Editor’s Note: This post was supposed to be a tongue-in-cheek look at anal pap smears. I sent it off to my own editor weeks ago; we were going to run it for print in another publication. I pulled the piece this afternoon after receiving a call from my doctor and realizing, it all needed a rework. My anal pap smear wasn’t a journalistic experiment, it was a heartbreaker.
I never had a pap smear that came back abnormal before they caught my cervical cancer. When I was told I needed an, “HPV” test, I had never heard of that term. 7 years later, I think of HPV and its effects daily. I was robbed of my fertility. A budding career. I had to work harder to make up for lost time and to pay off medical bills as my insurance cited my cervical cancer’s 2010 and 2012′s reoccurance as a, “pre-existing condition.” After my multiple-time battle with cancer, I thought I was in the clear.
I’ve become a fierce advocate for co-testing pap smears and HPV tests. If medical care teams and patients can understand their risk, better outcomes happen far more often. The American Congress of Obstetricians and Gynecologists announced new screening guidelines in 2012 that suggested co-testing with the pap smear and HPV test can benefit certain women. Additionally, yearly pap smears for women not otherwise having a prior abnormal pap smear wasn’t suggested moving forward. I understand the methodology behind the suggestions and I truly welcome the conversation around HPV testing. Roche’s research around HPV testing is solid. I’m grateful that we’re finally discussing it.
This is exactly why I didn’t stop when I was asked to write a piece on anal pap smears from a first-hand account and couldn’t find a single clinic what was willing to do one, until I found Clinic Sofia in Edina. I was asked point-blank why I felt I needed an anal pap smear. I had no symptoms. I wasn’t sexually active in that way. I didn’t have HIV/AIDS. I wasn’t a homosexual man. All I had was a prior history of cervical cancer and reoccurances and the feeling that someone, somewhere could benefit from the knowledge of how easy an anal pap smear was. Most clinics didn’t offer the procedure and when a clinic did, I was refused the procedure. I called Fairview Health Services and they didn’t have any doctor who could perform anal pap smears. “They aren’t typically done in our office,” I was told. Park Nicollet asked me what anal pap smears were. When I called Planned Parenthood, (who I am such a vocal advocate of,) I was told the following by their Communications Director, (Editor’s note: Jennifer emailed me on 2/9, requesting more information. She stated she felt that since I didn’t clarify that I was asking for my personal health, her quote may not apply and it is Planned Parenthood’s very mission to help every individual find care. Jennifer let me know that they could have reached out to a provider on my behalf. I had already called 2 of Planned Parenthood’s clinics, (Apple Valley and Minneapolis,) seeking whether or not they could do an anal pap smear. I was told that they did not have the resources available and they referred me to my regular OBGYN. It was then that I emailed Jennifer asking why I was told they didn’t provide anal pap smears. I was lucky to have Jennifer’s email- but an ordinary individual probably would not. They would have relied on a clinic to find out more about an anal pap smear. You can see the entire conversation now below.)
From: Jennifer O. Aulwes
Sent: Wednesday, January 07, 2015 3:11 PM
Subject: RE: Minnesota Federal Court Rules Against Essential Birth Control Coverage
We don’t plan to offer them in 2015. According to our physicians, there’s still insufficient evidence to support universal screening with an anal pap, even among-high risk groups. In addition, The CDC, among other national medical orgs, do not recommend routine anal paps. (High risk groups for development of anal cancer would be MSM patients, HIV+ patient, and immunosuppressed patients with solid-organ transplantation.)
If a patient were to request one, or have a history that indicates one, we would refer them to a physician who specializes in anal dysplasia/disease.
I hope this helps!
From: firstname.lastname@example.org [mailto:email@example.com
Sent: Monday, January 05, 2015 10:14 AM
To: Jennifer O. Aulwes
Subject: Re: Minnesota Federal Court Rules Against Essential Birth Control Coverage
Question: None of your MN locations will do an anal pap smear. Is this going to be introduced as an offering in 2015? I’m working on a piece for _____ and ______. Deadline asap. (Editor’s Note: Blanks are outlet names.)
How is it possible that only one clinic would take my health concern seriously? What started as a simple piece to encourage anal pap smear testing, was turning into a political debate. This piece was simply to ease the trepidation around the infamous anal pap smear- I was not prepared to deal with the thought that my anal pap smear could indicate the possibility of cancer. Today, in a single moment, that all changed. High-grade cellular changes. High-risk HPV. Clinic Sofia used every trigger word from my mental list. I was hysterical as they calmly helped educate me and get me in to meet with a rectal surgeon. I livetweeted my anal pap smear, for God’s sake. I had plans to tell you how it was one of the most non-invasive things I’ve ever had done. Almost painless. It made me feel like I was a step ahead of cancer. For once, I had the upper swab.
6 days earlier, they told me my results were fine. I celebrated with a trip to Disney. And more tweeting. Finally, my body had done it- it had scared my HPV into dormancy. I imagined myself as strong and powerful. I could actually begin to contemplate feeling whole again. Today, the nurse said, “I misread the results. When I read your cervical pap smear results, they were clear. You do not have an active HPV infection in your cervix. Your pap smear was normal. However, we hadn’t received your anal pap smear back and I thought the all clear was for both.” She was kind. I was angry. A lot can happen in 6 days.
My body is becoming medical waste. First it was my cervix. Then my ovaries, uterus, fallopian tubes and about 1/3 of my vagina. For all the times I’ve jokingly mentioned that I could lose a good portion of my behind, I never thought it would happen sans diet and excercise, or a miracle, and I never imagined I would be facing colorectal surgery because my HPV infection had spread to my anus. Anus. I’m actually typing anus and cancer in the same sentence- that too, seems unbelievable.
I realize the ridiculousness of my first question to my doctor only now. “How can it be that I don’t have any of the warning behaviors, I’m not sexually active in that way. Can I even GET HPV there without doing anything?” Her answer was yes. My next immediate thought made me ashamed just moments after it left my brain. Did this make me a slut?
Certainly, anal cancer after cervical cancer doesn’t help my cause, does it? I’ve been explaining all along, that I never slept around and I received routine pap smears. I shouldn’t have had cervical cancer- the scientific studies and SEER index numbers prove, I am an anomaly. For years, I was vocal about making great choices, but still getting cancer. I was more concerned about how I was perceived than how my words of being so vocal about my cancer case affected others. It dawns on me now that even if I had slept around, had an extensive amount of anal sex and still had cervical cancer, I would be no less to blame. Cancer isn’t justified because of our life choices. I’m hard-pressed to look at any smoker in the eye and state, “you deserve cancer.” I once judged others so harshly, it’s difficult to know I was a person that genuinely thought life was black and white only ruled by cause and effect. My cancer has given me a deeper empathy. There is no longer judgement allowed- especially with another’s journey.
Human sexuality is segregated into a corner where we must never discuss it, but we must always project it. HPV-related cancers struggle from across the room with the same stigma. We must address why HPV-related cancers, (oral, anal and throat) are rising. Society’s inability to treat HPV-related cancers with anything but a slight mention in the media or vaccine debate is hurting innovation and the ultimate payback to this disease: A cure.
For me, I’m a bit back at square one. 7 years ago, I was in this exact position with another pap smear gone horribly, horribly awry. I trade my terms now- anal cancer and precancer have different terms than cervical cancer. I am a kinder and more insightful individual now, capable of dealing with it all- but angry just the same.
The real questions are: Why aren’t we more welcoming of people who are vocal advocates for their health? Why are we refusing anal pap smears for individuals that ask? Why aren’t we funding HPV-related cancers at the same rate of its less deadly counterparts?
Most of all: When will we be able to have a serious and frank discussion around HPV and the stigma that surrounds this disease?