lifestyle

Yes - a world-first breakthrough for cancer survivors dealing with their future fertility.

Images: supplied

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.

Jaida Wand.

"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'."

“I’m 23, single, and freezing my eggs. This is why…”

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.

Dr Anazodo and Jaida

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."

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Dr Anazodo's team also want to use the register to raise the issue of how much fertility preservation measures cost. For example, one cycle of IVF can cost up to $10,000, of which patients get just under half back under Medicare. That's not counting additional costs like anaesthetics.

The beautiful moment a 5-year-old cancer patient met bald Cinderella.

"For the majority of patients, finding that money the week they have the cancer diagnosis is 1. not a priority, and 2. most people don't have a spare $10,000 lying around, even if they know they'll get half back. We want to be able to advocate and lobby the government to make fertility preservation appropriately covered by Medicare," she says.

The register may also help cancer and fertility doctors better understand each other's treatments and strategies, and appreciate the complications that can arise during referrals. "Cancer treatment is very complex - we've got to upskill both [types of specialists] so they learn about the barriers and how to get around them," Dr Anazodo says.

Jaida Wand can't wait to go travelling and see the world.

Although the data collected will provide countless medical benefits for patients, it'll also support them through the psychological experience of being confronted with possible infertility.

"[It's] not only having to undergo fertility preservation. but also the worry about the future in terms of future parenthood ... Cancer patients really struggle with their identity, their sexuality and what it all means," Dr Anazodo explains, adding that this uncertainty and worry doesn't only apply to female patients.

"We spoke to a young man yesterday who had childhood cancer and is now in his 30s; he said, 'I can't discuss it with any of my male friends.' [The register] is trying to get the message around that there is stuff we can do ... and there may be other options in terms of surrogacy or adoption. It's not the end just because you can't have your own genetic children."

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For Jaida Wand, the decision to freeze her eggs has offered her a degree of relief and control.

"Now I don't have to worry, I guess. It'll be comforting, so I don't have to wake up in the middle of the night when I'm 20 and go, 'God, what if I won't be able to have kids?'," she says.

Jaida's looking forward to what lies next. "I want to go travelling and I want to go to uni. I just want to live the most, because being in hospital, even just for 6 months, it messes you up. This time next year I'll be free."

You can find out more about the Australasian Oncofertility Registry here.