Robyn's Story

When Robyn was pregnant with her second child, her world turned upside down. Her mother, Helen, was diagnosed with stage IV ovarian cancer at the age of 59, a diagnosis no one ever wants to hear.

Robyn never had the chance to meet her maternal grandmother, who passed away at 49 from breast cancer. This family history meant that Helen met the guidelines for genetic testing – which could open the door to more personalised ovarian cancer treatments or trials. Helen found out she carried a BRCA2 gene mutation, which meant she could access a clinical trial as part of her treatment. This discovery also had significant implications for her family, and genetic testing became a priority.

Swift Actions and Proactive Measures

Robyn quickly undertook her genetic testing because, as she describes, she is “a woman who likes to get things done.” She was more concerned about her mother’s diagnosis than her own test results.

It turned out that Robyn inherited more than her mother’s bright smile, she also inherited a BRCA2 gene mutation. This meant Robyn had a 70% chance of developing breast cancer and 15% chance of developing ovarian cancer in her lifetime. More importantly, it meant, this risk could be passed onto her children.

For many years, Robyn has been vigilantly monitoring her health. She undertook high-risk breast screening, and she kept on top of any bumps, lumps, aches, or symptoms that were out of the normal for her. After her third child, at 37, she removed her fallopian tubes and one ovary, with a plan to remove the remaining ovary closer to 45 (as per guidelines at the time).

Helen's Legacy of Love and Support

Over the course of her five and a half years living with stage IV ovarian cancer, Helen underwent many rounds of chemotherapy and several surgeries, and cherished precious family holidays. Throughout this time, Helen’s focus was not just on her own challenges but also on her family.

Helen initially thought that risk-reducing surgery seemed like a drastic step, but near the end, her perspective shifted. She told Robyn, “I would do the surgeries if you want to,” expressing her support for Robyn to take proactive steps for her own health.

Helen passed away with Robyn by her side, at peace knowing that Robyn would be having her risk-reducing mastectomy in three months’ time. And that is exactly what Robyn did.

“I was so grateful to have the information that my mum and grandmother didn’t have. It would be sad to waste that information by not managing my risk.”

Embracing Knowledge and Making Tough Decisions

Robyn’s risk-reducing mastectomy and implant-based reconstruction initially went to plan, but she experienced some symptoms and continuing health issues. After 13 months, Robyn went back into surgery to remove her implants. She decided to go flat because it was simpler, less risky, had an easier recovery, and meant no need for additional surgeries in the future. In hindsight, she wished she’d asked more questions about the risks and complications of breast implants and been more informed before her initial surgery.

“At times I felt like I had to advocate for myself and do the research to ensure I was making an informed decision.”

The Unrelenting Impact of BRCA

A few years later, cancer struck again in Robyn’s family, serving as a stark reminder of the ongoing challenges faced by many BRCA families. Her cousin, just 36 years old and a barrister with two young children, was diagnosed with stage II breast cancer.

“I always thought the cancer would stop at my Mum’s generation. I never thought my generation would be affected and it was such a young age for diagnosis. It goes to show there’s no such thing as ‘too young for cancer’ in BRCA families.”

Robyn’s cousin had a mastectomy two days before Christmas, followed by chemotherapy in the new year. She also had her ovaries, tubes, and uterus removed to reduce her risk of gynaecological cancer because she too, was a BRCA2 mutation carrier. This is a reality for many BRCA families – cancer and cancer risk affecting multiple generations, with significant emotional and financial impacts.

Honoring a Legacy: Robyn's Role in Advocacy and Support

Having been a part of the hereditary cancer community since 2014, Robyn officially joined Inherited Cancer Australia as Programs & Advocacy Manager in February 2022. Robyn integrates her own experiences and her love for data and research into her role, striving to provide evidence-based guidance to those facing hereditary cancer risk.

“Managing hereditary cancer risk often means making life-changing decisions,” she says. “There can be a lot of discourse about what might be ‘the best’ options, but really, the best decisions are informed ones.”