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National Cervical Cancer Coalition


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PostPosted: Sat Oct 25, 2008 9:21 am 

Joined: Sat Oct 25, 2008 8:51 am
Posts: 14
Question first -- does anybody have experience with HPV strain typing for men?

I just got diagnosed -- just as I met / started seeing somebody new and really special. Lucky for her, we haven't had any sexual contact yet. I told her day before yesterday, and she has been really supportive and doesn't appear to be going to bolt. She was very understanding because she had an abnormal pap and was initially diagnosed with HPV a couple years back, but it turned out to be a fluke and subsequent testing suggested she was not. So she got the shot and is now vaccinated against 6 and 11 (which account for 90% cases of GW) as well as 16 and 18 (which contribute to 70% of cervical cancer cases).

What she (we, for that matter) want to know is what strain I have. Odds are it is 6 or 11, but I for one want to be sure. My derm (see below for horrible story) has not returned my phone calls about strain typing, and I'm most likely going to a new one for my follow-up screening and treatment.

So, what I'm asking:
1) I have specimens in the lab with which I was diagnosed. They are "dead" -- could they do DNA-typing to identify the strain of virus or will they need a live specimen?

2) If in the best case scenario I don't get any new lesions, could they take a skin biopsy and identify the HPV virus? Or does it have to be a wart?

3) Are there any guys out there who have been successfully "typed" with regard to strain?

4) Am I right about changing derms? Read below

Long story ... long -- sorry:

I'm a 29 y/o straight white male -- educated, professional, moderately successful. I am fastidious about my sexual health -- always use protection, etc. An old partner called me up a couple weeks ago and told me she had an abnormal pap and her gynecologist found warts. So, naturally, I go into panic mode give myself a rigorous examination, a spot on the top of my penis just below the head -- not even what I would call a "bump:" two conjoined freckles 1 mm in diameter each (non-raised) and a speck about a cm away -- that I was 99.9% sure wasn't there a month ago.

I go to my PCP, and he says they don't look like any wart he's ever seen, but I say take them and biopsy them anyway. He does -- taking the two "freckles" and leaving the "speck." They test positive for being venereal warts (sounds lests horrid -- I just can't bear to say GW, even now). So I come back, he cuts the speck off, examines me pretty thoroughly, and finds a spot on the underside, which he cuts off and sends for biopsy. It comes back positive as well, and since this third spot is next to a pattern of Fordyce spots (which I have had since puberty), he referred me to a dermatologist for more screening and treatment.

I'm freaking out at this point, and I go to the derm who can get me in first. I go, and I see a female PA -- and she was HORRIBLE. Not a great understanding of the condition and definitely with an axe to grind about HPV. She scolded me for catching it in the first place, said I would without question infect everybody I am ever with for the rest of my life (I guess that is right from a certain point of view, but I also understand that is a risk that is always present but minimized with the use of protection, absence of lesions, and inacitivity of the virus, etc.), and was generally not very helpful and compassionate. Next, she proceeded to freeze the crap out of just about every possible wart / Fordyce spot / hair follicle on the underside of my penis indiscriminately. Seriously, she's supposed to be an EXPERT; if it's like that I'll just steal the cryocan and do it myself ;-)I'd rather be safe than sorry, but looking at the frostbitten spots I've got with HAIR growing out of them, I dont' get the sense she knows what she's doing. Plus, she couldn't really give me any insight of what to look for myself -- i.e. what is the difference between a lesion, a follicle, and a Fordyce spot -- which is important for me because my "warts" didn't look like "warts" and initially fooled my PCP?

Speaking of which, my PCP was really supportive, but I don't get the sense that this derm/PA doesn't understand the virus and stigmatizes those who suffer for it. Am I being hypersensitive, or do I have a point?


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PostPosted: Sat Oct 25, 2008 9:39 am 

Joined: Sat Oct 25, 2008 8:51 am
Posts: 14
*** Post CONTINUED -- ran out of space above ***

Plus, she couldn't really give me any insight of what to look for myself -- i.e. what is the difference between a lesion, a follicle, and a Fordyce spot -- which is important for me because my "warts" didn't look like "warts" and initially fooled even my PCP who has treated them for years on other patients?

Speaking of which, my PCP was really supportive, but I don't get the sense that this derm/PA doesn't understand the virus and stigmatizes those who suffer for it. Am I being hypersensitive, or do I have a point?


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 Post subject:
PostPosted: Sat Oct 25, 2008 10:27 am 

Joined: Fri Aug 08, 2008 10:55 am
Posts: 281
Wow...sorry you have had such a horrible experience...as I am sure you can tell by now.....HPV is extremely common...so you really should not feel bad about it at all. It's good you are trying to do the best you can to protect the new girl in your life.

There really isn't a strain that is specifically "male"...there are low risk and high risk strains. You can actually do a google search to find the types that are most common for low risk HPV. Yes, there are others beside 16 and 11, but those 2 seem to be the most prevalent strains out there.

I'm not sure about strain typing...I actually have the high risk variety which causes cervical changes and cannot be tested for in men and my doctor did not tell me the strain I have.

Anyways...I'm sure that Roger, Dean or our amazing Mod Fredo will be along shortly to answer your questions.


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 Post subject:
PostPosted: Sat Oct 25, 2008 10:32 am 

Joined: Fri Aug 08, 2008 10:55 am
Posts: 281
You know..there I go fat fingering again.....I should have put 6 and 11....16 is actually one of the high risk strains. :oops:


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 Post subject: Re:
PostPosted: Sat Oct 25, 2008 10:35 am 

Joined: Sat Oct 25, 2008 8:51 am
Posts: 14
callie wrote:
Wow...sorry you have had such a horrible experience...as I am sure you can tell by now.....HPV is extremely common...so you really should not feel bad about it at all. It's good you are trying to do the best you can to protect the new girl in your life.

There really isn't a strain that is specifically "male"...there are low risk and high risk strains. You can actually do a google search to find the types that are most common for low risk HPV. Yes, there are others beside 16 and 11, but those 2 seem to be the most prevalent strains out there.

I'm not sure about strain typing...I actually have the high risk variety which causes cervical changes and cannot be tested for in men and my doctor did not tell me the strain I have.

Anyways...I'm sure that Roger, Dean or our amazing Mod Fredo will be along shortly to answer your questions.


I appreciate you responding. I know there isn't a specific "male" strain -- not what I was asking.

HPV strain diagnosis is a priority for women because it can be a matter of life and death -- high risk or low risk. In all my searching, I have yet to come across any information about typing for men.

I just wanted to have as much information as possible before I see the new derm.

Thank you ...


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 Post subject:
PostPosted: Sat Oct 25, 2008 11:41 am 

Joined: Fri Aug 08, 2008 10:55 am
Posts: 281
Quote:
HPV strain diagnosis is a priority for women because it can be a matter of life and death -- high risk or low risk. In all my searching, I have yet to come across any information about typing for men.


Well...actually, even for women it isn't so much strain typing...as it is determining whether the HPV is inside (typically high risk) or outside (low risk). They don't usually "type" the HPV that is high risk, they simply tell you how far along the cell changes are. That is what I was trying to point out...I don't know if I have type 16, type 53 or any of the other strains of High Risk...what I do know is that my HPV test came back that I have a low grade version of a high risk strain..so my doctor has taken a wait and see approach.

I haven't seen anyone post the actual strain of low grade HPV that they have...most people have simply said that their tests came back with low risk HPV. I'm sure it can be done...I'm just not sure that is common practice.


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 Post subject:
PostPosted: Sat Oct 25, 2008 11:47 pm 

Joined: Sat Jan 19, 2008 6:16 pm
Posts: 370
Hey man just wanted to let you know I can completely relate to your experience. As a male I also found it quite difficult to get useful advice or even a clear diagnoses out of both male and female doctors of all types.

I finally found a few experts and they were confident that at some point the body will build up an immunity to the virus and the wart causing types aren't associated with any adverse health problems.

Yeah you could get sick later in life and perhaps have a recurrence...no way to absolutely guarantee that even though it's not likely. But, at the end of the day all we're talking about here are warts. It's not HIV and it's not cancer.


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 Post subject: Re:
PostPosted: Sun Oct 26, 2008 3:17 am 

Joined: Fri Aug 08, 2008 10:55 am
Posts: 281
greatful wrote:
Hey man just wanted to let you know I can completely relate to your experience. As a male I also found it quite difficult to get useful advice or even a clear diagnoses out of both male and female doctors of all types.

I finally found a few experts and they were confident that at some point the body will build up an immunity to the virus and the wart causing types aren't associated with any adverse health problems.

Yeah you could get sick later in life and perhaps have a recurrence...no way to absolutely guarantee that even though it's not likely. But, at the end of the day all we're talking about here are warts. It's not HIV and it's not cancer.


Hey Greatful....I knew I left one of our regular posters off my list.


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 Post subject:
PostPosted: Sun Oct 26, 2008 2:36 pm 

Joined: Fri Sep 12, 2008 10:46 pm
Posts: 132
From what I know, I think for the low grade types, 6 and 11, you can test for those in men. However, for high grade HPV 16 and 18, the ones that cause dysplasia in women, there isn't testing available for that for men. I'll look around a bit more on this, I don't think I have the scoop on everything for this.


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 Post subject: Re:
PostPosted: Sun Oct 26, 2008 3:13 pm 

Joined: Sat Oct 25, 2008 8:51 am
Posts: 14
AoKanojo wrote:
From what I know, I think for the low grade types, 6 and 11, you can test for those in men. However, for high grade HPV 16 and 18, the ones that cause dysplasia in women, there isn't testing available for that for men. I'll look around a bit more on this, I don't think I have the scoop on everything for this.


Thanks for your response. I've read statements to that end as well.

I think they can test for strains 6 and 11, which account for 90% of visible GW cases, because there are physical manifestations of the virus -- i.e. lesions. I don't think HPV 16 & 18 cause warts but they can cause cervical cancer, etc. in women, so men can carry the virus but not have any idea they are infected.

What I can't figure out is if they can actually test the excised lesion to tell what strain it is. Well, I know they can -- otherwise how else would they know there are differrent strains -- but I don't know if it is something that is done. I'll ask when I'm in next, but it is looking like they just assume it is 6 & 11 if you're a guy and you have visible lesions because the odds are that 9 out of 10 times that will be the case.

I think -- I'm not positive, though --- they could do DNA-testing to identify the strain with a specimen -- i.e. excised wart. I don't know if the specimen would have to be live (i.e. tested immediately after excision) or dead (preserved). Either way, I just don't know if they would go through the trouble.

As I noted above, the girl I've just started dating has had Gardasil, but she only got the shot after an abnormal pap smear, which was then nullified by coloscopy results. It is very probable she is immune; I would just like to know what I've got for certain.


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 Post subject: Re:
PostPosted: Sun Oct 26, 2008 3:21 pm 

Joined: Sat Oct 25, 2008 8:51 am
Posts: 14
greatful wrote:
Hey man just wanted to let you know I can completely relate to your experience. As a male I also found it quite difficult to get useful advice or even a clear diagnoses out of both male and female doctors of all types.

I finally found a few experts and they were confident that at some point the body will build up an immunity to the virus and the wart causing types aren't associated with any adverse health problems.

Yeah you could get sick later in life and perhaps have a recurrence...no way to absolutely guarantee that even though it's not likely. But, at the end of the day all we're talking about here are warts. It's not HIV and it's not cancer.


Thanks for your perspective. What you've summarized corresponds to what I've ready myself and what came from my PCP -- who was a MD versus a PA.

I'm glad I had done my homework and researched the condition thoroughly before seeing the derm. Because the way the PA explained things, I probably would have shot myself. She was right from a certain point of view but left out the most important points of the story -- that though incurable (like any virus from the common cold to chicken pox),your body becomes immune and you can recover and risk of transmission becomes unlikely.

Have definitely decided to go to a new derm and insist I see the doctor not a PA.


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 Post subject:
PostPosted: Sun Oct 26, 2008 8:06 pm 

Joined: Fri Sep 12, 2008 10:46 pm
Posts: 132
Like you have said, HPV is like chickenpox---they get subdued by the body and usually lay dormant unless a major stressor comes along that weakens the body so that it manifests again.

My pathology teacher told my class of a story about a colleague he knew that, actually, had never shown HPV all his life previously and had been married for almost 30 years. However, he had had some significant stress and started to show GW. At first, he was thinking that maybe his wife hadn't been faithful to him, but it was eventually gotten through to him about HPV's ability to resurface (like how chickenpox becomes herpes zoster when you're an adult).

There's several diseases that most people get infected with that your body often will mount a response to: some principle examples are chicken pox, HPV, tuberculosis among others. It's just that HPV seems so bad because it's "sexually transmitted."

However, as the education about this virus improves, people will begin to understand that HPV is so widespread and common and maybe not stigmatize it the way it is now. I keep getting beaten over the head again and again in my medical school classes about HOW COMMON HPV is. I suppose it'll take some time for it to sink in for the rest of the population. Hopefully someday they'll make sure to effectively vaccinate both boys and girls and the prevalence of the disease will diminish.


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PostPosted: Sun Oct 26, 2008 8:28 pm 

Joined: Sat Oct 25, 2008 8:51 am
Posts: 14
Great point about the stress. I've been thinking a lot about that and its relationship to my "outbreak" -- if you can call it that, given how limited it was.

I work in Finance and formerly was a research analyst, so you can imagine what the last few months -- or year for that matter have been like for me. Add to the equation a toxic work environment and petty though exhausting drama with my co-workers and a couple tumultuous relationships, and you get to where I am today.

Luckily, I have transferred internally to a much better position and situation with considerably less stress and pressure and find myself even more highly compensated, which in general makes life easier.

Hopefully that will help my recovery. I'm starting on a vitamin and supplement-based nutritional regimen as well (as I mentioned in another post) to try to boost my immune response. I don't believe in that kind of thing much, but I figure it can't hurt.

I'm just trying to stay positive. I hate to say it, but I've been kind of neutral on life for a long time. This situation certainly doesn't help that much, but I figure to beat this thing -- or at least control it -- I need to focus on the great many things I am lucky to have.


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 Post subject: Re:
PostPosted: Sun Oct 26, 2008 11:11 pm 

Joined: Fri Sep 12, 2008 10:46 pm
Posts: 132
oligarch_ wrote:
I'm just trying to stay positive. I hate to say it, but I've been kind of neutral on life for a long time. This situation certainly doesn't help that much, but I figure to beat this thing -- or at least control it -- I need to focus on the great many things I am lucky to have.


That's a great attitude towards HPV =) Obviously, of course, in the beginning it'll be harder to be positive towards having HPV and things in general; in the beginning I too was in a bit of an incredulous stupor that I had contracted HPV while only having had two boyfriends (currently with #2, from whom I suspect I got HPV from.....he's 7 years my senior and has had his definite share of partners). I was still also in the process of receiving the Gardasil shot and felt a helpless irritation that I got infected while trying to protect myself against this very virus.

My bf kind of scoffed at me and thinks I was silly to get all worked up about it----then again he can't understand how it feels because *HE'S* one of the lucky, COMPLETELY ASYMPTOMATIC carriers. I'm sure he would feel differently if it was he who had genital warts and had to go get them burned off =P

I'm glad you're in a better environment now---to me, I think stress is probably one of the top things that kill your immune system, alongside menses and pregnancy if you're a lady.

Seeing you taking a positive outlook and taking control of your stress, I'm sure you'll beat the virus down =) You may have read it already, but HPV usually gets suppressed by the body within a year or so for typical healthy people, so you don't have long to wait---maybe it'll be even shorter, who knows?


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 Post subject:
PostPosted: Mon Oct 27, 2008 7:28 pm 

Joined: Sat Oct 25, 2008 8:51 am
Posts: 14
More on HPV typing ...

I spoke to the derm today. Actually, that horrible PA.

She said that HPV typing is not typically done for men because of the cost involved. It is not usually covered by insurance and considered overkill. She said you would need a live specimen -- so they couldn't test the tissue they excised -- and it would be a DNA-test.

She also said they could test your blood for it. Both you and I know that is incorrect. HPV is NOT found in the blood; it is in skin cells. If it was so easy to test for, fewer of us would be here in the first place, most likely. I corrected her, and she recanted and agreed with me. Must've missed THAT one on the MCAT, huh. I guess there's a reason she's a PA and not a MD. Wish I had the balls to say THAT to her.

Needless to say, I'm going to a new derm for my follow-up -- preferably somebody that knows as much as I do about this now.


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