It is a moment laden with fear: feeling an unexpected lump in your body, finding blood in the toilet bowl, your doctor asking for further tests following a check-up.
All three scenarios might, or might not, be a warning sign of cancer.
With that uncertainty weighing heavily on the mind, it could be weeks or months before a diagnosis can be made.
If that telltale sign is indeed cancer, the wait to start treatment can be even longer.
As the sad case of Winton farmer Blair Vining — who was given eight weeks to live due to bowel cancer and shortly after was told that he had an eight-week wait for "urgent" treatment — shows all too graphically, waiting lists can cause harm to those stranded in them.
"I think that is an all-too-common story," Cancer Society medical director Chris Jackson said.
"That’s not for a second because any of the doctors or nurses aren’t working hard enough ... it is a two-tier health system and the gap in ability to get the best care is getting larger."
In the SDHB region, not all cancers are created equal.
Some, like breast cancer and bowel cancer, are detected at a high rate because there are national screening programmes and clinicians examining scans looking for trouble signs.
While early detection of issues is good, and greatly enhances the chances of successful treatment, it also creates a high volume of patients to handle for scarce, in some cases overstretched detection and treatment services.
An added complication is some cancers are more complex to properly diagnose: breast cancer takes very few investigations but other cancers need scans and a biopsy before clinicians can decide on how best to tackle them.
"Small delays at each step of a complex pathway blow out to make longer overall wait times for these cancers with more complex diagnostic pathways," Dr Jackson said.
"These multiple small delays impact negatively overall, particularly for fast-growing cancers."
If you have a brain, lung or skin cancer, a decision to treat you is likely to be made more quickly; skin, head and neck, and blood cancers have the shortest referral-to-treatment times.
Head and neck have the longest wait time to decide to treat, followed by upper gastrointestinal cancers. Lower gastrointestinal cancers and urological cancers have the longest referral-to-treatment lag times.
Several factors influence timing including the length of the queue to see a specialist, access to operating theatres (these vary with each specialty) and complex pathways to evaluate the best treatment, which may require multiple tests or involve many specialists.
"Overall, waiting times are well in excess of what is ideal," Dr Jackson said.
Quite how long those waiting lists are is difficult to answer.
The SDHB is required by the Ministry of Health to track two statistics: the 31-day indicator, the recommended length of time for patients with a confirmed cancer diagnosis to receive their first cancer treatment or other management from the decision to treat, and the 62-day indicator, within which patients referred urgently with a high suspicion of cancer receive their first treatment or other management following a specialist referral being received by the hospital.
The 62-day target captures only 15% of New Zealand patients diagnosed with cancer.
In the latest Ministry of Health statistics, of New Zealand’s 20 DHBs, Southern ranked 18th, with only 65% of patients treated within 62 days.
There are three main ways to enter the cancer treatment system — a screening programme, going to a medical professional with symptoms, or an emergency room visit.
Screening programme and emergency patients do not figure in the cancer treatment targets data.
"It would be better if we had a more meaningful metric, for example time until diagnosis, or time from diagnosis till treatment, which might capture more people," Dr Jackson said.
"I think that the emergency room presentation rate of people later diagnosed with cancer often reflects failure of early intervention ... it can be a canary in the coalmine warning of a primary care system which isn’t working or meeting the needs of its population."
After a symptom is found, almost always a test or series of tests will be needed, ranging from blood or faeces tests to a scan or a biopsy.
"Most of those people who have symptoms, fortunately, do not have cancer ... which is great, but it doesn’t mean people shouldn’t get tested.
"You might investigate 100 people who have worrying symptoms to detect five or seven who have cancer, which is a big task in terms of workload to get through."
Should a patient need a scan, they will likely have to wait; there are only so many machines, so many staff, and so much scanner time available. The SDHB has added late and weekend sessions to try to keep up.
The widespread nature of the Southern population is another factor in cancer detection and treatment.
A patient in, say, Winton, will not find it as simple to make it to an appointment as someone in Dunedin, especially if — as happens often — that appointment is cancelled or rescheduled at short notice.
"There is a real tension nationally between provision of specialist services and people being able to access treatment close to home," Dr Jackson said.
"There is a trade-off between centralisation and population distribution and clinician efficiency."
A further challenge is 25% of cancers being diagnosed in people over 80.
Those patients often have other complex health conditions, adding to the difficulties in arranging and maintaining a treatment programme.
International projections suggest that the volume of cancer diagnosis will increase by 50% in the next 15 years, and a business-as-usual approach cannot meet that future demand.
"It’s what led to our campaign for a national cancer plan and a national cancer agency, to try and get sufficient attention paid to this, and to ensure world-class cancer treatment and outcomes.
"Matching the right patient to the right treatment in the right place at the right time is challenging," Dr Jackson said.
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Comments
Thanks for speaking up and explaining. There are complexities throughout the system that do need elaborating on and about, successful negative screening is part of diagnosing those with positive tests but is a significant workload given little recognition in the figures. It is staggering the future requirements virtually knocking on the workloads now. And it is so something that the total health system needs to be talking about and planning now for, as a nation and as regions.