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Perth father’s daily battle highlights hidden toll of ‘silent killer’ brain cancer
Each day, Swanbourne father-of-two Alex James runs along the river, goes for a surf or hits the gym, determined to hold on to a sense of normality.
Fit and active at 47, the property consultant doesn’t look sick. But behind closed doors, a cancer known as the “silent killer” has reshaped his life.
Alex James, who lives with the incurable brain cancer IDH-mutant glioma, and his wife Emily.
In May 2023, after living with persistent headaches for a decade, James was told he had a tumour: “My heart skipped a beat.”
Slow-growing but incurable, IDH-mutant glioma is a lesser-known form of brain cancer that has a five to 13-year average prognosis.
Surgery was ruled out, with doctors warning it could leave James paralysed or with major cognitive loss.
James has to live with not knowing when the cancer initially grew and how long he has left with his family.
“I don’t look sick, but every scan could be the one that changes everything,” he said.
“The hardest part is not knowing if I’ll see my kids graduate high school, fall in love for the first time, or get married.
“I have to accept I won’t be there for things in 20 years, like their weddings.”
James’ story is one of thousands across the country.
More than 3200 Australians are currently living with IDH-mutant glioma, according to a report released on Tuesday by research organisation Evohealth.
The analysis reveals the profound toll of the disease – not only on patients, but also families, carers and the wider economy.
Combined with healthcare and other costs, the total economic burden is $3.5 billion a year, projected to climb to $4.7 billion by 2050.
Unlike brain cancer glioblastoma, which strikes quickly, IDH-mutant glioma erodes health and independence over years.
Patients can experience seizures, speech and vision loss, and personality changes often likened to the effects of a traumatic brain injury.
“The disease strikes people in their prime.”
Professor Hui Gan
James’ wife Emily had already survived breast cancer two years earlier. Together, they are now raising Willow, 5, and Hunter, 7, while managing the uncertainty that comes with this type of brain cancer.
A headache or funny feeling in his arm can make James worry about whether his cancer has grown.
He said despite medical advances in health, there hasn’t been major developments in brain cancer in years.
“That’s difficult for me to accept,” James said.
“If they were to come up with a cure tomorrow, it probably wouldn’t hit the shelves for four years.
“We really need more awareness on these lesser known types of cancers and more government acknowledgment.”
But he tried to stay positive.
“You focus on what matters most,” Alex said.
“For me, that’s time with my family. I try to treasure every moment.”
“The disease strikes people in their prime,” said medical oncologist Professor Hui Gan.
“It robs young adults of their futures, families of their stability, and society of years of productivity. Yet most Australians have never even heard of it.”
The report released on Tuesday calls for urgent reform, including recognising IDH-mutant glioma as a permanent disability under the NDIS and expanding access to rehabilitative and psychosocial services.
For families like James’, those recommendations could not come soon enough.
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