The news has prompted calls for greater psychosocial support.
New data released by the Leukaemia Foundation has laid bare the significant mental health impact of lifelong monitoring and fear of relapse among Australians living with blood cancer, prompting calls for greater psychosocial support alongside clinical care.
Nearly one in two Australians living with blood cancer experience so-called “scanxiety”, a persistent fear that routine blood tests, scans or biopsies may reveal disease recurrence, experts say.
The foundation has called for greater recognition of the psychological burden associated with blood cancer survivorship.
It drew on the emotional impact of ongoing surveillance and high relapse rates, particularly among patients with conditions such as multiple myeloma and acute myeloid leukaemia (AML), where recurrence remained a significant clinical concern.
The foundation chief executive officer Chris Tanti said the uncertainty associated with lifelong monitoring could have a profound effect on patients and their families long after treatment has concluded.
“There are over 170,000 Australians living with blood cancer in this country. Close to half of those experience scanxiety, with rates often higher depending on their diagnosis and treatment,” said Mr Tanti.
“They live from blood test to blood test, never fully knowing if the next phone call, scan or appointment could change everything.
“For many, the fear of relapse is rife and never truly leaves.
“Patients diagnosed with a blood cancer like myeloma face relapse rates as high as 80%. And at least one in two Australians diagnosed with acute myeloid leukaemia will relapse.
“It’s no wonder that the emotional burden of blood cancer can continue for years – sometimes for life – heavily affecting the person diagnosed and their family.”
Unlike many solid tumours, blood cancers frequently require ongoing surveillance, including repeated blood tests, imaging, molecular monitoring, and invasive bone marrow biopsies. This extended period of clinical observation can contribute to heightened anxiety and psychological distress, particularly given the risk of relapse that remains even after remission is achieved.
“Every test for those affected by blood cancer can feel like a survival checkpoint – triggering overwhelming anxiety, fear and uncertainty for them and their families,” said Mr Tanti.
“And whilst survival rates have improved significantly in Australia, many blood cancer patients will relapse within the first 12 to 18 months following treatment [up to 80% in multiple myeloma] – a grim reality and stark reminder of the severity of the disease.”
Australian actress Jacinta Stapleton and her mother Jackie Williams shared their experience of living with the emotional consequences of AML following Ms Williams’ diagnosis in October 2023.
Ms Williams, who is currently in remission, described the period following treatment as particularly challenging.
“Being told I was in remission earlier this year is a strange feeling – a kind of stagnant stage where you’re managing this awful, terrible thing and you’ll be lucky if you stay there and don’t relapse.
“I’m a pretty strong person and have been through many ups and downs, but living with blood cancer would have to be the worst.”
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She said her diagnosis led to her first experience of anxiety and depression, with periods of heightened distress before scans and test results and a persistent sense of uncertainty while awaiting outcomes.
Ms Stapleton said the psychological distress had been crushing.
“Seeing mum go through blood cancer and all that she has endured has been the most difficult thing – it’s just not fair,” said Ms Stapleton.
“The disease has taken over our lives and been all-consuming. We’ve had to learn to be patient and put mum’s life in the hands of doctors, tests and treatments in the hope of her surviving.
“It’s certainly forced us to see what is important in life.”
Mr Tanti said about half of people seeking support through the foundation’s services required emotional or psychosocial assistance, with most reporting improvements in emotional wellbeing after accessing support programs.
He said this highlighted the need for healthcare professionals and the broader community to recognise that survivorship extends beyond physical recovery.
“Surviving blood cancer is not simply about getting through treatment,” he said.
“For many, it means living every day with the ongoing fear that the cancer could come back.”
