Table 2.

Themes and illustrative quotations.

Theme	Illustrative quotation
Abandonment	‘And I wanted to be part of this because, although the surgery went really well, I do feel as I have been left a little bit to my devices.’ (P4, FG2) ‘…at the time I just sort of felt sort of tossed into the wilderness after my operation…’ (P3, FG1) ‘I've been left in a lot of pain and very little support or follow up; so it sounds a very similar story.’ (P2, FG2)
Uncertainty about the plan	‘Mine was clearly explained to me on the phone and in a letter exactly what was we were going to be doing for the next 2 years and he said it was because it was a particularly aggressive cancer, so they did explain all of that to me on the phone and in a letter as well.’ (P4, FG2) ‘I guess I received a letter explaining but then some of the terminology in the letter I just did not understand, and nobody really explained it to me even when I asked initially.’ (P8, FG2) ‘He said to me the likelihood was being very high risk we would reckon 85% of people would see some reoccurrence of cancer somewhere else in the body in the next 5 years. But he just threw that out there and it was… You do not have time to react’ (P4, FG1)
Anxiety about follow‐up	‘I think the thing I found hardest with all of it was just that expectation management, so if they said 6 months and it is seven I would find that really difficult.’ (P5, FG2) ‘I always had to chase the fact that I was going to have a follow‐up scan…’ (P3, FG1) ‘And for the 2 weeks or 3 weeks afterwards [after the scan] you are left thinking any time that phone rings it is going to be an oncologist telling me it is back.’ (P4, FG1) ‘I think it is one of the… For me personally I think it is one of the worst things is just waiting for those results all the time, it's just…’ (P3, FG1) ‘Yeah’ (P5, FG1) ‘…and it's not so bad now because I'm under Oncology and they see my quite quickly and they tell me quite quickly. But I know certainly in the beginning it did take a long time.’ (P3, FG1) ‘Yeah, I agree with you there it does bother me, obviously I'm keen to know if this other one [tumour] is cancerous or not, so this next one is already starting to tick at my brain that is coming up.’ (P1, FG1)
Variation in care	‘…because there's a real disparity from one end of the United Kingdom to the other in terms of what we get as after care…’ (P4, FG1) ‘I think if you sort of live under one of the like specialisthThe evidence beyond the guidelin kidney cancer places you get a lot more information and a lot more help and things. If you sort of live somewhere that is not I think… you are very much on your own to your extent a lot of the time’ (P3, FG1) ‘If they are going to use the Leibovich score then everyone uses the Leibovich score. If some are and some aren't then they should not use it at all, they should not give it to people.’ (P4, FG1) ‘Do any of you talk to your consultant regularly? I talk to my consultant every month and through Covid; I've been to the hospital every month because I have to go. Results are face to face even through Covid, she will not give you a result unless it is face to face. […]’ (W3) ‘Well, that makes me feel like I am living on a different planet because I've seen my consultant once and that was at the 6 week review [when] I complained of abdominal pain…’ (P2, FG2)
Need for information	‘How do you live with one kidney? I did not really get too much explanation it has been a bit hit and miss….And I've just had to do my own research and try and work out what is there.’ (P3, FG2) ‘At my 6 week appointment when I was told everything that it was cancer and that I would have annual scans he mentioned ultrasound or it might be CT. So, I sort of thought okay at the time I was so blown away that it was cancer so it was hard to take it in…’ (P1, FG1) ‘I think I would have been scared to death if he [the consultant] had told me 85% [survival] chance in the next 5 years… I want to be educated but at the same time I want to be a bit oblivious.’ (P6, FG1)
Emotional support	‘I like to see people's stories [on KCUK online group] when they are better, I find that really helpful and uplifting sort of thing.’ (P3, FG1) ‘I do too.’ (P1, FG1) ‘I think it's the double edge sword is not it? It is good to see the good ones but part of my counselling there was a story that they put on there about a daughter who was at university and she made a video of her mum. Her mum had gone in and had all…pretty much exactly the same as I had and here it was really bad and she had got and it was now terminal.’ (P6, FG1) ‘I suppose I find the surgical teams and the oncology teams they are medical fixers and they do that… but the gaps around the emotional support and how you cope with that…I have had a mixture of emotions where I've been at a very dark place and there are days when I'm very positive. Someone mentioned Macmillan I think that's…Yeah I certainly think Macmillan are very useful and at one point I got involved in some counselling just trying to help me come to terms with it…’ (P3, FG2)

FG, focus group; P, patient.