Table 3 Feeling that supportive care needs are unrecognised

Not being ‘visible’ in the healthcare system, therefore not being known to breast care nurse

‘You kind of get missed, because metastatic doesn’t follow that traditional route, and quite a lot of us have quite different pathways and different medications.’ Heidi (diagnosed 5 years ago aged 48; interview 2)

‘I haven’t seen a breast care nurse since being diagnosed with secondaries’ Donna (diagnosed 6 years ago aged 46; interview 1)

‘[A breast care nurse] did come and see me at chemo and said something about sorry they didn’t know I was doing radiation, they would have come and seen me in radiation. But I didn’t know that.’ Kylie (diagnosed 3 years ago aged 46; interview 1)

Expectations that they ‘know the ropes’: assumptions that women with metastatic breast cancer know the system

‘I’ve only seen a breast care nurse once … she just came and asked me did I want any advice and I said no. I didn’t have anything to ask and I haven’t seen one since.’ Rita (diagnosed 5 years ago aged 47; interview 2)

‘I’d had my mastectomy and [the breast care nurse said], “Oh, you’re only secondary. You’re fine now,” I never saw her again. I said, “I’d like to go to a support group.” But nothing ever happened. Nobody cared … because I wasn’t primary diagnosed I got left behind.’ Christine (diagnosed 9 years ago aged 54; interview 1)

Having unmet needs for information, support and care coordination

‘When you’re in an appointment with an oncologist and there’s so much information sometimes, not always, it just would be good to know where you could go and spend five minutes talking to a nurse just to get clarification on stuff.’ Nicole (diagnosed 1 year ago aged 41; interview 1)

‘I think if the breast care nurses are mainly dealing with the surgical patients for early breast cancer, they need an alternative for women who are now facing a lifetime of dealing with the illness. Yeah, there should be some contact point, I think, at the hospital to deal with those people.’ Tammy (diagnosed 3 years ago aged 47; interview 1)

‘I think when you’re first diagnosed [with early breast cancer] you’re sort of allocated a breast care nurse. But I haven’t seen a breast care nurse since being diagnosed with secondaries. I’ve found that I’ve had to be quite proactive in getting what I want in terms of information about other services and things and I think if there was someone through the hospital system that could do that for you or with you, that that could be really useful.’ Donna (diagnosed 6 years ago; interview 1)

Needing support from someone other than oncologist

‘If you needed help, more than drugs and keeping you ticking [along], [the oncologists] just don’t have time. You need someone else to spend time with you regarding really sticky questions.’ Diane (diagnosed 7 years ago aged 50; interview 2)

‘I think with some oncologists I think they see things so much in a scientific way that they don’t really see the person or the woman.’ Nancy (diagnosed 5 years ago aged 58; interview 1)