For the past 8 months I have been in the neurotic and distracted mess of a headspace brought on by a cervical cancer scare. From a questionably “bad PAP” in June to a biopsy in October, and a thousand questions and confusions in between, I have been navigating the unclear world of my cervix and its wayward cells. As someone who has been avoiding a PAP for far too long (not recommended), to suddenly have that many people looking at my sickly cervix was a tad overwhelming.
Lately HPV (the most common sexually transmitted viral infection in the world) has gotten a lot of awareness campaigns, press and attention with the recent release of an HPV vaccine available to women, but I was amazed to hear that 87% of teens had not heard of the disease. For those of us familiar with HPV, we’ve heard the statistic that HPV is responsible for 90% of cervical cancer cases, and that up to 1 in 3 women have the virus, but statistics such as these can cause the average owner of a cervix to panic and expect the very worse. And expect the worse is what I did. In the past 8 months I have gone from being stoic and reasonable, to crying hysterically in front of med students, convinced I was at death’s door with few answers to console me.
The problem with HPV is that there are so may different varieties (over 100) with so many varying degrees of worry- some will indeed cause cervical cancer, but others cause very treatable genital warts, others do nothing and some simply go away on their own. Testing for HPV is also not very common - my personal HPV testing only tested for a small number of high risk strains of the virus and had to happen at a hospital, not at my local doctor.
In all my neurotic panic stricken 8 month madness, I did find some solace in this piece of advice (half way down the page) that I came across by accident while waiting for my biopsy results. Sasha’s advice to a partner concerned by his girlfriend’s HPV diagnosis answered a whole wack o’ questions the doctors in all their “doctor-speak” simply couldn’t:
“HPV doesn’t help its intelligibility at all by being so deranged. Transitory, incurable, cancerous, benign… Jesus H., make up your mind!”
Yesterday, my biopsy came back cancer-free and my HPV results negative. My cells are still a bit wayward but I’ll take the follow up exam over the confusion any day. If you want to learn more about loving your cervix and what you can do to take care of it, read more here.
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six comments
I'm glad to hear your biopsy was cancer-free, and that you are almost clear of this mess.
I went through a breast cancer scare about five years ago. It was terrifying. Especially when it felt like no one was able to tell me anything... solid. And in some respects, telling me nothing at all (whoever first came up with the policy of "if you don't hear from us, you're okay" should be bludgeoned). It felt like I was just left to pick-and-choose what I was going to believe depending on my headspace -- would I believe the consult I found comforting, or the one that was frightening (which for some reason, made it more plausible).
In my case, it turned out to be "nothing". "Nothing" being a benign fibroadenoma. Based on the diagnosis, the medical advice was then to have this "nothing" checked by an expert once a year. Alternatively, I could have it removed "just to be sure". Wait a minute, if it's "nothing", why do we need to do this to be sure? Are you sure it's nothing or not? Maddening.
So, a different situation than a cervical cancer scare, but a lot of the same sheet music. Dealing with these confusing stats and sound bytes and doctor's offices and wonky body weirdness is just something we have to do. But the best defense in preserving your sanity is educating yourself. Asking questions. Lots of questions. Stupid questions, redundant questions, questioning the contradictions questions, pre-written questions. Keep asking and checking until you feel comfortable you understand what's going on with your body. Because it's counting on you.
(Nothing like ending a comment with a little bit of cheese...)
Posted by catherine
November 21, 2006, 12:39 PM
Thanks Catherine for sharing your own experience. Your comments on "it's nothing" are so relevant to what I went through. My cervical experience involved a lot of different people (technicians, gynos, clinic doctors, students, receptionists) saying the phrase "it doesn't necessarily mean its cancer." That phrase is so terrifying because, while it's trying to reassure someone's fears, in the context of a hospital that deals primarily with cancer, it suggests that's what they all expect.
Questions, questions, questions - I had so many, and yes, I did get the "we can't tell you anything yet" answer multiple times, but if you don't ask them you'll (if you're anything like me) be consumed by a tradegy manufacturing brain.
The political implications of women's health issues are huge - from an early age we're taught to hide and be ashamed of the biology of our bodies, then to flaunt the sexuality of them, then to be scared of their possibilities and terrified of them failing us. Then HPV awareness campaigns manage to severely scare our already unclear headspaces and ask us to take full responsibiltiy for a gender shared disease.
Any thoughts?
Posted by Stacey May
November 21, 2006, 1:07 PM
Thanks for sharing your story, Stacey May. There is an article on HPV and Merck's new vaccine in the new issue of Shameless, which will be out in a few weeks (it's being printed next week!).
Posted by Nicole
November 21, 2006, 8:46 PM
I'm so glad your test for cancer was negative! I'm sure that's a big relief.
Thank you for putting this up here. It's so important for people to get Pap tests, and many don't even know it! A Pap test can catch abnormal cells before you get cancer -- and then they get removed. And you're fine.
The thing with HPV is that it is so common and so not dangerous -- unless you don't get Pap tests. Seriously. Ask your mom, aunt, neighbour, whoever, I bet at least one of them has had HPV at some point in their lives, or had to have abnormal cells removed. As long as you get tested regularly and protect yourself, you'll be fine.
Posted by Evey
November 21, 2006, 11:05 PM
I don't think I've ever seen a medical awareness campaign targeted at women which didn't leave me livid and ranting. Actually, regardless of who and what they are targeting, most 'awareness' campaigns are built on fear-mongering. Take, for instance, the recent Ontario public health hand-washing campaign. I mean, it's just sad to begin with: of all the public health issues our government could blow (at least) hundreds of thousands of advertising dollars on, they chose hand-washing? Then, to ice this cake of stupidity, it was a fear-mongering hand-washing campaign. Subway ads with a beautiful wrinkled hand holding a small youthful hand, and the caption was something to the effect of "A touch can mean so much, but think of what it can transmit!" (okay, I'm exaggerating because I can't find an online copy of the ad, but sadly, only slightly...)
That's a bit of a sidebar, but it's all part of a culture that still reinforces being fearful and ignorant of our bodies. Women in particular are made to feel responsible not only for their own bodies not 'breaking down', but also those of their partners, their parents, their children, (the neighbour, the mail carrier, the dog, the cat, the fish...). This is not limited to "public awareness" campaigns but in many product ads. Using Mr. Clean to keep your family safe from salmonella, etc. We use fear to push a frightening number of ideas and products, many of them explicitly to women. So, again sadly, I'm not surprised at all at the HPV campaign.
However, away from ad tactics, and back to the scary diagnosis part. There is another important piece here that often gets overlooked -- even if the diagnosis is cancer, there are many different types of cancer, and many have extremely high survival rates. For instance, the 5-year survival rate for cervical cancer is 70%. Of course, anything less than 100% is still very scary but having cancer is, in the majority of cases, not a terminal sentence.
Possibly in contradiction to the HPV campaign, cervical cancer is actually listed by Cancer Care Ontario as the 12th most common cancer in women.
If I'm reading these incidence rates correctly, the number of cases have actually been dropping significantly over the past thirty years (maybe that was in the small print on the HPV spots). Even at the higher incidence rates (among younger women), it is still the 4th most common cancer. After thyroid, breast and skin cancer. And I haven't seen any thyroid cancer warnings recently...
I absolutely understand the intense fear when someone even says the word 'cancer'. I have been recommended, though I have not yet read, this book:
"Cancer is a Word, Not a Sentence" by Dr. Robert Buckman, which seems like a good reference for anyone who knows someone with cancer, who has had a scare themselves, or who just wants to get educated on what is to most of us such a heart-stoppingly scary disease. A lot of fear comes from a very irrational place, and getting educated can be one of the most effective antidotes.
Posted by catherine
November 21, 2006, 11:53 PM
I read in Herizons that there are major questions about how fast this HPV vacine went through testing. Aparently Gardisil was only tested on about 100 people and now they want to make it manditory for kids. The company is pushing it like crazy. The piece was very convincing. Spread the word. THIS VACCINE IS NOT SAFE.
(It's also all the more creepy that the whole "tell someone" campeign caters to femmenist sensibilities.)
Posted by Myra
February 26, 2008, 10:08 PM
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