Photography: Carmen Bird
When Jody Bews-Hair last spoke to the Weekly a decade ago, she was adjusting to life after being diagnosed with the BRCA2 gene mutation. She had undergone a double mastectomy and had her ovaries and fallopian tubes removed. She was also grieving her sister Kerri, who found out too late she carried the gene to take preventative action.
Now she’s facing it head-on all over again as her daughters Zoe, 19, and Emma, 18, who have a 50 percent chance of inheriting the gene, are old enough to be tested.
“We always said to them when they were younger, ‘If you want to get tested, hopefully there’ll be an injection or a pill you can take and you won’t have to do anything more if you’re positive,’” shares Jody, 52.
“The most disappointing thing is that there haven’t been that many advances – the main options are still quite drastic surgical interventions.”
Breaking the family curse
For women, the BRCA gene mutation dramatically increases the likelihood of getting breast or ovarian cancer, and a preventative mastectomy and oophorectomy (ovary removal) is often recommended to reduce risk.
It’s devastating to keep count of how many in Jody’s family have lost their lives to cancer, including her sister, father, grandmother and uncles.
“Zoe and Emma have friends who have never been to a funeral, never lost anyone, even a pet, but they have endured so much grief up close and lost so many.”
In October 2024, Zoe, who lives in Dunedin, where she is studying law and politics, became the first person in three generations of their immediate family to test negative for BRCA.
“She was pretty level-headed about it and decided to get the results on her own,” explains Jody.
“My niece Apryl and I were messaging wildly checking, ‘Do you really want to know on your own?’ A large part of that was because everyone else has always tested positive, so I didn’t imagine it could be anything else. It was an incredible feeling when she tested negative.”
Waiting for answers
The future is uncertain for Emma, who is still undergoing the testing process, which involves consulting a genetic counsellor before taking a blood test.
“We’ve talked about it as a family,” says Jody.
“It will be jubilant if she’s negative and a very strange mixture of feelings if she’s positive.”
From a very early age, Jody and husband James decided to speak openly with the girls about what Jody and other family members had experienced, and what their options would be if they tested positive.
“One of the decisions for people who haven’t had children yet is embryo screening,” explains Jody, explaining that through IVF you can see which embryos carry the BRCA gene mutation and choose not to use them.
A heartbreaking what if
“That’s an incredible dilemma because if we had done that, we wouldn’t have these two spectacular, incredible girls. But it’s something I quite possibly would have chosen if I were in a different age bracket [Jody found out at 40] because then you can stop it from ever affecting your grandchildren. “For us, it’s multiple generations widowed or orphaned, so having some options is amazing. They weren’t there for my grandmother, who died in her forties and left three sons or for my sister, who was only 48.”
Jody is quick to add that BRCA doesn’t just affect women. Her dad was the carrier who passed it to her. He died at 34 from melanoma, which also has a slightly increased risk with the gene, and his brother had breast cancer.
This Breast Cancer Awareness Month, Jody is joined by Zoe, Emma and Apryl, sharing their family’s story in a series of short films about inherited cancers for the NZ Familial Breast and Ovarian Cancer Trust.
“I’m incredibly proud of these three young women and their willingness to step up, speak out and be seen,” enthuses Jody.
Apryl lost her mum Kerri when she was only 19. That same year, she tested positive and, at 22, underwent a double mastectomy.
A bond forged in adversity
“Apryl and I are exceptionally close,” shares Jody.
“I watched her birth, we were there together when her mum – my sister – died, and we were each other’s hospital buddies and looked after each other through our own surgeries.”
Jody hopes the films and their advocacy work will encourage others to get tested and influence GPs to become more informed about inherited cancer. For her girls, she dreams of a future where one day they will all be free of the BRCA shadow.
“I hope they have incredible opportunities, and that we have more and more medical advances in this area. Hopefully, it will have stopped in my family and if not, we’re pretty well prepared to
look after each other.”
Watch the short films at nzfboc.org.
