Rare Community Profiles: Stigma Stops Anal Cancer Screenings, But Dr. Gary Bucher is Ready to Start Conversations on the Importance of Anal Health

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Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

Stigma Stops Anal Cancer Screenings, But Dr. Gary Bucher is Ready to Start Conversations on the Importance of Anal Health

In 2024, the American Cancer Society estimates that 10,540 people across the United States will be diagnosed with anal cancer. This cancer is rare—but studies and reports suggest that both the incidence of, and deaths caused by, anal cancer have been rising over the past decades.

Despite the rising prevalence, conversations around anal cancer—and anal health as a whole—have remained relatively limited. Dr. Gary Bucher, an anal health provider and leading expert in anal cancer prevention, believes that this may be due to the stigma and discomfort associated with discussing anal health. He shares:

“Patients will assume that pain and bleeding are just from hemorrhoids. Doctors don’t want to necessarily ask questions about anal health or do an anal exam, and patients also don’t usually want to undergo an exam or even talk about it. When anal cancer is diagnosed, it also comes with stigma and a false belief that someone must be having anal sex. But you don’t have to have anal sex to get HPV in your anus; it’s spread by skin-to-skin contact. This stigma, along with the myth that anal cancer is too rare to consider, is harmful because it can lead to delayed diagnosis and treatment.”

In his interview, Dr. Bucher discusses why it’s critical to integrate anal health into the broader conversation of physical and sexual wellness, what puts you at a higher risk of developing anal cancer, and the mission of Anal Dysplasia Clinic (ADC) Midwest, an anal cancer prevention practice founded by Dr. Bucher in 2008.

About Anal Cancer

Before we dive into Dr. Bucher’s work, let’s first understand what anal cancer is—and why screening is so imperative. Anal cancer manifests in the anal canal, a short tube at the end of the rectum through which stool leaves the body, and the perianus, the surrounding outside skin of the anus.

There are factors which heighten the risk of anal cancer development. As Dr. Bucher explains, people at a higher risk of anal cancer include men who have sex with men (MSM) and transgender women living with HIV  (ages 35+), women and men who have sex with women living with HIV (ages 45+), MSM without HIV (age 45+), women with a history of vulvar precancer or cancer, women with a history of other gynecological cancers like cervical or vaginal cancer, people who have had solid organ transplants 10+ years after transplantation, and people taking chronic immunosuppressant drugs for autoimmune diseases like ulcerative colitis or Crohn’s disease. He breaks it down further:

“The standard-of-care guidelines are changing for people with HIV, and they need to be screened. In people with HIV/AIDS, the immune system isn’t recognizing the infection in anal tissue cells. In women with vulvar, vaginal, or cervical cancer, we aren’t sure the exact reason why the risk has increased, but it seems like their immune system also fails to take care of HPV. If you have gynecological cancer, you should be screened within one year of diagnosis. Finally, people with autoimmune diseases or transplant patients who require immunosuppressants to reduce the prospect of organ rejection also have a higher risk of anal cancer starting ten years after transplant.”

Symptoms and Screening: What You Should Know

For these high-risk groups, Dr. Bucher’s outreach focuses on two imperative goals. The first is ensuring that people with a higher risk of anal cancer recognize potential symptoms of anal cancer, which can include:

  • Anal or rectal bleeding
  • A mass or growth in the anal canal or near the anal opening.
  • Anal itchiness or discharge
  • A persistent change in bowel habits, such as chronic diarrhea or constipation
  • Anal pain

Says Dr. Bucher:

“These symptoms really need evaluation especially if they’ve been going on for weeks. What’s hard to get across is that anal precancerous lesions don’t usually have symptoms, and you can’t see these lesions with the naked eye. If you’re at high-risk, doing an anal exam can help with early detection of anal cancer before these symptoms appear.”

Therein lies Dr. Bucher’s second focus in his work: empowering groups that work with high-risk individuals to increase anal health screening and outreach, but also empowering patients to speak with their healthcare providers about anal health screenings—even if the conversations feel scary or uncomfortable. He shares:

“Patients should be their own advocates; they’re the ones who need to push this forward. Find a provider that you’re comfortable with for all of your healthcare needs with whom you can speak about your sexual health. Identifying the right provider should open that conversation. On the provider side, I want providers to know who they should be talking with about this issue. Most people are used to getting swabbed for STDs ; this is similar. There is minimal, if any, pain and discomfort—just 20 seconds of rotating the swab and we’ll know if we need to look further or not.

This is so important because you can prevent anal cancer in early stages, and that prevents the need for treatment. Treatment is rough: chemotherapy and radiation on your anus that can cause scarring and irritation and incontinence. You only get one chance to treat like this, so if the cancer recurs, you have to have a colostomy bag. If you catch and treat early, the survival rate is 70% or longer, but morbidity is high if you wait to catch things. Patients and providers need to have discussions on anal health to address this challenge and improve their outcomes.”

Dr. Gary Bucher: A Background

Patients and providers would do well to listen to Dr. Bucher’s advice. After all, he has been a prominent figure in this space for over 35 years. Dr. Bucher’s career began in HIV/AIDS clinical care and research. The HIV/AIDS epidemic had a profound impact on him; Dr. Bucher lost many friends to HIV/AIDS, which fueled his dedication to contribute to medical advancements in this field.

During the mid-2000s, Dr. Bucher recognized the heightened risk of anal cancer in people living with HIV. He began conducting anal pap smears to screen for anal cancer. People with dysplastic cells were referred for further evaluation. However, routine rectal exams with plain anoscopies  were not sufficient, often missing precancerous or cancerous conditions. Dr. Bucher knew there had to be a better screening method—so he began training to perform high-resolution anoscopy (HRA).

In 2008, Dr. Bucher transitioned out of HIV medicine to focus on bridging the gaps in anal cancer screening and anal precancer treatment. He founded ADC MidWest in Chicago, dedicating his practice to HRA and treatments to improve anal health and to prevent anal cancer. His expertise has only continued to grow.

About ADC MidWest

Anal Dysplasia Clinic (ADC) MidWest is a Chicago-based premier practice and one-stop shop for all things related to butt health, specializing in anal precancer screening and treatment. Founded in 2008 by Dr. Gary Bucher, a leader in clinical care and research with HIV/AIDS patients, ADC MidWest addresses the lack of evaluation and treatment of anal and perianal precancer by providing HRA and HPV related anal disease treatments to high-risk groups.

Dr. Bucher, after setting up a consulting firm called Anal Dysplasia Consulting International, is also helping others setting up anal dysplasia clinics at places like the University of Mississippi and Duke University. He shares:

“The teaching opportunities that we are doing have been fulfilling. It has also been nice to incorporate research into my private practice.”

Improving Anal Cancer Outcomes: The ANCHOR Study

He’s talking about the ANCHOR Study, funded by a grant from the National Cancer Institute (NCI) of the National Institutes of Health (NIH). The study enrolled individuals with High Grade Squamous Intraepithelial Lesions (HSILs) to understand whether routine screening and treatment of anal precancerous cells could prevent anal cancer. The ANCHOR study is considered to be the largest anal cancer prevention study ever performed. Dr. Bucher was one of the principal investigators and his site enrolled nearly 580 participants. At first, he tells Patient Worthy:

“We thought we would have to screen 15,000 people nationwide to get the 5,500 needed to show significance: that treating precancerous lesions would prevent cancer. We screened 10,000 persons and enrolled 4446 participants. We met the primary endpoint earlier than expected because we showed that treating anal precancer decreased the incidence of anal cancer by 57%. We also found 21 screening persons with anal cancer that didn’t have any symptoms and did not know they had it. Further, we’ve collected a huge biorepository of specimens that we can go back to and test for future biomarkers or tests that may help us better diagnose and treat HPV related cancers.

This study was also diverse, which gives us better insight into different groups affected by anal cancer. 60% of study participants were African American. We had transgender women, Latinx, and more. Most clinical trials don’t see diversity like that, but it is necessary to understand the scope of cancer’s impact.

Finally, we did see that participants in the treatment arm developed anal cancer, with an incidence rate of 175 persons per 100,000 person years, compared to 402 persons per 100,000 person years in the non-treatment arm. This just reaffirms to me that we need to find better treatments than what we currently have.”

Dr. Bucher feels hopeful that these results can shape treatment guidelines to be incorporated into clinical care—and that this will translate over to other high-risk groups. At the end of the day, he wants these findings to change the way we approach anal health and anal precancer, and to create less stigma within this space.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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