The Downside of Understanding
As I look back over my 10 year career in obstetrics and gynecology, I am sometimes struck at how many things have been discovered in this time period. When I started the origin of pre-eclampsia was unknown, and now we know that it likely originates in an overabundance of a molecule called Soluble FMS-Like Tyrosine Kinase, a competitive inhibitor to natural angiogenesis in the placenta. Ten years ago the origins of cervical dysplasia were still being developed, and now we know that the majority if not the entirety of cervical dysplasia and cancer is due to an infection of Human Papillomavirus, and for all intents and purposes cervical cancer is actually a sexually transmitted disease. We have developed this idea even further, allowing us to use HPV virus detection as part of a screening program for cervical dysplasia and cancer, and even to immunize for HPV infection in young women yet to be exposed.
All of these things amaze me. But to be honest, they also make the practice of obstetrics and gynecology more difficult. We have advanced our understanding to level that is impossible to explain to patients who lack a strong background in science, forcing us to accept simplistic explanations over explanations of how it really works. Let’s use HPV as an example.
When I started my residency, explaining an abnormal pap smear to a patient was fairly simple, and that explanation could be understood by just about every patient.
“Your pap smear indicates that you have some cells on your cervix that are at risk for becoming cervical cancer. These might get better on their own, or they may get worse. We need to look closer at the cervix and take some biopsies so that we know how far along in this change these cells are, and to know if we need to do anything further. If the cells are far enough along the path to becoming cancer, we can remove them so that you don’t get cancer.”
Patients understand this. Its fairly basic, and makes some sense. It can even be illustrated fairly easily on the back of a piece of paper, drawing a prototypical normal cell, a cancer cell, and several cells in between. You just draw them, point to one of the cells in between a normal and cancer cell, and say that they likely have some cells like this and they need to be observed or treated. When patient would ask why their cells get like this, we just shrugged and said “It just happens sometimes… we don’t know why.” Patients accepted that, and we went on with whatever needed to be done.
But now we know more, and it has become much more complicated.
We can still explain what a dysplastic cell is, but now when patients ask why its much harder to explain.
ME – “Well, your cells are like this because you contracted a virus called Human Papilloma Virus, which you got from a sexual partner”
Patient – “WHAT??!?! I have a sexually transmitted disease?”
ME – “Technically, yes, but not really. HPV is extremely common. The only way to reliably avoid it is to never have sex, which nobody does, so really you can’t avoid getting it. So its not really an STD like that.”
In most cases this leads to a divergence in the force, completely depending on who the patient is. If the patient has taken some college biology, we might be able to continue with a fairly in depth discussion, leading to some understanding of how HPV could technically be an STD but not really like Gonorrhea of Chlamydia, and how one can’t really blame their partner for giving them HPV.
But unfortunately, many patients don’t have the technical background to follow you down that line of explanation. Many are stuck on “virus”, not really knowing what that is in any specific sense, and how that might differ from a bacterial infection that one gets from sex with an infected partner. It also now becomes extremely difficult to provide an adequate explanation why HPV infection does not really imply any infidelity in the relationship, as understanding that would require an understanding of how viruses differ from bacteria, and how viruses can be around for years without causing any problems.
Patient – “But how do I get rid of it?”
Me – “Well, if you stop being exposed to it your body will likely clear it over time, like it clears other viruses.”
More potential areas of misunderstanding. Patients with minimal science background don’t understand the idea of a virus being killed off over time, especially when they know that a Herpesvirus doesn’t ever go away.
Patient – “So if I leave my partner it will go away?” – a logical idea, but not really a good idea. The truth is that when patient has normal paps for years and then suddenly starts having abnormals, there is almost always a new partner in the mix. They have a new strain of HPV. But getting into this with patients usually leads nowhere good, and even suggesting that a change of partners might resolve recurrent abnormal pap smears, while possibly true, can be very damaging to a healthy relationship.
Me – “If you like your partner, this is no reason to change that. HPV is so common that making relationship decisions based on who you got it from is not the right thing to do. Unless you decide to never have sex again, you will always be at risk to be exposed to HPV, and there is really nothing you can do to change that. Ten years ago we didn’t even know that HPV existed, and we would just be talking about an abnormal pap smear, and not about a sexually transmitted disease”
Patient “Its a sexually transmitted disease?!!?!!”
ME – “(grrr…) yes… but not really like other STDs!”
Patient “Can’t I get that Gardasil injection and fix it?”
ME – “You can get it, but it only protects you from a virus you haven’t been exposed to. Your tests indicate you are already carry the HPV virus, so it won’t have as much benefit for you.”
Patient – “So if you treat the bad cells, it will be gone?”
ME – “Not really. The cells will be gone but the virus will still be there.”
Patient – “Then what good is it to treat it?”
ME – “AAAGGH!”
At times like this, it makes me think that sometimes all this knowledge really hurts us sometimes. It feels wrong to revert to a totally simplistic (and actually ignorant) understanding of cervical dysplasia, but many patients lack the scientific background to understand an explanation of what is really going on. I love to explain the underlying disease to a patient and help them to decide how they want to go about treating it, but the complexity of our understanding forces me to be the paternalistic doctor that I hate.
Patient – “How did I get this abnormal pap smear”
ME – “I could try to explain it to you if you like, but its really complicated, and probably easier to just think of it as cells on their way to becoming cancer and leaving it a that. We just need to treat this so you don’t get cancer.”
Patient – “OK”.
And they’re actually satisfied. But I’m not.
Academic OB/GYN 
HPV can be avoided by using condoms. IMO, that is a better option than getting a vaccination that has not been properly tested. Condoms should always be used in new relationships, until monogomy is established, and both partners have been tested for STD’s.
Perhaps it should not be explained as a sexually transmitted disease, but rather, a communicable virus that is as common as the cold virus, that just happens to be transmitted via sexual contact.
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Millions of doses of Gardasil have been given without any signs of harmful effects other than local reactions, either in pre or post-marketing surveillance. It is highly effective in preventing cervical dysplasia when given to unexposed women, near 100% if given early enough.
Condoms may decrease HPV transmission in some case, but they do _not_ prevent transmission entirely.
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I hear ya on the difficulty of explaining HPV and abnormal paps. Recently I had a client that I thought had it all adequately explained, and a few days after her colposcopy she called to request a letter for her lawyer since she was trying to sue her current (but fairly recent) partner for giving her HPV! She was not happy that I wouldn’t give her a letter. She was sure she must have acquired HPV from her current partner, since she never had an abnormal pap before – and she’s actually probably right, but one can hardly hold the partner accountable for something he has no way of knowing!
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It would help if people took more (or any!) responsibility for their actions. People who are sexually active should use condoms and get periodic testing for STD’s. There is no reason to be unaware of passing something on these days – there are too many ways to prevent it. While HPV is rarely life-threatening, it can still create serious problems, so people should really do more to avoid it.
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Umm, it doesn’t sound all that difficult to me…how about saying “you have contracted the Human Pappilloma virus, which causes abnormal cells on the cervix that could potentially become cancerous. HPV is as common as the cold virus, so it’s not technically an STD, although it is passed from person-to-person via intercourse.”
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Except it is technically an STD, and its more common than the cold, affecting 40-50% of sexually active women.
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I’m concerned that failure to inform women with long-standing negative pap smears who suddenly have a positive one that this very likely indicates that either she or her partner have taken on a new sex partner puts her at continued risk for other STDs. Wouldn’t this be a good time to suggest other STD screening as she is likely now having unprotected sex in a nonmonogamous relationship? Would you consider yourself culpable if the next time this patient presents it is for a “real STD”? It seems to me that you take on a lot of responsibility when you withhold actionable information from women because you have predetermined that it would be in their best interest to preserve their current relationships.
Given that Gardasil protects against multiple strains of HPV, wouldn’t it still be of some, admittedly lesser, value to HPV+ patients who have not been exposed to all 4 strains in the vaccine? Would you present the option to receive that vaccine if the patient understands that she may need to private pay as she does not meet current insurance guidelines for reimbursement?
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While new HPV infection is often associated with a new partner, this association is not strong enough to suggest non-monagamy in a relationship in any definitive way, which is why this is a sticky widget of an issue. See above, doctorjen (who also has to explain this stuff) gets it.
Gardasil is FDA approved and reccommended in women 14-26, irrespective of previous HPV infection status. That said, the effectiveness of the vaccine depends strongly on the previous infection status, with near 100% effectiveness when given to completely unexposed women. In the large phase III trial, women who were already exposed to 16 and 18 had minimal benefit from Gardasil, which is what we would have expected. It does still provide protection from 9 and 11, which cause genital warts. Newer vaccines with higher valency are under development. Merck, who makes Gardasil, has a nonavalent vaccine (nine serotypes) coming soon.
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One issue is that HPV doesn’t necessarily cause symptoms right away, unlike gonorrhea or chlamydia, therefore a suddenly abnormal pap does not necessarily mean there has been a change in partner on either side. Some folks are persistently HPV positive. Male partners have no symptoms of any kind of the strains of HPV that cause cervical cancer, so have no way of knowing they can possibly transmit. Condoms may reduce transmission, but don’t eliminate it – and many responsible people may choose to stop using condoms in a monogamous relationship, without having any way to know if they are at risk of acquiring HPV. Also, most HPV infections don’t cause cervical cancer – most will clear on their own with no treatment whatsoever (although monitoring and close follow up is certainly warranted.)
I do explain in detail abnormal paps/HPV/treatment and screening options and offer testing for other STDs – it just does provoke a lot of anxiety in clients, not necessarily warranted about the sexually transmitted nature. Personal responsibility is great – but I have seen HPV infections in women with 1 lifetime partner, and while I certainly counsel on ways to reduce infection, I still see a high level of guilt and anxiety in clients who have been pretty darn responsible. One recent abnormal pap was in a woman in her 50s who recently remarried after being widowed – she’d had 2 lifetime partners, as had her new husband, it’s hard to imagine I should be haranging her about her level of responsibility.
I certainly don’t want to withhold any info from my clients – it’s just tough to see that info cause more anxiety than less!
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I never withold information – my point is that sometimes patients don’t have the background to understand what one is trying to present. Its all getting very complicated, and if you’re dealing with a population that may have had little or no science education, perhaps not even graduating high school, it can be a tough thing to explain in a way that makes sense.
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No, I was trying to agree with you! Sorry if it didn’tcome across that way. It is difficult to come up with ways to explain things well in lay terms and provide both the education and reassurance folks need, and enough understanding so they know how to proceed. Add in someone who doesn’t really know what “virus” means, or has difficulty understanding what I mean by the small percentage chance of future problems, and it really gets difficult.
And some times I just flat out screw up – thinking folks understand well something I’ve said, when they clearly do not. One rather comical incident that way, was actually an OB client. After many hours of trying to coax her persistent posterior baby into turning, many, many hours of labor, and several hours of pushing, it was time to move to cesarean. Everything was explained to the mother and her family, she was in agreement, she seemed to understand what had happened (not true CPD, just a poorly positioned baby that in this position on this day was not going to fit out) and there was that sense of relief that we were going to go off and have the baby soon, finally. As we moved to OR, I jokingly said “I don’t know, I think that baby of yours is in there holding on to your ribs with his toes!” and everyone laughed.
Imagine my chagrin when I referred the same kid to an ENT a year later for persistent otitis (I’m a family doc)and the consult letter came back with medical history listed as “born by cesarean section due to foot caught in mother’s ribs”! So sometimes, I just manage to say the wrong thing even when I think I’m being clear!
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We’ll see that comment on http://www.myobsaidwhat.com in 3.2.1…
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Great post Nick.
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I thought that persistent HPV that won’t clear was strongly associated with being infected with multiple strains. An HPV infection per se, as well as low grade dysplasia (which will probably clear when the underlying HPV infection goes away) are therefore not necessarily indicative of sexual irresponsibility on the part of the patient or a partner, but high grade dysplasia or actual cervical cancer probably are.
I’ve had cervical cancer, incidentally, although I was fortunate enough that a radical trachelectomy was curative (and I subsequently had a successful pregnancy), so I’m fairly sensitive to what kind of inferences people might draw about my sexual behaviour as a result, and the fact that everyone from my boss to my mother-in-law knows that I’ve had an STD!
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I’m not sure you can put any particular strain of HPV onto any particular behavior. All strains are transmitted sexually. The high risk types are more assoiciated with severe dysplasia and cancer, but don’t transmit any differently than the other strains.
Glad you were able to have your radical surgery and preserve childbearing. There are only a few surgeons in the country that perform that procedure.
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I think I didn’t explain myself very well. If cervical cancer is the eventual result of a persistent infection by a high risk strain of HPV, then the question is what causes one person to clear the infection quickly and another person not. I have been told that the infection is more likely to persist if one is simultaneously infected with multiple strains, which is in turn more likely to be the result of promiscuous behaviour than infection with a single strain.
At any rate, the doctor who treated me glossed entirely over the whole HPV aspect and told me quite firmly not to look for information on the Internet as it would just upset me (advice I didn’t take!)
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Hmm. I’m the type of patient who likes information and statistics, and has a reasonable degree of scientific literacy, so I like to think I’d fall into the first group.
I don’t agree with Jaynie particularly, but I do think she is on to something with the common cold analogy.
something like: “Your cervical cells look like this because of HPV – it’s a virus, and most of the time, if someone is exposed to it, they won’t have any symptoms or problems. Like when someone beside you with a cold sneezes: you may breathe in the virus, but you don’t get a cold yourself. However, this time you are showing some symptoms that we need to follow up on and possibly treat in case they get worse – just like if you had a cold, you’ll most likely recover by yourself, but we want to check to make sure it doesn’t develop into pneumonia”.
Now I’m off to investigate Gardasil…
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This is a really interesting post, and gives me new understanding of HPV and abnormal pap smear. In the past I had a number of abnormal pap smears. I’d have an abnormal one, wait 3 months, repeat and it would be fine. I think it happened 3 years in a row. I was a biology major in college at the time this was happening (much less than 10 years ago)! No one ever really explained that abnormal pap smears always come from HPV. No one ever told me about virus clearance and that’s why we wait and recheck. No one ever directly said HPV was a sexually transmitted disease.
I think your explaination and example conversations are very factual and easy to follow. But I do have a degree in biology and work in heme/onc research so I’m probably not representative of the typical level of patient understanding. I certainly appreciate the information, and hope doctors are working on ways to explain this issue in a way their patients can understand.
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Do you think colposcopy is mandatory for all women?
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The question is a little too general to give an answer. A clear protocol for who needs colposcopy is published and updated every three years by the American Society for Coloposcopy and Cervical Pathology (ASCCP), and can be viewed at http://www.asccp.org.
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This Dr. wrote this article in 2010? I find it hard to believe he is an actual DR….. He clearly states that HPV is sexually transmitted and also contradicts himself …..
.”your cells are like this because you contracted a virus called Human Papilloma Virus, which you got from a sexual partner”
“It also now becomes extremely difficult to provide an adequate explanation why HPV infection does not really imply any infidelity in the relationship, as understanding that would require an understanding of how viruses differ from bacteria, and how viruses can be around for years without causing any problems.”
“The truth is that when patient has normal paps for years and then suddenly starts having abnormals, there is almost always a new partner in the mix”
WOW! Guess alot has changed in 2 years and this Doc needs to catch up!
VIRGINS have been found with HPV….
The drug DES also plays a role in getting HPV
AND DOC, it the virus can be around for years without causing problems or being detected, and is found in VIRGINS and women who havent had sex for years and years…. how could you possibly say
“The truth is that when patient has normal paps for years and then suddenly starts having abnormals, there is almost always a new partner in the mix”
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Have you ever considered creating an ebook or guest authoring on other websites?
I have a blog centered on the same topics you discuss and would really like to have you share some stories/information.
I know my viewers would appreciate your work.
If you are even remotely interested, feel free to send me an e-mail.
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WHAT IS THE RISK OF FUTURE MISCARRIAGES AFTER A PROCEDURE OF FREEZING ABNORMAL CERVICAL CELLS?
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Thanks for your question. After a single procedure there is no additive risk. Multiple freezing or excisional procedures have some additive risk for second trimester pregnancy loss, though the additional risk is still small. There is a increased risk that is relative to the amount of tissue that is removed or destroyed. A freezing procedure only destroys about 4 mm of tissue, so it doesn’t do a great deal of damage.
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