Table 3.

Primary bone cancer (PBC) impact on emotional well-being at different points in the treatment pathway

Time point	Impact on emotional well-being
At diagnosis	Fear, shock, panic and feeling overwhelmed resulting in an inability to take in information It helped if they were given the opportunity to ask questions later or had someone with them at hospital appointments
During treatment	The physical impact was difficult to cope with and had an impact on emotional well-being: “I can remember asking at the clinic ‘Does this get worse for each cycle because I’m already not coping?’”
Chemotherapy	Chemotherapy was emotionally burdensome due to the physical impact it had on them
Amputation	The devastating news of having to have an amputation and the lack of other options available were distressing “I couldn’t really-, based on the journals that I was reading, and based on the information that was available at the time, amputation just seemed like such a life-altering decision”
End of treatment	The transition to being off treatment was challenging: the focus and structure of care while they were going through treatment disappeared: “It’s difficult, sort of, coming to terms with everything (…) trying to get used to being on the other side of it and not having to deal with any of the chemo or anything” Reflection during this transition period resulted in some patients not knowing how to cope with their thoughts and feelings such as the uncertainty associated with PBC: “I think it was post-traumatic (…) every little thing that went wrong, I thought it had come back (…) so then I was constantly going to the doctors all the time (…) I wasn’t sleeping very well”
Follow-up	Fear of recurrence The regular appointments and scans (part of follow-up care) were a source of anxiety, a constant reminder of the uncertainty and potential for recurrence The period before appointments was extremely stressful: “my anxiety levels peak, you know, just before my three monthly check-up, and then once I’ve had my check-up, I, kind of, come right back down (…) next three month, the cycle starts again (…) I would certainly say the first twelve months were awful” Time from diagnosis influenced patient’s emotional experiences Descriptions of feeling devastated, of losing their future, their identity were mainly present in the first two years from being diagnosed Negative emotions Guilt at having survived Feeling upset due to the impact of the illness on their family