June 22, 2020

Women with Anal Cancer: ‘The Invisible Victims of HPV’

Michele Longabaugh, tireless advocate for patients with anal cancer, passed away on June 10.


By Emily Ortman, SWHR Communications Director

When Michele Longabaugh told people she had anal cancer, they would typically respond in one of two ways: Either they would be at a loss for words, or they would ask, “How did you catch that?”

Anal cancer is incredibly stigmatized — sometimes even by the patients themselves. When Longabaugh, a registered nurse, was told her diagnosis for the first time, she said “shame washed over me.” But she and other patients shouldn’t have to feel that way.

“The best thing we can do to erase stigma is talk about it,” Longabaugh said. “Putting a face to an uncomfortable cancer is really what is going to make changes.”

Longabaugh passed away on June 10 at age 57, one week after sharing her story at SWHR’s virtual roundtable to identify unmet needs and knowledge gaps for HPV-associated diseases. It is estimated that more than 91% of anal cancer cases are caused by human papillomavirus (HPV).

“Anal cancer victims are the invisible victims of HPV — especially women,” she said.

Anal cancer is rare, with an expected 8,590 new cases in the United States in 2020. However, 66% of cases occur in women and disease incidence is rising, especially in older white and Black women, as well as younger Black men.

The increase in anal cancer cases “is not a phenomenon of better recognition or screening,” said J. Michael Berry-Lawhorn, MD, an anal cancer specialist and co-director of HPV-related clinical studies at UCSF. Anal cancer may surpass cervical cancer to become the leading HPV-related disease in older women if current trends continue, he said.

Women are at higher risk for anal cancer if they have HPV, are HIV-positive or immunocompromised, or have a history of genital warts or cancer or precancer in the cervix, vagina, or vulva. However, Berry-Lawhorn stressed that there is a need for increased awareness that anal cancer can occur in the absence of risk factors, as in Longabaugh’s case.

Not only does anal cancer occur in a body part that many consider taboo to talk about, but most cases are caused by HPV, a sexually transmitted virus that carries its own stigma, despite the fact that about 80% of sexually active people contract HPV at some point in their lives. Most people with HPV do not know they have it and do not develop related health problems.

Longabaugh emphasized the importance of ending the stigma associated with anal cancer — both among members of the public but also among health care providers. Berry-Lawhorn agreed: “We as providers need to make sure we are far more sensitive and are not adding to the stigma but are working very hard to remove it.”

When Longabaugh first developed symptoms in 2009, she thought they were caused by hemorrhoids and did not understand the severity of her persistent symptoms such as anal bleeding and itching. Neither did her primary care provider, who prescribed her a cream to manage symptoms without examining her.

“We do a very poor job of evaluating symptomatic patients,” Berry-Lawhorn said. In addition to anal bleeding and itching, other symptoms of anal cancer may include anal pain or pressure, a lump near or in the anus, and occasionally, abnormal bowel habits (including constipation).

A well-performed examination of the anal canal by gently inserting a finger to feel the walls of the anal canal can distinguish a possible cancer from a normal hemorrhoid, but sadly this simple examination often occurs far too late after someone develops symptoms leading to an unacceptable delay in diagnosis.

Because screening for anal cancer is not a regular part of women’s health care, it is critical that medical providers are adequately educated to recognize this disease. “We need to not only educate providers but also educate patients,” Berry-Lawhorn said. “There needs to be more public awareness so that people can advocate for themselves when things are not feeling right.”

Longabaugh was an outspoken patient advocate, raising awareness about anal cancer and encouraging survivors to speak openly about the disease. “If I was going to go out and I was going to go out ugly, I was going to go out ugly and loud,” she said.

She advocated for educating people about anal cancer so they recognize potential symptoms for earlier diagnosis and treatment, empowering themselves in their health care. The three main treatments for anal cancer are surgery, chemotherapy, and radiation, and Longabaugh described her treatments as “brutal,” with long-term, debilitating side effects.

“Anal cancer treatment when I got it hadn’t changed in 30 years. That is not acceptable,” she said. “The things that are changing, that are on the horizon in research, are a long time coming.”

Longabaugh and other patients and experts at SWHR’s event pointed to the HPV vaccine, first introduced in 2006, as a critical step in preventing future HPV-associated cancers. The vaccine prevents infection from nine HPV strains, including two that cause over 90% of anal cancer.

The Centers for Disease Control and Prevention (CDC) recommends the series of two shots be started at ages 11-12 for both girls and boys. Although the HPV vaccine is proven to be safe and effective, vaccination rates in the U.S. remain low among adolescents.

During the SWHR roundtable, participants discussed the cultural stigma around giving young adolescents a vaccine for a sexually transmitted infection. They advocated for framing the issue from a public health perspective because vaccinating both young men and women as part of routine health care will help create herd immunity against cancer-causing strains of HPV and therefore prevent cancers for both sexes.

Michele Longabaugh was a wife, mother, and tireless advocate for patients with anal cancer and other HPV-related diseases, and SWHR will work to address the disparities and education gaps that she brought to light in our roundtable event.

“She truly was inspiring and her activism helped so many,” Berry-Lawhorn said. “It is important that we carry on what she started in order to honor her life and achievements.”

For more information, visit the Anal Cancer Foundation.