I have witnessed and taken part in the many changes in HIV care over the past 25 years. At the beginning of the epidemic, silence and fear was the name of the game. It took HIV activists taking control of their health care destiny to force the medical community to treat the disease and the patient.
HIV is now a chronic treatable disease, but it has a whole new set of issues regarding conditions related to premature aging, long-term side effects due to medications, and the development of other problems surrounding long-term immune dysfunction. Chronic anal human papilloma virus (HPV) infection is one such disease that has increasingly become a risk factor for developing anal cancer. HIV-positive people should know about the risk and take charge of getting screened and treated for pre-cancerous lesions.
Being proactive about anal health is another box you need to check off in the quest for optimizing your health. Assessing the anal area may not be any more comfortable for the clinician than it is for the patient, but if not done thoroughly, lots of valuable information can be missed regarding your anal health. There are just as many doctors who are uneasy about discussing anal sex or anal symptoms and performing an annual digital (finger) anorectal exam (DARE) as there are patients who shy away from discussing bottoming, any anal symptoms they may have, or having a digital anorectal exam performed on them. If you aren’t getting an annual anal Pap smear, you should, at a minimum, be getting a thorough digital anorectal exam. If not, you need to ask your doctor for one or both of them.
The DARE needs to be performed slowly and deliberately, with special attention being given not only to the prostate in men, but to the external perianal area and the 1-2 inches of the tissue inside the anus. The clinician should feel for any tender areas, thickened lesions, shallow indentations, firm masses, or other abnormalities. I also ask the patient if they have performed an anal self-exam by using their finger to feel around for any lumps or bumps inside their anus. This can help guide me when I perform the digital anorectal exam.
Anal Pap smears are performed in a similar fashion to cervical Pap smears, with the area being swabbed to collect cells, which are then examined under a microscope. They can detect abnormal cells (anal dysplasia), but the anal Pap smear may be less likely to correlate with the degree of anal dysplasia that can be seen on a biopsy of an anal lesion revealed by high resolution anoscopy (HRA). Because such specificity is lacking, and there haven’t been any evidence-based clinical trials to evaluate anal cancer screening methods in preventing anal cancer, many clinicians feel that anal Pap smears should not be done at this time. However, I agree with other experts in the field who have proposed yearly anal Pap smears for all HIV-positive individuals. If the anal Pap is normal, continued annual screening is suggested. Experts also recommend anal Pap smears every one to two years for other high-risk groups and if normal, continued screening every two or three years. If any abnormal cells are detected, HRA with biopsy is recommended. However, these guidelines may be limited by the need to train a greater number of clinicians in performing HRAs and biopsies. It is also important for these screening tests to be administered in a non-hospital setting, to maximize patient compliance with screening and follow-up.High-risk HPV subtypes, especially 16 and 18, are associated with cervical, anal, penile, vulvar, vaginal, and oral cancers. Cervical cancer is an AIDS-defining malignancy and its incidence has been decreasing with aggressive screening and treatment of pre-cancerous lesions or higher grade cervical dysplasia. Cervical cancer affected 35-40 per 100,000 women in the general population prior to cervical cancer screening and treatment and has now decreased to about 8-10 per 100,000.
Though most genital and oral cancers are caused by high risk HPV, these cancers are not increasing as fast as anal cancer in HIV-positive individuals and other high-risk groups. Compared to the more common lung cancer, penile, vaginal, and vulvar cancers are rare—between 0.42 and 1.8 per 100,000. Oral cancer affects an average of six men and 1.76 women per 100,000.
Anal cancer in the general population is still very rare and affects more women than men. The incidence in men is 1.14/100,000 compared to 1.76/100,000 in women. Individuals at increased risk for developing anal cancer include HIV-positive men and women; HIV-negative men who have sex with men (MSM); women with a history of cervical, vaginal, or vulvar cancer or cervical dysplasia; chronically immunosuppressed organ transplant patients; men and women with a history of anal warts; and people who smoke tobacco. But anal cancer, a non-AIDS-defining malignancy, is increasing in the HIV population and other high-risk groups. The incidence of anal cancer in HIV-positive MSM is now much higher than the incidence of cervical cancer was in the general population before screening and treatment became the standard of care. Some studies have shown that the rate ranges from 70-175 per 100,000 HIV-positive MSM. There is a two-fold increase in anal cancer in HIV-positive women age 40 or older than in women that age in the general population.
Like HIV, there is also a stigma associated with anal cancer compared to other forms of cancer. The most recent high-profile person with anal cancer was Farrah Fawcett and many people did not even know that she died from it. Though screening tests can find early signs of disease in people who are not yet sick, that stigma may keep people from getting screened the same way it keeps people from getting tested for HIV. The fact that there is no consensus from the medical community about the need for anal cancer screenings is an additional obstacle.
The New York State Department of Health’s AIDS Institute is the only body that recommends screening with anal Pap smears and digital anorectal exams. It makes sense to perform anal cancer screening in selected high-risk groups, given the increased rates of pre-cancerous anal dysplasia and anal cancer in these groups. Unfortunately, routine screening guidelines have not yet been established by most major medical organizations, such as the American Academy of HIV Medicine, American Cancer Society, American College of Colon and Rectal Surgeons, or the International Antiviral Society (IAS-USA).
It took about eight years for cervical cancer screening and the treatment of pre-cancerous cervical lesions to become standard of care. There weren’t any controlled clinical trials conducted to show that cancer screening with Pap smears prevented cervical cancer. What was seen over the course of many years is that cervical cancer rates decreased because of screening and treatment of pre-cancerous lesions. High-risk groups for developing anal cancer should not wait to be screened and treated for high-grade anal dysplasia or these pre-cancerous lesions. Take charge of your anal health. Ask for your DARE exam and your anal Pap smear! If you have any abnormality on either, make sure you get a thorough high resolution anoscopy and treatment for any pre-cancerous lesions.