The first event of its kind in the District, the summit focused on building stronger understandings of rare cancers and partnerships to improve patient care.

It started with a pain in his ankle. 

At 21, James Parr went to a doctor who diagnosed the niggling feeling in his right ankle as a calcified ligament.  

About a year later, he was told his right leg would be amputated below the knee after doctors discovered osteo sarcoma, a rare and aggressive cancer that had spread around his ankle joint. 

Parr, a Melbourne-based and proud Wiradjuri man, told a crowd of patients, clinicians and researchers gathered at the District’s 2023 Sarcoma Summit that he noticed a shift in other people not long after his life-saving surgery. 

"I lived able bodied for 20 years and when I became disabled, everyone looked at me different, they talked to me differently, people telling me they were sad for me, people telling me they were sorry for me," he told the summit.  

“The way that comes across is, people see us as invaluable, even though that might not be their intention, that’s how it’s perceived.” 

Parr, a triathlete and model, now draws on his experience to champion inclusion and representation for people with a disability and rewrite the narrative around disability.  

His powerful story of overcoming adversity of sarcoma was one of many shared by sarcoma patients and their families and clinicians at the summit.  

The first of its kind in Australia, the summit brought together leading clinicians and researchers, patients and their families from across the country to foster a deeper understanding of sarcoma and develop new strategies to improve treatment and care.   

District Chief Executive Dr Teresa Anderson said the summit was an opportunity to come together to hear the voice of patients and their families.   

"This summit really is a platform for collaboration and knowledge sharing to help us advance research and clinician capabilities to foster a better understanding so that together we can provide the very best outcomes for our patients and for their families.  

"We know the impact that sarcoma can have on the whole family, on the patient themselves and their loved ones."   

Dr Richard Boyle, Orthopaedic Surgeon and Director of the RPA Bone and Soft Tissue Sarcoma Unit, a world leader in diagnosing, treating and following patients with known or suspected sarcoma, said sarcoma was rare.  

"But we're in the room together, and all of you have experienced something rare.   

"We now have the technology to make a difference, and surgery is only one part of the whole journey, and hopefully today, we can strive to continue to improve not only surgery but everything else as well."