Any cancer diagnosis is terrifying, but patients like Lejla Meduselac with rare cancers face even greater challenges.
Ms Meduselac is a single mother with two young children. Her daughter has cerebral palsy.
Last year at 33, Ms Meduselac was diagnosed with a rare cancer of the adrenal gland and despite two surgical procedures, it is spreading.
The only drug which might help is not approved and subsidised by the Federal Government for patients with this type of cancer, so would cost Ms Meduselac tens of thousands of dollars, something she simply cannot afford.
"I just have to keep strong for my family and most of all, my kids," Ms Meduselac said.
"It is really hard to know that there's nothing there for people like us."
Her only hope is to be accepted onto a trial.
"I've got my fingers crossed. At least if there was more research being done, more clinical trials, it would just help. It would give us hope," she said.
'We aren't getting the treatments to them'
A rare cancer is one which occurs in six people per 100,000.
These patients are twice as likely to die as people with more common forms of cancer.
This week the charity Rare Cancers Australia is launching a report calling for change.
"This year there will be 50,000 people diagnosed with rare or less common cancers, and half of them will die within the next five years," Richard Vines, chief executive officer and co-founder of charity Rare Cancers Australia, said.
"A lot of them will die prematurely and a lot of them will die potentially unnecessarily, because we aren't getting the treatments to them."
After consulting all stakeholders in the field including researchers, the pharmaceutical industry and the Federal Government, the report's recommendations include more funding for research, more local trials and a flexible approach to accessing subsidised medications.
"For the first time these people are getting their voices registered through this report," said oncologist Professor David Thomas from The Kinghorn Cancer Centre and Garvan Institute of Medical Research.
"They are saying, 'Don't forget us, we pay taxes, our diseases are just as horrible as anybody else's diseases.' We have the opportunity to do something about it and it's time we did."
The challenge for those treating people with rare cancers is that the smaller numbers affected by each rare condition mean fewer opportunities to join clinical trials, and fewer trials mean fewer drugs approved for use.
"If you need 100 people to prove a point and you only find one in every clinical lifetime, how much tougher is it to do research? How much less incentive is there for a commercial pharmaceutical company to invest in a drug in a rare disease?" Mr Thomas said.
"Then when it comes to the Pharmaceutical Benefits Advisory, who make the decision about how we as a public invest in new drugs, the evidence just isn't there."
'I have a young child, I want to see her grow up'
Lillian Leigh has experienced the dilemma firsthand. At 34 she was diagnosed with a rare form of lung cancer.
"There was one targeted therapy that was available around the world but it wasn't subsidised, it wasn't on the PBS [Pharmaceutical Benefits Scheme] and the only way I could get it is if I paid $7,800 a month, which is about $90,000 a year for this drug," Ms Leigh said.
She managed to raise funds through family and friends for the drug, but did not tolerate it.
She has now joined a trial of a different drug which has stabilised her condition, but that is a chance most patients with rare cancer do not get.
Ms Leigh understands the limitations of Australia's health budget, but believes every cancer patient in Australia deserves the same level of support.
"It's a very difficult issue and I really appreciate that. How do you make a decision as to how you spend the money or who you save with that money?" she said.
"I have a young child. I want to see her grow up. I want to be well enough to be around and be a mother."
Mr Vines said rare cancers often affect young people.
"In Australia, 10 Gen Xers will die today and every day from a rare cancer. People at peak powers, peak capability. There will be one Gen Y every day. What we are doing is decapitating our youth," he said.
"So when you talk about the cost you have to look at it beyond the treatment cost, and think of the societal cost that brings."
And he said the use of the term "rare" could be misleading.
"It's only when you accumulate all these rare cancers that you realise that they kill a lot more women than breast cancer, and a lot more men than prostate cancer does … and there's a huge need to do something about this," Mr Vines said.
