More than 6000 cancer cases ‘missing’ in Victoria

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A growing number of Victorians could be living with undiagnosed cancer, new analysis shows, as pandemic disruptions and worrying bowel cancer screening rates hamper earlier detection of the deadly disease.

Cancer cases were expected to rise in 2022 due to Victoria’s ageing and growing population. Instead, there was a 3.6 per cent decline.

Tahli Batkilin says she was sent away from the GP in late 2020 because she had COVID-19 symptoms.Credit: Jason South

The Victorian Cancer Registry has estimated that at least 6660 Victorians could now be living with undiagnosed cancer, at risk of death or poorer outcomes as the disease progresses without treatment.

It’s based on modelling of the number of cancer diagnoses that should have been expected in 2020 to 2022 and is a significant increase from a year ago when the registry forecast there were about 3800 missing cancers in the state.

“To see that the numbers in 2022 are actually worse than 2021, that’s not something I had expected,” Victorian Cancer Registry director Professor Sue Evans said.

The phenomenon has been linked to fewer Victorians undergoing cancer screening or assessments as disruptions to healthcare continued in 2022.

It is also possible that some of the missing detections were people who would have developed cancer but instead died of COVID-19. The disease was the third leading cause of death in 2022, claiming 9859 lives in the country’s deadliest pandemic year.

Meanwhile, some patients have reported delays getting a diagnosis for worrying symptoms over the past three years or have put off appointments because of the cost.

Melbourne mother-of-two Tahli Batkilin said she was sent away from the GP in late 2020 because she had some COVID-like symptoms, presenting with shortness of breath and a cough, preceded by itchy welts on her body.

Tahli Batkilin during her cancer treatment.

The symptoms were actually caused by non-Hodgkin lymphoma, a cancer that begins in the lymphatic system.

“I’d said to the receptionist before I arrived that I’d had a cough, but we hadn’t been anywhere,” said the 48-year-old who runs a cake business.

“The appointment was upstairs and when I got up the stairs, I coughed, and the GP said, ‘OK well you can’t be in here’ and ‘you need to go’.”

Batkilin said that when she asked if the GP would listen to her chest, she was again ordered to leave. She said the GP later prescribed Ventolin for suspected seasonal asthma.

Several weeks later, a different doctor ordered a CT scan that picked up a mass on her lungs. After eight rounds of unsuccessful chemotherapy, radiotherapy and then finally CAR T-cell therapy – which she described as “a miracle” – the cancer disappeared.

The estimated 2022 shortfall of cancer diagnoses includes about 472 cases of breast cancer that would otherwise be expected, 468 of lung cancer, 413 of melanoma and 614 of bowel cancer, also known as colorectal cancer.

Professor Alexander Heriot, a colorectal surgeon and the director of cancer surgery at the Peter MacCallum Cancer Centre, said he had noticed an increase in patients who had more advanced tumours.

Heriot said use of the free bowel cancer screening tests provided in Australia had always been lower than hoped, even though early detection of the cancer drastically improved patients’ chances of survival.

More than nine in 10 people whose bowel cancers are picked up in the early stage survive. The tests can also pick up growths before they turn cancerous.

Eligible Australians aged 50 to 74 are mailed a free home-testing kit every two years.

However, fewer than 44 per cent of Victorians aged 50 to 74 years who were sent a free National Bowel Cancer Screening Program kit in the mail returned their test in 2020 and 2021 – the lowest rate in four years.

“I think people don’t like dealing with poo, basically,” Heriot said.

Associate Professor Joel Rhee, the chair of cancer and palliative care at the Royal Australian College of General Practitioners, said COVID-19 had had wide-ranging impacts on health services and patient behaviour. Some people had delayed routine scans because they wanted to avoid being exposed to it, for example.

“Even right now, I think there’s a little bit of an upsurge in COVID cases,” he said.

Rhee said he believed most GPs were now happy to see people with respiratory symptoms in person, but a growing number of patients were putting off GP visits because of the cost.

In 2022, the most common diagnoses in Victoria were cancers of the prostate, breast, bowel and lung and melanoma. They accounted for 56 per cent of all cases in the state.

Aboriginal Victorians were twice as likely to be diagnosed with cancer than non-Aboriginal Victorians, while regional Victorians were 10 per cent more likely to be diagnosed than those living in major cities.

Overdue for a bowel cancer screening? Order a test here.

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