At just 15, Rebecca Zivkovic should have been making decisions about what she wanted to study in her final years of school.
Instead, diagnosed with cancer, she was deciding whether she should undergo IVF.
"I think at any age it's tough, but at 15 it was even more of a shock,” she told SBS News.
“Having your first IVF appointment on your 16th birthday is kind of crazy."
Rebecca during her treatment. Source: SBS News
Rebecca had Ewing’s sarcoma, a rare form of cancer that grows in the bones.
A tumour had developed in her sacrum, at the back of the pelvis, and she needed chemotherapy and radiotherapy straight away.
Doctors warned that her cancer treatment could affect her fertility, and there were options for egg preservation available. But thinking about having children was so far from her mind.
“At the time, it was kind of daunting,” she said.
“I thought, 'is this really something that I need to be thinking about?'”
'We had to give her a future'
Within just days of her diagnosis, with her parents by her side, Rebecca made the decision to delay treatment by a few days, so she could freeze her eggs.
Her mother Ruth says it was a very confronting process.
Rebecca and her mother Ruth. Source: Supplied
“It was a conversation that I never thought I'd have with my 15-year-old, ever.”
“But we had to give her a future. We couldn't just say 'we want to save you here and now', we had to think about long-term."
Rebecca is one of many patients benefiting from the emerging discipline of research called oncofertility, that connects oncology and fertility to explore options for the reproductive future of cancer survivors.
Survival rates have drastically improved for those with many of the common cancers in Australia, so it's no surprise more patients are thinking about their future beyond the disease.
Rebecca made the decision to freeze her eggs. Source: Supplied
One in 10 cancer patients of reproductive age - defined as 15 to 49 years of age by the World Health Organisation - are said to experience short-term, or long-term infertility as a result of their treatment, according to .
But despite Rebecca’s experience, not everyone is being given the opportunity to make informed choices about their fertility.
Only half of patients being told
In a global systematic review of the past ten years of oncofertility studies, published in the journal in November 2018, research suggested less than half of cancer patients of reproductive age are being informed of reproductive risks by their clinicians.
And in 25 per cent of cases, it’s the patients, or their loved ones, who actually raise the issue of fertility with their cancer specialist at diagnosis.
Adolescent oncologist Dr Antoinette Anazodo led the research and is now leading the push to improve those statistics at hospitals around the country.
She is currently working on an education module to better inform cancer care providers about fertility preservation, and on improving pathways between clinicians and fertility providers so that there is better communication between the two disciplines.
Adolescent Oncologist Dr Antoinette Anazodo said discussions about fertility preservation should be a part of standard cancer care. Source: SBS News
She says it undermines a patient's trust in their doctors if they feel ill-informed.
"When they find out, either from other patients or from the magazines that there's something that they weren't offered, they begin to second guess everything that's happened,” Dr Anazodo said.
“No one wants to find out at the time that they are trying to have a family, that there is something that could've been done years before.”
She said discussions about fertility preservation are currently not a standard part of cancer care in Australia, despite the country having a “rich history” in IVF technology.
To make sure every cancer patient is given the opportunity to reap the benefits of these technologies, she said clinicians need to be better educated on what options to give patients, and where to refer them to.
"The challenge is educating our colleagues and making sure that they know that it's an important part of a service,” she said.
“In the same way hearing tests and lung function is just a normal thing that we do for cancer patients."
'Clinicians shouldn't make assumptions'
CEO of the Australian Cancer Council Professor Sanchia Aranda agrees.
She said it's also about doctors being open-minded and not making assumptions about their patients based on age or relationship status.
Professor Aranda said she'd heard cases where doctors had assumed men and women in their late 30s and early 40s weren’t interested in fertility preservation because of their age.
Dr Anazodo in the lab at The Fertility and Research Centre. Source: SBS News
"It's really important that the treating team doesn't make an assumption that an individual has no concerns about fertility, so asking everyone whether they want to hear information about fertility preservation is a really important first step," Professor Aranda said.
And although some major hospitals in capital cities have begun implementing pathways for cancer patients to access fertility specialists, she said, like many facets of cancer treatment, there is a lack of access in regional Australia.
"Regional patients are at somewhat at a disadvantage, even something as simple as sperm donation can be difficult if you're remote from a sperm bank,” she said.
“But it also may be that regional doctors, particularly the non-specialist doctors, have less understanding of what fertility options are available and how to refer patients to those."
Delaying treatment
While fertility preservation in men has been commonplace for decades (sperm donation is simple and inexpensive), it's a much more recent, and complex process for women.
Female patients can now undergo options like egg or embryo freezing, or taking a strip of ovarian tissue to preserve. The latter is an emerging technology which can be done in girls as young as six years old.
It does mean delaying chemotherapy or radiotherapy by a few days though, or in some cases, a few weeks.
Embryo, egg and ovarian tissue freezing are all possible in Australia. Source: SBS News
Professor Fran Boyle from the Clinical Oncology Society of Australia - the peak national body representing health professionals who care for cancer patients - says some doctors are wary about fertility preservation because of the delay to beginning treatment.
She said as cancer clinicians, their main focus is on giving their patient their best chance of survival.
"You've got a very vulnerable patient, anxious to get underway with treatment for a life-threatening condition, and weeks to wait," she said.
"I'm sure that there are oncologists in the past who've been burnt by that experience, and felt that they were really disadvantaging their patients," she said.
Professor Fran Boyle said oncologists have been hesitant to talk about fertility in the past because it means delaying treatment. Source: SBS News
But, she said, as technology in fertility preservation continues to improve, including much faster turnaround times - meaning treatment is only delayed a day or two - it is an important duty for clinicians to include the conversation in their standard care.
"I think there are good reasons why doctors and patients haven't always discussed fertility preservation - like distress [to the patient] and speed [of fertility treatment], and I think those things have changed," she said.
"It really does behove all health professionals involved in cancer care to put fertility on the checklist."
Power of choice
Bill Ledger is a professor of gynecology and obstetrics at the University of New South Wales. He advises cancer patients about fertility preservation on a daily basis and said just having the knowledge and the choice can make the patient feel in control.
"At our clinic, only about half of the people we talk to, do something,” he said.
“The other half though, are always grateful they had the opportunity to come and speak with someone who really knows this area of medicine, to help them make an informed choice.”
NSW Health Minister Brad Hazzard, Professor Bill Ledger and Dr Antoinette Anazodo opening the Fertility and Research Centre earlier this month. Source: UNSW
Professor Ledger and Dr Anazodo are now running The Fertility & Research Centre, based at the Royal Hospital for Women in Sydney, which opened earlier this month.
Funded by the NSW government and the University of New South Wales, it's the first of its kind in Australia, offering free IVF treatment as well as on-site fertility preservation services for young people with cancer and rare genetic diseases.
Rebecca is one of their new patients.
Rebecca is now cancer free. Source: SBS News
Now 18 and cancer-free, she has a five per cent chance of conceiving naturally.
But with a handful of healthy eggs stored away for when she's ready, she's looking forward to the future.
“Even though it is scary, I think it should be a conversation that you're a part of, because it is your life and you should have some control over it,” she said.
“I’m just grateful that I had that opportunity at all."
CanTeen offers support for young people affected by cancer. If you are aged between 12-25, visit canteen.org.au or call 1800 835 932.
