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.

Australian Women’s Weekly NZ - - BREAST CANCER AWARENESS MONTH - PHO­TOG­RA­PHY EMILY CHALK STYLING LULU WIL­COX HAIR AND MAKE-UP CLAU­DIA RO­DRIGUES

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.

Ash­leigh and her son Kyan, aged two.

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