Since BCNA began in 1998, we’ve achieved so much for people affected by breast cancer. However, we know some groups of people have continued to feel invisible and alone, including the LGBTIQ+* communities.
According to Professor Jane Ussher at Western Sydney University, research shows these communities ‘face unique challenges after a cancer diagnosis, such as higher rates of cancer-related distress and sexual concerns, lower levels of family support, difficulties in accessing general healthcare or cancer services, gaps in patient provider communication, and lower satisfaction with cancer care’.
LGBTIQ+ communities have always been part of BCNA, but we recognise they have not always had a wide range of resources that address their individual needs. We are working to change that.
Our LGBTIQ+ Advisory Group, formed in 2021, is helping us address the content needs of the LGBTIQ+ communities and members affected by breast cancer. The group of eight members from across Australia provides insights and ideas about topics that may be of interest, identifies strategies to increase our engagement, provides feedback for planned content including our events and podcasts, and advises us on preferred terminology.
For Advisory Group member Ro Woods, joining the group has given her the chance to give back.
‘I’m proud to be a member of the LGBTIQ+ Advisory Group and share my experience of breast cancer to help support others within my community. It’s my hope that with BCNA’s support we will all be treated with respect in sickness and in health,’ she says.
Along with the Advisory Group’s advice, we have included the voices and experiences of LGBTIQ+ people living with breast cancer in the review and development of new, specific content to meet their needs.
These lived experiences and challenges were captured through our recent research partnership with Western Sydney University researchers. The Australian Research Council (ARC) funded the ‘Out with Cancer’ Study which explored LGBTIQ+ experiences with cancer from the perspective of cancer survivors, their carers and healthcare professionals.
A BCNA representative from our Seat at the Table program, Natalie Halse, was a community stakeholder member of the Western Sydney University advisory group, and BCNA also helped recruit LGBTIQ+ people to take part in the research.
Professor Jane Ussher from Western Sydney University was the lead researcher. She says: ‘This new content will fill the gaps in current breast cancer information by providing targeted information that is directly relevant to LGBTIQ+ experiences of cancer diagnosis, treatment and living with cancer. This includes addressing LGBTIQ+ specific needs and concerns, such as coming out to healthcare professionals, body image, sexuality and fertility, legal rights, palliative care, and the needs of transgender and intersex people. The content also includes quotes from LGBTIQ+ people with breast cancer who took part in the study, to let people know they are not alone.’
Some of the new content includes updates to My Journey, which will soon feature:
We will also be launching two new Upfront about Breast Cancer podcasts for the LGBTIQ+ communities, including LGBTIQ+ Experiences of Breast Cancer and Cancer Care, in which Professor Jane Ussher and BCNA Consumer Representative Natalie Halse discuss some of the key findings of the ‘Out with Cancer’ study and explore disclosure. We will also hear from LGBTIQ+ Advisory Group member Mel Krollig and her partner Riki Owens-Bennet in the podcast, Through a Rainbow Lens – Navigating Breast Cancer as an LGBTIQ+ Couple, where they discuss Mel’s experience of breast cancer, how Riki supported her and the challenges the couple faced together.
This is just the beginning as we continue to do all we can to provide a safe and welcoming space for LGBTIQ+ communities, where they feel represented, supported and empowered to make informed decisions throughout their breast cancer journey. Stay tuned for more!
*We use the term LGBTIQ+ in the broadest sense, to represent all sex, sexuality, and gender diverse people. It stands for Lesbian, Gay, Bisexual, Trans, Intersex and Queer. The ‘+’ sign is used to encompass other gender, sex and sexually diverse people not covered by the LGBTIQ acronym.