The C-Word: Terminal after the scan that wasn’t
This week, in the C-Word – our series examining how New Zealand is responding to the burden of cancer – Rachel Thomas investigates how fragile the treatment pathway can be, and what moves are under way to catch cancers earlier.
Lianne’s life rested on a slip of paper, she just didn’t know it. The Auckland woman was 60 when she went to her long-time GP complaining of post-menopausal bleeding.
He physically examined her and everything looked fine, then her medical notes say she was given a “voucher” for an ultrasound. She argues it was never this official.
“It was a scrap of paper off his desk where he wrote the name of a radiology place,” says Lianne, who asked that her last name be withheld because of ongoing litigation about her care.
She had never had an irregular smear test, so never got the scan, and her GP never asked if she had done so.
Fourteen months later stomach pain identified the cause of the bleeding. Lianne had cancer in her uterus, discovered at stage 4B – terminal.
“It was horrifying and completely unexpected. I kept working full-time, but would get in the bath every night for hours as a way to deal with the stress.
“The critical failure in my care is that I felt I was being placated and that if investigation was necessary [the doctor] would have said something, but he said nothing.”
She says she was never told postmenopausal bleeding was not normal. There is a 10% chance this type of bleeding is due to cancer in the uterus.
“I only needed to be told this and I would have booked the scan immediately,” Lianne told the health and disability commissioner (HDC), when she complained about her care.
This single GP appointment was the moment Lianne fell through the treatment cracks.
She should have been referred for a pelvic ultrasound with high priority – which should lead to a scan within two to four weeks, clinical advice to the HDC said.
Deputy Commissioner Deborah James found the GP in breach of the code in place to protect patients, saying he failed to provide care of an appropriate standard.
James found the GP followed guidelines by referring her for further investigation, but should have followed up to make sure it happened.
In an interview with The Post, Lianne said had the GP acted appropriately at the time, the cancer would have been contained.
She had a hysterectomy and was planning to initially undergo more surgery, but the cancer had already spread to her lymph nodes and lungs.
Lianne’s last appointment at the hospital was in August. “They don’t want to see me. The doctor actually said to me, ‘I hope you don’t feel abandoned’.”
In a quest to extend her life, Lianne turned to a Texas-based oncologist, who has her on a list of “high dose, high quality” supplements, as well as medications which are normally used to treat the likes of type 2 diabetes, opioid disorder and epilepsy.
“I take 120 pills a day. We have to pay for them all.”
Lianne estimates she has spent between $200,000 and $300,000 on her care, “and it will carry on”.
If it were not for this care, she says she would be completely on her own.
She also takes Provera, a hormone therapy drug prescribed by her GP, which is commonly used to treat cancers that have spread.
Leading GP Dr Luke Bradford, who wrote an opinion for the HDC in relation to Lianne’s case, expects Provera is what is keeping her alive.
Bradford said the failures in Lianne’s care came down to “a communication issue, and a pathways issue”. The GP thought he was clear in urging the patient to go for a scan, but Lianne clearly did not take that message from the conversation.
“Often, we don’t want to say to patients, ‘I’m worried that this is cancer’, because they shut down, and actually, nine times out of 10 it is not cancer. But what should be said is, ‘it’s really important we check this out and find out what it is’.”
Best practice standards set through the Royal NZ College of GPs were clear that important investigations should be tracked to ensure they happened, Bradford said.
“And so there was some kind of breakdown there.”
Lianne wants people to know a cervical smear test doesn’t rule out everything. “Most women think if you go and have a smear test, then you’ve got it all covered … but of course a smear test doesn’t indicate ovarian cancer, it doesn’t indicate endometrial cancer.
“Any instance of even the minutest post-menopausal bleeding needs to be addressed immediately and if the GP doesn’t take it seriously then you must demand that it is.”
Surviving thanks to early detection
After his second surgery Brian Findlay got fit enough to complete the Lake Taupō Cycle Challenge once again.
Findlay, now in his 50s, had ridden the round-the-lake race before he was diagnosed with pancreatic cancer, but post-surgery he went in hoping to shave two hours off his previous time.
“Towards the end of the ride, there‘s a point where you turn and head up towards the finish line. And, literally, I was so emotional. It was just like, holy shit. It really hit me, this is actually a pretty cool achievement.
“It was like, anything else that I wanted to do may have been taken away.”
Findlay is an exception to the rule of pancreatic cancer patients, 87% of whom are dead within five years of being diagnosed.
The Hawke’s Bay-based banker’s cancer was discovered in August 2013, by chance. His partner is a nurse and when he developed fairly severe stomach pains, she urged him to get it checked out.
When he had a 12-hour surgery to remove a third of his pancreas, a secondary tumour was found in his liver.
“The good news is it was caught early ... I was fortunate that I had someone who knew about medicine, and insisted that I follow up on that.
“A little bit of background knowledge, and we were able to get an early diagnosis.”
He still has cancer, inoperable neuroendocrine tumours just outside his liver. They will grow, but slowly, so he tries to put it out of his mind.
“My oncologist has said he’s had more patients die with neuroendocrine tumours than from them. That gives you a bit of peace of mind.”
But he’s clear “without that early intervention, who know what would have happened, especially because the initial tumours had metastasised into the liver”.
Findlay felt some of the problems came down to busyness – of both patients and the whole health system.
“People have very busy lives and things which could be sinister just aren’t investigated. GPs who are overwhelmed ... they’re looking for quick solutions rather than investigating.
“It’s a system that’s overwhelmed.” Pancreatic cancer is known as a “quiet” cancer, the head of te Aho o Te Kahu-Cancer Control Agency, Dr Rami Rahal, says. That’s why more than 71% of cases are found only because the patient has gone to an emergency department.
By then, it’s often too late. Of the patients who are told they have pancreatic cancer in ED, 83% are dead within a year.
“Then there are the loud cancers like lung cancer, bladder cancer and colon and rectal cancer, that do come with symptoms that can be identified earlier.”
When EDs become cancer clinics
Despite this collective knowledge, more than half (56.5%) of all lung cancers are only detected because of an emergency department visit, a rate dramatically worse for Pasifika (72.6%) and Māori (67.5%).
The figures, provided in a new report from the Cancer Control Agency, also detail that about half of all liver, stomach and ovarian cancers are picked up in EDs and more than a third of oesophageal and colon cancers.
Barring liver cancer, New Zealand’s numbers are the highest next to comparable countries like Denmark, the UK, Canada and Australia.
The Post asked Health Minister Dr Shane Reti for an interview on the Cancer Control Agency’s report but was told he didn’t have time.
He provided a statement saying he had met the agency to discuss this report and how the Government’s work could make a difference.
“We are towards the bottom of the countries we like to compare with and that’s unacceptable.
“We can do better, and we will. The key message from this report is that the earlier the diagnosis, the better.”
Rahal and oncologists spoken to for this series are clear that the speed of diagnosis, surgery and treatment are the largest barriers to improving survival rates.
National screening programmes, which exist for breast, bowel and cervical cancer, provide an early indication that people may be at risk, Reti says.
He cites the recent expansion of PETCT scanning in the South Island, which is particularly aimed at increasing early diagnosis and management of prostate cancer.
“Screening is an important tool to detect cancers at an early stage. We’ve already started on our promise to extend free breast screening to women aged 70-74.”
This was part of the Government’s 100-day plan, but standing in the way is a workforce crisis, which Reti has described as “our biggest deficit toward the ambitions we have”.
Lung cancer screening years away
In Auckland, a trial to introduce lung cancer screening through low-dose CT scans aims to find lung cancers early enough to intervene.
So far the trial has completed 504 CT and found 13 lung cancers, Health NZTe Whatu Ora confirms.
“We’re hoping to be able to start moving to implementing that in New Zealand in the next two years, it does take a while to stand up a programme like that as resource implications,” Rahal says.
Again, workforce and infrastructure constraints are the main barriers to rolling it out sooner, he says.
The pilot is led by Otago University Professor Sue Crengle through funding from the Health Research Council (HRC), the Cancer Control Agency and the Ministry of Health.
A risk-prediction study is the next phase, scanning 1200 people across the Northern region, including rural and remote areas, then a business case is expected later this year.
Health NZ’s health equity director, Dr Karen Bartholomew, says screening will target those most at risk of lung cancer, which includes current and ex-smokers. The business case will refine, including age eligibility.
Rahal says major clinical trials typically focus on people with “30pack years”: those who have smoked a pack of cigarettes every day for at least 30 years, but this could change.
But before the workforce and infrastructure barriers can be worked out, the Government will need to write the cheque, believed to be in the tens of millions.
“If it is agreed that lung cancer screening will be the next national screening programme, new funding will be needed,’’ Bartholomew says.
“All of these steps will have to be completed before a timeline can be finalised. We are working hard to progress these steps as quickly as possible.”
Meanwhile, the Prostate Cancer Foundation met Reti this week, asking him to commit $6.5m to pilot a prostate cancer screening pilot programme.
The foundation says Reti responded that he would consider the request but made no promises, so it would continue campaigning for a pilot.
Asked for this series about screening for prostate cancer, Reti said “show me a country in the world that’s got a national screening programme” – a comment the foundation labelled “deflating”.
Reti says the concept of a national screening programme “still suffers from: what are you going to screen with, as other countries have found”.
In the same interview, he said: “We know that if you get cancers early, we get a better outcome.
“If you have any concerning symptoms, it’s best you talk to your GP. The earlier cancer is detected, the better it will be for you and your whānau.”
Lianne got an apology from her GP for what happened during and after that fateful appointment, and the practice was told it should create an automatic reminder to follow up vouchers referrals.
But because the GP retired in 2022, Lianne took little comfort from the HDC’s decision.
Close to four years since her terminal diagnosis, she still works two days a week, gardens and walks the dog – with a philosophy to get outside and move as much as she can.
“They say it will kill me and there’s nothing to be done about it, but I’m not complying with that. I’m doing everything possible to keep living my life as well as I can.”
“Often, we don’t want to say to patients, ‘I’m worried that this is cancer’, because they shut down and, actually, nine times out of 10 it is not cancer. But what should be said is, ‘it’s really important we check this out’.” Dr Luke Bradford, GP