Raising Awareness About Anal Cancer

For nearly two decades, the mention of Erin Sullivan-Wagner’s battle with cancer could quiet a room.

Back in late 2007, the Iowa mother of four started noticing some blood on her toilet paper. Initially, at 48, she assumed it was just hemorrhoids—a common issue affecting many middle-aged and post-menopausal women.

However, over the span of a month, the situation grew worse. By December, the blood was seeping through the paper. “I knew it wasn’t just a hemorrhoid,” recalled Sullivan-Wagner, now 66.

After undergoing numerous tests, including a colonoscopy and CT scan, she was diagnosed with stage one anal cancer in January 2008. This was just months after Charlie’s Angels star Farrah Fawcett revealed her own diagnosis.

Interestingly, more than 90% of anal cancer cases are linked to the sexually transmitted infection HPV, which can affect people of all genders. Approximately 40% of Americans currently have some form of HPV infection.

At that time, anal cancer was primarily viewed as a condition affecting gay men, creating a stigma around discussing it. Research suggested that men who have sex with men are 20 times more likely to be diagnosed.

Sullivan-Wagner recalled her colorectal surgeon noting, “I used to only see this in gay men. Now I see it in women your age.” She found those words hard to process, worried about how to discuss this diagnosis openly.

Once diagnosed, she felt as if she lost her ability to speak up for herself. Her surgeon’s observations were accurate—recent trends indicate that anal cancer is increasingly affecting American women over 50.

Each year, about 10,000 Americans are diagnosed with anal cancer. Around 70% of them are women, and it claims nearly 2,200 lives annually, with risk being about one in 500 according to the American Cancer Society. It makes up just 0.5% of all new cancer cases.

From 2001 to 2015, the incidence of anal cancer rose by an average of 3% every year. Interestingly, federal data show a 46% increase between 2005 and 2018, largely among older women.

The culprit for 90% of anal cancer cases is HPV, which comes in over 200 strains. About 30 of those affect the genital region, with types 16 and 18 particularly associated with anal cancer. The virus can disrupt normal cellular processes, leading to precancerous conditions.

In Sullivan-Wagner’s case, doctors believe the HPV that triggered her cancer had been dormant for over 20 years.

HPV is also linked to various other cancers, including cervical and throat cancers. While the HPV vaccine can prevent around 90% of infections, it wasn’t widely available until 2006 and was mostly offered to younger women.

At the time, anal pap smears weren’t common either. Many current patients didn’t receive the HPV vaccine when they were younger. Rewari noted that care has improved, with doctors becoming more alert to symptoms and high-risk patients.

Sullivan-Wagner remarked on the stigmatization she faced. Her children, learning in school that HPV “only happens to promiscuous people,” felt embarrassed discussing her condition. Often, she had to whisper when sharing her diagnosis, and her kids would ask for different terms to avoid saying “anal.”

“They felt shame about this,” she said.

After her diagnosis, she underwent 25 rounds of radiation and chemotherapy, which ultimately left her cancer-free about six months later. “It was very survivable,” she noted, though treatment did leave her with lasting effects.

The radiation caused scarring in her anal canal, which led to issues with bowel control and made penetrative sex with her husband, Steve, impossible. Doctors indicated that this trauma could affect her vaginal walls, causing discomfort during intimacy.

This situation generated tension between the couple. While Sullivan-Wagner wanted to find a way to make their intimacy work, Steve was wary of causing her pain. “It was really an all-time low,” she reflected. The separation in 2016, though temporary, stemmed from their struggles, but they reconnected in 2019.

Despite trying various therapies and medications, Sullivan-Wagner discovered that the damage to her vaginal walls was permanent, leaving their intimate lives changed forever. “That connection with one another—it’s one of those ‘dying wishes’ for Steve, just one more time,” she said. “For me, the loss was about what it meant for our overall relationship.”

Her experience led her to establish the non-profit After Cancer, which aims to improve communication about the sexual side effects of cancer treatment between oncologists and patients. “I teach doctors how it should have been handled for me,” she said, advocating for sexual health to become a standard part of cancer care.

She urged patients facing similar symptoms, like rectal bleeding, to reach out for medical help, emphasizing that early detection is key. “Even though it feels like the worst thing ever,” she noted, “it does get better. You survive that.”