The fear of recurrence is something that most people who have been treated for cancer experience, but it is often the ‘elephant in the room’ when patients meet with their doctors. Doctors don’t want to upset their patients by bringing it up and patients don’t want to look ungrateful for the treatment they’ve had (or they don’t have time to bring it up when they have other questions to get through at an appointment).
Associate Professor Ben Smith of the University of Sydney’s Daffodil Centre spoke about evidence-based management of fear of recurrence to doctors, researchers and patient advocates at Breast Cancer Trials’ recent conference in Hobart.
About 60% of people who have had cancer treatment experience frequent, insistent and intrusive thoughts of recurrence.
This message was re-inforced by another presentation. Jenny Gilchrist from Sydney’s Macquarie University spoke about Project Shirley, which looked at fear of recurrence and risk communication in Australian HR+ HER2- early breast cancer patients. This study found that 96% of participants reported that living with breast cancer had a negative effect on their mental health, with 50% stating that uncertainty about their breast cancer had a significant or very significant impact. Two-thirds were dissatisfied with the level of emotional support from the healthcare system and wanted more mental health support and better information on their risks of recurrence.
Fortunately, doctors now have a Fear of Cancer Recurrence Guideline, with evidence-based strategies and interventions for screening, assessing and managing this, so that they can help their patients and their families deal with this.
Associate Professor Smith explained that screening for fear of recurrence should occur shortly after completion of treatment and he suggested a five-step process for doctors to follow:
- Normalisation: This means bringing up the subject in a way that reminds the patient how common this fear is. For example, they could say “I always ask my patients this” or “Some people find that…” This reassures people that fear of recurrence is normal and that they may experience peaks and troughs in their fear over time.
- Personalised prognostic information: Research has shown that providing patients with information about their risk of recurrence may help to reduce their fear. Despite what many think, there is little evidence to suggest that bringing up the subject generates fear. Doctors should check with the patient first to see if they want this information.
- Strategies for managing worry: This could involve educational materials or supported self-management techniques such as online self-help programmes, exercise programmes, relaxation training, meditation or support groups. Giving the patient a printed information sheet is recommended. You can also read more here.
- Red flag recurrence symptoms: Providing patients with healthy self-checking advice, on what to look out for, signs of recurrence and appropriate channels for seeking help. Once again, a take-home information sheet is recommended.
- Offer psycho-oncologist referral. (For more information, see BCAC’s list of counsellors here, or view this webinar.)
Dr Smith noted that it is important to screen soon after a person’s cancer treatment and then to re-screen them at a later time. He also cautioned that the guidelines have been developed for people with early cancer. More research was needed to meet the needs of those with metastatic disease and adjustments would also be needed for people of various ethnicities.
During question time at Dr Smith’s presentation, it was pointed out that breast surgeons provide more than half of the follow-up care for early breast cancer patients in particular and that this was an important message for them. Another question was about the role of the media in triggering cancer fears. There is little research on this topic but it is generally accepted now that ‘cancer battle’ language is not helpful. He also noted that some charities use the public’s fear of cancer as click-bait for their fundraising activities.
You can read more about Associate Professor Smith’s research here.
8 August 2025
