The 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.

Supporting people with fear of cancer recurrence is a critical yet frequently overlooked aspect of cancer care. An estimated 60 percent of people affected experience moderate to severe anxiety that cancer could return or worsen. “I felt hesitant to raise such issues when I should have been feeling lucky to have survived. It seemed to me that the fear of recurrence would have been considered frivolous,” said cancer patient Jill Yates.

Associate Professor Ben Smith, Cancer Institute NSW Career Development Fellow and Senior Implementation Scientist at the Daffodil Centre, University of Sydney, remarked 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 Associate Professor 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 shared: “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 percent 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 world-first clinical 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 patients concerns.
• 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.

Cancer patient Victoria Turner shared her experience, saying, “I have late-stage ovarian cancer with a 70-90 percent chance of recurrence, but this was not discussed with me, and no psychological support was offered. I am a regional patient, so I had to access an oncology psychologist at my own expense, which also required significant travel. I would have appreciated an open discussion about the possibility of my cancer recurring and information about strategies to deal with the fear and anxiety.”

“With Australia’s ageing 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,” said Associate Professor Smith.