In 2008 a vibrant and healthy 51-year-old mother of three named Paulette Crowther underwent a routine colonoscopy, and received bad news: A malignant mass. The diagnosis was unexpected, because Paulette was fit and health-conscious, and even more so because the mass turned out not to be colon cancer, but anal cancer, which strikes fewer than 6000 people each year. Even worse news soon followed: The cancer was already stage 4. "It was a shock, because she didn't have any symptoms at all, and was feeling great," says Paulette's daughter Camille Almada, 23.
Despite an unfailingly positive attitude and immense love and support from her children and a large circle of friends, Paulette passed away last April. Her children, Camille and her brother Tristan, 25, and sister Justine, 27, immediately started a foundation, the HPV and Anal Cancer Foundation, with the goal of preventing what happened to their mom from happening to anybody else. "Anal cancer is extremely treatable, and never needs to get to a point where you would even call it cancer, but as of now there's no routine screening for it," says Tristan. Adds Justine, "Also, there were very few supportive resources out there for our mom, so we want the foundation to provide information and support for people with this disease."
What's acutely tragic about these young people's loss is that their mom's cancer was likely very preventable. 80-90% of anal cancers are caused by HPV, the same virus that's responsible for cervical cancer. Cervical cancer rates were slashed once women began receiving annual Pap tests—when these routine tests detect pre-cancerous cells on a woman's cervix, she's treated and monitored so that cancer never develops. But HPV can also infect anal tissue, and there's no recommended screening test for detecting it.
Paulette had been treated for cervical dysplasia way back in her 20s, but her Pap tests had been normal ever since, and she'd long forgotten about it. But it's possible that the HPV virus that caused the abnormal cells on her cervix decades earlier is what caused her anal cancer.
So with the HPV and Anal Cancer Foundation, and its well-designed, info-packed website, Paulette's children are raising awareness about how this disease can be prevented. Here are some of the key points that they want you to know:
- The "typical" anal cancer patient is a mid-life woman (not, as many people think, a man who has sex with other men, though they are at increased risk). Actress Farrah Fawcett died of the disease last year, at the age of 62. "It's really important to emphasize that the average person is in fact a female in her late 50s, early 60s," Dr. Cathy Eng, a gastrointestinal oncology professor at M.D. Anderson in Houston told the New York Times last month in an article on the Almadas and their foundation.
- If you've ever been treated for cervical cancer, or precancerous conditions like cervical dysplasia, or if you've ever been diagnosed with HPV strains 16 or 18 (the two strains that are linked to cancer) you may be at added risk, and should talk to your doctor about it.
- The symptoms to look for: Rectal bleeding or blood in stool, a feeling of fullness or pressure in your anus, strange lumps or discharge, swollen lymph nodes in your groin and significant changes in your bowel movements. If you experience one or more of those symptoms, see your doctor right away.
- Beware of persistent "hemorrhoids." "We've heard a lot from patients that their anal cancer was misdiagnosed as hemorrhoids," says Justine. "If you have hemorrhoids that don't go away definitely ask your doctor if it could be a precancerous lesion or even cancer."
- The medical community hasn't agreed upon a way to screen for anal cancer, but there are a variety of possible tests. The simplest is a digital rectal exam (ie the doctor's finger), but if you're worried you might also ask about an anal pap smear or a high-resolution anoscopy (HRA) exam.
Talking to the Almadas, I thought of my numerous girlfriends who've been diagnosed with HPV and treated for cervical dysplasia and how they probably don't know that they're at increased risk of anal cancer. Since HPV has become so widespread, it's likely that anal cancer will become more common too—and although it's still rare, the disease is increasing by 2% each year. But hopefully the HPV and Anal Cancer Foundation, and the Almadas' commitment to saving other people's mothers, will prevent that from becoming the case.