Samantha Pooke is to have a preventive double mastectomy. Photo / Ashburton Guardian
Her mother, aunt and grandmother died of breast cancer. Samantha Pooke is opting for surgery to ensure she survives.
Next month, 25-year-old Samantha Pooke will have surgery to remove both her breasts. It's not a decision she's made lightly. Instead she says it means she won't have to "live in fear".
Pooke's mother died of breast cancer in 2014, four months after her father died in an accident. Her aunt died of breast cancer aged 40, and her grandmother died of breast cancer when her mother was 20. Pooke's only immediate family left is her older brother.
Now the Canterbury woman faces a four-hour preventive double mastectomy and breast reconstruction.
The operation will leave her unable to work for two weeks, unable to exercise, other than walking, for four months, unable to drive for at least a month, and able to lift little more than a cup of a tea for six weeks.
Unlike actress Angelina Jolie, who knew she carried the BRCA gene mutation before she had her breasts removed, Pooke is in the dark about her exact genetic risks.
Her mum Trish was tested for BRCA gene change, which is linked to breast cancer, but her results were inconclusive. Pooke cannot be tested because doctors need a positive result of a family member with cancer to compare her genetic material.
"Mum always feared getting breast cancer. She often made comments around things she thought she wouldn't be here for and what she wanted at her funeral.
"It's really hard hearing that coming from your mum, because you don't want to imagine losing either of your parents, especially when you're young."
Pooke said she did not want to live in fear. "I want to live to see my children get married and be around for my grandchildren, things Mum would have absolutely loved, but won't be here for."
Her mother paid for additional mammograms each year but they didn't detect her cancer, a rare form that began as a rash. She was diagnosed in December 2012 and a year later, the cancer had spread through her body. She could barely walk and was spending a lot of time in hospital.
Then the unthinkable happened - her fit, healthy and always supportive husband of 30 years died in an accident. Funeral preparations were made around her hospital bed and she attended in a wheelchair. Four months later, she lost her battle with cancer.
Carrying on without my parents was hard, but I know they would have been supportive of what I've done.
Pooke, a personal assistant at Brophy Knight chartered accountants in Ashburton, finds talking about her parents' deaths tough.
She grew up in a tight-knit family on a farm in an isolated area near Geraldine in Canterbury.
"My friends who grew up in town would spend a lot of time at each other's houses but I spent a lot of time at home with Mum or on the farm with Dad.
"When I moved away, I would call Mum every day, often multiple times, about every little thing.
"After she died, I would often instinctively pull out my phone to call her then a few seconds later, I'd realise."
Since her parents' deaths, Pooke has bought her first home and become engaged to her partner, who supports the operation.
Preventive or prophylactic treatment gained prominence after Jolie underwent a double mastectomy in 2013 and had her ovaries removed last March. Jolie's mother, aunt and grandmother died of cancer, and she was found to have the BRCA1 gene mutation.
Pooke believes Jolie was invaluable in building awareness of preventive surgery but says it is still seen as something women do after having children.
"My doctor got me to meet women older than me and a woman younger than me who had had preventive mastectomies before I booked mine to make sure I was certain I wanted to get it done now.
"It's a big operation and a lot of women wait until after they've gone through breastfeeding, but that's not as important to me as lowering my risk as soon as I can."
NZ Breast Cancer Foundation medical adviser Dr Meredith Simcock said women of all ages had the surgery, with a notable increase in inquiries after Jolie's surgery.
"There's not a 'right' time. We discourage it before 20, not only because your risk is low then, but also because there's normally a lot of other things going on in your life. After that, it comes down to how you feel about risk and breastfeeding."
Pooke believes her parents would have supported her decision. "Carrying on without them was hard, but I know they would have been supportive of what I've done and of the operation. I have no choice."
Samantha Pooke is the cousin of reporter Catherine Gaffaney. Samantha's aunt, who died aged 40, was Catherine's mum. She faces the same situation of possibly having the breast cancer gene. Here, she talks about her experience.
Mum died 2001. I was 9. She had been fighting breast cancer for four years. Her cancer had already spread when it was detected; her chances of beating it were never good.
It's confusing as a child when your mum is the kind of sick that means she might not get better.
I remember some things well - a boy in my class asking if it was true my mum wore a wig, Mum spending hours putting her favourite family photos in an album, and the endless food, cards, hugs and kind thoughts from family, friends, neighbours and people I didn't know.
Other things blur with what Dad told me in later years. After Mum died, Dad got a nanny to help with my brother, who was 10, and I. We went back to school, picked up our extra-curriculars again and spent quite a bit of time with extended family.
We were lucky to have a dad who did everything he could for us, supportive teachers and family living nearby.
But it was still hard then, and sometimes still is. I was really into books, teddy bears and anything pink - another world to my dad, a farmer; and brother, a sporty, outdoorsy kid.
Anniversaries and big events such as my school-leaver's ball, university graduations and 21st-birthday parties are hard.
And there's always been things, big and insignificant, I really wish I could talk to her about.
I have the same family history as my cousin, Samantha. My mum, aunt and grandma died of breast cancer. However, I'm 23 and am not considering a preventive mastectomy and reconstruction operation. The chance of getting breast cancer in your 20s is low.
I'm not planning to "settle down" soon.
Also, because of my family history, I have to go to the hospital annually for check-ups from when I'm 26.