Let’s Talk Anal Cancer: Why I’m Speaking Up

My rare cancer story begins with what I thought was a minor “booty itch.” After all, it was summer and I thought maybe I’d spent a little too much time in my swimsuit. I mentioned it to my OB-GYN, who found a small cut and thought it was likely a fissure. She prescribed a cream, but the itching never went away. Eventually, I started noticing blood in my stool. I kept putting off seeing a specialist because the drive was long and, honestly, I didn’t think it was serious. But eventually, I couldn’t ignore it any longer. 

I made an appointment with a proctologist who asked when I last had an anal Pap smear. I was stunned – I'd never even heard of one. I’d always had my normal vaginal Pap smears, so I didn’t understand why he was asking about an anal Pap smear or what he was inferring? Despite my initial hesitation, he explained and took a few swabs, plus a biopsy since I lived 50 minutes away.

News That Changed Everything

A few days later, he called with news that changed everything: I had stage two squamous cell carcinoma of the anal canal (SCAC), likely caused by the human papillomavirus (HPV). I was shocked, confused and scared. How could I have HPV? It had never shown up on my vaginal Pap test. I’d always been healthy and active — a former professional cheerleader, mom and grandmother. Cancer didn’t fit the picture I had for myself.

I Wish I Had Known

While anal cancer is rare, its risk factors and symptoms are common. Anal cancer shares symptoms in common with non-cancerous conditions, such as hemorrhoids — including pain, itching, a lump or mass and changes in bowel movements. I wish I had known that sooner.

I also learned that 90% of people who get anal cancer have HPV, making it the #1 risk factor for anal cancer. And while I am one of the unlucky few whose HPV led to cancer, it is estimated that at least 80% of sexually active people in the U.S. will be infected with HPV through skin-to-skin contact at some point in their lives regardless of their sex, gender identity, or sexual orientation.

Importance of Caregivers and Community

During treatment, I leaned on my family — my husband and sister were my anchors. I also found The HPV Cancers Alliance, who connected me with Mary, another anal cancer thriver. Mary shared her experience and helped prepare me for the chemotherapy and radiation journey ahead. 

Without my support system, I really don’t think I would have made it through treatment. But they kept reminding me that I’ve faced challenges before, and through them all I dug deep, stayed positive and held onto my faith to keep moving forward.

Shedding the Stigma

Today, I’m grateful to be on the other side of treatment and focused on raising awareness of HPV and its link to anal cancer.

Sure, anal cancer and its symptoms can be an uncomfortable topic. Embarrassment related to body location and the link between HPV and anal cancer can create feelings of shame that patients carry throughout their cancer journey. But it’s so important for people to get comfortable with speaking openly about risks and symptoms with their doctor as there are treatments available for anal cancer, including advanced cases.

If sharing my story accomplishes anything, I hope it inspires even one person to speak up and advocate for themselves. The words anal cancer and HPV aren’t dirty — the anus is just another part of the body where cancer can grow. People need to know the risk factors and symptoms and get comfortable talking about anal cancer with their healthcare teams, friends and family.

It’s time to call it what it is. Together, we can shift the narrative, shed stigma and encourage others to have vital conversations with their doctors.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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