Rachel Thomas Kristie Boland
Cancer is New Zealand’s biggest killer, but it doesn’t have to be. The C-word is a series examining how New Zealand is responding to our burden of cancer.
and report.
Dorothy Maiden picks up a folded stack of paper and watches it unfurl to the carpet – fraying cellotape joins handwritten pages like a scroll, almost as tall as her. This was her hospital appointment list in the early 2000s.
Dorothy, 80, and her husband, Les, 83, have had cancer six times between them. Even their Siamese cat, Sabai, had breast cancer. She wasn’t so lucky.
“I think we’ve got used to it in a way,” Dorothy says. “It’s sort of been coming and going all the time.”
It was at a party in 1964 that a 20-year-old Dorothy first met Les, an 1.85m, olive-skinned Brit who wore leather jackets. “Mr Cool,” says Les.
August next year will mark the Wellington couple’s diamond wedding anniversary. “Yeah, well, if we make it,” Dorothy says.
First came Dorothy’s melanoma on her back in 2000. “I was very lucky, because it was high grade with necrosis.” Necrosis means the body’s tissue is dying.
“I was just getting over that and I got the breast cancer 18 months later.”
It was discovered purely by chance, thanks to her dear friend, Carol, who spotted a portable breast cancer screening unit in town. “She said, ‘let’s go and get it done and make sure’. I said, ‘No, I wouldn’t have breast cancer’.”
“They rang me about half past seven in the morning and it was a real shock.
“Carol said, ‘You owe me one, girl’.” Carol later died from pancreatic cancer.
Three operations later, including one that Dorothy says gave her “a lovely flat stomach”, it was Les’ turn.
In 2012, Les noticed a lump on his leg while he was in the shower. It was liposarcoma, cancer of the fatty tissue.
Just under the hem of his shorts is a coaster-sized indent in his inner right leg; on the other side, a light strip bears the scar of a skin graft, evidence of complications. “It was just by luck I found it early ... I might not have found that for a year,” Les says.
Then in 2016: prostate cancer, discovered through the blood test that measures PSA or prostate specific antigen.
Dorothy had two other types of skin cancers along the way: Bowen’s disease and Basal cell carcinoma, which have seen dozens of small cancers removed from her chest and arms.
The couple’s cancer has never occurred at the same time. “It’s very convenient,” Les says.
“We just look after each other, really,” Dorothy says. “And we’re still here.”
The same cannot be said for the 10,100 New Zealanders in 2020 who died of cancer, accounting for 31% of all deaths.
Cancer the biggest killer
In 2018, the number of lives lost to cancer was 9818. More than 2000 of these, or 21%, could have been avoided through public health and prevention measures and effective and timely healthcare.
This is according to a first-of-its-kind population report from Health New Zealand-te Whatu Ora, released last month.
It also outlines the major discrepancies in five-year survival rates among the big five cancers – prostate, breast, melanoma, lung and bowel. This marker stretches from a cool 90% for melanoma, to 61% for bowel, way down to 12% for lung cancer.
The report’s co-author, Dr Gary Jackson, Te Whatu Ora’s director of population health, says there are efforts under way to shift the dial.
In Auckland, a trial to introduce lung cancer screening through low-dose CT scans aims is to find lung cancers early enough to intervene.
“It looks like it can work. It looks like it would be reasonably cost effective … it's looking good enough that we'll be putting together a Budget bid,” Jackson says.
Other changes to screening include the move to extend the upper age limit for free breast cancer screening from 69 to 74.
This week, Health Minister Dr Shane Reti also announced new national criteria for PET scans, which help detect cancer, that will mean about 1000 extra scans a year will be publicly funded from this month.
Reti labelled it “a great step forward” in ensuring New Zealanders have the same access to diagnostic technology.
The changes are estimated to cost about $3 million a year.
Jackson says there are also the “standard run of public health messages’’ like a balanced diet, avoiding smoking and alcohol, and eating fibre, all of which can ”really affect cancer rates”.
“Smoking accounts for 80% to 90% of lung cancer,” Jackson says.
Changes are happening
Māori health leaders are now warning cancer outcomes will get worse with both the scrapping of Te Aka Whai Ora, the Māori Health Authority, and the repeal of smokefree legislation.
“It’s terrible for cancer and it’s terrible for equity. It’s terrible for New Zealand,” says Dr Nina Scott, co-chairperson of Hei Āhuru Mōwai-the National Māori Cancer Leadership Group.
“The smokefree legislation was one of the best things we have ever had for cancer in this country,” Scott (Ngāpuhi, Ngāti Whātua and Waikato) says.
Jackson’s report states about 75% of health loss from lung cancer can be avoided “mainly from reducing smoking”.
Cancer Society chief executive Dr Rachael Hart says: “Within the first 100 days of this Government, an estimated 585 New Zealanders will have died from tobacco-related cancer.”
In the North Island, lung
cancer is
Rami Rahal, of Te Aho o te Kahu, the Cancer Control Agency among the top two contributors to the life expectancy gap for Māori.
Figures from Jackson’s report state just 9% of Māori lung cancer patients are alive after five years, compared with 13% for non-māori, non-pacific patients.
As Waikato GP and primary care researcher Dr Rawiri Keenan (Te Āti Awa) puts it: “The Te Aka Whai Ora downfall takes that spotlight off the Māori gap that’s there.”
Reti argues that the repeal heralds a “new vision for Māori health”.
“This Government believes that decisions should be made closer to the community, to the home and the hapū. Local circumstances require local solutions rather than national bureaucracies.”
Cancer rates are rising
The number of cancer diagnoses in New Zealand is expected to double over the next two decades.
“By far the biggest risk factor for cancer is age, actually,” says Rami Rahal, head of Te Aho o te Kahu, the Cancer
Control Agency.
“The better we get at extending life, the higher the chance of cancer showing up at some point.”
While New Zealand’s cancer survival rates are improving, our rate of improvement is slower than comparable countries.
Asked why, Rahal explains New Zealand was late introducing bowel cancer screening and early-detection programmes. “The two biggest factors to improving survival are, No 1, screening and early detection.”
Early detection requires people to be able to access their GP and be referred in a prompt way, Rahal says. “When that’s not working well, you end up in a higher percentage of patients being diagnosed in ED and a higher percentage of patients being diagnosed at a later stage, which means lower survival.”
Keenan says extending survival has an under-explored effect on the system. “Cancer is becoming a chronic condition like diabetes. People survive one, two cancers but they still have ongoing health needs in terms of monitoring to
JUAN ZARAMA PERINI/THE POST make sure they stay cancer free … and that’s often back in community care.
“But politically, it’s often easier to do something about wait-lists than it is about GP access.”
High cancer diagnoses in ED
New Zealand has (by far) the highest rates of cancer diagnoses as a result of an ED admission compared with the United Kingdom, Canada, Australia, Norway and Denmark, accounting for 42.5% of diagnoses, including more than half of all lung cancers.
This is according to research, published in The Lancet in 2022.
The Cancer Control Agency is due to publish research that drills down into the disproportionate number of Māori diagnosed with cancer this way.
Scott says a key point here is fixing the inequities in access to screening.
“For breast cancer, once you’ve been diagnosed through the screening programme, there’s equitable survival. For women diagnosed with cancer outside of screening, Maōri women have a 30% lower chance of surviving the cancer than non-māori women, regardless of stage of cancer. And that’s all because of delayed access to treatment.
“We have nailed cancer inequities, once we get women into screening programmes, but we need to get more women into screening.”
Asked about this in December, Reti said he was acutely aware that early detection of any serious disease played a critical role in successful treatment and backed improved access to primary care.
The Government was also aiming to speed up access to cancer treatment, with a goal to have 85% of patients receiving cancer management within 31 days of the decision to treat.
Major postcode lottery
A nationalised health system was created with the intention to end the postcode lottery of healthcare but so far that is not the case, particularly for Southland and Otago.
Cancer patients in these areas are still waiting too long for treatment, 10 months after a highly critical report by the health and disability commissioner found wait times at Southern District Health Board (now Te Whatu Ora Southern) were so bad that some cancer patients were likely to die before seeing a specialist.
In a follow-up report released last week, doctors said the situation in some departments had worsened.
Geographical isolation is the main barrier to care, Christchurch surgeon Professor Frank Frizelle says, and once you are behind and short-staffed it’s hard to come back.
People are not just waiting too long to be treated, they’re waiting too long to be diagnosed, he says. “When there are several thousand people waiting to be seen and they’re out months, that’s all delays in diagnosis before they know they have cancer.”
Last year, The Cancer Society in Christchurch was having trouble
finding accommodation for patients who had to travel, with some paying up to $7000 in accommodation and travel as doctor shortages forced them to other regions.
“When you’ve got a small number of people distributed over a large area, it makes delivery more costly and more difficult for patients,” Frizelle says.
Southland and Dunedin patients are being sent around the country for cancer surgery, a lot of them to Christchurch.
Christchurch Hospital already took the more complicated cases, but that threshold had to be slightly adjusted so it could take more, Frizelle says.
But Christchurch has been facing its own problems. Last year, surgeons were ordered to cut cancer surgery lists, being forced to decide which patients have "the worst cancer and won’t survive’’.
Frizelle says the situation has since improved but it is “swings and roundabouts”.
He wants the Government to look seriously at comprehensive cancer centres. He believes they are the answer to improving the quality of care for the whole country. “All they are doing is describing the problem, not coming up with any solutions.”
There’s a medicine gap
When cancers are detected late, some New Zealanders have no options left.
As Reti puts it: “New Zealanders have increasingly had their access to effective cancer drugs reduced over time compared to our friends across the ditch.”
Rahal accepts there are medicines available in Australia but not here, “and therefore not available to people in New Zealand who can’t afford to pay for them privately”.
At the recommendation of the Cancer Control Agency, 13 of these drugs made their way on to a National Party election promise to fund more medications for solid tumours. Reti is still receiving advice on how to implement this plan.
One of them is a bowel cancer drug which, if approved, would be the first funded bowel cancer drug in 20 years.
Importantly, Rahal says: “The majority of the medicines that are on the list right now are not curative ... They provide additional months of life.
“At a national level, you’re not contributing significantly to outcome improvements, but for the individual patient and their whānau, there’s nothing more important.”
Both Dorothy and Les Maiden know they owe their survival to being in the right place at the right time.
Not all of their friends and family have been so lucky. Dorothy’s grandmother died from pelvic cancer, her younger brother from brain cancer. And of course, Carol, whom she misses desperately.
For Dorothy, four times down, does she worry about it coming back?
“It’s a good question. Do I worry? I don’t think so. It’s just sort of there as part of your life ... It’s one of life’s experiences that changes you. You never feel the same again.”
The C-word will run throughout March. If you have a story or expertise you would like to share, contact rachel. thomas@stuff.co.nz