Real Life

Family cancer curse: From heartbreak to hope

A medical discovery means this teen can dream again

She was born Te Haupuia Bennett, but to her family, she’s known as Hope. It’s a nickname with special significance as the beautiful young teenager signals an amazing change of fortune for her entire whanau.
For the last six generations, Hope’s extended family has been hit by stomach cancer, a fast-moving and elusive disease. Over a 30-year period, 25 lives in her whanau were lost, with stomach cancer wiping out entire families and killing people as young as 14.
“My nana Janice died at 30 and my uncle Anthony at 20. Since I was a little girl, stomach cancer was all around me,” reveals 19-year-old Hope. “I grew up knowing one day I might get it.”
But about the time Hope was born into the McLeod whanau in the Bay of Plenty, a medical breakthrough was made, creating headlines around the world. In a global first, University of Otago geneticist Professor Parry Guilford discovered a CDH1 gene mutation ran in the family, which could be traced back to the time Hope’s Scottish forebears married into the Nga Potiki hapu.
For those who inherited the gene, up to 70% would go on to develop cancer. But the gene’s discovery means that Hope and her generation’s lives could now be spared.
“Knowledge is power for our whanau,” tells Hope. “Now we can test ourselves for the gene and do something about it. It’s a positive thing.”
Like all the teenagers in her family, Hope was tested as a 16-year-old. When it was discovered she’d inherited the gene, she had a gastroscopy procedure to check inside her stomach, as well as biopsies.
“As soon as the doctor sat me down and closed the door, I knew it was bad news,” she recalls. By age 18, Hope had the earliest stage of cancer. “It was a real shock,” she adds. “I was at university, I was travelling and I wanted to do all the things my young and healthy friends were doing.”
For her mum Nikki, 39, it was her worst nightmare. She was just seven when she lost her own mother Janice to the disease. And her brother Anthony was diagnosed with stomach cancer as a teenager.
“It broke my heart to know I’d passed something like that on to Hope,” Nikki reveals.
The Bay of Plenty beauty can now plan her future, which will include a university degree.
Life-saving op
In November last year, Hope underwent a six-hour operation, known as a total gastrectomat, at Tauranga Hospital. Her stomach was completely removed and her oesophagus connected to her large intestine via a 50cm length of small intestine.
It was major surgery known only too well by the whanau. At least 40 of Hope’s relatives have had the same operation, including her mum 10 years ago.
Nikki says, “It was traumatic, but I was grateful. Cancer took my mum and brother. They didn’t have the opportunity to be saved like I did.”
As a young and fit teenager, Hope recovered quickly from her surgery, but she took longer to adjust to how her new stomach worked. After surgery, most people can’t tolerate fatty and sugary foods, and can only eat little and often.
“But I didn’t want to be different from my friends, so I would go to McDonald’s with them and I really suffered,” she admits. “My whole physique changed – I got skinny very quickly,” says Hope, revealing she lost a whopping 12kg in the fortnight after her operation.
But the long scar that runs vertically down her abdomen is a small price to pay for her future health.
“My surgery was a life-saver,” tells Hope, who plans to return to university next year to study a degree in English."
“Now I don’t have to spend the rest of my life worrying about cancer and when it will get me. I am focused on my health and fitness, and I have my whole future to look forward to.”
For children like Hope’s little brother, five-year-old Kaitiaki O’Neill, the future looks even brighter. Professor Guilford and his team at Otago University are now working on a drug that can be used to prevent the cancer developing in mutation carriers.
“I see the potential in Kaitiaki and it’s scary to think that a generation or two ago, it could all have been taken away,” says Hope. “I feel good about the future now because we’ve been given the knowledge to save the lives of our whanau.”
Hope, with brother Kaitiaki and mum Nikki, is grateful for the Kiwi breakthrough that has allowed her family to protect themselves against this deadly disease.

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