Sophie Martyr was just 13 years old when she learnt she had brain cancer and was asked to make a decision about whether she wanted to have children in the future.
To some, it's an obvious choice. For Sophie, feeling shaken and coming to grips with the months of chemotherapy and radiotherapy ahead, the last thing she wanted was another surgery and her first answer was no.
"I knew the treatments would damage my ovaries, but at 13, you're not thinking about fertility and babies, and I wanted to avoid another surgery," said Sophie, now 20 and in remission.
"But with my parents' support I did it, I had keyhole surgery where they went into my belly, took slivers of my ovaries and froze them," she said. "I'm grateful the option to try is there, but whatever I do in the future will cost a lot of money."
A new report by not-for-profit CanTeen and Deloitte shows for the first time the lifetime cost for each young Australian diagnosed with cancer is $1.3 million. This includes $134,600 in health system costs, $418,700 in productivity costs, such as absenteeism, and $644,500 in "burden of disease" costs, such as pain and premature death.
Each year, 1100 Australians aged 15 to 25 are diagnosed with cancer, and along with the pain and suffering, they incur treatment-related expenses, forfeit income and have diminished employment opportunities. Their primary carers – often their parents – carry a significant burden.
The report refers to a separate study that found more than a quarter of affected families suffered a loss of income at an average cost of $2505 each year per child.
Even if patients overcome cancer, many face ongoing and large one-off costs, such as IVF assistance. They face the possibility of secondary cancers, heart problems and lung damage, depending on the treatment used.
Dr Fiona McDonald, research manager at CanTeen, said it was also critical for them to calculate the total lifetime cost for young Australians diagnosed with cancer in 2016 – $1.4 billion – in order to improve their advocacy work.
"For young people, the costs are much larger because they die much younger and therefore we're trying to improve access to the best possible treatments for those who have many years of life ahead of them," she said.
"We're trying to improve access to clinical trials, especially since the federal government announced last year new funding in that area, which focuses on high lethality cancers that unfortunately do impact young people."
Babies in the future
One of the big costs faced by families is fertility preservation. While nearly all patients in Australia will be told about fertility preservation, only a third will go ahead.
Female patients, according to the report, are less likely to undergo fertility preservation than males because the procedures are more complicated and more expensive.
Dr McDonald said the upfront out-of-pocket costs for embryo preservation was about $5000 at the time of preservation, followed by storage fees and an additional $2000 to use each frozen embryo.
For the past few years, Dr Antoinette Anazodo from the Kids Cancer Centre at Sydney Children's Hospital has been at the forefront of the fight to lower the cost barrier by pushing for more Medicare support.
"We've put in four applications for six items numbers. 'Ovarian repositioning' started on May 1 last year, 'sperm banking' was approved on November 19 and we're waiting for the minister to sign it off, and two others – female fertility preservation and the testing of women's fertility using a test called the AMH – went through the final paperwork on January 15, so we're waiting to hear back from the committee," she said.
"The last two were on pyschological support and they turned that down saying cancer patients can access the support in different ways, and we're going to write a rebuttal because they missed the point."
Raw and real
Sophie, now a third-year nursing student, said the $1.3 million per person cost estimate was raw and real, based not only on her experience, but her older brother Hamish's brain cancer fight. He died in 2012, a year after her diagnosis.
She had multiple surgeries, six weeks of radiation, four rounds of chemotherapy, and stem cell infusion which lasted four months.
"The $1.3 million figure doesn't shock me because I stopped being a child when my brother was diagnosed, I had to help out at home too, and I'll be having hormone replacement therapy for the rest of my life," she said.
"This number should affect everyone, because it's everywhere, cancer doesn't discriminate."
CanTeen has developed a framework to tackle the recommendations from the Deloitte report and help young Australians overcome the life-altering challenge of facing cancer during such a transformative stage of life.
"The framework highlights key research priorities and provides direction for relevant health policy, so that we can adequately care for young people with cancer and their families," said David Roder from the Youth Cancer Services Data Advisory Group.
"More research trials are needed to obtain the best evidence. Also, our health services and the health of young people and their families need to be monitored to ensure that this evidence is bringing the expected health benefits."