A cancer diagnosis is one of the most distressing things a person can deal with in their lifetime, but researchers say that even after treatment, many are burdened by the fear of their cancer returning.
With Australia’s ageing population and estimates of over one million people currently living with or beyond a cancer diagnosis, there is a growing number of us facing this fear.
While completing treatment and receiving the ‘all clear’ from their doctor is a major milestone, many often don’t feel happy or relieved after treatment.
“People fear that cancer will return,” explains Associate Professor Ben Smith, Cancer Institute NSW Career Development Fellow and Senior Implementation Scientist at the University of Sydney’s Daffodil Centre.
“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.”
Although our approach to how we deal with this in coming years is about to change. The University of Sydney and Cancer Council NSW have teamed up to create a clinical pathway for health professionals to identify and support those experiencing fear of cancer recurrence.
“Getting help with fears, worries or concerns about cancer coming back or getting worse is the most reported unmet need among people affected by cancer. When unaddressed, fear of cancer recurrence can cause people to focus on simply surviving rather than thriving,” says Professor Smith.
“People affected by cancer can be reluctant to raise their concerns about recurrence with the healthcare team, as they don’t want to seem ungrateful. Conversely, health professionals can be reluctant to ask about it, as they don’t want to cause their patients to worry, and they may be unsure about what to do if a patient says they have a fear of cancer recurrence.”
Victoria Turner has experienced this firsthand. She was diagnosed with stage 3C ovarian cancer at age 59 after seeking help for over eight months for her increasingly debilitating symptoms.
“I have late-stage ovarian cancer with a 70-90 per cent chance of recurrence, but this was not discussed with me, and no psychological support was offered,” she explains.
Living on the far North Coast of NSW, her only option was to travel to see an oncology psychologist at her own expense.
“I did access a private oncology psychologist to help me deal with my fear of recurrence initially, but it was expensive, and I had to travel to face-to-face sessions. After being unable to return to work for 14 months, the financial cost of travel and consultation fees added another dimension to my stress.”
If left unaddressed, Professor Smith says these fears can last for many years and possibly 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.”
The team consulted almost 100 health professionals, researchers and people with lived experience to create a world-first clinical pathway made up of three key steps.
The process begins with screening, where people 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 provides tailored support by normalising concerns around recurrence and offering key information on risks and symptoms.
“I would like to see all patients receive a personalised cancer survivorship plan that outlines the possible health professional they could access, the support services available in their local area, and reliable websites that are easily accessible to all,” says Victoria, who now works as a volunteer presenter and facilitator with the Australian and New Zealand Gynaecology Oncologist Group (ANZGOG) Survivors Teaching Students program.
“Ideally, psychological support should be free to all cancer patients, irrespective of their location.”
The pathway is still undergoing testing and will be rolled out in New South Wales initially.
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