At 26, Josie learned she carried the BRCA1 gene mutation, a discovery that came after her mother’s breast cancer diagnosis. In the early days after learning her gene mutation, Josie found herself navigating the complexities of managing her cancer risk largely on her own. Her two sisters tested negative, her brother remained untested, and her friends couldn’t fully understand her experience.
Despite sharing the same BRCA1 gene mutation, Josie chose to keep some distance from her mother, who was recovering from the effects of her cancer treatment at the time. In her own way, she is protecting their relationship by not adding to her mother’s stress. However, this decision also left Josie feeling isolated as she navigated her own experience.
Overwhelmed and confused
Discovering her gene mutation overwhelmed Josie with confusion. This was around the time Angelina Jolie publicly shared her BRCA experience, flooding the media with stories about risk-reduction surgeries like mastectomy.
Already grappling with her own genetic test results, Josie felt further stressed by the options presented by the media. “It almost felt like everyone was having preventative mastectomies, and there was only one way,” she said.
Feeling trapped, Josie wasn’t ready for a mastectomy and wanted more options. “I wasn’t resonating with any of it. So I stopped reading those stories altogether,” she shared.
Josie decided to hold off risk-reduction surgeries, planning to revisit the decision at a later age. “When I first learnt about my gene mutation, I still had a lot of life to live. I didn’t want that gene mutation to define me or my path in any way.”
“My intuition was saying it’s not my time. I always told my oncologist, ‘At 40, I’ll have my ovaries out. At 45, I’ll talk to you about my breasts. But not now, not sooner.’”
Regular screening became Josie's routine
Josie began screening every six months for over ten years. This routine brought cycles of stress and anxiety. The time leading up to a scan, during the scan, and waiting for results each brought different levels of anxiety, and Josie experienced this cycle every six months for over a decade.
Josie recalls the challenge in the early days, “It was very hard. I remember just crying through the whole MRI.” But over time, it got easier.
“Now it’s a feeling of, ‘It’s out of my hands now; I’ve done the scan!’ This mindset and guidance from a complementary medicine practitioner helped me become stronger.”
The right time is now
Josie had her ovaries removed at 40 after having finished her family, just as she planned. But news from a close friend made Josie reconsider her plan for a preventative mastectomy. Her friend was diagnosed with breast cancer in late 2023. This devastating news sparked something in Josie, as if a gentle inner voice hinting that it might be the right time.
“I always knew in my heart that I would know when it was the right time, and that time is now. I’m trusting myself to know now is the time. I don’t want my daughters to go through breast cancer with me. I can’t guarantee I won’t get sick in general, but at least I can assure them they’ll never go through what I did when my mum had breast cancer.”
Recognised strength from a quiet observer
Josie, at 41 now, scheduled her mastectomy a week after this interview. When she did her final MRI screening recently, a little encounter with the MRI technician warmed her heart.
“The technician and I never really knew each other, but he was my MRI technician for many years, he said to me, ‘I watched you walk in here every year, and I recognise you every year. You come in, you get it done and you leave. You are just so strong.’” Having a stranger recognise her strength meant a lot more than she expected.
"Trust your intuition"
Josie acknowledges that her experience was challenging but also empowering, she hopes her story resonates with others facing similar situations. “If I can make one woman read my story and think, ‘No, I don’t want to have surgery yet, and that’s okay. Because someone else also didn’t have it straight away,’ then sharing my story is worth it.”
For those experiencing information overload, Josie reassures them that it’s okay to listen to their gut. Everyone makes different decisions about managing cancer risk, and these choices are deeply personal, reflecting each individual's values, needs, and experiences.
“Trust your intuition, listen to yourself. Understand what’s right for you. We are surrounded by information, and it can be really confusing. You just have to come back to yourself and ask what’s right for you and your family, and what you can afford.”
Find your circle of support
Josie cannot stress enough the importance of having a circle of support. Navigating hereditary cancer risk is not easy, and having a support network with people who are willing to listen and guide you makes all the difference.
“Find the right people. It can be someone professional, someone in the community, your partner, your mum, your dad, your sister, your best friend, even your boss at work. Whoever it is, find the support you need to get through your experience."
Update in August 2024: Josie underwent her risk-reducing mastectomy in April 2024. More than three months later, she reflects on her experience, “Would I change any part of my decade-long experience? No. Am I eternally grateful for every family member, friend, medical professional and complementary medicine practitioner who supported her every step of the way? YES!”
