UNLOCKING THE CODE

Fashion identity Leandra Medine opens up about her IVF experience and supporting a local initiative to help raise funds for vital cancer research.

Fashion identity Leandra Medine found out when she was 24 she carried a genetic mutation that places her at a higher risk of developing breast and ovarian cancer. This month, the mother of two opens up about her IVF experience and supporting a local initiative to help raise funds for vital cancer research. By Sophie Hexter.

LEANDRA MEDINE WALKS into Spring Studios in New York dressed in a grey Henley top and a pair of loose, white trousers accessorised with conversation-starting jewellery. Like other fashion identities, seen mostly on Instagram feeds, she is minute in real life; an exotic blend of strong, angular features atop caramelly, sinewy limbs.

Medine, who is best known for her blog Man Repeller, which she started in 2010 (but is more mega publishing platform these days), is a passionate powerhouse. It’s easy to be intimidated by the clear brilliance of her mind; the way sentences spark behind bright, intense eyes, before sliding fully formed and punctuated out into the world.

But the 30-year-old is not here today to talk about her brand – she’s here to discuss carrying the BRCA1 gene mutation, which predisposes her to a significantly increased risk of developing breast and/or ovarian cancer, and her participation in a short awareness film, The Nightside.

BRCA, which stands for (BR)east (CA)ncer, is a gene mutation inherited from one of your parents. It was rarely heard outside medical vernacular, but in 2013 an op-ed written by Angelina Jolie in The New York Times, detailing her own diagnosis with BRCA1 and her decision to undergo a preventative bilateral mastectomy and reconstruction (followed two years later by the prophylactic removal of her ovaries and fallopian tubes), took it mainstream. Within weeks, Time placed Jolie on its cover with the headline ‘The Angelina Effect’, and there was a sudden spike in the number of high-risk women requesting the same preventative surgery.

Professor Geoff Lindeman, head of breast stem cell biology and translational breast cancer research at the Walter and Eliza Hall Institute of Medical Research in Melbourne, says BRCA was first discovered in the early 90s thanks to improved DNA sequencing technology. BRCA1 was officially stamped in 1994, followed a year later by a second gene, BRCA2. Lindeman explains that women who carry a faulty BRCA1 gene have a 70 per cent chance of developing breast cancer and a 40 per cent chance of developing ovarian cancer. Those rates differ slightly for BRCA2 carriers, but the risk is still significantly elevated.

Medine, who has a severe history of breast and ovarian cancer in her own family, discovered she carried the gene at 24. “My mum was a carrier and her mother had died from breast cancer, so I decided to get tested. It’s jarring to be confronted with your morality at such a young age,” she says. “But then again, I wasn’t being told that I had cancer, but rather that I carried a gene that put me at high risk of developing it.”

Still, Medine knew nothing was going to stop her hankering for a family. She married her husband, Abie Cohen, in 2012 (before being tested for BRCA) and recalls thinking: “It doesn’t matter if I know that I carry the gene, because I want to have a family, and I can’t have the preventive surgeries I need to have until after I have my children.”

After trying to conceive naturally, and suffering a miscarriage, Medine says: “It was becoming clear to us that our path to parenthood would be via IVF.” It would also effectively allow her to eliminate the presence of the BRCA gene in her own lineage. “We thankfully harvested 13 very good quality embryos, but nine of them carried the gene, which just goes to show you how salient it is if you’re a carrier,” she affirms.

According to Lindeman: “Parents who carry a BRCA gene mutation have a 50/50 chance of passing that gene down.” Says Medine: “The ability to harvest and implant embryos free of the gene mutation made me incredibly grateful for science.” Today, she is raising almost 17-month-old twin girls Madeline and Laura, who will never have to worry about passing the gene on to their own children.

Medine, together with eight other women from Australia and America, is starring in a short awareness film, The Nightside, which aims to educate and empower a new generation of BRCA carriers. “It’s about taking the fear out of knowing and replacing it with knowledge and action,” says Ellie Rogers, a BRCA1 carrier and breast cancer survivor. Rogers and her sister Lisa Bardas will launch the Winter Ball on August 10, an annual fundraising event held in Victoria. The Nightside will premiere at the event, with the hope of raising a million dollars for Professor Lindeman and his team to continue their work.

Lindeman points out that a faulty BRCA1 or BRCA2 gene mutation is present in about one in 500 people in the general population, and one in 40 in those of Ashkenazi Jewish descent. Like Medine, Rogers is a mother of two and her entire adult family, bar one, found out they carried the gene after she was diagnosed with triple negative breast cancer in 2017. “Our mission now is to support the work of Geoff and his wife, Professor Jane Visvader, so that our children can live safely inside their beautiful bodies,” she says.

The team, led by Professor Lindeman, has pinpointed the culprit cell that gives rise to breast cancer in BRCA1 mutation carriers and discovered these cells carry a protein marker called RANK on their surface. It also found that a drug called Denosumab (already FDAapproved to treat women with bone disease) can switch off RANK signalling. Now the drug is being repurposed and trialled as a breast cancer prevention drug in BRCA1 carriers. “I think we’re lucky to live in a day and age where breast cancer detection is easier than it’s ever been,” says Medine, who currently undergoes quarterly screenings. But while regular check-ups should ensure that any potential cancer is detected in its infancy, there’s still no concrete method to measuring the madness of multiplying cells. “For women with a faulty BRCA gene, regular breast screening is helpful to detect breast cancer, but it does not prevent it,” states Professor Visvader.

At present, the most effective preventative strategy for high-risk women is invasive surgery (bilateral mastectomy and the removal of both ovaries and fallopian tubes) and Medine reveals that she will have a hysterectomy at 35. She, along with the others interviewed for The Nightside, is sharing her story not only to educate and empower other young women (and men), but also to help strip away some of that fear of being a BRCA carrier. Knowledge, power, strength, self-embodiment – these are the messages these women want to impart.

“If I can help just one young woman get tested, that’s the best I can hope for,” says Medine. “Knowledge is power, right? It’s about learning the truth and being willing to confront it and act upon it.”

For more information, or to donate, go to www.thewinterball.org.

The Nightside, directed by Sophie Hexter, will premiere at the Winter Ball, before screening widely online.

“It’s jarring to be confronted with your mortality at such a young age”