**By David Aboulafia, MD**
Anal cancer is a subject most people would rather not discuss, because of its anatomical location, along with an unfortunate stigma attached to the malignancy. Although tragic, actress Farrah Fawcett’s openness about her diagnosis in 2006 helped create much-needed public awareness during her 11-year battle with the disease, which she lost in 2015 at the age of 62.
Closer to home, a 51-year-old White Center resident named Ed was impressed with Fawcett’s openness and advocacy. He now feels very fortunate that he listened to his physician and decided to have an anal Pap test following many years of HIV (human immunodeficiency virus) treatment and participation in a surveillance program. Despite having put off the screening for a few months, Ed knew that since he had HIV, he was at higher risk for HPV (human papillomavirus) and anal cancer.
The anal Pap test showed cells, which were concerning for cancer, and a subsequent biopsy of a suspicious-looking lesion proved to be cancerous. After additional studies, Ed was diagnosed with early stage anal cancer. The fortuitous discovery in October of last year allowed him to forgo surgery and, instead, receive six weeks of chemotherapy and radiation.
Although his treatment was challenging, the holidays and the month of January allowed Ed to rest and recover. In February, he felt good enough to return to work and subsequently began following a vegan diet, exercising regularly and better managing diabetes and stress. Due to the clarity that accompanied his hardship, Ed said he almost feels lucky to have gone through this experience because of everything it taught him — especially the importance of educating yourself, finding a good care team and learning to be his own best health advocate.
Anal cancer and HPV
Anal cancer occurs when skin cells grow out of control in the anus. The causes and location of anal cancer should not be confused with colon or rectal cancer, which are different.
According to the American Cancer Society, about 90 percent of anal cancers are caused by HPV. It is important to know that there are many strains or types of HPV and not all of them cause cancer. Most cancers of the cervix and anus are caused by HPV strains 16 and 18, while other HPV strains cause genital warts. HPV is the most common sexually transmitted disease and most people are exposed to HPV numerous times over their lifetime.
Thankfully, HPV infection usually goes away on its own. However, when the immune system is damaged by HIV and other causes, HPV infection can last longer and cause changes to the skin inside the anus, which is called “dysplasia.” Over time, some of these HPV-damaged cells – called “High-Grade Squamous Intraepithelial Lesions” or HSIL – can develop into cancer. Although HSIL is not the same as cancer, it is an indication that cancer may develop in that spot at a later date. Unfortunately, researchers do not currently know why some HSIL go away on their own while others worsen and become cancerous.
Who is at risk?
Anyone can get anal cancer, even people who have never had anal sex. However, it is much more common in people who are HIV-positive. For perspective, in HIV-negative people the chance of developing anal cancer is one to two people per 100,000. In HIV-positive people, it is between 30 and 131 per 100,000. (The rate in HIV-positive women is lower than in men.) In fact, even HIV-positive people on successful antiretroviral therapy have a higher risk of anal cancer than HIV-negative people.
The most common risk factors for anal cancer include:
- Infection with certain strains of HPV
- Age (risk increases with age)
- Having a low count of T-helper cells, a type of white blood cell
- For women: a history of HPV-related cervical and vulvar dysplasia and/or cancers
- History of genital warts
Early stages of anal cancer are often not accompanied by symptoms, which means most people are unaware when they begin to develop it. In later stages, the most common symptom reported is pain, which can be felt constantly or only when having a bowel movement or anal sex. Other symptoms can include a lump or bleeding from the anus. Unfortunately, anal cancer is often misdiagnosed as a hemorrhoid. If you are having any of these symptoms, it’s important to tell your doctor.
Like most types of malignancies, the earlier anal cancer is found and treated, the fewer side effects people face from treatment. When caught early, anal cancer usually responds well to treatment. Some small cancers can be removed surgically. However, once the cancer spreads, treatment may require a combination of chemotherapy, radiation and surgery. Removing the affected areas can “cure” anal cancer, but there are often long-term side effects from surgery, radiation and chemotherapy, like needing to go to the bathroom more often.
Research: Virginia Mason, Harborview and The Polyclinic in national screening study
Thankfully, deaths from AIDS are way down. However, anal cancer among people living with HIV is on the rise. Researchers think anal cancer can be prevented by routine screening and removal of precancerous cells. In fact, researchers at Virginia Mason, Harborview and The Polyclinic are participating in a national clinical trial called The ANCHOR Study (ANCHOR stands for “Anal Cancer HSIL Outcomes Research”). This strategy has reduced cervical cancer rates by 80 percent. But to get health insurance companies to cover routine anal cancer screening and preventive treatment, researchers need to prove this strategy prevents cancer.
The best way to demonstrate effective prevention is to recruit people with HSIL into a study, with groups assigned randomly to a treatment arm or a monitoring arm. Researchers will then follow everyone for five years to compare the rates of cancer in both study arms. At the end of the study, researchers will know whether screening and treatment of HSIL are effective strategies in preventing anal cancer. Researchers will also learn a lot about HPV and other risk factors and why these sometimes cause cancer.
If you have any questions about whether this study might be right for you, talk with your doctor and have your provider call a local study site with any questions. For more information about The ANCHOR Study, including the list of study sites and contact information, visit ANCHORStudy.org.
Words of wisdom
Although Ed is not a candidate for participation in The ANCHOR Study, he now understands the importance of screening for anal cancer, especially among people living with HIV. Despite needing to come to Virginia Mason twice a year to be checked to make sure the cancer doesn’t grow back, Ed feels very thankful and encourages male and female friends who may be at risk to speak with their physicians about a Pap test. After all, knowledge is power.
David M. Aboulafia, MD, is board certified in Internal Medicine. His subspecialties include Medical Oncology, Hematology and HIV Clinical Care. Dr. Aboulafia is principal investigator of The ANCHOR Study at Virginia Mason and medical co-director of Bailey-Boushay House. He practices at Virginia Mason Hospital and the Floyd & Delores Jones Cancer Institute (1100 Ninth Ave, Seattle, WA 98101; 206-223-6193).
A version of this article previously appeared in the Seattle Gay News and the Queen Anne & Magnolia News.