Table 3 – Quotes on “Impact of follow-up care on the lives of survivors and caregivers”

Impact of follow-up care on everyday life

Survivor 1: “Two or three weeks before [the follow-up exam] … I get insanely nervous … then it already starts that … I’m just nervous or scared. I’m just afraid; afraid, what’s going to happen again?“

Caregiver 7: “When an exam is coming up, it starts three weeks before, then she is sick, seriously sick, really sick … I know for sure that it’s nothing but she feels honestly sick … all of a sudden she has such severe pain, like there are metastases … until we are there and the doctor says ‘Mrs. [survivor’s name, the authors], everything is all right’. Then it is fine, then she is healthy again. All of a sudden. Then the thoughts are all gone.“

Caregiver 13: “She is very excited, very excited, internally restless; she doesn’t want to show it, but through … movements and through thought processes … it is clearly noticeable. There is no need to ask … she is nervous and says, ‘Hopefully it will be okay’ and … then I always react to it and say ‘But there is nothing, what should be there?‘ … But of course that doesn’t help, the agitation is there … when it’s about your own body then … you are doubly and triply scared … but just like this depressed mood is of course the positive… when the result comes, ‘Thank God, yes, it’s great again, it’s done again’.“

Fear of and around scan

Survivor 2: “In the beginning, it’s always like you’re going to a court hearing where a death sentence might be pronounced, right?“

Survivor 14: “So, you wait again and by the time you are ready to get the injection [with the contrast medium, the authors] and lie down, an hour and a half has passed and the hour and a half is, in my opinion, the greatest poison for patients. Because the patient is so tense inside, to the point of no return and wonders: what’s happening? You’re not being told anything.“

Survivor 1: “The worst are the minutes when I’m waiting for the CT, when I’m waiting until it’s my turn. Then I think, dear God in heaven, oh please please please let me be healthy, let it be gone …. it’s just exhausting. I’m just brutally scared.“

Caregiver 14: “The patient always has this sword of Damocles over him, where he never knows. And I think the fear is also always there at every follow-up examination. Is it going well? Will anything be found? Am I lucky?“

Caregiver 1: “I sit in the waiting room and wait for her to come back. Of course, the waiting is always the worst. First of all, waiting for the examination to start and then, even worse, waiting for the examination results. Most of the time, they don’t tell you the results right away. The radiologists have the images in front of them, but they can’t tell you anything because they have to talk to the oncologist or the surgeon or whatever. And then it can happen that two or three days pass before you find out what it looks like. And that’s particularly stressful, of course.“

Sense of security and control

Interviewer: “And what does follow-up care mean to you?“

Survivor 15: “Certainty … I couldn’t say anything else about it now. Certainty about how things will go on … I’ve been so lucky … and to put that at risk … I don’t really want to.“

Survivor 19: “You have the feeling of safety and also a little bit of security and of supervision; and you’re not alone. Because if you discover something early, you can still help sooner than if it takes too long, right?“

Survivor 8: “Yes, it is clear, it is always certainty, because it was quickly clear that I had no metastases. … and then of course you always want to know if it’s going to stay that way… and it is already good to know that nothing is wrong. Then at least you have a sense of security, right?“

Caregiver 17: “For me, it is a very great security.“

Caregiver 13: “I personally believe that this rhythm of one year is actually … a good thing, because you simply know it is one year without the enemy coming into the picture again … Then it is simply a very clear thing.“

Caregiver 2: “And now [after the follow-up, the authors] we can really plan again. Well, my husband [the survivor, the authors] always said beforehand, ‘Wait and see’ in regard to vacation planning or anything else.“

No impact on everyday life

Interviewer: “Would you say that follow-up care … has an influence on your everyday life… ?“

Survivor 23: “Not at all. To me it’s just normal, like going to the ear doctor or going to the dentist … for me it was natural and it was logical and reasonable and clear why you do it. And it was never a big deal for me that I had to go there. It wasn’t like that. … No, not a scary thing.“

Interviewer: “What does it mean to you when your husband has such a follow-up examination?“

Caregiver 8: “Actually not very much. Well, he says, ‘I have to go there again’. But I always think, ‘Well, I’m sure it’s all right’. So I don’t drive myself crazy about it.“

Interviewer: “And how were you then during the time you were waiting [at the follow-up, the authors]?“

Caregiver 15: “Good, actually. … Because I actually think she [the survivor, the authors] is going to make it. I really believe that she’s going to make it, that there’s no cancer coming back.“