Mitch Tisdell lost about $50,000 in income while he was being treated for blood cancer.
Mr Tisdell, of Jewells, also had about $10,000 in out-of-pocket expenses for specialist and allied health appointments.
The 37-year-old shared his story to coincide with the Leukaemia Foundation's "Cut the Cost of Cancer" campaign, held in September for Blood Cancer Month.
The campaign petitions state and federal governments to take practical action to help reduce the financial burden of cancer.
This includes better travel and accommodation subsidies for regional patients, caps on hospital parking costs and more clinical and support services closer to where people live.
"Patients shouldn't have to rely so heavily on the efforts of not-for-profit organisations like the Leukaemia Foundation or the Cancer Council," said Mr Tisdell, an intensive care unit nurse at John Hunter Hospital.
"There needs to be more assistance from state and federal governments in the form of subsidies and other supports to cover out-of-pocket expenses, especially for those undergoing prolonged treatment or those from rural areas."
Leukaemia Foundation chief executive Chris Tanti said people should not have to choose between cancer treatment and putting food on the table or paying their rent or mortgage.
Mr Tanti said one in eight people with blood cancer were "missing, delaying or cancelling treatment or care" because they can't afford it.
"Our research found that Australians with blood cancer are facing average annual out-of-pocket costs of $3910," he said.
He added that some families face more than $20,000 a year for travel and accommodation during treatment, along with medication costs.
"We're increasingly hearing of people draining their savings, accessing superannuation, selling assets like cars, homes and heirlooms," he said.
Mr Tisdell was diagnosed with acute myeloid leukaemia shortly before his 31st birthday in 2020.
"You're trying to wrap your head around the diagnosis and whether you'll even be alive in five or 10 years," he said.
"At the same time, you're being told by doctors you won't work for at least 12 months, maybe more.
"Straight away you think, how will I pay the mortgage, keep food on the table and the car on the road."
Mr Tisdell advised people to "make sure you have income protection".
"I didn't even know I had income protection until my wife told me I did," he said.
"It makes a massive difference. Without that we would have been in trouble."
As well as the costs of treatment, he faced IVF costs of $20,000 a year, which was possibly needed because of the effects of chemotherapy.
Now in remission, Mr Tisdell said the cancer disrupted his working life for about 2.5 years.
"To be honest, I felt guilty when I was sick that I wasn't pulling my weight in terms of paying bills," he said.
He felt three to five years behind where he wants to be in his "career, earnings, super, family, all that kind of stuff".
"My wife and I have been working for a similar time, but there's now a big difference between her super and mine."
While undergoing treatment, he met people from outside Newcastle who travelled for treatment.
"They had to completely uproot themselves and leave their communities for treatment, which comes with a crazy cost," he said.
Mr Tisdell said the cost of cancer was "under-recognised".
"In Australia we have such good public health, but people don't realise all the out-of-pocket costs that comes with cancer," he said.
"It's a massively important thing. People undergoing treatment for any type of cancer need to be focusing on getting better and what they need to do for their health."
Visit leukaemia.org.au.
