Cancer recurrence anxiety: clinical pathway for health professionals

Supporting people with fear of cancer recurrence is a critical yet frequently overlooked aspect of cancer care. An estimated 60% of people affected experience moderate to severe anxiety that cancer could return or worsen.

Now a multidisciplinary team, led by researchers from the Daffodil Centre, a joint venture between the University of Sydney and Cancer Council NSW, developed the clinical pathway for health professionals to identify and support those experiencing fear of cancer recurrence, which is often a key factor in the wellbeing of people living with and beyond cancer.

The team has developed a three-step plan to support those burdened by the intense fear of cancer returning. This plan offers a consistent, streamlined approach to managing recurrence anxiety, empowering patients to regain confidence and move forward with their lives.

Associate Professor Ben Smith, Cancer Institute NSW Career Development Fellow and Senior Implementation Scientist at the Daffodil Centre, University of Sydney, said that finishing treatment and getting the “all clear” is a major milestone for people with cancer. While many people think that they ‘should’ feel happy or relieved after treatment, they often don’t.

“People fear that cancer will return,” said Smith, who led the development of the new plan. “This could be an occasional fleeting thought, through to more serious fear and anxiety that happens every day. Every ache, pain or wait for scan results, can trigger concerns about cancer coming back, known as ‘fear of cancer recurrence’. If not addressed, these worries can lead to isolation, anxiety and difficulty planning for the future.”

Ocular Melanoma patient Michelle Taylor said, “I liken my fear of recurrence with waiting for a guillotine to fall. Unless something scientifically changes, I will never be ‘in remission’ because ocular melanoma can reoccur at any time, and 50% of patients will metastasize. My genetic test results revealed that I have a high risk of metastasis, so may the odds be forever in my favour. More than eight years later, and so far, so good.”

To address this fear, the team worked with almost 100 health professionals and researchers to create a pathway comprising three key steps.

The process begins with screening, where individuals are asked about their worries related to cancer recurrence. The next step is assessment, which involves: gauging the severity of the patient’s concerns and exploring treatment options; the final step is a stepped-care approach that provides staged and tailored support — starting with normalising concerns around recurrence and offering key information on recurrence risks and symptoms, then offering support online or from others affected by cancer, or treatment from a mental health specialist to those who need it.

“With Australia’s aging population and estimates of over one million people currently living with or beyond a cancer diagnosis, there is a growing group of people facing fear of recurrence. If left unaddressed, we know these fears can endure for many years and can lead to other mental health issues, such as anxiety and depression. If we don’t address this issue now, it will continue to grow, potentially overwhelming a system that is already struggling to meet the demand for specialist mental health care. By implementing this plan, we will be able to respond to fears early and address them efficiently before reaching crisis point,” Smith said.

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