First let me remind you that I've written extensively about HPV infection, cervical cancer, and Gardasil, the vaccine to prevent these. The links are at the bottom of the post for your reference.
OK, here's the deal. A bloggy friend of mine is dealing with some serious health concerns due to HPV infection. I've written lots of pieces about the more intimate side of medicine, but no one can tell it like a patient. How someone deals with disease is a personal matter, and she has decided to "come out" and share her story in order to help others. (Digression: a great book called Everything Changes about dealing with cancer as a young adult is out, and it is also a bit harsh on our current health care system. It's a Studs Terkel type oral history, and a good read.)
I'm sorry to keep getting derailed here, but for some reason, a lot of my friends have cancer, and it's right in my face these days. I have one friend who's had ovarian cancer since her baby was born four years ago, another who just had a bilateral mastectomy, another with metastatic melanoma---you get the idea. If there had been some way to prevent these cancers, either by aggressive screening to identify early disease or by primary prevention through, say, vaccination, I'd be a much happier person.
Which brings me back to my friend. The internet is a funny place. Stephanie and I certainly don't agree about everything, but we do read each other's stuff fairly regularly and have had the chance to meet in person, albeit far too briefly. I'm hoping she and her hirsute hubby will make it to ScienceOnline this winter. Anyway, like many Americans, Stephanie hasn't always been able to get regular screening exams, and whether it's because of insurance, finances, laziness, or aliens, the point is that screening (that is, Pap smears) requires an action on the part of the patient to understand risk and to present themselves to a doctor for an invasive and expensive exam at least once a year.
Like many American women, Stephanie harbors the human papillomavirus, and apparently her guest is one of the cancer-causing strains. This virus lives in her cervix and messes with the genes of cervical cells, causing them to reproduce uncontrollably. In her case, the malignant cells haven't yet figured out how to invade very deeply, but they are spread out rather diffusely, making cure certain, but not easy. Stephanie has a good picture up at her place, but let me give you a little more detail. I find that people who don't actually dig into other people regularly don't always have a good feel for more hidden anatomy. You can check out the linked picture, but more helpful (at least for women) would be to ask for a mirror at your next gynecology appointment.
When a woman lays back on the exam table at her yearly exam, the doctor or nurse first looks at the outside of the vagina for any abnormalities such as external yeast infections or genital warts. They then open up the vagina with a speculum and can see the vaginal walls, and eventually the cervix, which at this angle looks a bit like a think donut. Depending on technique, a small, cylindrical brush is inserted into the cervix and rolled around to collect cells, and a wooden spatula is scraped around the outside of the cervix. Then the speculum is removed, and fingers are inserted internally and a hand is pressed against the pelvis to feel for any other abnormalities. Usually a finger is also inserted into the rectum to feel the tissue between the rectum and vagina.
If all this sounds rather invasive, it is. Some women have very little sensation in their cervix, but many women have a very sensitive cervix and yearly pelvic exams can be very, very unpleasant. For women with a history of physical/sexual abuse, the discomfort can be magnified a thousand-fold. So if you're wondering how a woman could possibly fail to get a regular Pap smear, try a little empathy. In medicine, we find it tempting but ultimately not useful to blame people for their diseases.
So Stephanie is going to be fine. If left untreated, she'd have about a 50/50 chance of developing invasive cancer. If treated aggressively, some nasty cells can still come back, so she will need close monitoring. In this case, "aggressive treatment" means chopping or lasing out a large hunk of cervix, or maybe even a hysterectomy. Stephanie shared publicly that she is not interested in birthing babies at this point, but many women in her position are.
So there you have it. Stephanie is one of tens of thousands. Yes, Pap smears work and she is not going to die of cervical cancer. But wouldn't it have been better for her to have been able to prevent this altogether? My daughter will likely never suffer what Stephanie is going through, because in a couple of years, she will be able to get the HPV vaccine. This vaccine is not free---like any intervention it has a cost associated with it. But if some day, my daughter forgets her Pap smear, she will be very, very unlikely to be stuck with cervical cancer, and her yearly Paps will be much less likely to detect abnormalities that will force her to undergo very unpleasant interventions. By the time she is old enough, boys will probably be getting the vaccine as well, reducing her risk even further (with certain assumptions made, of course).
The outcry against the HPV vaccine is coming from two places: the Religious Right, which should be immediately discounted as misogynist bullshit, and the antivaccination crowd, whose propaganda should be countered point-by-point. That has been done effectively at several other blogs, but in sum, there has been, despite millions of vaccines, no evidence of harm. None.
We can't let superstition stand in the way of our the health of our daughters. It's time to stand up to loud-mouthed, hate-filled demagogues and let everyone know that preventing the suffering of women is a good thing.
A few bloggy references
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Thanks, Pal.
There's nothing quite like hearing your husband say, "I hope you don't die of cancer," because not saying it outright means you two can't really talk about anything else either. My best to Lori and your other friends, and to you and Ms. Pal as you wait and watch and do what you can.
I hate HPV....... I must say I am cute.
But I got HPV 6 months ago, my boyfriend left me. I had to date singles living with HPV on [commercial dating site]
Thank god, I finally met someone!!
The HPV vaccine became available when I was edging in on the cut off age of 26 so I made sure to get it despite having no insurance. I paid out of pocket for that and for my exam every year. I'm one of those women that it is extremely unpleasant, I usually don't want to move for the rest of the day. I did find Gardasil to be one of the more painful vaccinations I've received (up there with a tetanus shot) but that was the only problem I had with it.
I really feel for Stephanie and hope all goes well. This just gives me more reinforcement that going through screening is worth all the pain and invasiveness of it and that I'm very glad I got vaccinated.
Okay, I finally stopped laughing at the dating site spam.
I've had three babies, and childbirth was more pleasant for me than a pap smear and gynecological exam is. It hurts and there are (IMHO) few doctors who realize how painful these exams can be. The most painful exam I've ever had was performed by a female doctor, so I don't think male doctors are "uncaring" or less than gentle.
Stephanie... if you doubt you've had an impact, doubt no more. I've made an appointment to get a pap smear... my first in 15 years. While I was at it, I made an appointment for a mammogram too... first in 20 years.
Sometimes us old ladies well beyond menopause think that we're "immune" to cancer because we're not producing all those hormones anymore. Oh, I know that is basically nonsense, but it is true.
My husband is 13 years older than I am and he's a Vietnam vet and a "nuclear" vet. He was present at several above ground nuclear tests on Christmas Island in the 60s, as well as exposed to Agent Orange. He has had three primary cancers: colon, prostate, and bladder. Today he finished 6 weeks of BCG treatments for the bladder cancer.
In this household, we simply wonder where his next cancer will present. And, crazy as it sounds, that's one of the reasons I've avoided screening. I fear outliving him.
Thank you so much for posting this. My HPV infection was of the nasty, aggressive sort as well and I believe more women telling our stories will help to counter all the fearmongering and bad science out there. I wrote a post about my own experience, partly to make the point that my being in favor of HPV vaccination didn't stem solely from my own experience, since that kind of thinking is exactly what we skewer the antivaxxers for.
Thank you, Donna. That means a great deal.
wow! i never had a problem speaking up and being really open about my cancer. granted; i have ovarian cancer, and there isnt the same 'stigma" associated with it as the hpv virus. either way....it all sucks! but i absolutely have the utmost respect for people who are open and honest about their diseases and/or any medical issues or battle. it helps MANY other people! it seems like some people are afraid to ask me how im doing, or whats going on with my health. bring it on! i didnt do anything wrong to get cancer! im not ashamed! its no different to me as it is asking about how my kid is doing, or my feelings on a new movie i saw. whatever! it is what it is. good for you stephanie for speaking out. it will make a difference in many peoples lives! :)
lori
When I heard about the HPV vaccine I thought "How Cool!" I mean, to have a vaccine that actually prevents cancer? Not to mention how much it should cut down on the medical costs (and really no funness) of D&C and coninizations. Just go to show you that some people will complain and protest anything.
Just as an aside, while I don't want to invalidate the women who do experience pain during a gyn exam, I also wouldn't want young women to put off an exam because they think it might be painful. Just from talking to friends and relatives, I think pain would be the exception rather than the rule.
Jennifer and Lori thanks for talking about your experiences. It helps alot of people. Best of luck to both of you.
If you can post a link to trials in men/boys for Gardasil, it would be greatly appreciated over here.
Best of luck to your dear friends.
There is a third source of objections to Gardasil, actually. Where I live, there were people concerned that it hadn't been tested long enough, and an idea (true or not -- HPV's not in my areas of knowledge) that since it wasn't easily transmitted as e.g. flu is, it was one that could be safely waited for.
When I heard about the HPV vaccine I thought "How Cool!" I mean, to have a vaccine that actually prevents cancer?
There's at least one more vaccine out that prevents cancer and that's the hepatitis B vaccine. Hep B causes a large number of cases of hepatoma (liver cancer) worldwide and eliminating it could be a major public health victory. I think it is only human carried so elimination is a reasonable goal as with small pox. But only if enough people get it that the virus dies out.
The idea behind the HPV vaccines and starting to vaccinate girls at age 9 is to get the vaccine into them before they are exposed to the virus. In terms of long-term testing, Gardasil is new and what the long-term consequences (not necessarily bad or good) are, particularly if it changes the subtypes that cause cervical cancer, are not clear. However, given what Gardasil is trying to protect against and having had a patient die a horrible death from metastatic cervical cancer, my opinion is get the vaccine and do your paps. The vaccine is not going to 100% prevent cervical cancer, but it will decrease the risk. The pelvic exam is not fun, but neither is dying from cancer.
As for transmission, HPV is not as easily transmitted as flu, but if you're having sex, it's one of the top things you can pick up. Your body will often clear out the infection, but about 75-90% of the having-sex population will be infected with HPV at one time or another. That is why getting regular paps is so important. HPV is out there. Get your paps!
Stephanie, I hope all goes well for you.
I suppose you will one of the first to get the flu shots this year (including the very well tested swine flu vaccine).
Already got my seasonal flu vaccine, just waiting for the H1N1 vax to get shipped. As soon as it is, i'm taking family to the health dept to get jabbed.
I got my H1N1 vaccine yesterday. Got my seasonal flu vaccine about 2 weeks ago. Due to schedules, my daughter wasn't with me either time, so have to find a time and place to get her both vaccines. I'm buggin my ex-wife about taking our son (and her daughter at the same time) to the Health Department for both.
I get a sore spot on my arm for a couple of days from the seasonal vaccine. If I poke around, I can find the smaller sensitive spot where I got H1N1 (but I have to go looking for it).
@10: I talked to my kids' doctor when Gardasil first came out, and both my son and my daughter got the shots. I expected to pay out of pocket for my son's shots, but our insurance picked it up.
Hi-
I guess I'm a weird mix because I have a scientific background, but I am also conservative...so you could say Rational Religious Right ;-). Anyways, I have researched this topic extensively on a grant at a university. Always glad to see when people are getting the right information on Gardasil and vaccination in general- since the internet is so full of kooky hogwash and scare tactics when it comes to health. Too bad that it appears to be working against the H1N1 vaccination with a third of parents projecting they will not get their children vaccinated. Anyways- thanks for helping people see the reality of the need for HPV vaccination.
@gaiainc: I agree completely with what you are saying. Just pointing out that not all objections to Gardasil can be thrown out as propaganda or misogyny. A lot are honest - misguided, in my opinion, but honest.
@LauraJ: While not particularly conservative myself, I very much think that the degree to which 'the public face of science' is disproportionately (as compared to the general population) weighted to the political left ends up hurting science in the long run. Creationism is so successful among people who may not be themselves anti-science, but know nothing about science, because (sadly) creationists have better PR in those parts of the world.
For an (ideally) neutral process/institution like science, too much politicization is always going to be harmful in the end. I'd argue that anti-vax, homeopathy, and other traditional 'left' pseudosciences are far more harmful to science in the long run than creationism and the traditional 'right' ones - because everyone either gets vaccinations or not, everyone gets sick sometimes, but most average people don't think deeply about the origins of life. A lot of people who get written off as creationists are so more by default than by deep commitment.
I lived in fear with HPV for ten years, until mine cleared up on its own. My son is getting the HPV vaccine as soon as he is old enough.
Got my flu jab, just waiting for my appointment to get the H1N1, and the boy is getting his at school, yay! Now if I can just get the spouse to make time to get his... :)
Man, did I get in an argument over this post. I linked to it on Facebook and said it was a "great article on HPV vaccine", then two of my former classmates (I'm a massage therapist) started in on me. It's hard to try to get people to think scientifically when the tools just aren't there.
I posted the exchange on my site with names and such removed to showcase how some people argue and to get some criticism on how I could maybe have handled it better.
In any event, thanks for this. Your site is one I check daily and recommend to my friends and clients.
PAL -
Comment #2 is a dating spammer!
Some head and neck cancers in men are also HPV cancers. We're all in this together.
Thanks, Tsu...i redacted the actual site and left it up for lulz.
Huw, theres a great article in Forbes about it:
http://www.forbes.com/forbes/2009/1102/health-cancer-tonsils-virus-hpv-…
Also, penile and anal cancers are HPV-related.
Thanks for sharing this post. As you stated, HPV infections lead to a number of office visits to primary care providers and gynecologists. In the United States, the vast majority of these visits fortunately involve non-malignant lesions. Having performed a number of procedures to evaluate and treat these lesions, I know the amount of worry, anxiety, and discomfort they can cause. Having a vaccine to reduce this burden on women is a true advancement in healthcare.
In Canada, Britain, and the rest of the civilized world with universal medicare, the HPV vaccine is generally being administered through the schools. As far as I've heard, it's free, like most public health initiatives. A few school boards in Canada, mostly Catholic, have announced that they won't be doing it, falling back on a punitive attitude towards sex, even though most of their pupils expect to marry. (I can't believe that some people are in effect saying, "Let your daughters get cancer: that'll fix them for having sex.") I think that Northern Ireland waffled for a while but came down on the side of public health.
A really aggressive program would test older girls and inoculate them if they hadn't been exposed to the virus.
If you have been exposed or have the virus (two different things), would getting the vaccine do any good? Or is it one of those viruses like chickenpox that sink into your tissues and never leave?
I got the first of my HPV shots today (not dead yet, though they did ask me to stick around for a bit in case I fainted) and I got my seasonal flu a few weeks ago. Now I just want to have my swine flu shot and be safe, I spend enough time ont he bus to want to be vaccinated up.