Mayra Oliveras, 42, can smile now—she has completed a major medical makeover. It all started when she had warts removed from her vulva (the vagina's outer lips). But when they returned, two years ago, “I didn't take care of it, because I was scared” (of surgical pain), she says. A year later, doing a three-month stint at New York City's Rikers Island jail, she was overcome with vomiting and severe rectal pain. When she finally worked her way through the prison medical system to a doctor and then a gynecologist, “they were amazed,” she recounts. “I had a tumor the size of a cauliflower from my rectum to my vagina.” After losing dangerous amounts of blood, Oliveras was sent for surgery to remove her anal canal—she now uses a colostomy bag. Analysis of the tumor showed advanced cancer. She completed three months of radiation and chemo in January, and a new scan showed that only a very small amount of the tumor remains.
Blanche Wynn, another New York City HIVer, woke up one morning in July 2003 with a pain in her right leg—so bad that she couldn't move it. Rushed to a hospital and given X-rays, Wynn, now 41, recalls, “The doctor said, ‘A piece of your pelvic bone is missing.'” A biopsy showed vulvar cancer had spread to her pelvis. “A cancer doctor told me, ‘The only thing I can do is make you comfortable.' I said, ‘Who's dying?' I wasn't giving up that easily.” Over the next four months, Wynn endured 38 radiation treatments, which zapped most of the cancer. A recent full-body scan found a small tumor, and she's bracing for more treatments.
Like Oliveras, Wynn had undergone surgery to remove vulvar warts—but her sporadic drug use had kept her from getting follow-up treatment. Wynn's doctor, Barbara Zeller, MD, says, “By the time she got treated, the cancer was far advanced.” Zeller, longtime medical director at Project Samaritan AIDS Services Inc., a Bronx residential facility for recovering PWA drug users where both Wynn and Oliveras now live, says she hadn't seen a case of anogenital cancer for years. This year, she has already treated three.
Despite great progress in slashing opportunistic infection rates among HIVers using HAART, all cancer, not just anogenital, is becoming more common—for reasons still under debate (see “Cancer Rising,” POZ, July 2004). Among all men who have sex with men an increase in anal cancer has been well documented. And studies suggest that cancers of the anogenital tract in particular—cervical, vulvar and vaginal in women and anal in both men and women—though still rare, may be increasing as HIVers are living longer. Statistics on anogenital cancers, including vulvar cancer, vary, but most underline some basics: The cancers are rare but more common among HIVers than neggies, your risk rises as your CD4 count falls and viral load rises—and they are preventable.
Most sexually active adults carry the main cause of anogenital cancers—human papillomavirus (HPV; see “Genital Hospital,” February/ March 2004). Condoms provide only partial protection, because HPV spreads easily by skin-to-skin contact. Like many other bugs and germs, HPV wreaks more damage on HIVers than on neggies. J. Michael Berry, MD, a specialist in anogenital cancers at the University of California San Francisco School of Medicine, says HIVers have higher rates of HPV and its precancerous growths than negative people.
The standard treatment for cervical and vulvar cancers is surgery—removal of the uterus (hysterectomy) or cervix or of most or all of the vulva—with radiation and chemo as alternatives. In anal cancer, radiation and chemo are often preferred, since this treatment has a high cure rate (58 to 89 percent) and avoids removal of the anus. In immune-suppressed women, like Oliveras, tumors sometimes grow so large that surgery becomes essential.
Any cancer treatment can hit HIVers especially hard—it “really whacks your immune system,” says New York City anal surgeon Stephen Goldstone, MD. “The complication rate in HIV positive people taking chemo or radiation may be twice that of HIV negatives,” he says, adding, “the earlier you catch [cancer], the less severe the side effects.” Chemo often produces nausea, vomiting, mouth sores, anemia (low red blood cells) and neutropenia (low white blood cells)—conditions HIVers may already face.
The risk of serious side effects is greater in people with fewer than 200 CD4 cells. Roger Waltzman, MD, an oncologist at St. Vincent's Comprehensive Cancer Center in New York City, says, “For people whose HIV is not well controlled, these treatments are more difficult to endure”—and cure rates are lower. “There's a greater risk of infection,” he adds. UCSF's Berry argues that “the benefits of treatment are worth the price of the side effects,” and that HIVers should “customize” therapy, not avoid it. “The patient might not be able to receive full doses of radiation and chemo because of unacceptable side effects,” he says, though cutting doses may cut effectiveness. Various drugs and treatments can help you tolerate the side effects.
Oliveras, whose CD4 count was 140 when she began cancer treatment, had a particularly rough time. “For those three months, I had a lot of tissue damage, and my skin burned and peeled [from the radiation],” she says. “I blew up real big from fluid. I lost feeling in the bottom of my legs and couldn't walk. I'm getting therapy for it now. I was very scared. I didn't think I was going to make it. I thank God for giving me the faith to go through it.”
Should HAART continue during chemo? “My sense is it should—to control HIV,” Waltzman says, adding that the primary-care doc, cancer specialist and HIVer must decide this together. Oliveras was nauseated during chemo and had to ditch HAART. “We were able to restart the same meds after chemo and radiation ended—about a month later—and her viral load came right back down,” Zeller says, “though her CD4 cells have yet to recover from the cancer treatments.”
Zeller reflects on Wynn and Oliveras. “This situation really tugs at my heartstrings,” she says. But, Zeller adds, both women are doing well and have good prospects of continuing that way. And Berry says, “Lots of people [have] very good outcomes,” even when radiation or chemo can't be avoided.
There's a lot you can do to avoid anogential cancer. “People at risk should be seen regularly by experienced and knowledgeable doctors,” Berry says. “The real goal is to prevent cancer,” he adds, and if that fails, “to detect it at the earliest stage possible, so it can be treated effectively.” Or, as Oliveras puts it, “Whoever has a little wart on your vagina, vulva or rectum, take care of it.”
Don't Sit on It
Act now to preempt anogenital cancer
Clean up your act: Quit smoking, a known anogenital risk.Take vitamins B 6, C and E, as well as folic acid and selenium daily.
Watch and deal with it #1:
WOMEN: Have annual cervical Pap smears (twice in the first year after your HIV diagnosis).
-If abnormal cells appear, schedule a colposcopy (a lighted microscope views cervix, vagina and vulva).
-A biopsy of abnormal tissue is the best way to detect or rule out cancer.
-These procedures screen for precancerous high-grade squamous intraepithelial lesions (HSILs). If they're found, removal is strongly recommended to prevent cervical cancer.
-Warts; dark, rough or raw areas; a lump; discharge; bleeding; or pain? See your ob-gyn (preferably one with HIV experience) immediately.
Watch and deal with it #2:
WOMEN and MEN (even if you're not having anal sex): Have a yearly digital (finger) rectal exam.
-If high-resolution anoscopy (HRA, like a colposcopy of the anal canal) is available, have a yearly anal Pap smear. If it's not, have your doctor do periodic digital exams. If a Pap finds abnormal cells, schedule HRA and biopsy. If HSILs are detected, see acolorectal specialist. HSILs can be precancerous, says UCSF's J.Michael Berry, MD, and must be monitored and treated, even though most don't become cancer.
-See your doc immediately if you have anal/rectal bleeding, pain or a hard lump or anything abnormal in your anus.
-The prevention message to doctors, Berry says, is: “Stick your finger in, and refer to an anal surgeon if you feel anything abnormal.”
-If you do need surgery, nutritionists say the road to a speedy recovery is paved with protein and calories, a potent multivitamin/mineral and amino acids arginine and lysine to heal wounds and boost immunity.