The landscape of HIV and cancer care has evolved dramatically since the 1980s and 90s, but one issue remains strikingly consistent: the increasing incidence of anal cancer, particularly among people living with HIV. In the early days, when antiretroviral treatments (HAART) were not yet available, those with HIV often had severely suppressed immune systems, with many having fewer than 50 T-cells, making them highly vulnerable to infections and cancers. Anal cancer, primarily caused by anal squamous cell carcinoma, was one of the risks linked to immunosuppression, and gay men in particular were found to be at a higher risk.

I can speak from experience. Back then, I was fortunate enough to have a proactive doctor who knew exactly how to spot the early signs of anal cancer. My doctor recognized the risk early on because I had a history of anal warts—a common STI—combined with a dangerously low T-cell count. When swollen lymph nodes appeared, signalling inflammation in my body, my doctor acted quickly. He ran pathology tests, and upon receiving the results, he immediately referred me to St Vincent’s Hospital in Melbourne. There, a colorectal surgeon diagnosed me with pre-anal cancer at Stage 1, and after a quick procedure under mild anaesthetic, the lesions were excised. It was a relatively simple process for me, but sadly, this wasn’t the case for many of my HIV-positive friends at the time.

Due to a lack of early screening and treatment protocols, some of my friends’ cancers went undetected until they were in advanced stages, which made treatment much more difficult. In fact, two of my friends have passed away in the past decade from Stage 4 anal cancer. Another friend has faced ongoing issues with anal stenosis—a complication of his earlier anal cancer treatment—and has undergone numerous surgeries over the years.

Max’s long struggle with anal cancer

Max’s journey with anal cancer is a painful reminder of the long-term challenges many HIV-positive individuals face. Diagnosed with pre-cancerous anal warts in 1991, he was already immune-compromised by 1995, with fewer than 50 T-cells. He underwent surgery at Fairfield Hospital, but this was far from the end of his medical struggles. By 1996, the HPV-related anal cancer had returned, and Max underwent radiotherapy. Despite his hopes for recovery, his battle was far from over. In 2004, he was diagnosed again with anal skin cancer, but this time radiotherapy wasn’t an option. Max endured skin grafts, hyperbaric treatment to aid healing, and additional surgeries. Although he enjoyed 17 years with relatively few issues, the scar tissue built up over time led to anal stenosis, rectal prolapses, incontinence, and multiple surgeries. Recently, Max opted for a colostomy, hoping it would improve his quality of life. (1)

Chris’s early intervention and ongoing battle

Chris’s story is one of proactive health monitoring, but even his vigilance hasn’t shielded him from the complexities of anal cancer. In 2012, Chris was diagnosed with high-grade anal intraepithelial neoplasia (HGAIN)—abnormal cells in the lining of the anus. After attending an ASHM Conference on digital exams for anal cancer, Chris took it upon himself to perform a self-examination. When he found a small lump, he immediately sought medical help. The colorectal surgeon removed the lesion, but this wouldn’t be the end of his journey. Chris educated his GP about the need for regular check-ups, asking for an anoscopy every six months. (2)

However, after beginning treatment for rheumatoid arthritis in 2024, which included immunosuppressive drugs, Chris’s immune system took another hit, and within months, he was diagnosed with anal cancer. Thankfully, treatment has improved, and Chris was able to undergo a procedure where the surgeon injected beneath the anal lesions, lifting them off the muscle. He remains vigilant with regular checks to ensure the cancer does not return. Chris stresses the importance of consistent monitoring, especially for HIV-positive individuals and gay men, who are at the highest risk.

HPV: the silent culprit behind anal cancer

While HIV-positive individuals are at a higher risk, you don’t have to have HIV to develop anal cancer. The primary culprit is the Human Papillomavirus (HPV), a sexually transmitted infection. HPV16 and HPV18 are the strains most linked to anal cancer. Gay men with HIV are the highest-risk group, though HIV-positive women are also at elevated risk of both cervical and anal cancers. The HPV virus can often be cleared by the body within two years, but vaccination with the Gardasil vaccine can provide protection against infection. It’s most effective if given before sexual debut, ideally to children aged 9, or to adults up to age 25. In some cases, it can still be beneficial for people up to age 45. (3)

Screening Guidelines: a new hope for early detection

A groundbreaking study, the Anal Cancer/HSIL Outcomes Research (ANCHOR) study, found that screening for and treating pre-cancerous lesions (HSIL) associated with HPV reduced anal cancer incidence by 57%. Early diagnosis significantly improves survival rates. When detected at Stage 1, the cancer can often be treated with local excision, but if left untreated until it reaches Stage 4, the survival rate drops to a grim 22.1%. (4)

As the understanding of anal cancer evolves, so too do the guidelines for screening. Professor Jason Ong, Director of the Melbourne Sexual Health Centre, emphasizes that men who have sex with men (MSM) living with HIV face a 60 to 100 times higher risk of anal cancer compared to the general population. In response, the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) has released new Anal Cancer Screening Guidelines aimed at reducing the incidence of this cancer through earlier detection. (5))

The key recommendations include:

1. MSM and trans women living with HIV over the age of 35 should be offered regular screening.
2. Cis-women, transmen, and other cis-men living with HIV over the age of 45 should be offered screening.
3. If tests are negative, screening should be repeated every three years.
4. Screening should stop at age 75 or for those who are not sexually active and have had two negative screenings.

Max and Chris, both of whom have lived through the trauma of anal cancer, urge everyone—especially those living with HIV and gay men—to take proactive steps in monitoring their health. Early detection is key to preventing serious, even life-threatening outcomes. By keeping up with regular screenings and maintaining open communication with healthcare providers, we can all reduce the risk of a diagnosis that could otherwise be devastating.

In a world where healthcare is evolving, early detection of anal cancer is still paramount. As science progresses and new guidelines are put into place, the fight against this cancer doesn’t have to be a lonely or uncertain one. With vigilance, we can catch it early and take the necessary steps to ensure better outcomes.

Footnotes

1. Anal Stenosis: a rare but serious condition that narrows the anal canal and makes it hard to pass a stool
2. Anoscopy: a medical examination that uses a short lighted tube called an anoscope to look at the anus and lower rectum
3. HPV and anal cancer risk: thebottomline.org.au
4. Anal Cancer/HSIL Outcomes Research (ANCHOR): anchorstudy.org
5. ASHM Anal Cancer Screening Guidelines: analcancerscreening.guidelines.org.au