Youth cancer survivor Dawson Sorby said words cannot describe how it felt to go into remission.
His cancer was gone, but treatment was far from over.
"I wasn't really able to process it at the time," he said.
"All of a sudden, I went from being a young person with cancer, to a young person with a disability."
After almost two years of treatment, Mr Sorby was told by doctors that he was cancer-free.
But his sixth and final brain surgery left him paralysed on his right-hand side.
Before he was diagnosed with primary testicular cancer at 16 years old, Mr Sorby was a top-level rugby player and straight-A student at school.
"The cancer diagnosis and ending up with a disability took all that away from me," he said.
"That identity change is something I still struggle with today."
Now 30 years old, Mr Sorby said he does not know how full brain radiation will affect him later in life.
Ewing Sarcoma survivor Cameron Donnelly agreed cancer never really left after he went into remission.
"It's always at the forefront of your mind," he said.
"You go to the doctors and you've got a sore leg ... you think, 'could it be cancer again?'"
For more than a year during treatment, he watched friends finish their degrees, make a start in the workforce and complete various rights of passage.
His focus was on staying alive.
"You finish your treatment and you get dropped into a world of stuff that you have to make something of," he said.
There are more than 30,000 young cancer survivors like Mr Sorby and Mr Donnelly in Australia, but little is known about how the disease affects patients later in life.
A leading Australian cancer charity has set about to change this.
Canteen Australia is calling for the federal government to allocate $11.9 million to research the long-term impacts of youth cancer.
The project is the first of its kind and shines a light on the physical, mental and financial wellbeing of survivors, as well as implications for the broader economy.
Research is critically important for informing policymakers, Canteen Australia chief Peter Orchard said.
"By not understanding how young survivors are doing as they age, we are missing opportunities," he said.
These include health screenings, early intervention and more tailored support services.
Early intervention after care is vital, Queensland Youth Cancer Service medical director Rick Walker says.
"We are hoping to not just have young people live beyond their cancer diagnosis, but to live well beyond their cancer diagnosis," he said.
Labor and the coalition declined to say whether they would back Canteen's research proposal after the federal election on May 3.
A spokesperson for Health Minister Mark Butler said Labor recognised the significant impact cancer has on adolescents and young adults, underlining investments that "put young people at the front and centre of support services and treatment".
Coalition health spokeswoman Anne Ruston meanwhile pledged to invest in health and medical research to improve the lives of Australian patients and their families, if the opposition is elected.
