Kiwi mum's BRCA1 plight mirrors Angelina Jolie's
Angelina Jolie is probably the world's most famous carrier of the BRCA1 gene mutation.
But many New Zealanders share a similar story, including Nicola Coom - she's the same age as Jolie, shares the same faulty gene, has also had a double mastectomy, and is now planning on removing her ovaries and fallopian tubes.
Coom is a 39-year-old mum who lives in Christchurch and works in human resources. That makes her sound like any one of us - but to know her is to know her battle with the BRCA1 gene and where it's taken her in just five years.
The story begins with Coom's aunty and a cousin, both in hospital for ovarian cancer back in 2005. An astute nurse at the time thought it was too much of a coincidence to have two relatives, of similar age, in hospital for the same condition. "She said to Nicola and her mum, 'you guys need to get tested'."
So with her family history in tow, Coom's mother Judy eventually got tested, and sure enough, she was found to have the BRCA1 gene mutation, which significantly increases the risk of ovarian and/or breast cancer. That's the same gene mutation that actress Jolie has now made so famous. Back then, few people understood what it meant, including Nicola Coom.
"Life was just too busy, we didn't know anything about it, so we just carried on," she says. Over a year later, her mum decided to have her ovaries removed to reduce her risk of developing ovarian cancer.
"She got into surgery, they opened her up and she was riddled with it already. It was too late." The cancer claimed her mum's life four years later.
The cancer discovery was a wake-up call for Coom and her sister to get tested. It turned out her sister was clear of the gene mutation – but she was not. At that stage, Coom hadn't "had her family yet", so removing her ovaries was not an option in her mind. So she made a plan.
MAKING A PLAN AND STICKING TO IT
"I remember telling my surgeon, 'I'm going to get married, get my breasts off, have three children and get my ovaries removed within five years'. He just looked at me and said 'you're dreaming'."
But that's just what she did.
First step was the double mastectomy. Coom had a publicly funded prophylactic double mastectomy and breast reconstruction as soon as she could.
Next step – kids.
There was no time to waste, so she and her husband got on with it. "We had three children in three years." The youngest of her three boys is only 14 weeks old.
She also started a national charity, The Gift of Knowledge, providing up-to-date information and support for people affected by hereditary breast and ovarian cancer.
This fulltime working mum now spends any free time she has updating the Gift of Knowledge website, seeking new information and organising expert conferences on hereditary cancer. For someone without a medical background, she is an oracle on all things concerning BRCA1.
Her most critical step is the one coming up. Coom is finally having her oophorectomy, where her ovaries and fallopian tubes will be removed. She is on a waiting list and expects the surgery within three months.
'I TOTALLY WANT THAT RISK REMOVED'
This last surgery is her chance to finally be at peace.
"I totally want that risk removed," she says. But she is nervous about the procedure.
"The breasts weren't a hard decision – you don't really need them. The ovaries are a very difficult decision because you do need them and it puts you immediately into surgical menopause."
But she has her eye on the future. "I know it doesn't eliminate the risk. But I'll know I've done as much as I can to reduce my risk – and give myself the best chance I can to be around for my family."
"I don't want my family to go through what I went through with my mum. I'll do anything I can to avoid that," she says.
As for her own children's risk of inheriting the BRCA1 mutation, she is aware of the risks there too. "For my three boys, there is a 50:50 chance that they've inherited the gene. If a male tests positive, they can develop cancer in the breast tissue."
But Coom's outlook is surprisingly sunny and calm. "I feel hopeful that when they are at this age, if they need to make these decisions, there will be other options available to them."
This incredible Kiwi is not surprised by comparisons of her life to Jolie's – she looks up to the actress who has opened up this subject to the masses.
"I'm so grateful to her. What she has done in the past 18 months is more than I can hope to do in the next 20 years. She has certainly put the spotlight on hereditary breast and ovarian cancers and creating awareness means people now have choices.
"Unlike many cancers, this is a cancer we can prevent," says Coom. "If my family had acted sooner, my mother would still be here today."