“I look into my kids' eyes, and they don't have the gene. I'm never going to have to worry like my mum worried about us. I just feel lucky.”
Jess and Nicole both found out they have the BRCA2 gene variant when they were in their 20s. Within a year, Jess was diagnosed with triple negative breast cancer. Her diagnosis changed the family planning timeline for both sisters. It also led them into IVF for very different reasons, and with very different experiences.
Learning about genetic risk
Jess and Nicole’s paternal grandmother died of breast cancer at just 34. Years later, their uncle heard about genetic testing through his work as a doctor, and the family began looking into it. Nicole also asked her GP about testing, but was advised not to. “Why would you want that hanging over you? You’re too young,” she remembers being told.
That didn’t sit well with the family. Their father and uncle went ahead, and both learned they had the BRCA2 gene variant. Jess and Nicole were then tested, and both tested positive in 2016. It changed what Jess and Nicole understood about their own health and the health of their future children.
Making screening feel routine
Jess and Nicole followed a breast and ovarian screening plan. In their 20s, that felt like the right approach. They’d been shown a graph showing that their chance of cancer rose much later in life. “They said, ‘you don’t have to worry, live your life as normal.’ We both thought, knowledge is power. We’ll do this six-monthly testing,” Nicole says.
The sisters decided to get their screening done together, then get a small treat afterwards, like a bit of shopping. It helped make the routine feel more normal. Their first screening was clear. When their second screening came around in July 2017, Jess had recently moved to Singapore with her fiancé and was back in Sydney for both the appointment and her 30th birthday.
“We were pretty blasé about it. I was coming home for my birthday and the little screening was just a side thing,” Jess says. “Because we just thought this is never going to happen to us.”
But this time was different. Doctors found something on Jess’s scans and asked her to come back the next day for a biopsy. Soon after, she got the call telling her not to leave the country. She had triple negative breast cancer.
Fertility preservation as part of treatment
For Jess, fertility and in vitro fertilisation (IVF) came up in her very first appointment with her breast surgeon as part of a much larger treatment plan. “I was told that I’d need chemotherapy and the IVF was in case my eggs didn’t survive the chemotherapy.”
This type of IVF wasn’t about trying to have a baby straight away, but about preserving the option for the future.
Her cancer was fast growing, so everything moved quickly. The speed of it pushed her and her partner, Travers, into difficult conversations they hadn’t expected to have, even touching on questions like what would happen to the embryos if she didn’t make it.
“I just didn’t think we were going to have this conversation.”
Like Jess, he focused on what they needed to do next. “We didn’t dwell too much on those parts. It was just, what do we need to do to make sure we can have a family?”
That same approach carried across her family. They made decisions together, working through each step with the information they had. “Whenever we went to an appointment, it was me, my husband, my sister, both my parents. It was always a rush to find more chairs for this ‘crazy’ family.”
Jess had a lumpectomy first, then IVF, followed by chemotherapy and later a double mastectomy with reconstruction. It wasn’t something she went through alone. Her family, especially Nicole, were part of every step.
How her thinking about fertility changed after diagnosis
Before her diagnosis, Jess had felt differently about IVF. When she and Nicole first learned they had a BRCA2 gene variant, they had talked about IVF with genetic testing, often called PGT (preimplantation genetic testing), as a way to reduce the chance of passing the gene on to their children. This means embryos created through IVF can be tested for genetic conditions before being implanted.
At the time, Jess wasn’t sure it was something she would choose. “I didn’t really see the need,” she says. “I thought, Nicole and I have the gene, and we’re okay.”
But her diagnosis changed how she thought about it. “Once I got sick, I thought, if I have a choice to not pass this on to my children, I’d take it,” she says. “It felt different when it became real.”
For Jess, the decision felt clear, both to her and to the people around her.
A different path to the same IVF decision
Nicole’s path looked very different. Jess’s diagnosis made the chances of inherited cancer feel more immediate and more real. “It was terrifying. We were thrown into a world of huge life-altering decisions we were ill-prepared for at our age,” Nicole says. Their family has Ashkenazi Jewish heritage, which is associated with a higher chance of BRCA gene variants. But at the time, there wasn’t much open conversation about genetic risk or testing in their community.
Nicole paused plans for a family with her husband, Matt, while Jess went through treatment. Afterwards, she saw a genetic counsellor and was told she had an 89.7% chance of developing breast cancer. She had a preventative double mastectomy and reconstruction in 2018, then started IVF with PGT in 2019.
“I’m not waiting for this to take me. And I knew I didn’t want to have a child with this gene, having just seen what my sister had gone through.”
The IVF experience people don’t always see
Unlike Jess, Nicole didn’t fit the picture many people have of someone having IVF. She wasn’t going through cancer treatment or experiencing infertility. Her reason for being there was different, and not always well understood.
“There’s still stigma around it. I know a lot of people are uncomfortable with the process, like you’re ‘messing’ with nature,” she says. “It’s like, you’re choosing this, why would you put yourself through all of that? People don’t get it.”
For Nicole, those reactions could feel isolating. It also shaped how she moved through the process, often keeping it private.
Keeping things private meant going through a demanding process quietly. Nicole was working full-time as a lawyer, fitting appointments around work. “Every single morning when that clinic opened at 8 am, I was there having either a blood test or an ultrasound. It’s a lot of appointments, a lot of waiting around and a lot of injections every night.”
There was also the financial pressure. Even with a stable career, the cost was significant. For many people, that can make this option difficult to access. “In the end, I had to have help from my parents because it just wasn’t feasible for us to do it otherwise. Just the cost of it was exorbitant.”
Even with all of this, Nicole stayed focused on what it could mean for her future family.
Changing the future for their children
Nicole found IVF physically, emotionally and financially demanding, but also something she saw in a wider context. “I could look at it and think, poor me, this is so hard,” she says. “But I think about my grandma and the women before us who didn’t have this chance. And I try to flip it and think that we’re lucky.”
That doesn’t take away from how difficult it was. “I had 70 days of needles at one point, because in the first round all the embryos had the gene.” Even so, Nicole always comes back to what it made possible. “I look into my kids’ eyes and I see they don’t have the gene. I’m never going to have to worry like my mum worried about us. I just feel lucky.”
For Jess, that is what it comes down to. “What our grandma went through, and what we went through, we did that so they don’t have to,” she says. “That’s what it’s about.”
The ICA community helped Jess and Nicole feel understood in their decisions. Now, they share their story so other families can feel that same support and make informed decisions together.