Isaia Piho has no stomach, but pretty much anything’s on the menu for the 40-year-old Dunedin dad.
Just not too much or too quick or the simple act of sustenance most of us take for granted can end badly for the firefighter turned Fire and Emergency iwi liaison.
Steak? Pinch a bite from someone else’s plate. Two-minute noodles? Yes, as long as his nutrition-mindful wife isn’t looking. Booze? Okay, but expect any buzz to be short-lived. A pie and bottle of banana-flavoured milk before going on a boat with mates? From unfortunate experience, definitely not.
What he consumes can either end up feeling like it’s stuck in his throat, or move through his body at breakneck speed , if he doesn’t manage his eating carefully.
“I’ve managed to get to a space where I can pretty much eat whatever I like and I’ve managed to put on weight. There are definitely a lot of people that haven’t had that same luxury.
“[But] it’s always a challenge.”
Piho is talking about his experience for Stomach Cancer Awareness Month, as Gut Cancer Foundation Scientific Advisory Committee chairwoman Dr Sharon Patterson calls on Kiwis not to be whakamā (shy) in getting help.
“You know your body and your ‘normal’ better than anyone, and if you feel something isn’t right, find a GP you trust and persist until you get to the bottom of your symptoms and what’s going on.
“There remain considerable inequities in stomach cancer occurrence and outcomes for Māori and Pasifika peoples, and medical researchers and practitioners are working hard to address these.”
Piho was a 28-year-old firefighter when told in 2011 he had the genetic mutation CDH1, which increases the risk of stomach cancer by 70 per cent. It had already killed his mum eight years earlier, at the age of 43.
The average age to develop the cancer is 37.
Kiwi pop singer Stan Walker has the same faulty gene and had his stomach removed after discovering in 2017 he was in the early stages of a cancer that’s claimed the lives of 25 of his relatives.
“I just have to thank God every day that I’m alive,” Walker said in his 2018 documentary Stan.
For Piho, the genetic link in his family emerged after his sister was diagnosed with stage 2 stomach cancer in 2011.
“My mum was [first] told she had stomach ulcers, the next time she went back it was advanced stomach cancer. So when my sister was told she had ulcers, she wasn’t gonna buy that.”
The family had lost touch with their wider maternal family and didn’t realise extended family members had the CDH1, said Piho, who is Ngāti Porou and Te Whānau-a-Apanui.
Three of the four Piho siblings have the faulty gene - and all are still alive, after having their stomachs removed.
Piho initially opted for six-monthly monitoring, but by his second round of testing he was showing early signs of cancer and was told his stomach needed to be removed.
“Even though you know something’s gonna happen, when it happens it does take your breath away. I didn’t know if I’d still be able to be a firefighter. Would I actually be a good firefighter?”
But six months after the operation Piho was back at work, having built up his fitness and a “different kind” of strength.
“I couldn’t rely on being a big brute. I had to use a lot more technique.”
He’s since moved from a frontline firefighting role, not because of his health, but to be Fire and Emergency’s pou whakahaere (national iwi liaison) and work in fire prevention.
The biggest challenge is getting enough nutrition through frequent small meals or snacks. Failing to manage this can leave him feel lightheaded or like he has food in his throat, Piho said.
Because he doesn’t have a stomach, his intestines have to break down the food and absorb nutrients at the same time.
But it was also important to be a role model for his two kids, who will be tested for the gene aged 16.
“I’m really mindful [of them]. If I don’t show them you can live a normal - well, new normal - life then it’s only going to make things harder for them if they do end up having the gene … [and] it’s a 50/50 chance.”
Son Tānara, 6, and daughter Tia, 10, know Dad doesn’t have a stomach and they could have the same faulty gene.
“My daughter has asked me, ‘Do I have to have my stomach out too?’ I just had to say ‘Yes, that is something that could happen … but if you do have to, know we’re here’.”
Piho and wife Kelly Sutherland considered IVF, which would have excluded embryos that tested positive for the gene, before deciding against it.
“We didn’t want to play God. It was a real hard choice because, is it reckless bringing a child into the world to live through the same things I’ve had to?”
They had faith in the ongoing work to defeat the mutation by University of Otago cancer researcher Professor Parry Guilford and his team, who discovered the CDH1 gene in 1997 and continue work towards a future where those with the gene may be able to keep their stomachs, he said.
“And we also put a lot of trust in our sense that you can have a normal life, just your normal might be a little different to others’.”
Stomach cancer: What you need to know
More than 400 people in New Zealand are diagnosed with stomach cancer each year, and about 280 die from the disease annually.
Rates of stomach cancer are falling globally, but overall survival rates remain among the poorest for all cancers - at 29 per cent for survival more than five years after diagnosis.
Diffuse-type stomach cancer and intestinal-type stomach cancer account for 95 per cent of all stomach cancers and Māori are among the few populations for which the usually more aggressive diffuse-type is more common, partly due to inherited CDH1 genetic variants discovered in some whānau. Due to this gene mutation and environmental factors, they’re more likely to be exposed to, Māori and Pacific peoples are three times more likely to develop stomach cancer than those of European ethnicity.
See your GP if you have symptoms such as a painful or burning sensation in the abdomen, heartburn or indigestion, a sense of fullness - even after a small meal - nausea and/or vomiting, loss of appetite and/or weight loss, swelling of the abdomen, unexplained tiredness or weakness, low iron levels, red blood count/anaemia, blood in vomit, black-coloured stool (poo).
For more information: https://www.gutcancer.org.nz/stomach-cancer/