‘It’s just a freak-out waiting’
Cancer patients and their wha¯ nau are starting to speak up about the devastating impact of waiting too long for standard treatments including chemotherapy and radiation therapy. Cate Broughton reports.
TERMINAL breast cancer patient Kristy Christensen has a slight, but persistent cough as she describes her cancer experience. The cough, and a strange bubbly sound in her chest, were the first signs cancer in her breast had spread to her lungs.
This was confirmed in December when the Te Kuiti resident, engineer and mother of two was diagnosed with stage four and terminal cancer.
Christensen had spent the previous year in treatment for advanced stagethree breast cancer with months of chemotherapy, major surgery and radiation.
While thankful for her ‘‘amazing’’ medical team, Christensen believes her radiation treatment was delayed, and this ‘‘very likely’’ caused the spread of cancer to her lungs.
After surgery – a single mastectomy and breast reconstruction – on May 3, Christensen says she was told her radiation treatment would be in four to six weeks. Instead, she waited 12 weeks until July 26. ‘‘You can’t say for sure, but I mean any delay in it gives rogue cells the opportunity to go other places.’’
Christensen said she knew her type of cancer was ‘‘very elusive and hard to treat’’ and when first diagnosed was told she had a 50-50 chance of being alive in 10 years.
‘‘It’s just a freak-out waiting and being like, ‘OK, I know I need this, and it’s not happening and holy s..., this doesn’t feel like it’s a good thing’.’’
Christensen’s wait for radiation therapy happened at the same time Waikato District Health Board was hit by a ransomware cyberattack.
A Waikato DHB spokesman said Christensen ‘‘received treatment within clinically recommended time frames and consistent with [her] care plan’’.
‘‘Oral chemotherapy was scheduled following surgery as part of this care plan and there were no delays to care due to access to treatment.’’
The DHB later clarified Christensen’s treatment had met a Ministry of Health performance indicator for elective surgery first specialist assessments – to be provided within four months of a referral.
Cancer Society co-medical director Kate Gregory said the elective surgery performance indicator was irrelevant.
Radiation or chemotherapy treatments were not elective surgery, Gregory said. ‘‘That would be something like having your hip replaced or your hernia fixed. I think that’s not relevant, I don’t know why they are using that measure.’’
Since Sunday News first spoke to Christensen for this story in late January, her condition deteriorated significantly, and she has been admitted to hospice care.
Radiation oncologist and member of the economics and workforce committee of the Royal Australian and New Zealand College of Radiologists Melissa James said patients around the country were missing out on timely access to radiation treatments.
‘‘The wait list problem is a national concern. I mean, we all fluctuate, between dire to basically manageable, but there are such critical staff shortages, such critical machine shortages, that it is a national problem.’’
In Christchurch some patients were facing up to a 16-week wait for radiation therapy.
An email, seen by Sunday News, sent to senior medical officers on January 17 from the acting chief of oncology, advised Christchurch Hospital would be running a wait list for medical oncology services ‘‘for the foreseeable future’’.
James said Christensen could have had the same experience at other services, despite the Waikato cyberattack.
She couldn’t comment on Christensen’s specific situation, but said there were other patients in similar circumstances around the country waiting longer than was acceptable.
Under national guidelines breast cancer patients should have radiation treatment within four to six weeks of surgery, with evidence that those who started it eight weeks later had worse outcomes, James said.
The spread of cancer to Christensen’s lungs ‘‘may not have been because of the radiation delay because she had an aggressive cancer to start with’’, James said.
‘‘But the bottom line is she waited far too long for radiation therapy.’’
James said the impact of a long wait for treatment varied according to the type and stage of cancer, but long waits were definitely harming patients.
‘‘If patients are waiting too long for treatment there is a risk of psychological harm, cancer recurrence and potentially even death.’’
Cancer patients are experiencing delays to treatments including chemotherapy drugs, Cancer Society medical co-director and Hei A¯ huru
Mo¯ wai Cancer Leadership Aotearoa spokesman Dr George Laking said.
‘‘The workforce shortage means there’s not enough staff to see patients in time, so they get pushed out with waiting
times.’’
Laking, who is a medical oncologist with the Auckland District Health Board, can’t comment on his own service but is concerned the current Government has not prioritised national monitoring of waiting times for cancer treatment.
‘‘Until someone shows me a transparent, real time system set up to monitor and report how the system is performing . . . we’ve got to think the system is under-performing.’’
Geoff Nicholls, 76, of Feilding says he had radiation treatment in December following a shock diagnosis of terminal bowel cancer, but then hit a brick wall over access to chemotherapy.
Within a few weeks he had gone from working full-time at his construction equipment business to being told he was riddled with cancer and, without any treatments, had three months to live.
A specialist said treatments could keep him comfortable and give him some extra time with his family, Nicholls said.
‘‘He said we’re not going to cure you, but we’ll give you the radiation, and probably a mild form of chemo and that was going to happen, but then we just lost all contact.’’
Nicholls said he was discharged in late December with no word on when he would begin chemotherapy. With each day a bit closer to an early death, he became anxious to know when it would start.
After many phone calls made by his daughter, Nicholls saw an oncologist last week and was told he could start chemotherapy this week and the treatment could give him up to 12 months to live.
His daughter Ursula Nicholls said the family were really happy and relieved with the news after a very stressful time with limited contact. ‘‘It’s just obvious they’re swamped.’’
The lack of information about her father’s treatment had been extremely stressful, she said.
‘‘The key to it is, if you have the information there’s not so much anxiety, because when you don’t know, you think the worst.’’
MidCentral District Health Board clinical executive cancer treatment and support Dr Claire Hardie said the health board ‘‘understands the stress patients and their families go through prior to and after a cancer diagnosis’’.
‘‘The surgical and oncology teams at MidCentral have been communicating with Mr Nicholls to ensure he has timely and accurate information regarding his options and the treatment available for his cancer.’’
Ursula Nicholls said without her advocacy, her father would have waited until January 27 for a follow-up appointment.
Instead, he received a phone consult on January 17 and was referred for an appointment with a medical oncologist on February 2.
The average wait times for medical oncology at MidCentral as at January 28 was 21 days, with the maximum time 34 days (five days over the recommended time frame), Hardie said.
‘If patients are waiting too long for treatment there is a risk of psychological harm, cancer recurrence and potentially even death.’ RADIATION ONCOLOGIST MELISSA JAMES
Cancer patient advocates and oncologists say consistent, clear reporting on the performance of cancer care is urgently needed to ensure transparency – but are worried a new health system indicator framework announced last year does not specifically include cancer services.
‘‘I think it’s really unclear around what’s going to happen,’’ Cancer Society of New Zealand chief executive Lucy Elwood said.
‘‘We were concerned that there’s no longer, at that top table of measures, a target that is specifically looking at how cancer services are performing, given that cancer is the top cause of death in New Zealand.’’
The previous Labour Government did away with reporting of 10 health targets set up under former National Governments, but kept a faster cancer treatment target which measures one aspect of care.
The target is for 90 per cent of patients referred with a high suspicion of cancer to have their first treatment within 62 days.
Quarterly reports for the year to June 31, 2020, show just six DHBs met the target.
The number of DHBs not meeting the target was concerning, and another indicator that the system as a whole was struggling, Elwood said.
‘‘This target is only measuring a subset of cancer patients and a subset of the cancer pathway. We hear from senior medical officers about more widespread concerns about timeliness of access to treatment, but it is currently too difficult to get transparency about the scale of the problem.’’
Te Aho o Te Kahu, the Cancer Control Agency, says it is developing systems to collect and share cancer services performance data, but they won’t be finished until 2025.
The systems would enable the agency to ‘‘better identify issues with wait times and how best to resolve them’’, Te Aho o Te Kahu manager of data, monitoring and reporting Dr John Fountain said.
‘‘This is an ambitious programme, in many aspects world-leading, and will take time to build with an anticipated final delivery date of 2025.’’
A spokesman for Te Aho o Te Kahu said the faster cancer treatment target would continue to be monitored when the new health system comes into place.
Te Aho o Te Kahu chief executive Professor Diana Sarfati said the Government invested more than $145 million to provide 12 replacement radiation machines, across nine DHBs in Budget 2019 and 2020.
‘‘This included 3 linear accelerators to be placed at new outreach sites in Hawke’s Bay, Taranaki, and Northland.’’
Sarfati said the agency was working with the Ministry of Health to address workforce issues.
‘‘More detail on this body of work will be released in the near future.’’