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I GOT LOTS OF MISINFORMATION AND SPECULATIONS
I'm a scientist. I don't study viruses, but I can certainly read the literature. A lot of what filters down to patients, and even their doctors, is pure speculation and sometimes just plain wrong.
I just tested positive for HPV 16. I had a VERY brief relationship with a man (A) that ended a year ago. Before that, I had been celibate for more than two years, after breaking off a relationship because my boyfriend (B) was dating other women. (I don't know if they had sex, and I'm not interested.) Five months before breaking off my relationship with Man B, I tested negative for HPV altogether. Now I'm HPV 16-positive.
However I got it, this means my infection is considered "persistent" (either 12 months or about 3.5 years) - and that's not good. About half of HPV 16-positive women will clear the infection, but those who don't clear it within a year or two, tend to later develop at least some stage of lesion. From what I've read in primary research articles and meta-analyses, my chance of going on to develop any sort of lesion is about 50%, and for actual
CIN3/cancer, it's still at 20%.
I'm not freaked out. I'm going to be very aggressive about follow-up and I think my chance of ever dying is extremely low. Following up on testing is almost guaranteed to catch disease progression before it gets bad enough to kill you.
But the advice I've been reading online bugs the heck out of me.
Some of the big questions that haven't been answered involve the natural history of the virus. How long can it stay dormant? Nobody knows. If it integrates (cuts and pastes itself) into your DNA, could you have a negative test even though you're actually in a higher risk category than someone whose virus is still episomal (not pasted into your own DNA)? Again, nobody knows. Here's a big one: can a person every truly clear the virus 100%? We absolutely don't know this. If it's living inside your own DNA, chances are excellent that you will never get rid of it all. Consider HIV: it inserts into your DNA and can live there for years without doing anything, and there's nothing the body can do to even find it to get rid of it. Consider chicken-pox and shingles: the virus can express itself as chicken-pox in children, and show up decades later as shingles in the same people. We don't yet know if HR HPV does this.
Nonetheless, most authorities will tell HPV 16-positive people that their body will probably get rid of it and they won't have to think about it any more. Some go so far as to say that then they can't give it to anybody else. This is completely unknown and utterly irresponsible. The research simply hasn't been done. Furthermore, these kinds of reassurances result in fewer people following through with testing later on, and a few of them will die as a result.
There has been some research that is peripherally relevant: women who change from HPV-16 positive to negative in a later test still have an increased risk of cervical cancer. Fortunately, the probability of this person actually getting cervical cancer are quite small - but the chance is still there.
There are some women who have negative HPV 16 tests in-between multiple positive tests. What's going on here? Who knows?
Don't blame the scientists: it takes years for the knowledge to unfurl, and there will be false starts in wrong directions. This isn't because scientists aren't doing a good job; it's just the nature of the universe.
For those of you who are vigorously trying to live as healthily as possible in hopes of getting rid of the virus: there's no evidence that "healthy" habits have much of an effect on the immune system, or that this helps clear the virus.
No, the best strategy is to keep reminding yourself that it's extremely unlikely that you will die because you are HPV -16 positive - AND to keep tabs on your status as closely as possible. If you have persistent HPV 16, don't let "them" put you back on a 3 or 5 year, PAP-only regime when you get a negative PAP. Insist on getting an HPV test with every PAP, and get them at least every year. The HPV test is especially critical because it can point to adenocarcinomas that are very commonly missed on PAP smears - and these are more aggressive cancers than the ones typically picked up on PAP's. PAP smears are great for screening for squamous (flat cell) cancers, but they have have absolutely no effect on bringing down cancers from further up in the cervix. PAP smears have reduced the death rate from squamous-type cancers enormously - but the incidence of adenocarcinomas is going UP.
Finally, the most commonly-given reassurance give to people who become high-risk HPV positive: "don't worry about it. Almost everybody gets HPV at some point." The implication is that your situation isn't serious.
It is true that almost everybody gets HPV. But the HIGH-RISK HPV 16 and 18 viruses are actually pretty rare - less than 1% of tests - and they are the ones that matter. They also persist longer and more frequently than the HPV's most people are talking about when they say "don't worry."
I'm not trying to alarm anybody. I firmly believe that being vigilant about follow-up will be extremely successful in preventing serious disease or death for people who are HR HPV-positive. I have no fear that I'm going to die. But I'm reminded of my friend Tom: when he turned HIV-positive, he looked at me plaintively and said: "but they said HIV is hard to get." These kinds of reassurances can kill people.
Just do what you need to do to stay out of trouble - and then relax. THEN you're going to be okay.
I just tested positive for HPV 16. I had a VERY brief relationship with a man (A) that ended a year ago. Before that, I had been celibate for more than two years, after breaking off a relationship because my boyfriend (B) was dating other women. (I don't know if they had sex, and I'm not interested.) Five months before breaking off my relationship with Man B, I tested negative for HPV altogether. Now I'm HPV 16-positive.
However I got it, this means my infection is considered "persistent" (either 12 months or about 3.5 years) - and that's not good. About half of HPV 16-positive women will clear the infection, but those who don't clear it within a year or two, tend to later develop at least some stage of lesion. From what I've read in primary research articles and meta-analyses, my chance of going on to develop any sort of lesion is about 50%, and for actual
CIN3/cancer, it's still at 20%.
I'm not freaked out. I'm going to be very aggressive about follow-up and I think my chance of ever dying is extremely low. Following up on testing is almost guaranteed to catch disease progression before it gets bad enough to kill you.
But the advice I've been reading online bugs the heck out of me.
Some of the big questions that haven't been answered involve the natural history of the virus. How long can it stay dormant? Nobody knows. If it integrates (cuts and pastes itself) into your DNA, could you have a negative test even though you're actually in a higher risk category than someone whose virus is still episomal (not pasted into your own DNA)? Again, nobody knows. Here's a big one: can a person every truly clear the virus 100%? We absolutely don't know this. If it's living inside your own DNA, chances are excellent that you will never get rid of it all. Consider HIV: it inserts into your DNA and can live there for years without doing anything, and there's nothing the body can do to even find it to get rid of it. Consider chicken-pox and shingles: the virus can express itself as chicken-pox in children, and show up decades later as shingles in the same people. We don't yet know if HR HPV does this.
Nonetheless, most authorities will tell HPV 16-positive people that their body will probably get rid of it and they won't have to think about it any more. Some go so far as to say that then they can't give it to anybody else. This is completely unknown and utterly irresponsible. The research simply hasn't been done. Furthermore, these kinds of reassurances result in fewer people following through with testing later on, and a few of them will die as a result.
There has been some research that is peripherally relevant: women who change from HPV-16 positive to negative in a later test still have an increased risk of cervical cancer. Fortunately, the probability of this person actually getting cervical cancer are quite small - but the chance is still there.
There are some women who have negative HPV 16 tests in-between multiple positive tests. What's going on here? Who knows?
Don't blame the scientists: it takes years for the knowledge to unfurl, and there will be false starts in wrong directions. This isn't because scientists aren't doing a good job; it's just the nature of the universe.
For those of you who are vigorously trying to live as healthily as possible in hopes of getting rid of the virus: there's no evidence that "healthy" habits have much of an effect on the immune system, or that this helps clear the virus.
No, the best strategy is to keep reminding yourself that it's extremely unlikely that you will die because you are HPV -16 positive - AND to keep tabs on your status as closely as possible. If you have persistent HPV 16, don't let "them" put you back on a 3 or 5 year, PAP-only regime when you get a negative PAP. Insist on getting an HPV test with every PAP, and get them at least every year. The HPV test is especially critical because it can point to adenocarcinomas that are very commonly missed on PAP smears - and these are more aggressive cancers than the ones typically picked up on PAP's. PAP smears are great for screening for squamous (flat cell) cancers, but they have have absolutely no effect on bringing down cancers from further up in the cervix. PAP smears have reduced the death rate from squamous-type cancers enormously - but the incidence of adenocarcinomas is going UP.
Finally, the most commonly-given reassurance give to people who become high-risk HPV positive: "don't worry about it. Almost everybody gets HPV at some point." The implication is that your situation isn't serious.
It is true that almost everybody gets HPV. But the HIGH-RISK HPV 16 and 18 viruses are actually pretty rare - less than 1% of tests - and they are the ones that matter. They also persist longer and more frequently than the HPV's most people are talking about when they say "don't worry."
I'm not trying to alarm anybody. I firmly believe that being vigilant about follow-up will be extremely successful in preventing serious disease or death for people who are HR HPV-positive. I have no fear that I'm going to die. But I'm reminded of my friend Tom: when he turned HIV-positive, he looked at me plaintively and said: "but they said HIV is hard to get." These kinds of reassurances can kill people.
Just do what you need to do to stay out of trouble - and then relax. THEN you're going to be okay.
You are reading content posted in the Human Papillomavirus (HPV) Community
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