Table 2.

Responses to the free text questions illustrating knowledge gaps

Is there anything you wished you had known about metastatic breast cancer before your diagnosis

‘When diagnosed with primary there was no suggestion that it could return in this way and be incurable. This I would like to have known at primary breast cancer stage’ ‘I wish after my primary it had been discussed & I wish I was told what to look out for & who to contact if I was worried about symptoms’ ‘Just that it existed! I had never heard of it—ALL the focus in the media is on early breast cancer’

Are there things you still do not understand about metastatic breast cancer?

‘How it will progress. The difference between palliative radiotherapy and curative radiotherapy in terms of dosage and expected outcome’ ‘I don’t know how I got it, blood, lymph nodes? I don’t know what order it spread. I do not know which area is the biggest problem. I don’t know if it is hereditary’ ‘Why am I de novo—why haven’t I got a primary?’ ‘How to cope with the emotional effect of my diagnosis and treatment, in particular living with high levels of uncertainty as to what the future might hold’ ‘How targeted therapy works?’ ‘What lifestyle changes really make a difference?’