The below tells the story of our CEO for 22 years, Russell Conley, and his cancer journey. Russell sadly passed away in 2024.
Russell dedicated much of his career to the GI Cancer Institute. As CEO and the first staff member, he helped grow the organisation into an international leader in clinical trials. He believed deeply in the importance of research, and in giving patients with gastro–intestinal cancer access to new treatments and hope for the future.
Under Russell’s leadership, the membership of researchers flourished and our connections with advocacy groups and international research partners expanded. He even climbed mountains, taking on the Mt Kosciuszko Gutsy Challenge. When he was faced with GI cancer, he publicly shared his story to help others and raise money for the same cause he spent much of his career supporting.
“If talking about this helps even one other person, then it’s worthwhile.”
Russell Conley
Russell had recently moved to a farm in regional New South Wales with his partner. He enjoyed spending time outdoors, looking after the animals and settling into the home they were creating together.
In 2022, Russell began to feel unwell. Cramps and changes in his bowel habits worried him. A colonoscopy revealed polyps, and the samples confirmed he had anal cancer. Scans later showed the disease had already spread to a lymph node in his groin.
He never forgot the moment he was told. The doctor’s face said it all before she spoke. The timing made it even harder: the news came just hours before he was due to host a work dinner.
“I felt numb,” Russell said. “Everything suddenly looked different. When you hear the diagnosis, you go into survival mode. You stop thinking about five years from now and start thinking about getting through the next day.”
When treatment began in Sydney, Russell and his partner relocated for six weeks. Two of their dogs came with them, while friends cared for the others back home. His sister flew in from Adelaide to lend her support.
“Having the dogs with us made a difference,” Russell said. “They gave us something normal in the middle of all the appointments and the waiting.”
The treatment was gruelling. Daily radiation and continuous chemotherapy left him exhausted, and at one point he was hospitalised to manage the side effects. “It was brutal. There were times when I couldn’t do anything. But I had to keep going.”
Even simple routines, like walking the dogs, had to be carefully adjusted. “We had to think about where to go, how far I could manage. It sounds small, but it was our life, and cancer changed all of it.”
Living through treatment gave him a perspective he had never had before.
“I’d been helping facilitate trials for years, but living through it gave me a completely new perspective. I understood in a way I hadn’t before how hard it is to manage the side effects, the travel, the uncertainty.”
He also offered practical advice: “You need to take someone with you to every consultation, because you don’t hear half of what the doctor says. You’re in shock, or you’re trying to process, and having someone there to write it down makes all the difference.”
In January, a scan showed his tumour had shrunk by 95 per cent. “There was hope,” Russell said. Yet he also saw the limits of the treatments available. “Some of the drugs I received were first developed in the 1950s. Without new trials, survival rates for rare cancers like anal cancer will not improve.”
Russell lived with anal cancer for nearly two years. During that time, played an active role in advocating for Australians with rare cancers and openly shared his personal cancer journey to not only help others, but to support the work of the organisation he had helped to build.
In 2024, Russell passed away. His loss was felt deeply by his family, friends, and colleagues, and by the many people he engaged with in his work, including researchers and patient advocates.
Over 70 research studies were conducted during Russell’s 22 years at the helm of the GI Cancer Institute. These trials directly benefited more than 8,000 people with GI cancer. But the impact of these trials was felt by far more – many of these trials were significant practice-changing trials that changed how people with GI cancer are now treated for the better.
To honour his work and memory, a one-off Russell Conley Anal Cancer Grant was established to support new research in this area. Russell had dedicated his life to ensuring anal cancer patients had better options and greater hope, determined to keep speaking out against the stigma of this disease.
The grant is a fitting legacy for a person like Russell – with his leadership and his love of building community.
