to market, since most doctors seem complacent in not testing men, despite the fact that not testing men: (1) leads to more instances of both cervical cancer and oral cancer in women; (2) is harmful in that by knowing what specific strain a man has he can inform women (and now men) who have been vaccinated for HPV about whether they have been vaccinated against strain(s) that he has been infected with; and (3) is harmful in that by knowing whether he has been exposed to certain high risk strains of HPV, a man can make better informed medical decisions regarding being screened for cancer related to HPV, and oral cancer in particular.

I hope I have provided some useful information. Please, let's share information so we can locate doctors who will test men for high risk genital HPV.


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 Post subject:
PostPosted: Tue Dec 08, 2009 2:05 pm 
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Thanks for this well-researched post. I welcome your perspective. I am not as strongly in favor of HPV testing for men as you seem to be, but there’s nothing wrong with differing opinions and I appreciate that you shared yours. Please feel free to respond to any of my points.

(1) Men can be tested with reasonable accuracy for high risk genital HPV. Viable samples for high risk HPV testing can be obtained from men. See the following journal article: http://www.journals.uchicago.edu/doi/pdf/10.1086/381395

Nothing new here as this has been the case for years; note that Beth’s article that’s cited is about five years old. That particular study – while certainly outlining scenarios in which it might be helpful - was less about making the case for the utility of HPV testing and focused more on comparing a novel approach to specimen collection with more conventional means of exfoliating anogenital skin.

Also at least one sperm bank in the U.S. currently tests sperm for HPV. See the following link: http://www.fairfaxcryobank.com/hpv.shtml It should be noted that having your sperm tested could not give you much confidence that you are HPV negative, because the HPV may not have shed into the sperm. See the link at (1) above for the most appropriate methods for gaining samples from men.

There is no reason to do this as a general screening for men.

Men are also being tested in research studies that are designed to track HPV infection in men. It is important to underscore that these studies are not designed to assess the ability to test men for high risk HPV. Rather the scientists involved appear confident that men can be tested, and are using the tests to track infection. See the following link: http://www.moffitt.org/Site.aspx?spid=F ... D9CF599528

(2) The cumulative risk of HPV-related cancer in men is significant, when HPV-induced oral cancer, penile cancer, and anal cancer are considered.

In addition, these cancers are harder to screen for than cervical cancer, effectively making them more dangerous. See the following article, which quotes Dr. Gillison, who is the leading expert on HPV-induced oral cancer: http://jhu.edu/~gazette/2009/20jan09/20needed.html

I would soften this a bit. I agree that HPV and related diseases should not be regarded lightly, and we know the outcomes can be devastating. Fortunately, such outcomes aren’t the norm with HPV. It’s true that even among women, for example, the vast majority of those who have cervical infection with oncogenic types will clear both the virus and associated diseases naturally. The incidence of HPV-related diseases detected in men is even lower. Penile and anal cancers are rare. Head and neck cancers, of which HPV-related oropharyngeal diseases are a subset, are uncommon and most are not related to HPV. Among those in which HPV DNA is detected, some research suggests the outcomes tend to actually be better than non-HPV related diseases.

Not to minimize HPV at all – if anyone here felt that way, we wouldn’t be doing this work!! The idea is just to keep it in perspective.

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Last edited by Fredo on Tue Dec 08, 2009 2:09 pm, edited 1 time in total.

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 Post subject:
PostPosted: Tue Dec 08, 2009 2:06 pm 
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Joined: Wed Oct 04, 2006 4:08 pm
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Location: North Carolina
Fredo continued

(3) Doctors can legally test men for high risk genital HPV. While there are no "FDA approved" tests for high risk HPV in men, this simply means that the companies that have patented the tests marketed to women cannot market these same tests to men. However doctors may still choose to test men using these and/or other HPV tests. For example, there is currently no "FDA approved" test for high risk anal HPV infections, yet some doctors and labs test men for high risk anal HPV infections. Here is the link to a U.S. lab that tests men for high risk anal HPV: http://www.specialtylabs.com/clients/ou ... 0&keyword=

(4) Money, ignorance, and poorly-reasoned cost-benefit analysis are the primary reasons that it is difficult for men to find testing for high risk genital HPV infections. Most doctors have only a passing familiarity with HPV. There certainly could be an FDA approved test for high risk HPV in men. However the companies who develop such tests have concluded that it is not worth their time to bring such a test to market, since most doctors seem complacent in not testing men, despite the fact that not testing men: (1) leads to more instances of both cervical cancer and oral cancer in women; This is not known (2) is harmful in that by knowing what specific strain a man has he can inform women (and now men) who have been vaccinated for HPV about whether they have been vaccinated against strain(s) that he has been infected with; and (3) is harmful in that by knowing whether he has been exposed to certain high risk strains of HPV, a man can make better informed medical decisions regarding being screened for cancer related to HPV, and oral cancer in particular. Scant screening protocols are currently in place for oral and anal cancer. Anal Paps are controversial, for example. Just saying it isn’t cut and dried yet how this might play out.

I hope I have provided some useful information. Please, let's share information so we can locate doctors who will test men for high risk genital HPV. OK by me!

I don’t think we know for sure what benefit HPV testing for men will have, or what the best use of these tests might be. I don’t know if women who are contemplating a relationship with a man who is positive for HPV-16 will be urged to do anything differently – she should be going for cervical cancer screening anyway, but perhaps she’d be seen more often, or HPV testing for her would become a greater priority.

However, I understand the desire for one to know their HPV status. I'll comment more on this later, but this is an excellent discussion and I hope the user who originated this thread (and others) will continue to weigh in.


Fredo

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 Post subject:
PostPosted: Tue Dec 08, 2009 7:59 pm 

Joined: Sat Oct 24, 2009 11:41 am
Posts: 6
You're awesome Fredo, just reading your responses helps. Thank you.

:D


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 Post subject: Couple Points
PostPosted: Fri Dec 11, 2009 9:26 pm 

Joined: Fri Dec 04, 2009 10:22 pm
Posts: 9
Fredo,

I appreciate your response. There is one main point I would like to make. I think that men who know that they have been exposed to high risk HPV and are interested in being tested should have the right to be tested. As I believe Fredo acknowledges, men can be tested for high risk genital HPV. The question thus becomes: if a minimaly invasive test is available to men who are interested in knowing whether they have an infection that has potentially serious health consequences and these same men are willing to pay for the test with their own money, should they be effectively barred from having the test? While different people may have different reactions to dealing with the risks and concerns associated with potential infection with high risk HPV, there is no principled argument that men should not have the right to be tested. High risk HPV does carry potentially serious health consequences for men. In addition to penile and anal cancer, HPV also causes oral cancer. If fact, Dr. Gillison's research suggests that in coming years approximately one-half of all oral cancers will be caused by high risk HPV. Knowing whether you have a high risk HPV infection, and what type of infection, has at least some value as medical information. Men who know that they have contracted high risk HPV may decide to insist that their dentist conduct a thorough oral cancer screening and may decide to go to "check ups" more regularly and have their doctor do a thorough visual inpection of the areas in the mouth where HPV-induced cancer is most likely to arise (it typically manifests in specific areas in the mouth). In addition to the health risks associated with high risk HPV, if a man knows that he is infected with a particular strain, that information is pertinent to potential sexual partners as they may or may not have been vaccinated against that strain. There are adverse social consequences as well to not knowing whether you are infected, but knowing that you have been exposed.

While perspective is important when it comes to medical issues, it should not trump the right of an adult to choose to be tested for something like high risk HPV. Unfortunately the effort to decrease anxiety amongst those who have been exposed to HPV has apparently had the unintended consequence of making it extremely difficult for men to find doctors who will test them. It has been said that a right without a means for enforcing the right is meaningless. Yes, men technically have the right to be tested for high risk HPV. But when you cannot find a doctor who will perform the test on you, that right is rendered effectively meaningless.


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 Post subject:
PostPosted: Fri Dec 18, 2009 2:42 pm 
Site Admin

Joined: Wed Oct 04, 2006 4:08 pm
Posts: 2122
Location: North Carolina
Hi again HPV123,

I don't know of a listing of clinics or health care providers that are known to provide HPV tests for men. You might actually have a better chance finding that as part of a clinical trial or research study. If you're of a mind to do so, check out clinicaltrials.gov and centerwatch.com to search for studies on HPV and men.

I think part of the reason more clinics don't do "off label" HPV testing is because they don't have any response or action in mind for when the tests are positive.

Take care and post again anytime.

Fredo

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PostPosted: Wed Dec 23, 2009 6:40 pm 

Joined: Fri Dec 04, 2009 10:22 pm
Posts: 9
Fredo,

Thanks for your response. I think I have found a clinic in Asia that will test me. Evidentially they test urine for HPV DNA using PCR. I have done only a little digging so far, and plan to do more, but it appears that at least with regard to women testing urine is approximately as accurate as testing skin scrapings. I have some follow up questions for the clinic as I got only a brief response from the clinic, but I will keep the board updated. I still am hoping to find a doctor in the U.S. to test me. It seems insane that I would have to travel halfway around the world to have a test that can be performed here in the U.S. I think that doctors who take the "what's the point" attitude about testing men for HPV are considerably off base. Putting aside the issue of whether doctors should effectively preclude an adult from having minimally invasive STD testing done, there are several reasons why it is important to know your HPV status and, if you are positive for HPV, the specific HPV type that you have. I've mentioned them before, so I won't rehash them all now, but one among many is that if you know you have a specific type that can be vaccinated against and you disclose that to a potential sexual partner who has not been vaccinated, your potential partner may decide to be vaccinated before intercourse. While everyone should be vaccinated, the fact of the matter is that not everyone will be vaccinated as a matter of course. Moreoever, the vaccine does not protect against all high risk HPV types. Further, different HPV types seem to be associated with different levels of risk. I think it is also worth highlighting that the medical establishment has generally taken an irrational approach to testing women for HPV. Although the approach may be beginning to change, the consensus seems to remain that women under 30 need not be routinely tested for HPV. The rationale is that HPV is common, which frankly seems to undermine the argument against testing women under 30. Because women under 30 are not routinely tested, they unwittingly pass HPV, including high risk strains, to men. Since the medical establishment considers it unimportant to test men, men then unwittingly pass HPV, including high risk HPV, to women. And so the cycle continues and more and more people are unknowingly infected.


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