Bowel cancer: Dying mum too young to be picked up in screening

Catherine Edwards, 51, is dying of bowel cancer. She will leave behind her beloved daughter Brijana. Photo / Alex Burton

A 51-year-old west Auckland woman dying of bowel cancer could have had a fighting chance of survival if Māori were screened for the disease from the age of 50.

Instead, Catherine Edwards has been given just months to live.

She won't be alive to see her daughter get married or be there to watch her two grandkids grow up.

"When I think about all the family milestones I'm going to miss out on, it really upsets me. I feel too young to be thinking I won't be here next year," Edwards said.

She is believed to be one of hundreds of New Zealanders whose bowel cancer could have been picked up earlier had the screening age been dropped for Māori and Pasifika, who are considered at a higher risk of developing the disease earlier than non-Māori.

The Ministry of Health says the proposal to lower the screening age for Māori and Pasifika "hadn't been ruled out" but said the priority was on rolling out the programme nationally for 60 to 74-year-olds, which was not expected to be complete until December next year.

Meanwhile, for Edwards, and many like her, it was too late.

The young grandma had visited her GP at least six times over a nine-month period with symptoms of extreme fatigue and trouble going to the toilet.

"Some days I couldn't even make my bed. I'd put one sheet on and then have to lie down before I could do the next. I actually put it down to menopause."

Despite a history of bowel cancer on both sides of her family, the deadly disease was never considered by her or her GP.

It wasn't until she was rushed to hospital in December last year with chronic constipation that the 7cm cancerous tumour in her colon was discovered.

"By that stage I looked about nine months pregnant, everything was really swollen."

The cancer had spread to her liver and lymph nodes. She was terminal and doctors gave her just months to live.

"It all happened so fast, like I suspected at that point it must be serious, I probably have cancer but I just thought it would be treatable.

Edwards won't live to see her daughter Brijana marry or her grandchildren Caius, 4, and Ava, 2, start school. Photo / Alex Burton

"I remember I'd sent my sister and daughter home because it was getting to be late at night, I said to them I probably have cancer but we will deal with it and everything will be okay," Edwards said.

Since then, she has undergone 10 months of chemotherapy which helped to stop the spread and extend her life.

She had major side effects from government-funded drug Folfox, so she had to pay $30,000 for a year's supply of another drug, Cetuximab. Only $10,000 was covered by her health insurance, the rest was crowd funded.

She said if she was screened for bowel cancer when she turned 50 she might not have been terminal.

"It could have been picked up a year earlier, which is hard to swallow."

She said all she could do was accept her diagnosis because she didn't have the energy to cope with any other emotion.

"I just want to make the most of the time I have left with my family."

Maxine Ronald, a Northland-based general surgeon and chairwoman of the Royal Australasian College of Surgeons (RACS)'s Indigenous Health Committee, said it was unacceptable the Government had not taken action to lower the screening age for Māori and Pasifika.

"It is deliberate institutional racism. If you aren't actively anti-racism then you will continue to see the same outcomes."

She said the added pressure on colonoscopy services was not a valid reason to delay making a decision.

"The numbers of extra colonoscopies required to lower the screening age for Māori and Pacific, are around 1000 extra per year- or one extra per week per District Health Board."

Ronald said equity needed to be at the front of all decisions addressing cancer care in New Zealand and it was super concerning that it was being sidelined.

"There's a lot of talk but when it really comes to the crunch the Government has shown us they are not prepared to step up. It's easy to say things but you've got to have action to see change."

Bowel Cancer NZ medical adviser, public health clinician and Invercargill GP Dr Sue Crengle agreed.

"It's accepted that bowel cancer develops earlier in Māori than non-Māori," she said.

"It's not known exactly why more Māori bowel cancer occurs in this younger age group, but it's just a fact. The Government acknowledges the figures proving this, yet frustratingly, still refuses to act. As a result, the screening programme which continues to roll out nationwide is inequitable and actually discriminatory towards Māori."

In a prepared statement, the Ministry of Health and the Cancer Control Agency (Te Aho o Te Kahu), said: "It was our considered view, backed up by international advisers, that the safest and most sustainable course of action is to complete the national roll out of the programme (expected by November 2021) before reviewing the age parameters or potentially introducing an age differential."

"Expert advice was that by initially starting bowel screening at 60, New Zealand would be able to introduce a bowel screening programme sooner rather than later, targeting those most at risk, whilst not overwhelming colonoscopy capacity or carrying out invasive procedures where cancer was unlikely to be found."

Health Minister Chris Hipkins said the new Government remained committed to improving equity of health outcomes for Māori and Pacific Island New Zealanders.

"This is a major strand of our new cancer control plan and will continue to be a priority for the new Minister of Health when they are appointed.

"Any key decisions including extending the age range the bowel screening programme will be based on expert advice provided by the Ministry of Health and Cancer Control Agency."

Bowel cancer is the second-deadliest cancer in New Zealand after lung cancer, killing close to 1200 people each year.