Jaida Wand is 17 years old and has just started her final year of high school. While most graduating students are busy thinking about the giant holiday they’re about to take, Jaida’s been making decisions about something other teenagers seldom think about: her fertility.
The Sydney student was diagnosed with stage 3 Hodgkins Lymphona in 2013. “I was in denial and I was terrified of losing my hair – I was 16 and I wasn’t ready to be bald. I was so embarrassed,” Jaida recalls.
As if that wasn’t enough to take in, she then found herself in a fertility clinic the next day, discussing the prospect of motherhood.
"I just remember being in the waiting room in my pajamas thinking, 'This is so wrong'. It was so overwhelming - I just thought I was still a baby," Jaida says.
The specialists were unsure as to whether Jaida's cancer had impacted on her ability to have children, so she decided to take pre-emptive action.When Jaida finishes her HSC, she'll undergo tests to determine whether cancer has affected her fertility. Depending on the results, there's a good chance she'll have her eggs frozen.
"I was still reeling after being told I had cancer - then I had to be told, 'Oh yeah, and you might have your fertility affected, you might not be able to have kids'. It was a double whammy," she says. "I just had to make the decision - when I thought about it, I just went, 'I want to be able to have kids when I'm older, I don't want my cancer to define me'."
Jaida's experience with cancer is one of thousands being tracked in a new, world-first health registry that was launched last month. The Australasian Oncofertility Registry was developed by a team of specialists from Sydney hospitals, led by Jaida's oncologist Dr Antoinette Anazodo.
The aim of the registry is to assist cancer patients in understanding how their reproductive health can be affected by treatments like chemotherapy, radiotherapy and surgery, and subsequently what their options are if they want to preserve their fertility. Often, patients only become aware of the implications years after their treatment, when it's too late to take action.
"It's the first register that's collecting data from cancer and fertility specialists about their patients, and it's collecting it prospectively - so from now over a long period of time," Dr Anazodo tells The Glow. By April, the register will be approved in every state, and 173 cancer and fertility centres have already agreed to participate.
The information collected will allow specialists and patients to better understand several aspects of oncofertility. For patients, it can provide a summery of their treatments and discussions with doctors years down the track when they're ready to start a family.
"Patients want to know what their risks of being infertile are, and they also want to know when or if their fertility potential was recovered. So we're following patients every year and doing tests to determine what their fertility potential is," Dr Anazodo explains. "That will let us give patients appropriate information based on their age, cancer diagnosis and treatment."