Paulette Crowther’s three children were grown and she was plotting a midlife career change when a routine colonoscopy picked up cancer, but not of the colon — of the anus.
The diagnosis was a shock. Ms. Crowther, a 51-year-old mother of three from New York City, had had no symptoms and was feeling just fine. It felt like a bolt from the blue. The cancer had already spread.
But as Ms. Crowther and her children scoured the Internet for information, they couldn’t help but wonder whether the cancer could have been prevented, or caught earlier at least.
Some 80 to 90 percent of anal cancers are caused by the human papillomavirus, or HPV, the same kind of virus that causes cervical cancer. And decades earlier, when Ms. Crowther was in her 20s, she had been treated for cervical dysplasia, a condition that often precedes cervical cancer – and is also caused by an HPV infection.
If only she had known.
“We think Mom could have been saved if she’d been monitored and screened more often,” said Ms. Crowther’s oldest child, Justine Almada, 27. “Studies show that if you have cervical dysplasia, you’re at higher risk. At the very least, she should have been made aware of that.”
She added, “Anal cancer is quite treatable if it’s found early.”
The same types of human papillomavirus implicated in cervical cancer, HPV 16 and 18, are also linked to anal cancer. And in December, the Food and Drug Administration expanded the approved uses of the HPV vaccine Gardasil to include prevention of anal cancer and precancerous lesions.
Ms. Crowther — who was fiercely devoted to the brood she raised in Lower Manhattan, largely on her own after a divorce, and whom the children call their “best friend” — died last April. Within three months, Justine and her siblings, Tristan and Camille Almada, ages 25 and 23, had established the HPV and Anal Cancer Foundation.
The foundation’s aim is to raise awareness about the link between the human papillomavirus, an incredibly common sexually transmitted infection, and a whole list of cancers, each of which affects a relatively small number of people but which, taken together, affect tens of thousands. Besides anal cancer, HPV infections are linked to some gynecological cancers, like vulvar and vaginal cancers, certain penile cancers in men and certain head and neck cancers.
With a robust Web site — analcancerfoundation.org — and an expert scientific advisory board, the organization also aims to increase awareness about preventive screening, provide support to family members and caregivers and raise money for research on treatment, which remains limited for metastatic disease.
“What keeps us going is the thought that if someone had done this already, it could have prevented what happened to Mom,” said Camille, who recently stepped in to run the tax-exempt foundation.
The irony is that while Ms. Crowther was still alive, she never told anyone what kind of cancer she had. Experts say that’s not unusual for people with anal cancer, who often are ashamed of their disease. “The assumption most people make is that if you have anal cancer, you had anal sex,” Camille said. “That’s not true. Heterosexual men also have HPV in their anus, because HPV is so prevalent. But also: who cares if you had anal sex?”