My name is Bronwyn, and in 2020, I was diagnosed with malignantcancerous, may grow and spread to other areas of the body peripheral nerve sheath tumoura tissue mass that forms from groups of unhealthy cells sarcomacancer arising from bones and/or soft tissue. I could barely pronounce it, let alone understand what it was and what it would mean for me, but I found out very quickly that it is a rare cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs.
In Australia, around 42,000 people a year are diagnosed with a rare or less common cancer. That may still sound like a lot but when you consider that there are hundreds of different rare cancers, and then throw in genetic subtypes and complex cancer experiences, the numbers dwindle quickly and you’re left feeling very alone in your situation. And no one should have to go through their cancer journeywhat a person experiences/lives from the time they think they have cancer alone.
For some people, a rare cancer diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results can mean less chance of surviving – rare cancers accounts for one-quarter of cancer diagnoses but one-third of cancer deaths. It can mean a later diagnosis, limited treatment options and services, less expert knowledge and research and, unthinkably in Australia in 2026, higher costs to stay alive, simply because you have the “wrong” type of cancer.
For me, it meant a lack of answers to the onslaught of questions I had when I was told, “you have a rare cancer”. It was not knowing anyone to talk to about what I was experiencing and sharing an understanding of the ups and downs of the lived cancer experience. And this is where Rare Cancers Australia entered the story.
They provided me with a Specialist Cancer Navigator to help me find the answers I was looking for and understand the information I was being given. Most vitally for me, they introduced me to a network of peers that I could chat to, share experiences with, ask questions of and share highly appropriate memes with, who genuinely understood where I was coming from, because they’d been there too.
When I took on my first Kosi Challenge in 2024 with hundreds of other rare cancer patients, friends, families and professionals, all wearing our Rare caps, I saw all the other people who just “got it”. As I left the mountain, a passing hiker commented to me “Rare seems quite common today!” and he couldn’t have summed it up better. The Kosi Challenge, and what Rare Cancers Australia provides, ensures that no one needs to feel alone.
So I am climbing again in 2026, not just to see the friendly faces and the stunning scenery of Australia’s highest mountain, but because it gives me an indescribable sense of community and comradeship, and through my fundraising efforts, an opportunity to take back some control in what is an otherwise uncontrollable situation. I know that the funds I raise (and this year we’re aiming for $750 000) are vital for Rare Cancers Australia’s dedicated support services, helping people diagnosed with rare and less common cancers, and their loved ones. Most importantly, it shows every person impacted by a rare cancer that they are not forgotten.
I encourage everyone to sign up and come along on 13 and 14 March – whether it’s taking on Mt Kosciuszko in person or virtually – and join the rare community in making every story like mine, every step and every dollar count.
You can join the Kosi Challenge by joining us in-person in Thredbo to summit Australia’s highest peak, or walk 21km in your area as a virtual challenger on Friday 13 and Saturday 14 March 2026. All funds raised from the Kosi Challenge go directly to our patient support programs, providing unique and personalised support from our Specialist Cancer Navigators to ensure nobody has to face cancer alone.
Bronwyn and her team are hosting a huge raffle towards their 2026 Kosi Challenge fundraising. With 12 great prizes up for grabs, residents of NSW and Victoria can buy tickets online.