Information on recurrence risk
Patient: Yes, they were mentioned, but if you would ask me now I don't think I would be able to day with any certainty. What I did take home was the chances of things developing the wrong way increases per year, and because I'm still so young, yes I'm not yet 80 … . But if you're 50, 60 I'll still want to reach an old age … so the percentages … . really cannot say any more, but the feeling … … of hopefully you've still got some years to go.
Patient: No, I didn't hear anything about them, at any rate I don't remember, that idea of percentages. But those percentages then huh, if you hear that, then you have to think by yourself like: yeah, but what's the point knowing this, as it doesn't actually say anything about me. It's just all or nothing. Either it comes back or it doesn't. Umm yeah, it's a question of wait and see if it goes well or not.
Patient: Then I actually have a choice, like in a while, if it turns out that, if I do the radiation and I've just got 1% or 2% yeah, more would help, like now I can consider it, yes I still think it's worth the risk, with possible complications, I think it's still worth doing the radiation. And if it's more percent, like, then yes, then I can say, yes guys, I just have to do it, you know?
Patient: Yeah, the radiation and everything around it, by your ribs maybe or um the tiredness. I was already extremely tired. I hear a lot of women talk about tiredness with radiotherapy. And umm, that your breast gets harder, and gets deformed. I've also got prosthesis in and I just know, radiation and prostheses don't really go together. So umm, and umm, wounds that heals poorly. I don't want to be bothered with all that. To be honest. If it really,uh, if the percentages had been higher, then of course I would have done it, but 5%? Then I reckon, you know, leave it at that, it's all right.
Patient: But at the moment I had to make the decision, I found it actually all less important than the idea of: so, all that works.
HP: That we expect some benefit, but because the risk that she gets a recurrence is already very low, and then is the benefit also relatively low and that in any case they are kept in follow-up.
HP: Recently there have been a lot of changes in the values for the rates, hum, that's all very difficult to estimate. So by giving detailed information umm, yes, that's tricky. You can also make mistakes of course. That umm, if you keep it vague, umm then I think that, well that's not much use to anyone.
HP: I always give a rough estimate as there is also uncertainty of course, because you're sitting opposite an individual and you can't really …. So you give a general impression, of the statistics, but you can't, I would never say like: you've got, 8% chance. You can't do that. Or can't manage to do it. You shouldn't do it, because you don't know.
HP: So it should be made visual to be able to introduce it.
Information on treatment burden
Patient: So the consideration of the tiredness and that daily trips to the hospital what I really wasn't looking forward to, like, let that be clear, because I really don't like hospitals, I find it all horrible. But I had the feeling of: if it must, it must. So if that helps, then I just do it. So that's no longer a consideration.
Other attributes
Patient: Umm, intimacy. And the feeling of, umm, at any rate my chest is rather public property during that trajectory and really respectful and kind and so on umm, fantastic at the radiotherapy, no bad word about it, but every day with your wherewithal open and naked I had like, I had lost it a bit and it was no longer ours, as it were.
Patient: Umm looking back me, umm, would have liked umm more information about what would happen if you don't go for the radiation, in my case then huh, what would be the consequences?
Patient: Yeah, that umm, like they did say, at least, that was how I heard it, that if later on something is there, then they did they say what would happen? Yes, then we would have to proceed to a mastectomy.
Patient: An important argument for me was what if I do the radiation now and I get it back, then I would have to, if I got it back, I would have to have an immediate mastectomy. So that could not be done in the same procedure, while if I don't do the radiation now, the next time I could be treated the same way. That went so quickly and well in my case that was a month of madness, but just one month.