|Photo © by Russell McGonagle|
The first sign that I was infected with human papilloma virus (HPV). I discovered several little bumps on my anus that turned out to be warts or anal chondyloma caused by HPV, a sexually transmitted infection. I had them removed with acid, which wasn't the most pleasant experience I've had. But then those were the days before HIV, when any "venereal disease" was easily treated and dealt with. It was really no biggie, and the implications of what HPV could do were really not on anybody's radar at the time.
My HIV diagnosis. It was obviously a turbulent time when HIV was hitting the Midwest hard. I was tested for HIV in the only anonymous clinic in OKC. I had no apparent symptoms and there were no further issues with anal warts at that time. But alas, I found out I was HIV-positive. I immediately sprang into action to fight this new and terrible disease by moving to the West coast, the center of the epidemic.
Studying HPV. Ten years after learning my HIV diagnosis I entered a clinical trial studying the (HPV) natural history in gay men. At the time many of my buddies entered the study, wanting to further the research. We also were afraid of anal cancer -- which is caused by HPV -- and this study offered us examinations and diagnosis, and for the first time a better understanding of what might be happening "down there". My buddies and I had been at death's door with HIV, and now we were willing to be a part of anal cancer research. We knew we were at risk for HPV infection and wanted to be as aggressive as we had been with treating HIV. What we didn't realize is that even in 2008 there would be little medical consensus on diagnosis, monitoring or treatment for anal HPV. I continued to be followed in the study until I left the Bay Area for the Windy City.
I came to the Midwest with two diagnoses: AIDS and high grade anal dysplasia. But since leaving the HPV study in San Francisco, I had no concrete plan for follow up for monitoring or treatment. In Chicago my doctors never seemed that concerned, even when I showed them the pathology reports from the study. Despite the fact that there were no symptoms and no apparent progression, I remained confused and puzzled on how to deal with my situation, like the early days of HIV.
Cross country HPV follow-up. I visited the Bay Area, and went back to the UCSF anal dysplasia clinic for monitoring. My HPV had not progressed but there was "concern" from the clinic as to who would follow my HPV progression back in Chicago.
The first signs of cancer. I eventually was referred to a colo-rectal surgeon in Chicago for follow up. He was concerned but unsure about my case. We decided to continue monitoring my ever-changing HPV. Eventually in 2007, a biopsy taken during a routine colonoscopy presented me with a new daunting diagnosis -- anal carcinoma in situ -- which is sort of like a pre-cancer. Once again, I was left with the decision as to how to handle my situation. Surgery or chemotherapy? Wait and see? Or just follow-up in three months? No one could agree.
The big "C" -- cancer. Frustrated, I found my way to the East coast where I begged for another opinion from an expert East coast butt doc who specialized in HPV. I had conducted considerable research in finding him. After a dozen biopsies that left my anus a battlefield, I received a full-blown "superficial" anal cancer diagnosis, in only one of the 12 biopsies. I knew it wasn't something like pancreas or lung cancer, but the fear was still pervasive. HPV had progressed to cancer despite all my efforts to deal with it for the past 10 years. Now I was faced with chemotherapy and radiation, certainly a big blow.
A second opinion. I wasn't sure I needed chemotherapy and radiation since I had very early stage cancer, and a lot of other high grade lesions. Horror stories of being hospitalized due to chemo were enough to make me delve deeper into other options. So the next few weeks got even more confusing. I made phone calls, more appointments and had conversations with doctors back at UCSF, in NYC and in Chicago. I joined anal cancer list serves and spoke to several friends I knew who had been through treatment. There seemed to be no consensus on what to do with me. After all the back and forth I found my way to another colorectal surgeon at Northwestern. I finally decided to have the lesion removed through an out-patient surgical intervention that would be a better option than the toxic chemotherapy and radiation. But the surgery was no cake-walk despite the fact that it was a 15-minute procedure. I was sore for weeks.
What the future brings. As a "patient" I'm not sure being more aware of HPV has been a good thing, especially a disease where the care is sketchy and treatment indefinite. My own HIV advocacy was a totally different story, as I wouldn't be alive today had it not been for all the HIV drugs that I fought for. But with HPV, while I thought I was being proactive, the field of diagnosing and treating is all rather new. In fact, the researchers doing the HPV study at UCSF, Joel Palefsky and his colleagues, are pioneers in the field. It turns out I actually was lucky that I found out about my anal cancer before it was too late.
Over the years that I have dealt with HPV I learned that there is a lot of professional controversy over the best way to diagnose and treat, much to the detriment of people who don't find out until it's too late, or they have to cope through the confusion with less information than I had. I learned that the doctors doing HPV research appear to be more assertive, for good reasons, and some HIV doctors more passive. I knew through anecdotes from clients that some primary care doctors won't even take a look "down there" because "we don't know what to do with HPV." Or they'll prescribe treatments that are painful and not effective. Clearly, much more research needs to be done in this field. And the doctors need to agree to disagree and develop a standard of care for HPV disease for the sake of the patient.
Bottom line is that no matter what your doctor says, demand an anal pap smear. And if they look at you like you told them the world is flat, demand to see someone who will check your butt out. And remember, since we all have anuses and most of us are sexually active, both men and women should be checked.
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