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Scanxiety - the hidden trauma facing Australians living with blood cancer

Leukaemia Foundation - World Blood Cancer Day

• Nearly one in two Australians living with blood cancer experience ‘scanxiety’ – the constant fear their next test, scan or biopsy could reveal their cancer has returned.
• Blood cancer patients often face lifelong monitoring and confronting relapse rates – with cancers like myeloma relapsing in up to 80% of patients.
• Australian actress Jacinta Stapleton and her mother Jackie Williams reveal the crushing emotional toll of blood cancer, as the Leukaemia Foundation calls for greater mental health support.

It’s a hidden psychological burden impacting nearly one in two Australians living with blood cancer, where survival alone does not bring peace of mind.^{1 2 3}

They live caught up in a relentless cycle of fear, waiting and uncertainty – counting down to the next blood test, scan or bone marrow biopsy that could determine whether their cancer has returned.

It’s far more intense than ‘worry’ and can grip those impacted creating ongoing psychological trauma long after active treatment has finished.

This mental health issue has a name…scanxiety.

Today, on World Blood Cancer Day, the Leukaemia Foundation is shining a spotlight on scanxiety and the intense emotional toll experienced by Australians living with blood cancer, and their loved ones.

According to Leukaemia Foundation CEO, Chris Tanti, the ongoing monitoring associated with blood cancer and the fear of relapse can be an all-consuming part of everyday life.

“There are over 170,000⁴ 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 eighty per cent. 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.”

With blood cancer on track to be the number one cancer diagnosed in Australia in the next decade, more Australians are set to be affected by scanxiety and the mental health implications of the disease.

Unlike many other cancers where treatment eventually ends, blood cancers often require lifelong surveillance with patients undergoing repeated blood tests, scans, highly sensitive relapse testing and invasive bone marrow biopsies for years, and in many cases, indefinitely.

As a direct result, for many Australians, life becomes defined not by recovery, but by waiting to see if they need to restart treatment to overcome one of the deadliest cancers in the country.

“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^{5 6} – a grim reality and stark reminder of the severity of the disease.”

For Australian actress Jacinta Stapleton of Neighbours fame and her beloved mother Jackie Williams who was diagnosed with acute myeloid leukaemia in October 2023 – the psychological distress they’ve experienced has 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.”

Jackie added: “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.”

Jackie’s diagnosis led to her first encounter with depression and anxiety – with bouts of scanxiety and dread leading up to scans and test results, and loss of control during waiting periods.

Her experience is not uncommon with the Leukaemia Foundation believing the psychological impact of blood cancer deserves far greater awareness and support from all Australians so that people like Jackie do not have to face the disease alone.

“This World Blood Cancer Day, we want the community to understand that surviving blood cancer is not simply about getting through treatment. For many, it means living every day with the ongoing fear that the cancer could come back,” said Mr Tanti.

“We support thousands of people every year with integrated emotional and psychosocial support, alongside their medical treatment, but we need help to keep up with rising demand.”

Of those Australians who seek support from the Leukaemia Foundation, half require emotional support, with nearly 9 in 10 saying it significantly improved their emotional wellbeing and helped them cope with the intense stress of blood cancer.

The Leukaemia Foundation is urging Australians to donate to support those impacted by scanxiety and the psychological and mental impact of blood cancer via this year’s tax appeal.

To donate to the Leukaemia Foundation’s tax appeal, or learn more about blood cancer, visit leukaemia.org.au

– ENDS –

INTERVIEW / STORY OPPORTUNITIES: 

Leukaemia Foundation Spokesperson: our confident speaker will provide strong insight into the points raised in the media release and the impact of scanxiety on Australians living with blood cancer and their loved ones. 

Person with lived experience: interview a local personally affected by scanxiety to give a first hand account of the impact its had on them. We will endeavour to find someone suitable in your local area. 

For all interview and story enquiries, please contact the Leukaemia Foundation media team on 0473 154 079 or email [email protected]. 

References:

1. National Library of Medicine
2. National Library of Medicine
3. National Library of Medicine
4. AIHW, Cancer data in Australia, 2026
5. National Library of Medicine
6. Blood Cancer Journal

About us:

About the Leukaemia Foundation: The Leukaemia Foundation stands with Australia to help cure and conquer blood cancer – with care. Together we are attacking every blood cancer, from every direction, in every way we can. We stand beside every Australian to be their voice and their someone-to-turn to, fighting to get them access to the best care. We also accelerate research that is delivering rapid advancements in blood cancer diagnosis and treatments. Plus, we provide services and support that empower people living with any blood cancer to live well after diagnosis. You can learn more about the Leukaemia Foundation and blood cancer at leukaemia.org.au

Contact details:

Contact the Leukaemia Foundation Media Team on 0473 154 079 or [email protected]