When she went to the doctor with a blood nose and symptoms of fatigue, Brett Conley had no idea she would be rushed straight to hospital with an aggressive form of blood cancer.

Key points: Blood cancer could be the leading form of cancer deaths by 2035, according to new research

Blood cancer could be the leading form of cancer deaths by 2035, according to new research The Leukemia Foundation report found the true impact of the disease in Australia has been underestimated

The Leukemia Foundation report found the true impact of the disease in Australia has been underestimated A new taskforce has been established to tackle the high rates of blood cancer

"We were a bit stunned … I thought it was a death sentence, to be honest," she said.

Ms Conley, now 28, is one of thousands of Australians who has experienced blood cancer, but a new report has found the true size, scale and impact of the disease in Australia has previously been underestimated.

The Leukaemia Foundation's State of the Nation report found when compared to the high incidence and mortality of breast, lung and colorectal cancers, blood cancer is now the second-deadliest cancer in Australia, after lung cancer.

"Right now, every day, 41 Australian children, adults, parents and grandparents will be told they have blood cancer," Leukaemia Foundation CEO Bill Petch said.

"And unfortunately 20 people will lose their life to blood cancer, making these cancers some of the most common and deadly in the country."

If current rates continue, it is expected more than 186,000 Australians will lose their life to blood cancer between now and 2035, making it the leading cause of cancer death in the country.

The research found blood cancers like leukemia are the most commonly diagnosed children's cancer, with about 400 children currently diagnosed each year.

For Ms Conley, the high rates in children were all she knew about when she was diagnosed with acute lymphoblastic leukaemia in February 2018, at 26 years old.

"I didn't know anything about blood cancer, specifically leukemia, other than children got it and when I was a young child, a lot didn't survive. So for me that just sent off alarm bells," she said.

Brett Conley and her boyfriend Ken spent months in and out of hospital for Ms Conley's treatment. ( ABC News: Dylan Anderson )

But the research shows more than 5,200 adults between the ages of 25 and 65 are diagnosed each year and about 500 adolescents and young adults receive a blood cancer diagnosis.

Ms Conley underwent intensive rounds of chemotherapy and full-body radiation in Melbourne, and had to search around the globe to find a candidate for a stem cell transplant.

The highly risky procedure helped in her fight against the leukemia and she is now living "like a relatively normal person", but has not been without complications.

"I will have to live a life with long-term health ramifications, so that's early menopause, infertility and recently diagnosed with osteoporosis at 28."

'It's a lottery whether you're going to survive'

Deborah Sims is now cancer-free. ( ABC News: Dylan Anderson )

The first-of-its-kind nationwide report, released today, identifies four priority areas to tackle blood cancer, including empowering patients, ensuring equity of access, accelerating research and catalysing health service reform.

Mr Petch said the cost to the health system of treating and caring for people with blood cancer is expected to increase to over $10.9 billion in 2035, up from $3.4 billion dollars today, unless changes are made.

The alarming figures have prompted the Federal Government to set up a national Blood Cancer Taskforce, which will bring together researchers and patients for the first time to develop a national action plan.

One of the members is patient advocate Deborah Sims, who was diagnosed with chronic lymphocytic leukaemia eight years ago.

The Melbourne mother of three was terminally ill, with 81 per cent of her bone marrow filled with leukemia, when she discovered an experimental trial in London for a new drug.

Using her UK passport, she was able to get on the trial — but had to use all of her superannuation in order to afford to access the treatment.

Deborah Sims with Professor John Gribben at Barts Hospital in London. ( Supplied: Deborah Sims )

"The inequalities in Australia … it is a lottery whether you're going to survive if you live in a regional area," she said.

"If you do not see the best consultants, if you do not have access to clinical trials and if you do not have access, more importantly, to information and be able to advocate for yourself, your chances of surviving compared to someone who is living a stone's throw from the [Peter MacCallum Cancer Centre] can be much lower, as much as 8 per cent lower."

She said the new taskforce would be "tremendously important" in tackling differences in treatment outcomes across Australia.

"This has never been done before. It's incredible. I'm on a taskforce with the most brilliant minds in Australia, most brilliant doctors, scientists and people from Government who can make a difference," Ms Sims said.