A life-changing choice
Suzanne McFadden meets four inspiring women who underwent preventative surgery after discovering they had the BRCA gene, linked to an increased incidence of breast and ovarian cancer.
In New Zealand this year, 3000 women will be diagnosed with breast cancer and 350 more with ovarian cancer. And, many more will go under the radar. But now, more Kiwi women are able to discover through genetic testing if they carry a cancer-causing gene mutation, as actress Angelina Jolie did, so they can minimise their cancer risk.
“Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness,” Angelina wrote in The New York Times after choosing to undergo a preventative double mastectomy in 2013. “But today it is possible to find out… whether you are highly susceptible to breast and ovarian cancer, and then take action.”
Between five and 10 per cent of breast cancers – and 15 per cent of ovarian cancers – are the result of inheriting a faulty gene. The BRCA1 and BRCA2 gene mutations carry the highest risk of breast or ovarian cancer.
The two pairs of BRCA genes play a protective role in preventing cancer, but a fault in one of those genes gives a higher-than-normal chance of a tumour developing, usually at a younger age.
Depending on individual and family factors, women with the mutation have a 40 to 90 per cent chance of developing breast cancer.
“Screening is a very important issue, particularly for mutation carriers,” says Professor John Hopper from the University of Melbourne’s Centre for Epidemiology and Biostatistics at the Melbourne School of Population and Global Health.
“We know having your breasts removed lowers your risk of breast cancer and having your ovaries removed lowers your risk of ovarian cancer, but no one is laying down rules for what women should or should not do. It’s a personal issue if, and when, to have preventative surgery.”
October is Breast Cancer Awareness month in New Zealand. Breast Cancer Foundation NZ urges all women to be breast aware – “Know your normal” – so any changes can be reported to your doctor. Early detection saves lives.
Because we aren’t identical twins, I had a 50/50 chance. But it wasn’t my day at the casino.
Vivian Gubb and Erica Third Twin sisters Vivian Gubb and Erica Third could almost feel indebted to a tiny flea.
Two years ago, Vivian found a flea bite on her breast – which led her to discover a deep-seated lump. “I knew my breasts – I monitored them all the time – so I knew it shouldn’t be there,” she says.
The cancer was on the verge of entering her chest wall. “A couple of months longer, and it would have been curtains for me,” Vivian, now 31, says.
It started a “massive snowball effect”. Three generations of her family were tested for the BRCA gene mutation. The twins were positive, while another sister, who was 18, was negative. A younger sister is not yet old enough to be tested.
Vivian had a double mastectomy: “There was no point in trying to save the other breast.”
Erica recalls the “crazy wash of emotions” – first learning her twin had cancer, and then, too, testing positive for BRCA1. “Because we aren’t identical, I had a 50/50 chance. But it wasn’t my day at the casino,” she laughs.
Having supported her sister
“through every step of the cancer process”, she didn’t want her daughter Keira, now eight, to experience that with her own mother. “So it was absolutely a no-brainer for me to have a double mastectomy – it was just a pair of boobs,” she says. “We are so fortunate in New Zealand to have that procedure publicly funded.”
The sisters will reassess having their ovaries removed before they turn 40. “Knowing you’re waking up every day having done whatever you could to reduce the risk, is so important in life,” says Erica, who lives in Hamilton.
Vivian, who lives on a farm south of Auckland, feared chemotherapy would rob her chances of a family. But after an emergency IVF cycle, she has a son, nine-month-old Blake. With husband Clinton, she hopes to try for another.
Vivian’s experience has changed her priorities. “I’ve spent a lot of my life being there for others, putting all my dreams on hold. Now I know how very important it is to take time out for yourself and be with family.”
I was forced to quickly look at my life, and I realised things were going to be out of my control.
Ashleigh Stellard At 18, Ashleigh Stellard had her dream job in the Royal New Zealand Navy, and was off to see the world.
But it also became the year she learned she had the BRCA1 gene mutation; the year her young life was “put on hold”.
With a strong family history of breast cancer and cystic fibrosis, Ashleigh underwent genetic testing just before she was deployed to SouthEast Asia. She returned home to the results. “I was expecting one or the other – and it was positive for both,” she says.
“I was so young, I didn’t really understand what it meant. I was forced to quickly look at my life, and I realised things were going to be out of my control. I thought I didn’t really stand a chance against this. I felt like ‘why me?’”
The decision to have both breasts removed at the age of 21 wasn’t difficult, but Ashleigh had one condition – to keep her nipples. “I’d seen a nipple-sparing mastectomy done on a UK documentary, and so I asked the surgeon. I was told there was risk involved, because we wouldn’t be fully eliminating the risk factor and I’d still need regular checkups on the nipples,” she says. “But I fought for it. I took the risk because I was young and I wanted to be as normal as possible.”
Ashleigh had an immediate breast reconstruction using expanders, which were replaced a year later with silicone implants.
It wasn’t until Ashleigh had her first son Kyan, now two, that she had fleeting moments of regret. Bottle-fed Kyan struggled with milk formulas; his mum “struggled with a lot of blame… I felt I had made a mistake in not waiting, and the pressure of not breastfeeding got to me.”
But with her second son due any day, 29-year-old Ashleigh is doing things differently. Through Human Milk 4 Human Babies, she’s filled the freezer in her Upper Hutt home with donor breast milk. Those regrets are now long gone.