Brett and Lisa Sengstock said the financial burden of those facing cancer can be overwhelming, compounding the emotions that come with the disease.

Mr Sengstock said his cancer diagnosis hit him like "a thunderbolt of lightning".

"There's the absolute shock and horror - you think you're dying," he said.

"Then you've still got your mortgage or rent and bills, while going through the worst fight of your life."

The cost of treating and trying to beat cancer - whether through the public or private system - can leave people with unexpected and unbearable costs that can leave them broke.

Mr Sengstock said surviving cancer had "drained our savings".

He had to sell his beloved Commodore ute to cover expected funeral costs. They had to sell their tinnie, which they'd use to putt around the lake.

"That was a very hard and sad time for us both," Mrs Sengstock said.

Mr Sengstock was diagnosed with a rare type of non-Hodgkin lymphoma in May 2017. This type of blood cancer is known for being resistant to chemotherapy.

His diagnosis came through a blood test, three months after the couple married.

"It took nearly nine months to actually diagnose what type it was. By then, he was stage four and in organ failure," Mrs Sengstock said.

Mr Sengstock had his diagnosis and treatment in the public system.

"We were fortunate enough to have an amazing haematolgist [Dr Sam Yuen from the Calvary Mater hospital] look after Brett," Mrs Sengstock said.

"Sam and the haematology team worked so hard for us to make sure Brett had the best care and treatment."

Within two years, Mr Sengstock had three courses of chemotherapy and stem cell transplants. He also had two lymph nodes removed, a collapsed lung and fluid in the stomach from cancer in the liver.

Mrs Sengstock said cancer sends families into "a world of hurt, confusion and sadness".

"You worry where money is going to come from or whether it will run out.

"It's so hard to deal with on top of what you are already going through.

"No person should have to re-mortgage, sell cars or lose their jobs because you get sick or have to care for a person you love."

She said they were blessed with kind friends who sometimes dropped off meals and groceries.

"I couldn't leave Brett for five minutes, as he couldn't even hold a glass or even stand up. We lived on minimum sleep and my nerves were burnt out, but you run on adrenalin," she said.

She said the Cancer Council helped with a cleaner, lawn-mowing and fuel and food vouchers.

A Cancer Council counsellor would "talk to me and listen to me cry when I needed to vent".

Research shows that getting help through Centrelink can be a dehumanising and frustrating experience for cancer patients.

"I think the government should consider some sort of Centrelink payment for a cancer crisis [for patients and carers]," Mrs Sengstock said.

"Your life literally stops and you don't have a choice but to look after the one you love who is going through the toughest, scariest, hardest battle of their lives."

She said carers shouldn't be made to jump through hoops or be put on Newstart and made to apply for work while trying to get through a traumatic experience.

Cancer Council Australia chief executive Sanchia Aranda said the current system was "not adequately supporting people living with cancer".

She said patients were often placed on Newstart because they do not meet the "severe impairment criteria of the disability support pension".

Newstart is designed to provide support to unemployed people while they look for work.

"People with cancer are often too sick to look for work," she said.

"They can find the process of meeting eligibility for continuation of Newstart burdensome due to treatment schedules and illness."

The Cancer Council believes access to the disability support pension should be broadened to include people unable to work due to a cancer diagnosis.

"We would also like to see better access to support workers who specialise in cancer," she said.

A spokesperson for the federal Department of Social Services said people with a diagnosed terminal illness, including cancer, were eligible for the disability support pension if their life expectancy was less than two years.

People who do not qualify for the disability support pension may be eligible for other income support such as Newstart, the spokesperson said.

The department said cases of serious illness including cancer would be exempt from "mutual obligation requirements".

Those on income support were entitled to a concession card, which gives them access to medicines listed on the Pharmaceutical Benefits Scheme at a reduced rate and, in some cases, "reduced out-of-hospital medical expenses".

But not all cancer medicine is listed on the PBS.

Mr Sengstock has been in remission for 12 months.

He said having cancer was frightening. He wasn't able to do basic things for himself. He experienced night terrors and horrendous, debilitating bone pain.

"You wonder if you are going to live through the night and see your loved ones again," he said.

He still has regular tests, which were "traumatic".

"Waiting for the results can leave you holding your breath in anticipation.

"In saying that, I am currently now 12 months cancer free. That is a blessing from God in consideration of the odds that were given in my diagnosis."

He was left with the knowledge that it was important to "question everything and always get a second diagnosis".

He believed a cancer fight was "20 per cent in the body and 80 per cent in the mind".

"Never give up," he said.