Cancer: What's in your control?
There's no denying the science that people living with HIV are at greater risk of cancer. But as Heather Ellis writes in this issue of Poslink+ Quarterly, there is plenty we can do to take control of our health. Also in this issue, LPV health promotion officer Vic Perri opens up about his experience of being diagnosed with a cancer long associated with HIV. While researchers Clare Dyer and Mary Poynten outline what's at stake to improve access to early detection and treatment of anal cancer among people living with HIV.
Cancer – what’s the risk for people living with HIV?
by Heather Ellis
Just how much ‘greater’ is the risk of cancer for people with HIV than the general population? And what can we do to reduce this risk? As a woman aged 60 years and diagnosed with HIV in 1995, this is a question I’m both curious and concerned about.
The latent HIV-reservoir and cancer
People living with HIV have a significantly higher risk of developing a small number of HIV-related cancers and a slightly higher cancer risk in general, even when on ARV treatment with an undetectable viral load. This is due to the presence of low-level inflammation caused by the latent HIV reservoir. While the body’s immune system can’t see this dormant HIV hidden in the DNA of our immune cells buried in places like lymph tissue, the spleen, the brain and the gut, which includes everything from our mouth to our anus, it knows something is there. Our body’s defence is to react with inflammation in a bid to flush it out. After years and years, this inflammation, even though low-level, leads to a weaker immune system making conditions in our cells ripe for cancer.
Other than adherence to ARVs and maintaining an undetectable viral load, there’s not much you can do about this HIV reservoir-generated low-level inflammation. However, you can do yourself a huge favour and reduce other possible inflammation that might be running amok in your body, depending on your lifestyle. Regular exercise (a daily walk and some strength training); a balanced diet; getting enough sleep (i.e. 8 hours); avoiding stress; cultivating a positive mindset; reducing alcohol consumption (one or two standard drinks a day); and quitting smoking, will all help put the ‘inflammation scales’ back in your favour.
Watch: more from Professor Jenny Hoy on what low-level inflammation in people living with HIV means for our health
Anal and cervical cancers
Early detection of cancer, which means regular cancer screening, is vital for people living with HIV. There are two cancers in particular that people with HIV are at greater risk of developing: anal cancer and cervical cancer. Anal cancer affects people of all genders while cervical cancer is relevant to women and people with a cervix.
Both anal cancer and cervical cancer are the result of contracting human papillomavirus (HPV), which is the most common STI. It is very rare, indeed, for people (with or without HIV) not to have contracted HPV. These days, teenagers receive a vaccine before they become sexually active. However, most adults, especially if you’ve had a lot of sexual partners and been exposed to a lot of HPV, are at risk of either one or both of these cancers. But if you’re still young and only had a few partners, it might not be too late for you to have the HPV vaccine, which may give you protection. Speak to your doctor.
Men living with HIV who have sex with men have over a hundred times the anal cancer risk than the general population, making it one of the most common cancers in people living with HIV. This does not mean anal sex increases your risk of anal cancer. It’s your exposure to HPV that is linked to anal cancer. Women and people with HIV who have had cervical or vaginal cancer, which is also due to past exposure to HPV, are also at greater risk of anal cancer.
The cervical cancer screening recommendations are different for people with HIV. For women and people with a cervix living with HIV, an HPV test every three years. Anal cancer screening is recommended for all people with HIV. Even though it is rare, most anal cancer is diagnosed late which leads to a poor outcome. It’s a painful, debilitating cancer with life expectancy around five years for late diagnosis.
As Clare Dyer and Mary Poynten report in this issue of Poslink+ Quarterly, there is currently no screening program for anal cancer in Australia. Although there are tests that can detect anal cancer or abnormal growths before they can become cancer, there are several challenges to broadening access to early detection. These include a lack of knowledge and feelings of embarrassment about discussing anal cancer. Considering that all people with HIV are at greater risk of anal cancer, it is important to speak to your HIV doctor about how often to do anal cancer screening for you. Fortunately, the first Australian clinical guidelines for anal cancer screening are due to be released in October 2024, which should help to broaden access to and awareness of early detection.
Other HIV-related cancers
Before we were blessed with the new generation of antiretrovirals discovered in 1996, people diagnosed with HIV had battle-weary immune systems leaving them susceptible to developing cancers quickly. These were Kaposi's Sarcoma, reddish-purple patches on the skin that develops from exposure to the herpes virus. Non-Hodgkin's Lymphoma, which starts in the lymph glands. And invasive cervical cancer, which develops from persistent HPV infection, and coupled with HIV, grows faster. These cancers are still seen in people diagnosed late with HIV and this is why more widespread HIV testing is important. This is especially important for women as in Australia nearly 70 per cent of women diagnosed with HIV are diagnosed late.
Don’t ignore cancer screening
Once diagnosed and on ARVs with an undetectable viral load there are a number of other cancer screening tests to include in your regular health check-up. These screening tests are the same for the general population, but as a person with HIV, don’t ignore these regular screening tests. A mammogram for breast cancer for women every two years. A prostate check, especially for men over 50. And when you’re over 50, it’s important to do that National Bowel Screening test you receive in the post every two years. Unfortunately, lung cancer is more common among people with HIV, but this is because more smoke than the general population. Hepatitis B or hepatitis C and HIV, as well as excessive consumption of alcohol also increases risk of liver cancer, but regular liver function testing will pick up any abnormalities and determine if additional screening if needed. Again, discuss this with your doctor.
As well as these regular screening tests and adopting a healthy lifestyle, you can also get to know your body and mouth intimately by doing self-exams. This will help you be aware of the warning signs of cancer. And more importantly don’t ignore these warning signs. Don’t ignore that sore that does not heal or that lump, no matter how small, that suddenly appears in your breasts or testicles and groin. Check your skin for any changes in moles or new growths and have an annual skin check by your GP, especially if you are over 50. They use a special magnifier that can pick up abnormalities that you are likely to miss with the naked eye. Don’t ignore any spots of blood in urine or faeces and changes in bowel and bladder habits. A long-lasting cough or sore throat and heartburn or trouble swallowing also should not be ignored. And have an oral exam by your dentist every six months when you go for your regular dental check up to ensure your mouth is healthy.
There is no escaping the research that as people living with HIV, we are at greater risk of cancer, but that doesn’t mean you’ll get cancer. Rather than deny the science, take control and ensure you speak to your doctor and discuss all the screening tests that are right for your gender and your age.
Heather Ellis is an author, journalist and media and communications coordinator at Positive Women Victoria. Pictured: a view in microscope of the spinal cord. The nervous system is one of the major latent HIV reservoirs. Source: Adobe Stock.
My cancer diagnosis was a reminder of AIDS, but I didn’t let it change my outlook on life
By Vic Perri
It all started with small brown blemishes on my lower left leg. It looked like some kind of dermatitis. Perhaps a fungal condition?
I treated it with cortisone cream with no success, and even after a dermatologist prescribed a stronger kind of ointment, it still wouldn’t go away. I began to wonder – could it be Kaposi Sarcoma?
Kaposi Sarcoma or KS is a type of cancer that forms in the lining of blood and lymph vessels. It is caused by a type of human herpes virus and prior to effective antiviral treatments, in the early days of the HIV epidemic, it was an AIDS-defining condition that in fact killed people who had suppressed immune systems.
But my immune system was fine. I had a healthy CD4 count and well controlled HIV. My viral load was even undetectable.
My GP referred me to an oncologist with a long history of experience in KS. I had a biopsy, and the KS was confirmed.
While not dismissing the association with HIV, my oncologist reminded me of the fact that KS is endemic to Southern European and Sub Saharan African older men. Did KS have to do with my Italian heritage or living with HIV? While a diagnosis of KS can be made, there is no way to tell.
I was diagnosed with HIV in 1988 and have been relatively healthy for almost 30 years. Although the KS may have less to do with HIV or the condition of my immune system, the diagnosis changed my perception of my health. I started to feel a little more fragile than I used to, and I suddenly felt vulnerable to HIV.
Left untreated in immunocompromised people, KS spreads through the blood and can coat the lungs causing breathing difficulties. A thought occurred to me that if I stopped taking my antiretrovirals and allowed my immune system to become suppressed, the KS would probably make it difficult for me to breathe. It felt like I technically had an AIDS condition.
It was like AIDS was no longer a thing of the past but back to being something more real that affected me personally. I could see it right there on my leg. An almost daily reminder. Just like taking my antivirals daily.
I have lived with these lesions on my leg for a few years now. I'm less concerned that they are a reminder of my HIV and more about their general appearance. I’m not worried that people could recognise the marking as KS and its association with AIDS. Sure, there are a few long-term survivors that may be aware, but most people with HIV today, let alone people without HIV, have no idea what they are. It's more about me and how I feel about myself and my health in general. Treatment is available and removing the lesions would improve how I feel about my health.
My contemplation of whether to treat or not was quite short. Once I decided, that was it. While my oncologist was happy to wait, he was very supportive of my decision and made me feel in control of the process. I began chemotherapy with a drug called Caelyx. Now that I had decided to treat, I felt in a hurry and just wanted it to clear.
Once I started chemotherapy I had this feeling of ongoing slight fatigue. I also felt that my body’s core temperature was a constant degree or two higher. I started treatment mid-November and so there were some hot and humid days. Was it the treatment or the weather? I had a run of mouth ulcers as well. I have had them before but not this many in such a short period of time. This may not be necessarily directly caused by the treatment but perhaps more from the stress of what I was going through.
It’s now six months after commencing treatment and if I judge my progress based only on what I see, part of me feels quite despondent. I almost feel that the treatment just hasn’t been working.
The blemishes are not simply shrinking and disappearing, which is what I thought would happen. Instead, they are dissolving, and combined with the treatment, causing a dark discolouration in the skin. The blemishes are less defined but appear to have spread, making them look larger and darker.
My oncologist described this darkening of the skin as part of the process of how the treatment works. Despite looking a lot worse, I felt reassured, and this has encouraged me to be patient. It would have been easy to panic and simply think that the treatment was ineffective, and that the KS was just getting worse.
When I was diagnosed with HIV in 1988 I was told that I had two years to live. It was a shock to say the least. But I was determined to not let it drive me to have a fatalistic outlook on life. Thirty-six years later, I have enjoyed a long period of time in relatively good health. I look back and I know that things could have been so much worse.
Everyone has a differing level of happiness and aspects of life that determines what makes them happy. Some are consequences of our choices, and some can’t be controlled. But we all have control of how we respond to what’s happening in our lives. I’ve had a positive attitude all my life and kept it on the day I was diagnosed with HIV. I feel grateful for what I have and I’m determined that I won’t let KS change that. My involvement in HIV peer support over the years has shown me that sharing our stories can help normalise the experience and reduce the fear surrounding it. As we age with HIV, being diagnosed with cancer is going to become more common. I hope my story helps anyone else with KS or in fact any cancer while living with HIV.
Pictured: Vic poses for the Victorian HIV Plan. Photograph by On Location Photography
Improving early detection and treatment of anal cancer in Australia
By Clare Dyer and Mary Poynten
Anal cancer is the most common non-AIDS-defining cancer among people living with HIV. If caught late, it can be a debilitating cancer with poor quality of life and life expectancy outcomes. Although Australian guidelines for anal cancer screening are due to be released later this year, there remain significant challenges for early detection and treatment.
What is anal cancer and why is early detection so important?
Anal cancer is almost always caused by persistent infection with human papillomavirus (HPV), which is also responsible for other cancers, such as cervical, penile, vaginal, vulval, and oropharyngeal cancer. There are over 40 different types of HPV that infect humans, and some are more likely to cause cancer than others. HPV16 is the main genotype that causes these cancers.
HPV is the most common sexually transmitted infection. In most cases the immune system clears HPV, but in some individuals, especially those who are immunocompromised, it persists and can cause lesions to form in the anal canal, which may progress to high-grade lesions and eventually anal cancer. An estimated 11% of high-grade lesions will progress to cancer over a period of 5–10 years. If diagnosed early, life expectancy is good (84.5% 5-year survival if the cancer is localised and hasn’t spread), but if diagnosed late, 5-year survival falls to only 36.3%. The public health focus is to therefore improve access to early detection and treatment of anal lesions before they develop into cancer.
Increased risk for people living with HIV
While anal cancer is rare in the general population (at a rate of 1.9 cases per 100,000 people per year), all people living with HIV are at a high risk of anal cancer. Men living with HIV who have sex with men are at the highest risk, with an incidence rate ~100 times higher, which is comparable to the incidence rate for prostate cancer in the general population. Other men living with HIV have a ~32 times higher risk, and women have a ~22 times higher risk.
Women who have previously had vulval pre-cancerous lesions or cancer, and solid organ transplant recipients, are also at high-risk of anal cancer.
How do you test for anal cancer?
A common diagnostic procedure for anal cancer is a digital anal rectal exam (DARE), where a clinician exams the anal canal using a finger to feel for lumps. However, this method is only suitable for detecting an existing anal cancer, rather than detecting lesions that have not yet developed into cancer.
A sample may be collected from the anal canal using a swab and tested for the presence of high-risk HPV, especially HPV16. Another method (cytology) examines cells collected from the anal canal on a swab under a microscope to look for signs of abnormalities.
However, the gold standard for diagnosing anal cancer is a high-resolution anoscopy (HRA), where a specialist examines the anal canal directly under magnification in a process similar to a colposcopy for examination of the cervix. This approach also allows the early detection of lesions before they become cancer. If lesions suspicious of disease are seen during the HRA, a biopsy may be taken, and examined for signs of abnormalities (histology).
The results of a DARE, HPV testing, and/or cytology testing will determine whether the individual is referred to a specialist for an HRA, with the final disease diagnosis based on histology results taken during a biopsy.
What are the treatments?
Most anal lesions clear spontaneously without treatment and don’t progress to cancer. In many cases, the lesion will be monitored to see if it resolves on its own. However, if the lesion persists, treatment could be recommended to prevent it from turning into cancer. There are currently no consensus guidelines on treatment for anal lesions, and approaches vary from country to country, and from clinician to clinician. Treatments include topical creams such as 5-fluorouracil and imiquimod; provider-applied trichloroacetic acid; and tissue destruction procedures such as hyfrecation, infrared coagulation, electrocautery, and radiofrequency ablation.
Unfortunately many anal cancers are diagnosed at a late stage, requiring chemotherapy, radiotherapy, and/or surgery, which can cause debilitating long-term side-effects.
What about screening programs?
Unlike for cervical cancer, no screening programs currently exist for anal cancer in Australia. The first international consensus guidelines on who to test for anal cancer, and when to test, were published in January 2024; the Australian version of these guidelines is expected later this year.
A future screening program in Australia will likely focus on individuals at highest risk of anal cancer – a “targeted testing” program – and involve collecting a swab for HPV testing and looking for signs of abnormal cells. These test results will determine if an HRA is needed.
However, the biggest challenge that faces Australia (and the rest of the world) is the shortage of specialists who can conduct an HRA. HRA is a highly technical procedure requiring extensive training, and there is a global shortage of clinicians who are certified to perform HRAs. The International Anal Neoplasia Society (IANS) runs an HRA training program and accreditation process, but in Australia there are currently only around 10 trained HRA specialists nationwide, with most based in Sydney and none in Victoria. There is an urgent need to increase the number of trained specialists to avoid lengthy waits for HRA referrals once a screening program is in place.
What are researchers working on?
Currently there is no way to predict which anal lesions will resolve on their own without treatment, and which will progress to cancer, and this is a priority area of research. Methylation testing is currently an area generating a lot of interest. The promotor region of certain genes is modified (‘methylated’) when a cell is infected with HPV, especially tumour suppressor genes. Methylation of the promotor region can inactivate expression of these genes leading to cells becoming dysplastic (precancerous). Research has shown that higher levels of methylation are associated with more severe grade of disease. For instance, low-grade lesions have the lowest level of methylation, and anal cancer has the highest level of methylation. By testing for levels of methylation of certain genes, we might be able to predict which lesions are safe to just monitor, and which should be treated. This knowledge could then prevent unnecessary HRA referrals and treatment.
Researchers are also exploring the most effective treatments of anal high-grade lesions. Many of the current treatments have unpleasant side effects, and lesions frequently recur. A large study in the USA called ‘ANCHOR’ found that treating high-grade lesions, mainly with electrocautery, led to a 57% reduction in people developing anal cancer. This was the first evidence that treating high-grade lesions prevented cancer, and there is a renewed interest in this area of research. In Sydney, researchers at UNSW Sydney are conducting a pilot study in people with HIV, called ‘PANTHER’ to see specifically how effective electrocautery treatment is in clearing high-grade lesions, with results anticipated in the next 2 years.
How can I minimise my risk of anal cancer?
Because anal cancer is almost always caused by HPV infection, the most effective way to prevent anal cancer is to get vaccinated against HPV. However, HPV vaccination only protects against new infections. HPV vaccination for adults is not Medicare-funded, and the full course may cost up to $600. Discussing the benefits of HPV vaccination with health care providers is worthwhile.
Anal cancer is a highly stigmatised disease, which impacts physical function, sexual function, and mental wellbeing. However, knowledge of anal cancer risk is low among healthcare providers, and until Australian screening guidelines are available later this year, many healthcare providers won’t be routinely offering screening to their patients. Therefore, it is important that you are aware of your increased risk of anal cancer, and to initiate discussions with your healthcare provider.
Dr Clare Dyer is a postdoctoral Research Fellow in the HIV Epidemiology and Prevention Program at the Kirby Institute. Dr Mary Poynten is a Senior Research Fellow in the HIV Epidemiology and Prevention Program and is the Group Leader of the Anal Cancer Prevention Research Group. Pictured: view in microscope of a (benign) papilloma caused by HPV. Source: Adobe Stock
Hego (aka Hugh Snelgrove) is a multidisciplinary Visual Artist, based in Gadigal / Sydney, Australia. Hego's work shares stories and calls people to action with illustration, paintings, murals, photography, zines & documentaries. His work often focuses on collaborating with local communities to help amplify under-told stories.
ISSN 1448-7764