Must Read Book on HPV and Abnormal Pap Smears

• By jamiegirl
• Posted October 2, 2009 at 10:20 pm
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Isn't he the guy who works through UCSF? They seem to be at the forefront of things that are hpv related...

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• By corellin
• Posted October 3, 2009 at 2:39 am
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Yes -- he is the guy that works at UCSF. He's very highly regarded (was one of the presenters at the International Papillomavirus conference), and it's an excellent book. I highly recommend it also.

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• By jamiegirl
• Posted October 3, 2009 at 9:14 am
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Wouldn't it be great if he read this blog and responded to some of our questions and fears??!!

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• By flowershoplady
• Posted October 3, 2009 at 11:21 am
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corellin, i know you often recommend this book, and it's great that you've met him as well. i don't know when the book was written/published, but with new research coming out all the time, does he plan to do revisions or updates or.....? just wondering how a book like this stays current.

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• By corellin
• Posted October 3, 2009 at 11:35 am
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The book was written in 2002 or 2003 and so it doesn't include information on the vaccine. I would say everything in the book (that I recall) still matches current information except for his comments on oral sex, which he feels is completely safe, even in the face of an active HPV infection.

I did ask him personally in May, 2009 whether he would revise that (oral sex) section given current research on the connection between oral cancer and oral HPV and he said that he still thinks oral sex is safe. He works with a very high risk population (MSM and often HIV+) and has seen rare (or no?) (I can't remember) cases of oral cancer. He just thinks it's rare, rare, rare and nothing to be worried about. Well... I still think the jury's out on that one, but even the UW medicine doctor who specializes in HPV and did tests with Velscope thinks oral sex is safe (although I didn't ask him about oral sex with an active HPV infection). So.... I really don't know what to think about that. It's not something I'm going to worry about (oral sex), but I really don't think I'd have oral sex with a partner who i knew had an active HPV16 infection (or maybe even 18), regardless of anyone's recommendation. But...that's not based on data -- just my own personal level of risk tolerance.

Also, in the part where he talks about condom usage, he recommends couples use condoms until 3 months after all lesions have cleared. He says that, in his view, this is "common sense" but that there are no studies. Actually, since then Bleeker did a few studies on condom usage that showed people who used condoms for about 6 months when both partners shared the same HPV type had higher rates of lesion clearance. But... that's just a very small study from one researcher...

Other than that, I didn't notice anything that might be considered outdated, because the book mostly covers very basic information -- the basic science of HPV. And I don't think the views on that have changed very much.

Great question!

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• By flowershoplady
• Posted October 3, 2009 at 11:45 am
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thanks, corellin! how great that the info in the book is still so accurate.

and, how unusual that these researchers think oral sex is safe....do they say the same thing about anal sex? i'm wondering if because these are cancers that are more unlikely, statistically, if that's why they downplay the risks. im guessing that the researcher at john hopkins who does all the research on hpv related oral cancers would have a different perspective.

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• By corellin
• Posted October 3, 2009 at 11:55 am
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Well, flowershoplady -- you'd think so, but I spoke with a member of Gillison's research team and she wasn't for oral testing for HPV and seemed to downplay the risk also.

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• By flowershoplady
• Posted October 3, 2009 at 12:21 pm
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ok....so i'm confused....what did gillison's team think was the method of transmission of hpv to the mouth causing the hpv related oral cancers if not oral sex? did they have any thoughts about transmission prevention or earlier detection? maybe i shouldn't be surprised about the transmission prevention part.....none of the powers that be seem to see this to be as important as some of us do! are they relying more upon vaccination as the prevention? thanks in advance for sharing, corellin!

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• By corellin
• Posted October 3, 2009 at 3:20 pm
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Yes, flowershoplady -- they did think the route of transmission was oral sex, but just that so very often people had oral HPV infections that didn't lead to anything, so nothing to worry about (same as vaginal HPV infections).

Whereas the cervix people focus on length of time of persistence with HPV and level of lesion (such as CIN1, 2 or 3), the oral people don't seem to be there yet, in that they don't have the concept of testing for persistent oral HPV infection and the oral medicine doctor I went to who had done the studies on Velscope didn't seem to think even HPV-related dysplasia was worth getting too excited about.

With cervical HPV, the clinical determination is to treat CIN2 or CIN3, and about 1/2 of CIN1 is treated. If you think that in that New Zealand study (that was unethical), about 50% of persistent CIN3 left untreated over a period of up to 30 years advanced to cervical or vaginal cancer. That means 50% of CIN3 didn't progress to cancer over a lifetime and CIN2 and CIN1 have even less chance of progression to cancer. I would guess about 75%(or maybe at least 75%) of lesions that are treated would never have progressed to cancer -- well, I'm not a mathematician, but someone could probably figure that out. So the oral people are reluctant to start down that path as are the anal people when those lesions might have even less risk of progression than the cervical lesions. Does that make sense?

There often doesn't seem to be a correlation between the HPV types people have genitally and those they have orally, which also confuses the issue a little -- meaning that perhaps the same types of viruses that are considered "high risk" for cervical cancer aren't the same types that cause a problem in the oral cavity.

But... we know HPV16 is the main one that causes a problem just about everywhere, so I still think a person with that type (or who has had that type, but it's no longer active) just needs to be a little extra vigilant (thought not panicked or over-worried).

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• By dazednconfused
• Posted October 3, 2009 at 3:34 pm
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Interesting thread - Corellin, you are so helpful, as always!
What popped out at me immediately was the mention of this author being someone who's 'usual' patient base is the msm population.
In my short but unpleasant history with HPV, I have on one hand, my ob/gyn, who does paps but NOT HPV testing routinely. I also now have a gastroenterologist (recommended by several on this website) who definitely sees the value of regular anal HPV testing. Once again, this is a Dr. whose usual patient base is msm. To him, anal paps for men (and also for women with dysplasia and/or HPV infections) are as routine and necessary as cervical paps for women, and he seems to take HPV much more seriously than my gyn, whose reasoning is that either way, the treatment is the same. I like feeling that I am covered, and I feel I can worry less (at least a tiny bit less) if my doctor(s) are doing all the screening necessary, and taking this seriously, and not making me feel like a hypochondriac.

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• By corellin
• Posted October 3, 2009 at 3:45 pm
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yes - dazednconfused -- I completely agree with you. I have yet to find a competent anal doctor, and I went to three oral doctors before I found one I trusted, whose screening put my mind at ease. But once I found a doctor I trusted, who I knew could give me a thorough screen and knew what he was looking for, I felt much less worried -- like I'd done all I could do, so there was no point in worrying.

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• By pkfoxx
• Posted October 3, 2009 at 4:27 pm
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What is msm?

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• By jamiegirl
• Posted October 3, 2009 at 5:18 pm
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men who have sex with men ie. gay men

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• By DebWill02
• Posted October 3, 2009 at 7:24 pm
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Thanks for the info! Ordered a copy a few minutes ago. Any suggestions for a good reference for HPV vaccinations? My oncologist thinks it would be a good idea to have one - even though insurance won't pay for it. He thinks the chances of me having all four types are very slim. (I haven't had typing done..) He thinks everyone should have the vaccine.

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• By flowershoplady
• Posted October 3, 2009 at 10:50 pm
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thanks for sharing all that info, as well as your thoughts, corellin....all very valuable. i know there's the balance between overtesting and treatment and the 'right' amount....but i think there's also that mindset amongst too many doctors that focus on the cancer prevention vs the transmission prevention as well as the dysplasia prevention. and, i agree that statistics are important in weighing what sorts of tests we do and don't do, both because of going through potential overtreatment as well as the expense. not an easy answer for lots of this stuff.

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• By flowershoplady
• Posted October 3, 2009 at 10:52 pm
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debwill, is your doctor suggesting the vaccine for you because you may have future exposures to additional hpv strains....in other words, new partners? otherwise, i just don't understand why it would be needed. (i don't recall if you're married, single, or...)

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• By DebWill02
• Posted October 4, 2009 at 12:01 am
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FSL,
I am divorced. The events of the last two years and the knowledge I gain from these posts really make me very hesitant to want to date again. I know that might sound a bit dramatic, but it is very scary to me. Also, when I was married, my husband had an affair and I had to be tested for std's. The woman he was with had been unfaithful to her husband with several men. That being said, maybe someday I think it would be nice to have a relationship again but it is a risk... Did I answer your question? :-) So.... have you heard of females over the recommended age receiving the vaccine?

On another note.. While I am at home recovering from my hyst, I am spending more time reading about HPV - now that I am no longer dealing with AIS. My daughters have had the gardisil shots, but my neice has not because one of my sister's tax clients (surgeon) told her it was ridiculous to vaccinate a child for four strands of HPV when there were so many. I just can't believe how many people are ignorant about this and it makes me angry. I appreciate all the excellent information provided here and it encourages me to seek more! ....hence the request for a HPV vaccination resource!

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• By flowershoplady
• Posted October 4, 2009 at 12:11 am
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debwill, yes, now it makes sense to me why you might want the vaccine. my gyn/oncologist didn't recommend it for me, but said she would do it if i felt strongly about it....i didn't....because of my own situation, attitude, preference, etc......and i'm realizing this thread is public and prefer not to delve into sharing info about my sex life...or lack thereof. i can certainly understand that if you think you may continue to potentially get exposed to hpv, the vaccine could be a good thing!

as for sources on info on hpv vaccines....the pharmacy companies themselves provide good basic info....not technical....mostly intended for the lay person....is that what you're looking for? merck makes gardasil and glaxo smith kline makes cervarix. and the cdc has all sorts of basic info as well, along with the american cancer society. i find the asccp site an excellent resource for acog guidelines and you can also google acog for their info on hpv vaccines. did that answer your question, or have i rambled completely off question?!? hope not!

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• By corellin
• Posted October 4, 2009 at 1:06 am
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Hi Debwill02 -- Amazing to me that your sister's client would say such an uneducated thing about HPV. Doesn't he understand that HPV16 and 18 cause the vast majority of cervical squamous carcinomas and an even higher percentage of adenocarcinomas and that 6 & 11 cause about 90% of venereal warts? I think we're reaping the consequences of all the years of HPV messages that have lumped all the types together and focused how the majority of the population gets at least one type and that HPV almost always clears. Now a lot of people don't understand why we need a vaccine if pap screening has been so successful at preventing cancer. We need to change messages, but it's going to take a while, given the very misleading messages of the past years, which have so often downplayed the ill effects of HPV and failed to distinguish between the types.

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• By dazednconfused
• Posted October 4, 2009 at 1:17 am
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DebWIll - I can relate! One of my doctors (not an ob/gyn) said he is guessing my dysplasia was caused by HPV 16. He also suggests that I get vaccinated (Gardasil). Between my age and and the STD's passed on by my cheating ex, there is very little chance of any future relationship for me. But just wondering-- in a case where a woman has already been infected by HPV, is there any chance the vaccine could be harmful, or exacerbate the effect of the already-present HPV type?

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