Kiwi musician Stan Walker discovers he shares rare cancer gene with his ill mother
Award-winning recording artist Stan Walker and his mother both have a rare cancer-causing gene mutation that is responsible for the death of at least 25 of their family members.
The aggressive CDH1 hereditary mutation is found in more than 400 known families worldwide and it's estimated 25 families in New Zealand have it.
It is further estimated that 70 per cent of people with the CDH1 mutation will be diagnosed with stomach cancer by age 40 while women have an additional 35 to 40 per cent chance of getting lobular breast cancer.
In May 2016, April Walker, 52, who lives in Melbourne, Australia, discovered a lump in her right breast.
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"I went on a Tuesday to see the doctor and she said it was cancerous and I freaked out. I just went numb like anybody else would."
She was diagnosed with lobular breast cancer in September, which led to the cancellation of Stan Walker's New Zealand tour, of which she was the promoter.
At the time, Stan shared a photo of Walker and him on Instagram and added: "It is with sadness I need to postpone my tour. I need to be with my mum whilst she goes through & recovers from breast cancer. All we need as a family is your love and prayers."
Walker said her son struggled to cope with the diagnosis.
"He just couldn't handle it. It was really devastating, actually, for all of us."
Walker chose to forego breast removal surgery, but had the 2.5 centimetre mass of cancerous cells removed.
She is at high-risk of developing cancer again, but chooses natural alternatives for treatment – no chemotherapy or radiation.
"The title of my book would be, 'I should be dead by now', starting right from domestic violence to finding out about my gene, the food I ate and the breast cancer," she said.
"I feel like I've got a second chance."
Walker insisted that three of her sons get tested.
"I got my three eldest boys, Mike, Russ and Stan, to get tested and Stan was the only one to have the gene mutation," said Walker.
Anybody who has a strong family history of breast or certain other cancers can be referred to a local genetic service where the risk of developing these cancers can be calculated.
Prophylactic surgery can then be performed to remove as much of the at-risk tissue as possible, which reduces the risk of developing cancer by around 90 per cent.
Hollywood actor Angelina Jolie had a preventative double mastectomy in 2013 when she found out she was a carrier of the BRCA1 gene mutation.
Walker was in her 20s when she found out she had the gene mutation, but she never thought it would develop into cancer.
"It's not that I didn't care, I just didn't really think it would happen to me - that I would get cancer."
The aggressive CDH1 gene mutation runs though Walker's family - the McLeod whanau - from Tamapahore Marae in Tauranga. The subject was used in a 2009 episode of US TV show Grey's Anatomy.
Surgical removal of the stomach is the recommended treatment for people who have the CDH1 mutation, with a better than 90 per cent chance of never developing cancer again.
April Walker's father, Rangi McLeod, and cousins were part of the first trial when the CDH1 mutation was discovered by University of Otago geneticists in 1997.
More than 25 members of the wider McLeod family – including Rangi – died over a 30-year period as a result of the mutation.
"That's the nature of the gene. You get the cancer from the gene and you die."
Walker was in Hamilton recently and spoke to a Waikato Breast Cancer Trust function, telling her story and promoting the 'button' campaign.
"Mothers keep it together. They button you up, they fix you up. But they can't fix this.
"If they detect it early enough, they can help you get rid of it and teach you to look after yourself better."
Stress is a huge factor and in particular, Walker wants Maori and Pacific Island women to get screened.
"A lot of Maori and Pacific Island women are conservative and they don't want to show their boobs - but that's your life. You either show your boob or you die."
University of Otago Professor Parry Guilford discovered the CDH1 mutation in 1997 and is now developing drugs to prevent cancer from forming.
It would give CDH1 mutation carriers more options. Currently, carriers can live with the mutation, have the entire stomach removed or have a yearly endoscopic surveillance, which can be hit and miss.
"It's a long difficult job, but we are well on the way," Guilford said.
Pre-emptive stomach removal surgery can be delayed, but too long a delay is a gamble, Guilford said.
Some woman with the gene mutation are opting to have their breasts removed to avoid the cancer risk, but it doesn't pose the same level of risk as stomach cancer.
"There doesn't seem to be quite the same urgency to have prophylactic surgery for the breast cancer risk, but some people have chosen that option."
CDH1 MUTATION IN NUMBERS
* An estimated 4 out of 5 people who have the CDH1 gene mutation will develop stomach cancer.
* Any family member of an individual with the CDH1 mutation has a 50 per cent chance of also having the mutation.
* The average age for breast cancer diagnosis in women with CDH1 gene mutation is 53.
* Angelina Jolie underwent a preventative double mastectomy because she had an 87 per cent chance of developing breast cancer due to having the BRCA1 gene.
* An earlier version of this story incorrectly stated the CDH1 gene causes hereditary cancer. It is, in fact, a mutated version of the CDH1 gene which is the cause of hereditary stomach cancer the Walkers suffer from.
- Sunday Star Times