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Unseen, Unheard by Hillary ROsner
  


Here's something I learned last year: cancer is contagious. More significantly, it's a sexually transmitted disease. I had the virus that leads to cervical cancer, a strain of human papillomavirus HPV the most frequently occurring STD. HPV, which affects between twenty and forty million men

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and women in the U.S., mostly without them ever being aware of it, is responsible for more than ninety-nine percent of all cases of cervical cancer, according to a study released last year.
      For me, it started out as a routine visit to the doctor. It was just after Labor Day, and I'd been having lower abdominal pains for a couple of days. It turned out to be nothing or at the very least, nothing that interested my gynecologist. Pulled muscles, as I had suspected, and above the Mason-Dixon line that delineates gynecological issues from the ones you see a regular physician about. But while I was there, I figured I might as well get a regular check-up too.
      A week later, I got a phone call from the nurse. "There are abnormalities in your Pap test," she said in that infuriatingly obtuse way so often characteristic of the medical world. "The doctor would like to see you again." I didn't think twice about it, really. "Abnormalities" could mean anything. And Pap tests are notorious for displaying abnormal results where there's no real problem; everything from stress to a mild yeast infection can interfere. So I made another appointment.
      At the second visit to my doctor, I fainted. He performed a colposcopy, the standard test for identifying abnormal cells in the cervix. The procedure which, I learned later, generally follows so closely on the heels of an abnormal Pap only when there's indication of severe cell mutation involves observing the cells of the cervix under a magnifying lens and then removing more cells to check for malignancy. It was a relatively quick procedure, just a few minutes long and more uncomfortable than painful. When my doctor was done he inserted two super tampons to sop up the blood. That's when I began to feel queasy. He was talking to me about eventualities, what would happen if I did in fact have HPV and was harboring precancerous cells in my otherwise healthy and energetic body. He said the words "infection" and "tissue" and "dysplasia," and I couldn't stop thinking about the tampons and the blood, and then he said "biopsy," and I could feel all the color drain from my face. I began to see stars. And from far away somewhere I heard the doctor's voice calling for the nurse.
     
I didn't tell anyone about my visit to the doctor. I didn't want to worry them. I spent the weekend fretting and cramping up and trying to forget. And bleeding. Lots. On one trip to the bathroom, I found a large clot in my underwear. I panicked that I'd never have sex again, never have children. A few endless days later, I called for my results. "It's worse than I thought," the doctor said in a disarmingly calm voice. "You have precancerous cells in your cervix. They're at the severe dysplasia stage."
      "And, um, what is it from?" I asked, though I knew full well.
      "HPV," he said. "It's sexually transmitted." The note of disdain in his tone was almost imperceptible, but it wasn't my imagination.
      Suddenly I was a cliché. A statistic. A bad girl. Worse, a stupid girl. One who'd been privileged enough to grow up in an era of openly discussed sexuality, who'd been blessed and bombarded with safe sex education over a decade of schooling, and yet who had managed, still, to contract herself an STD. So much for sexual liberation. I was a grown woman, a professional journalist, on the phone with a grown man, a medical doctor, but I felt the same shame and embarrassment I'd experienced at age ten when my friend's mother had walked in on us watching adult access TV.
      Beyond the humiliation I felt, though, was a nagging sense that my mind and my body were leading separate lives. How could there be something potentially malignant growing inside me, without my having felt it or known about it?
      The next step, my doctor said, was a cone biopsy, an ambulatory hospital procedure performed under general anesthesia. Through the vaginal opening, they cut out a cone-shaped section of cervical cells, removing the abnormal tissue and killing the virus. He said I was lucky to have caught it early enough. "How old are you?" he asked. "Twenty-eight," I told him. He said he'd just performed a hysterectomy on a twenty-five year old. There was no need to come in immediately nothing was going to change in a matter of weeks, but still, he said, I should schedule my surgery as soon as possible, mostly so I wouldn't sit around worrying about it.
     
More than seventy percent of people will come into contact with HPV during their lifetime. The human papillomavirus exists in more than one hundred different strains, two of which numbers six and eleven produce the STD genital warts. Warts are a nuisance, but they're treatable and external, and they don't lead to anything more severe. There is no cure for warts no cure for HPV of any sort but there are means of removing the warts themselves, including new topical ointments that prod the immune system to fight them off. Most important, warts are visible. In most cases, you know when you've got them. Which is not true for the dozen or so strains of HPV that lead to cancer. Of these, the most important strain is HPV sixteen, which is associated with half of all cases of cervical cancer.
      A New Yorker article about HPV which, strangely, I'd read just a few weeks before my own diagnosis, and which had terrified me and most other women who read it told a tragic story of a young married woman whose doctor found abnormal cells in her cervix, and by the time she was treated it had evolved into full-blown cancer. She underwent treatment and seemed to be fine, but a year later they found it had spread to her spine, and shortly after that, she died.
      My situation was okay. I could handle it. "Precancerous," like "abnormalities," could mean a lot of things. The important point was, it was "pre." Meaning not. But also meaning not yet. How soon might the "pre" disappear? I called my mother. "I'm dying," I blurted. She started to laugh, waiting for whatever melodramatic and minor problem was sure to follow my drama queen opener. And then I began to cry. "No, honestly, I'm dying! Of cervical cancer," I sobbed, believing every word of it. "I've got severe dysplasia. Precancerous cells. I have to have surgery." The phrase was hollow, meaningless, just a thing people said. I had only ever been to the hospital as a visitor.
     
Many women have non-wart strains of HPV, never know it and are never the worse for it (except that they might be transmitting it to their partners). Their bodies fight off the infection before it does any real damage. Two recent studies screened sexually active women at regular intervals and found that, among the women who at one point or another tested positive for HPV, seventy percent of them eliminated the virus on their own after twelve months, and ninety percent eliminated it after two years. Which is good news for the general public. But, unfortunately, it didn't make much difference to me. Because I was the one in ten women who hadn't managed to get rid of the virus. And it had thrived. And now it was mutating my cells.
      I had been for a regular pelvic exam a year earlier (and on schedule annually since I was eighteen). This meant the cells had mutated fairly rapidly, since the Pap smear had been normal the last time. But according to my doctor, I might have gotten the virus as far back as college, a decade ago. By the time cell abnormalities occur, the virus has generally been incubating for months or years. So which past partners would I need to tell? That same New Yorker article, criticized for being alarmist, raised the legitimate specter of HPV as a potentially inescapable virus, arguing that condoms offer only partial protection, since they don't cover the penis in its entirety and since, theoretically, you can contract HPV without penetration. Unlike HIV, HPV is transmitted topically, through simple contact with infected genitals. Was I obligated, then, to tell every guy with whom I'd had genital contact since I was eighteen? Or just those I'd had actual intercourse with? Or just those who'd been condom-free?
      I called my doctor, hoping for guidance. "I was living with someone until about five months ago," I told him. "We went out for four and a half years. Is it likely I got it from him?"
      "Did you have sex without condoms?" my doctor asked. There was that tone again.
      "We lived together," I said, furious at what he seemed to be implying.
      "You should use condoms until you're married," he said matter-of-factly.
      Does HPV suddenly disappear at the altar? I wondered. What did marriage have to do with it? "So let's just say it was him, right, and at some point we get back together and get married assuming I survive the surgery." I waited for him to chuckle, but he didn't. "Can't he re-infect me at any time, if he's carrying it?"
      "Yes."
      "So what should we do?"
      "Use condoms until you're ready to have a baby."
      Right.
      "Okay," I said, "what about other partners? I've been dating someone else since July. Is it possible I could've gotten it from him?"
      "Possible, maybe. But highly unlikely."
      "But I could have given it to him, right?"
      "Yes."
     
In the end, I broke the news to three people. They all took it well, though one seemed a bit overly concerned with how it might affect his future sex life. Or maybe I was being too self-centered. They should be worried about it, after all. HPV has long been viewed as a woman's disease, largely because of its link to cervical cancer. (The virus can lead to rectal cancer in gay men who have anal sex with HPV-infected partners. And a recent study by researchers in Sweden found a slightly higher risk of penile and rectal cancer among partners of HPV-infected women) But it's crucial to note the dangerously under-emphasized fact that while the disease produces no known symptoms in the penises of men who are carrying it, being a carrier is a pretty hefty responsibility to bear. Which is something that, unbelievably, none of my partners' doctors seemed to understand or even care to discuss.
      One doctor, whose nurse had, alarmingly, never heard of HPV, told my friend there was no point in even testing him, as nothing could be done if he was indeed carrying the virus. "He was completely blasé, almost annoyed that I was asking to be tested," my frustrated friend told me that evening. "I asked what I should tell my future partners, and he said that women should get checked regularly with a Pap smear and that's that." In other words, it's the woman's problem. Sorta like birth control.
      The trouble is, there's no real way to test men for the virus. A simple test in which a vinegar solution is applied to the penis and subsequent white spots indicate the presence of HPV doesn't reveal the presence of the virus unless there are visible genital warts, and even then can often miss them. A new screening procedure being used in the case of some women with borderline Pap tests can detect HPV in women, but the medical community is in the midst of fierce debate about the test's merits. Many believe the screening is not worthwhile or cost effective, since the presence of abnormal cells detected by a colposcopy virtually assures that a patient is infected with the virus. And the test is not yet being used on men.
      Dr. William Ledger, professor and chairman emeritus of OB/GYN at New York Hospital, believes that men probably eliminate the virus as frequently as women do, but he admits that until as recently as the last six months, he also viewed HPV as a woman's disease. He is now convinced that just isn't true and that the entire strategy for combating HPV may soon change. Ledger believes the medical community has wrongly approached and treated the disease. "We're right on the cusp of revolutionary changes in the way we think about HPV and cervical cancer and the way we treat it," says Ledger, who recently published a paper titled, "Isn't it time to recognize and treat cancer of the cervix as an infectious disease?" "Everything we've done in the way we think about cervical cancer and HPV infection is traditional thinking, and I think it's wrong." Within five years, according to Ledger, there will be far less reliance on the Pap smear, which only picks up cell mutations meaning that it identifies the virus only once it's already doing harm. Doctors may rely on sophisticated polymerase chain reaction (PCR) screening, now in research, to detect the virus's presence much earlier.
      In the future, HPV will likely also be treated medically. There are several drugs in development, including one that may eliminate the need for colposcopies and cone biopsies in many women. "It is very interesting," Ledger says of the drug, similar to a topical ointment now being used to treat warts, "because instead of killing the tissue that has the virus, it causes the patient's own immune system to produce more interferon and then get rid of the virus."
     
For me, however, there was only one option. As it turned out, the surgery itself was no big deal. The last thing I remember I was lying on the table in the operating room, with the anesthesiologist holding my left arm. A female doctor standing a few paces beyond my feet said, "My name is Susan. I went to school at Brown. You probably won't remember me telling you this." And then I was in the recovery room, nauseated and unbelievably groggy. After that, I bled for a couple of weeks; during the first week it felt like I was losing liters of blood each day. And there was no sex for a month and a half nothing at all to be inserted in the vagina, meaning no tampons. I lay on the sofa watching movies, gushing blood onto a pad.
      Eventually, of course, the bleeding stopped. And even the six weeks of no actual sex turned out to be not such a bad thing after all. Restrictions breed creativity. When I did finally have sex again, it took a few times before it felt normal or natural. I was uncomfortably focused on what might be going on internally, so that sex felt a bit, in the beginning, like another invasive medical procedure. But that, too, passed. And so far, the virus has not returned. On my last visit to my doctor, I asked him if he thought people should be more concerned about HPV, particularly since so many men might be carrying it without their knowledge. He shrugged his shoulders. "Condoms," he said. "Until you're married."





©2000 Hillary Rosner and hooksexup.com
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