It was a Monday when Dykes on Bikes treasurer Jakk Hodson went for a follow-up breast examination after a screening had found an abnormality. By that Friday, they found out they had cancer in their right breast.
The abnormality was first detected in a BreastScreen van at event called Welcome to Breastiville, run by ACON - a NSW based health promotion organisation specialising in LGBTI health - during the 2017 Mardi Gras.
Hodson’s cancer was detected early, at stage 1 grade 2. Through a long, emotional process, they eventually decided to have a double mastectomy and although they’re still on medication, they now have a 1% of their cancer returning.
“It was very intense,” Hodson tells SBS Sexuality. “But I was very blessed that ACON have these events. I might not have been tested for another year.”
“At that stage, I would have possibly regressed to another stage of cancer. It would have been a lot more serious and I would have faced many months of chemo or radiography; whatever processes I had to go through to stay alive.”
It’s estimated that this year, 18,000 cases of breast cancer will be diagnosed across Australia. Approximately half of the people eligible for mammograms or breast screenings are getting regular check ups, however among lesbian, bisexual and queer (LBQ) people, the rate is almost 10-15% lower.
That’s where ACON’s #TalkTouchTestcampaign comes in.
ACON identified the lower rates of screening among LBQ women and people with breasts and began the campaign to promote awareness, conversation, and a safe space for queer people to engage with health issues.
Through a partnership with Dykes on Bikes, they piloted a campaign in 2016 by bringing a BreastScreen van to the annual Bikes and Tattoos fair. Dykes on Bikes have, for almost 30 years, been dedicated to creating safe spaces for women and LGBT people, so this was an effective way to start conversations about breast cancer.
In May 2016, #TalkTouchTest launched formally, receiving a small grant from the Aurora Foundation and partnering with the NSW Cancer Institute. They’ve since run two Mardi Gras events at aimed at creating safe spaces for queer people to have productive and non-judgemental conversations, as well as access BreastScreen vans.
ACON Deputy CEO Karen Price tells SBS Sexuality that these events are authentic and community focused; aimed at making queer people feel understood and providing them access and support.
“These events are integral,” she says. “At these big events, we draw a lot of community in, we can raise a lot of awareness and you also drive people to access the services directly as well as making appointments.”
ACON’s hope is that people may seize the moment upon seeing the BreastScreen van and get a potentially life-saving check-up in a relaxed, safe and non-clinical environment.
“It’s a very accessible way, and creates community support for that. So groups of friends and chosen families have conversations and go and get that done,” Price says.
There are numerous reasons LBQ women have a lower screening rate of breast cancer compared to the general population. One contributing factor is that many successful health campaigns, particularly around cancer, don’t represent the LGBTIQ community.
“The background of [ACON’s] campaign is an awareness that while large scale public health campaigns were being undertaken for the general population, members of our communities were kind of invisible,” Price explains.
“We represent a diverse range of people in our communities in our campaigns, and we talk in a way that communities get and can see themselves in. More of those conversations means that people are more likely to support each other to get the mammogram or access services.”
Another contributing factor, Prince says, is that some LBQ people may also have a complex relationship with their breasts, particularly if they identify as more ‘butch’, or they’re non-binary or transgender. For some people who don’t feel particularly connected with their breasts, there’s a chance this could lead to neglecting check-ups.
Price and Hodson both note that sometimes prior negative experiences with health professionals may hold LGBTIQA people back from regular check-ups. Although Hodson has a regular doctor, they told me that many of their friends don’t have a safe and ongoing relationship with a health professional.
The fear of walking into a doctor’s surgery and wondering about whether a doctor is homophobic can deter people, Hodson says. Another concern is that they’ll be addressed incorrectly or misgendered.
LBQ women have a cluster of high-risk factors around breast cancer, including having higher rates of tobacco and alcohol use and a lower chance of having children.
#TalkTouchTest is committed to starting non-judgemental conversations with the LGBTIQ community about breast cancer, raising awareness and encouraging regular check ups. The NSW Cancer Institute are leaders in their field of working with the LBGTI community for cancer prevention.
Through community events and safe spaces, awareness and conversation, ACON hope that #TalkTouchTest will assist the LGBTQIA community in early detection, and hopefully save lives.
The 40th Annual Sydney Gay and Lesbian Mardi Gras will air on Sunday, March 4 at 8:30pm on SBS.
SBS Radio 3 will join forces with Australia's premier gay and lesbian community radio station, JOY 94.9, for a Mardi Gras weekend simulcast, which can be accessed via the SBS Radio mobile app, digital radio and around Australia on digital television.
