Table 2.

Primary bone cancer impact on physical well-being at different points in the treatment pathway

Time point	Impact on physical well-being
At diagnosis	Onset of pain as the trigger to seek help for many patients
During treatment
Radiotherapy	Fatigue and burning sensations as negative side-effects of treatment
Chemotherapy	The majority of patients gave vivid descriptions of how debilitating their treatment was and some experienced frequent hospitalisations between chemotherapy cycles Debilitating physical effects and frequent hospitalisations
Side-effects	Mouth ulcers, nausea, fatigue, (chest) infections, constipation, incontinence, diarrhoea, sepsis, tinnitus, hearing loss, anaemia, “pins and needles in the ends of my fingers and the loss of some feeling in the ends of my fingers”, kidney and heart problems, and foot drop
After treatment
Surgery	Pain Impact on mobility: lessened strength, instability, loss of flexibility and poor balance For a few patients, falls were a concern and limited their activities as consequences could be severe: “A little poodle, yapping like anything, I suddenly put all my weight, to jump out the way, onto my left leg and I felt it break. It just literally split apart”
Amputation and limb sparing surgery	Pain and restricted daily activities (irrespective of type of surgery). Pain management was particularly difficult in the first year after end of treatment
Amputation	Unfamiliar sensations of ‘phantom pain’ were particularly disconcerting “There doesn’t seem to be a lot of options in dealing with that, especially because, for me, I don’t have phantom pains every day, but I’ll get it randomly (…) it can be quite disconcerting and painful”
Long term effects	Even many years after end of treatment, some patients were still struggling with the impact of treatment “The memory thing, that’s probably the one that affects me the most (…) it’s probably got a little bit worse (…) Whereas before cancer, everyone used to remark about how good my memory was” (young adult, 5 years after treatment). The longevity and unpredictability of some of these symptoms was troubling for patients