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Surviving Anal Cancer

By Matt Sharp

May/June 2004

Surviving Anal Cancer

Anal health is not necessarily something most people want to think about let alone be proactive about. But in recent years more gay men with HIV have been diagnosed with anal cancer. I can count at least five men that I know of that have had to deal with the disease. One close friend in Berkeley has just celebrated one-year post surgery to remove a cancerous tumor in his anus. It was not a pleasant experience for him or his partner to say the least. His story is representative of the perplexity of anal cancer and issues around screening and treatment. Surviving with HIV is a reason to be proactive about all health concerns, one of those being anal health and sexually transmitted diseases.

My friend Bill is originally from the Bay Area and is in the process of moving again after having lived there since 1991. He is a very dedicated AIDS activist and works on national AIDS vaccine issues with the AIDS Vaccine Advocacy Coalition. Bill was diagnosed with HIV in 1989 and began antiviral therapy in 1992 when not many anti-HIV treatments were available. He didn't have much success with therapy until Fuzeon (T-20) came along. Like many other friends of mine including myself, he enrolled in a University of California at San Francisco (UCSF) anal cancer study in 1992. After 10 years of exams every three months Bill was diagnosed with moderate dysplasia (an abnormal cellular change that can signal cancer). During the study, he also had been diagnosed with high-grade dysplasia. In 2002 the study closed and he stopped being monitored. Shortly thereafter he experienced symptoms of bleeding. He was later diagnosed with anal cancer due to an egg shaped tumor in his anus. It was removed through surgery and he later went on to experience a painful recovery period, radiation treatments and chemotherapy. Bill stated, "my most important failing was not continuing to get the [anal] exams after ending the study. I had symptoms I hadn't been taught to recognize -- especially bleeding, and what I believed were hemorrhoids. And I was misdiagnosed by the first proctologist I saw." Bill's story highlights the complexity and confusion about anal cancer.

Human Papillomavirus (HPV)

HPV is a common virus that causes warts and dysplasia on the skin, mouth and the genitals and can lead to anal cancer. It is one of the most common sexually transmitted diseases among men who have sex with men. According to the Center for Disease Control, there are 20 million people living with HPV compared to 900,000 people living with HIV. In 1994 Joel Palefsky from UCSF found that anal HPV infection is extremely common in gay men, and as CD4 counts decline the prevalence of high-level infection increases. Another of his studies in gay men showed that HIV-positives were more likely to develop the high-grade lesions than HIV-negative men. HAART (highly active antiretroviral therapy) seems to have little to no effect on regression of lesions suggesting that immune reconstitution due to anti-HIV therapy has little effect on HPV. Also, because anal cancer is slow to develop the risk may increase now that people are living longer with HIV. It is another unfortunate paradox of surviving with HIV.

Over 100 types of the human papillomavirus exist that lead to a spectrum of disease from genital warts to pre-cancerous lesions to anal or cervical cancer. Thirty HPV types infect the genital tract. Five of those types have been linked to dysplasia that can cause cervical cancer in women and anal cancer in men and women. HPV can be detected by sight if there are warts, or through pap smears. Yes, gay men can and should receive anal pap smears despite the fact that some doctors and patients are squeamish about performing the procedure.

Sometimes a biopsy is taken with a process known as "high resolution anoscopy" where a scope is inserted into the anus, magnification and a type of acid is used to detect the abnormal cells. Tissue is sent to a laboratory to be analyzed and then graded on severity. This technique of screening is not in widespread use due to lack of clinicians skilled in HPV diagnosis and treatment, and the lack of effective medical alternatives to removal of lesions. Most physicians go by visible signs if they go "down there" at all or they refer patients to proctologists or a surgeon. Unfortunately, some doctors don't consider HPV screening a routine part of HIV follow-up and care. And often surgeons just want to cut without the knowledge of HPV disease progression and follow-up.

If you do get screened and a biopsy is taken you then get a diagnosis with various stages of HPV-associated lesions and cellular changes that are: normal, mild, moderate, and severe to carcinoma. Dysplasia is sometimes referred to as pre-cancer. Cervical or anal intraepithelial neoplasia (CIN or AIN) refers to an abnormal growth within the cells lining the cervix or anus and is graded as warts (condyloma), grade 1, grade 2 or grade 3. Squamous intraepithelial lesion (SIL) also refers to abnormal cell growth in the same areas, classified as low or high grade (HSIL). If left untreated these HSIL growths may lead to cancer that can sometimes be life threatening. However sometimes the HSIL can be stable and not progress to cancer. Many physicians feel this is the reason to simply monitor patients and not treat them. In men if cancer does develop it will progress similarly to cervical cancer in women. The lesions grow very slowly and take years to develop.

Studies have shown clinical and cost effectiveness in HPV screening. It doesn't take a rocket scientist to understand that early detection for cancer should be the standard of care especially in people with HIV. It's a message we've been hearing for years from women with breast cancer and individuals with other cancers. Why should it be any different for anal cancer, especially in a population of people at higher risk?

Treatment for HPV

Treatment for HPV can be as problematic as screening and diagnosis. HPV related warts are easy to remove with cryotherapy, laser removal or special chemicals such as trichloroacetic acid, podophyllin resin or 5-FU. Treatment for dysplasia is trickier because it may be difficult to detect with current tests, someone treated with diffuse (scattered) dysplasia may suffer from long term side effects of removal. Recovery from these treatments can be severe and last several weeks.

The standard treatment for anal and cervical cancer is often surgery followed by radiation and chemotherapy. Anal surgery is, as you can imagine, very painful with a lengthy recovery period. Combination treatments such as radiation, chemotherapy and cidofovir are used in combination with surgery in clinical trials to a positive effect. Reoccurrence with HPV is common, however whether it develops to cancer depends on good follow up and screening. Bill commented on his surgery, "Anal cancer is very treatable if it has not progressed beyond a local tumor. It is basically like skin cancer. The treatments are nasty however and prognosis is only about half as good for HIV-positives as it is for HIV-negatives." Again, early detection and early treatment are highly recommended.

The good news about HPV is there are vaccines being studied for prevention and treatment. The treatment vaccines are based on the proteins that cause cancer in HPV. So far all the vaccines studied are safe, well tolerated and most data so far shows they are clinically effective. Larger studies are underway and more information is forthcoming.

In the absence of an effective vaccine Bill told me, "The final word should be if you have any doubts, don't hesitate to ask [your doctor] because if you bring up the idea of cancer, doctors are obligated to follow up for their own protection."

Gay men need to be more informed and proactive with anal screening for HPV as they have been with the syphilis campaigns around the country, including Chicago. Although anal cancer is relatively rare we may be sitting on a time bomb unless doctors are willing to make anal pap smears a part of routine medical care, and patients are willing to speak out about their own anal health, despite the unease and awkwardness of this area of health care. Besides, no one wants to go through cancer and surgery, especially if they are surviving with HIV. Ask for a pap smear!

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