My name is Bronwyn, and in 2020, I was diagnosed with a malignant peripheral nerve sheath tumour sarcoma. 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 cancer.
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 journey alone.
For some people, a rare cancer diagnosis can mean less chance of surviving - rare cancers account 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, that genuinely understood where I was coming from, because they'd been there too.
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 journey alone.
For some people, a rare cancer diagnosis can mean less chance of surviving - rare cancers account 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, that 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 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.
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.
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.
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.
