Table 4 Confusion about role and relevance of breast care nurse to those with metastatic breast cancer

Differing expectations / confusion as to support breast care nurses could provide

‘‘The breast care nurse sat in [when I first saw the surgeon] and gave some information. But then further tests were done which showed that it had metastasised. So, there’s no breast care nurse. Anyway, look, I’m not sure now what a breast care nurse would do for me because I’ve taken a lot of it into my own hands. But I would hate to imagine what it’s like for a lot of women who are not that way inclined or don’t know the system.’ Rose (diagnosed 1 year ago aged 69; interview 2)

‘I’ve never been offered [a nurse] or anything else that you could probably be offered. I don’t know what else you could be offered, but I’ve never been offered anything to complement or relate to what I’ve got, other than the actual oncologist and wha t he does.’ Vicki (diagnosed 11 years ago aged 48; interview 2)

‘Look, I hear people talking about breast care nurses, and that may well be a place to go, but I’ve never known or been directed to a breast care nurse, or even really understand what their role is.’ Sharon (diagnosed 1 year ago aged 64; interview 2)

‘I haven’t even seen [a nurse] … I haven’t had the need to, I suppose.’ Melanie (diagnosed 1 year ago aged 48; interview 3)

‘There’s a link missing between when you’re diagnosed and what services are available to you. That’s what I think is missing. I think this is where the breast care nurses could have a more active role in it. You need an advocate to fight, to let you know what is available to you, because you don’t always know.’ Rebecca (diagnosed 4 years ago aged 47; interview 1)

Breast care nurses’ primary role is to provide care and support for those with early breast cancer

‘I think my final chemotherapy a breast care nurse at the hospital popped her head in, but she basically said, “I’m around, but I’m mainly dealing with people who have early breast cancer who are having surgery.”’ Tammy (diagnosed 3 years ago aged 47; interview 1)

‘[Someone in our support group joked] “Well, [the breast care nurses] don’t need to pay attention to us because we’re going to die anyway.” I think there don’t seem to be enough, so they’re spending a lot of time with women with first stage.’ Rose (diagnosed 1 year ago aged 69; interview 2)

‘My impression, and I could be totally wrong because I haven’t seen [a breast care nurse], but my impression of the breast care nurses is that they are very much sort of involved with that initial, your surgery, your initial chemo, making sure you’re okay, all that sort of thing. But I don’t know, I just think if you had a person who really understands metastatic breast cancer and all the services and things like that, that you could just go to with questions, yeah, would be really useful.’ Donna (diagnosed 6 years ago aged 46; interview 3)

‘[I couldn’t] necessarily [ask] the nurses [questions] because they’re not trained—They’re oncology nurses, but they’re not specific. They used to have someone who was a breast care nurse, but she’d left. I could ask some general questions, but not specific questions. So no, there wasn’t anyone.’ Kara (diagnosed 8 years ago aged 49; interview 1)

Not yet ‘ill enough’ to be offered /require supportive care from breast care nurse

‘I’ve been offered no psychology, no counselling, nothing. It’s just been, go and fend for yourself. Go for chemo, go for radio, and go and sort yourself out. I’m wondering if that is on offer when it gets to a certain point. Because I’m walking around breathing and talking and looking like everybody else and I don’t have anything majorly wrong with me, as far as everyone’s concerned, if they look at me. But there’ll come a time when things do start going wrong and I think maybe the advanced breast care nurse will probably be advantageous then. But at the moment I’m not sure. I don’t know. I don’t know if there’s supposed to be a structure where you’re offered options and things. I just don’t know.’ Vicki (diagnosed 11 years ago aged 48; interview 2)