Since the beginning of the pandemic, rates of Cervical Screening Tests (CSTs) have dropped considerably, and the medical community and patient groups have called for Australians to catch up on tests if they are overdue.

Members of the LGBTQI+ community can face additional barriers to accessing a Cervical Screening Test and there are concerns the pandemic will have made attendance rates worse in this cohort. Misunderstandings also persist within the community about who is at risk of the Human Papillomavirus (HPV), the virus that causes the majority of cervical cancers.

Associate Professor Julie Mooney-Somers, an LGBTIQ+ health researcher at the University of Sydney said;

“HPV is present in 93% of all cervical cancer cases. Some people think that if there is no penis involved in sex then there’s no risk of contracting or transmitting HPV. Unfortunately, that isn’t the case because HPV is spread by skin-to-skin contact (that means by your hands, mouth and genitals) and through sharing sex toys. You need to be tested even if you have never had sex with a man or if your partner has never had sex with a man. All women and people with a cervix need to be tested; cervical cancer does not discriminate. Rates of smoking are higher among LGBTQI+ people, which increases the risk of cervical cancer, so testing is even more important.”

The Cervical Screening Test detects HPV, giving an opportunity for intervention to prevent cancer from developing. Positive HPV samples are also examined under a microscope by the pathology team in the laboratory to check if changes that could lead to cancer are already present. This provides the chance for early treatment and better health outcomes.

Dr Maryam Shamassi, a gynecological pathologist said:

“Cervical screening, like any other screening test, is intended to detect abnormalities which, if left undetected and untreated, can develop into cervical cancer. With the new cervical screening program, which was introduced in Australia in 2017, a five yearly HPV test has replaced the traditional two-yearly Pap smear. Testing less often makes it easier on patients but more important not to miss a test.

“HPV is short for human papillomavirus, a family of more than 150 related viruses, some of which are known to cause cancer, including cancers of the cervix, vagina, vulva, penis, anus, and parts of the mouth and throat. HPVs live only in certain cells called squamous epithelial cells which are found on the surface of the skin and on moist surfaces called mucosal surfaces. The Cervical Screening Test looks for cervical infection by high-risk types of HPV that are more likely to cause pre-cancers and cancers of the cervix. So if you have a cervix, make a note to yourself to get a CST, it’s a straightforward test that could save your life!”

Data from a recent Sydney Women and Sexual Health (SWASH) study shows lesbian, bisexual and queer women who have never had sex with a man are a lot less likely to have had a Cervical Screening Test.

Kate’s cervical cancer story

Kate, a Police Detective based in Moree, New South Wales, was diagnosed with cervical cancer in April 2019 at just 31 years of age. Kate and her wife were planning to start a family at the time. During the IVF process, they realised they were both 12 months overdue for their Cervical Screening Tests. During Kate’s screening, a tumour was found, and after a biopsy, she received the tragic news that she had cervical cancer.

“I was not expecting [the diagnosis] because I was healthy, I didn’t have any symptoms and I’d previously been up to date with my screenings. My wife and I had recently gotten married, life got in the way and I put it off. When we received the news that I had cervical cancer all I kept thinking about was my fertility and how I wouldn’t be able to carry the baby, in that moment it didn’t cross my mind that I may not survive. The scary thing is, if I had waited another six months I could have been in a completely different situation, my diagnosis could have been far worse than what it was.”

Kate had a radical trachelectomy, a form of surgery that completely removes the cervix. Nine pelvic lymph nodes were also removed for biopsy. Unfortunately, one of those pelvic nodes showed a small deposit of cancer. This meant cancer had spread, and Kate needed to receive chemotherapy and radiotherapy.

“I was really devastated about the robbing of my fertility as well as having cancer. It was just one blow after another.”

Prior to the chemotherapy and radiotherapy, Kate was able to undergo one round of IVF.

“I was determined to somehow create life. I went through the whole process and ended up getting one viable embryo, which was a miracle given everything my body was going through. There wasn’t a big chance that a successful pregnancy could happen from just one healthy embryo, but we put it on ice while I went through my gruelling cancer treatment.

I finished the treatment in August 2019 and then in November 2019, my wife underwent the IVF transfer procedure. Amazingly it took, and in August of last year we welcomed our little baby girl Zoë into the world. She’s here now and she’s eight months old, and she’s a perfect little person. Despite all the odds being against us, this little bit of goodness came out of such a horrible time in my life. We called her Zoë because Zoë means ‘life’ in Greek and I believe wholeheartedly that she actually did save my life.”

Kate is an ambassador for the Australian Cervical Cancer Foundation and her message to women in the LGBTQI+ community is the value of prevention and early detection;

“There are so many ways that you can treat things when they are caught early, that you just can’t do down the track. We in the LGBTQI+ community need to look out for each other. Check in on your friends and your girlfriends and others in your community and speak up and normalise the Cervical Screening Test. Normalise health and following-up with one another, be vocal about it. Take it from me, a five-minute screening test is nothing compared to having your cervix removed, so please make sure you are up to date. I hope that my message encourages others out there to get checked. I obviously still wish that I didn’t get cancer but hopefully some good can come out of it if people act on my story and hear my message.”

All women, and anyone with a cervix, aged between twenty-five and seventy-four are eligible for a CST every five years, but the figures show that many are overdue for testing.

Elizabeth Ham, National Health Promotion Manager at the Australian Cervical Cancer Foundation (ACCF) urges people to check their eligibility and when they might be due for a test;

“The pandemic has caused so many different disruptions in our lives but now is the time to put our health first. If you think you might be due or overdue for a Cervical Screening Test, do not delay in making an appointment with your healthcare provider. Remember if you have a cervix, you need to have regular Cervical Screening Tests.”

Cervical cancer and screening resources and further information

When it comes to collecting a sample for a cervical screening test, some may find the process confronting and it is worth noting that there are specific services designed to be LGBTQI+ friendly.

Clinic locations and further information is available at https://www.theinnercircle.org.au/.

The Inner Circle also have a useful resource which LGBTQI+ people can use to address fears and barriers to testing at their preferred healthcare provider, download the letter to your GP here.

ACON provide a TransHub’s Gender Affirming Doctor List which outlines LGBTQI+ clinicians across New South Wales for those outside of urban locations.

Trans[TEST] at Kirkton Road Centre, NSW, and Equinox on Hoddle Street, Abbotsford, Melbourne, provide Cervical Screening Tests for trans and gender diverse people.