Can language impact the fear of cancer recurrence?
We are planning some research on exploring patients’ fear of their cancer coming back (cancer recurrence). We understand that sometimes patients struggle after treatment with words or phrases that have been used by health care professionals which continue to impact them months or years later. The aim is to look into whether there were certain terms or language used by any health care staff that may have impacted your feelings in terms of cancer recurrence, positively or negatively. Health care professionals may include Doctors, Nurses, Dieticians, Radiographers, Speech and Language therapists, Physiotherapists and Support Care staff.
How can you get involved?
- Please share your experience in the ideas board below. If you would prefer to share your experience privately you can email Lorraine directly at Lorraine.O'[email protected]. Your responses will guide interviews about fear of recurrence of cancer in a later part of this study.
- If you would be happy to be more involved in this work please click on the 'stay informed' button on the right.
We would also like this work to be used to guide clinicians' conversations with patients and families in the future.
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It is important that simple,straightforward but caring language is used by trained staff. Post treatment as we are still quite vulnerable.
4 months ago
These phrases aren’t particularly pleasant “Potentially sinister” “Must be cancer but can’t prove it yet” “Statically it must be cancer”
3 months ago
Body language - 'how' it is said
I would encourage you to also pay attention to how medical views are delivered. Body language can be reassuring or undermine even positive messages. Again, I appreciate staff are time poor and stressed, but I wonder how much of their training focuses on inter-personal relating. When there is little eye contact and little interest shown in how a message or decision impacts the patient there and then (never mind whether the information is clear and understood) one feels even more disempowered, frightened and potentially hopeless. A collaborative approach, little phrases like "I am aware this must be frustrating for you", introducing themselves by name etc should not take much, helps create an overall better atmosphere and gets rid of this increasing conveyor-belt approach.
3 months ago
Terminology for scan results
I had an ultrasound and the CNS was saying that my lymph nodes looked highly suspicious, and I kept pressing to try to understand what she meant exactly. It was only when I spoke to a breast nurse that she explained there is a rating system for this, 1-5 with 4 being suspicious and 5 being definitely cancer, 3 was indeterminate so could be either way and 2 would be something benign like a cyst and 1 would be nothing. If they could have told me this at first I would have had some context and understood immediately rather than me feeling like I had to grill the CNS.
3 months ago
I have found that there has been a distinct lack of impatience amongst some consultants using language that was harsh and aggressive.
