Faces of bowel cancer: Survival worst for Māori and Pacific people

Don't be afraid to talk about poos and bums – it just might save your life, bowel cancer survivors say.

For 3000 Kiwis each year the topic is literally about life and death. But the future would have been brighter for many had they shrugged off the embarrassment sooner.

Bowel cancer is New Zealand's second biggest cancer killer, second only to lung cancer, and claims 1200 lives every year.

In three out of four cases it is curable if it is caught early but too often it is not detected until it's too late.

For Māori and Pacific people the statistics are worse.

A recent study found the cancer had spread beyond the bowel by the time it was first detected in 35 per cent of Māori and 31 per cent of Pacific people compared with 23 per cent for everyone else.

Don't sit on your symptoms

The annual bowel cancer awareness month may be drawing to a close but the messages focused on this year are not going to become less relevant any time soon.

This year's campaign aimed to remind people the disease, also known as colorectal or colon cancer, could strike at any age.

"We hope the Never Too Young campaign will drive home to people just how vital it is for everyone, of any age, to know the symptoms of bowel cancer," Bowel Cancer New Zealand general manager Rebekah Heal said.

While it was more common in people over 50, more than 300 of the 3000 New Zealanders diagnosed with the disease every year were under 50.

"Bowel Cancer New Zealand has been encouraging people to not sit on their symptoms for years, but with the rising incidence of bowel cancer in young people, it's now more important than ever that people don't die of embarrassment, and go to their GPs immediately if they have concerns," Heal said.

What impact does ethnicity have?

A new study published in the New Zealand Medical Journal this month found Māori and Pacific people were more likely to die from bowel cancer than non-Māori largely because their cancers were detected later.

The latest findings from the PIPER Project, which looked at 4950 bowel cancer patients, found the cancer had metastasised by the time it was first detected in 35 per cent of Māori and 31 per cent of Pacific people compared with 23 per cent for everyone else.

The researchers also found the incidence of death was 59 per cent for Pacific patients, 47 per cent for Māori patients and 38 per cent for all other ethnicities.

"Our results suggest that much of the poorer survival outcome for Māori patients results from delays in diagnosis," the authors wrote.

While that also appeared to play a large part in the higher death rate in Pacific patients, differences in management after diagnosis also appeared to affect their survival.

University of Auckland professor of oncology Michael Findlay, one of the authors, said any reason for the delay in detection amongst Māori and Pacific patients would be purely speculative but could include delays being referred on from GPs, the perception that doctors and hospitals were scary places, a lack of education around bowel cancer, financial difficulties or difficulty in accessing medical services.

More research needed to be done on the factors behind the delay in diagnosis to help get rid of the imbalance, he said.

Bowel Cancer NZ spokeswoman Mary Bradley agreed more research was needed and said the organisation was very concerned at the inequities.

"We understand access to primary care could be an issue if people live rurally and there could be financial reasons as well," she said. "Not knowing or recognising the symptoms may also be a factor."

Anaru Gray

39-year-old Anaru Gray was diagnosed with stage 4 bowel cancer in 2017. Photo / Supplied

Father of four Anaru Grey, 39, is one of those who put off going to the doctor.

Gray said he had irritable bowel-type symptoms for years and blood in his stool for three months.

When he finally went to the GP in September last year he was quickly referred to the hospital and diagnosed with stage four bowel cancer which had spread to his liver.

Doctors told him the tumours were too big to operate on and there was only a 5 per cent chance chemotherapy would work.

But he has been lucky. The chemotherapy did work and shrank the tumours to a size where surgeons were able to remove most of them.

But it's not all gone yet and he has more surgery and chemotherapy on the horizon.

"At the beginning they gave me a year to live. Now it's looking like before a year I'll have gotten rid of it all," he said.

Now he's part of Bowel Cancer NZ's campaign in an effort to make sure others don't "muck around".

"Don't do what I did. I wiped it and flushed it down the toilet."

The te reo Māori teacher was not surprised to hear Māori were more likely to be diagnosed at a later stage and eventually die from bowel cancer.

"It is a big thing for a Māori male to go to the doc about something so personal," he said.

Anna Kooperberg

Anna Kooperberg was diagnosed with stage 2 bowel cancer in 2014. Photo / Greg Bowker

For two years Anna Kooperberg was in pain.

She had bloating, blood in her stool, abdomen pain and low iron but her GP kept assuring her it was irritable bowel syndrome.

Eventually she took herself to a gastroenterologist who told her she was not the right size, age or weight for bowel cancer but did the tests anyway.

The results showed an 8cm tumour in her bowel. The 32-year-old had stage two bowel cancer.

Surgery and chemotherapy got rid of the cancer and she has been clear for four years but she knows just how lucky she is and remains passionate about spreading the word.

"It's pretty cool to still be here to tell the tale. The message from me is that if you feel like something is not right in your body, it's probably not. Keep asking questions," Kooperberg said.

She's living proof that if bowel cancer was caught early enough, it was curable.

But we need to talk about it more, she said.

"People don't want to talk about poos and bums," she said. "But talking about it could save your life."

Di Hohaia

In October 2015 Rotorua woman Di Hohaia, 60, noticed a slight change in how often she was going to the toilet but thought nothing of it.

In April she started to get some pain in her lower abdomen but it would come and go. By June it was clear something was not right.

Her GP sent her straight to a specialist who found a small mandarin-sized tumour and diagnosed her with stage three bowel cancer.

"My life just blew up in front of me. All I could see was death. Right at the start there were so many tears. Then I thought, 'stuff this. I'm not going to let this beat me'."

She had the tumour and 27 lymph nodes removed before six months of chemotherapy. A year on surgeons noticed anther node they were concerned about but had to remove her gallbladder to get to it.

Hohaia said bowel cancer was not talked about a lot within Māori families.

"It's whakamā - shyness. You're shy because you've got something wrong with your bum. A lot of people think, 'I'm not going to the doctor for that'," she said. "It's private. It's tapu."

She believed more education was needed to convey how serious the disease was and get Māori talking about it.