Characteristic quotations from the narratives illustrating the four categories of dealing with cancer through information
| Ways of dealing with cancer through information (categories) | Characteristic quotations for the four categories |
| Becoming confident in one’s treatment decision | “And so, okay, then I said: ‘Ok, but I would like to discuss it again with my family doctor’. He said: ‘Of course, obviously’. So I went to my family doctor and discussed it with him. He said: ‘Mr. Weber [pseudomyzed name], I cannot say that you should do this and this. But-’. Essentially I had already decided what I wanted to do, but my family doctor also said that in his opinion this implant would be good. And he also had a patient who’s had it for a long time and was completely satisfied with it. So I said: ‘Ok, I’ll do it.’” (Male, aged 72 years, prostate cancer) “On the topic of wanting a baby, I finally also found some reports of women who said: ‘Yes, I dropped it prematurely [a medication recommended by her physician] and got pregnant’. And these are the things that gave me courage. Because doctors can tell you a whole lot, but ultimately it’s the experiences that count.” (Female, aged 34 years, breast cancer) “Or you hear things left and right, where you think: Well, what to do? Or just the information from the first doctor, who said: ‘Take both breasts off. Do otherwise, and you’re doing it wrong’. The next one says: ‘Hmm, let’s try this’. So now I just go with my gut feeling: ‘I trust him, so that’s alright.’” (Female, aged 54 years, breast cancer) |
| Taking responsibility for one’s situation | “The more you inform yourself and the more you know about the connections, the more qualified you will be for your medical consultants. I have been able to ask quite different questions. I have also been able to discuss things much better with doctors. So I got other answers again. In retrospect, it even happened that I was asked by a physician who was not directly involved, but when talking about my illness: ‘Tell me, are you in the field?’ Whereupon the only answer that came to mind was: ‘No, [but] I have become a professional patient in the meantime’. And you become qualified as a patient, but I think that is also important. It’s up to you. And you have to know everything about it. And you cannot learn enough yourself.” (Male, aged 68 years, colorectal cancer) “So they [the patients] cannot of course develop or suggest the therapy, but they make the decision: ‘I’ll do this therapy because I’ve grappled with it and decided it will help me on the way to recovery’. This is a decision every patient should make for themselves. I am convinced that this therapy will have much more effect when I have decided for it myself. Because of the psychological factor, everyone knows, there are enough studies on placebo effects and so on. This decision, if I can answer clearly for myself with ‘Yes, that’s what I want to do now’, this is incredibly important. And I believe that physicians could also relieve themselves a bit if they would involve the patients more in the decision, and that is simply the right way in terms of how our society is developing.” (Female, aged 51 years, breast cancer) “Well, I got up in the morning two days before the surgery, got dressed and said: ‘I’m going. I’m going to look for someone who has an artificial bowel exit. If you cannot get me that, then I’ll look for myself’. (…) At that moment I said: ‘If so [going for the surgery], then I have to know this. I have to see someone who is living with that thing’. (…) And I was totally amazed how it went. In any case, to get to the point, after this conversation [with a woman with a stoma] it was clear to me: I can deal with it.” (Male, aged 64 years, colorectal cancer) |
| Understanding the consequences of the disease and treatment for one’s life | “And therefore, according to an estimation of the probability, a urologist may say: ‘You don’t have to worry, nothing will happen in the next seven years’. So why chemo, why OP? If the end of life is already settled in this area, then one should live in peace. But if you want to live longer, then you have to, this sounds terribly dramatic, choose life-sustaining measures, and this is what I have done. (…) And the crucial question was: ‘You are now 60 years old, how old do you want to live to?’ And when I said: ‘Yes, my parents are both over 80’, the only conclusion was: ‘Your life expectancy of 20 years, counted from today, leaves the recommendation that you should be operated on’, because it is almost impossible that this cancer will remain so long within the organ. And I would really like to be 80. Therefore I have been operated on.” (Male, aged 66 years, prostate cancer) “But I know that he said: ‘Ninety-nine percent certainty colorectal cancer. And you have two quite uncomfortable years ahead of you’. In retrospect, somebody I told this to, he said: ‘For God’s sake, how can you assault someone like that?’ I must say, in retrospect, I was very grateful to him.” (Female, aged 62 years, colorectal cancer) “Well, now I’m just thinking of course about the debate: Should I be operated on or not? What plays a role, one thing is my strong desire: I simply want to stay healthy and stay intact. And of course, the fear of the side effects of an operation, so the fear of changing or losing my sexuality. I did not really feel the worry of becoming incontinent, somehow I had the feeling that I’m this young, my body will manage. A surgeon had also made it relatively clear that the chances are really quite good. (…).” (Male, aged 48 years, prostate cancer) |
| Dealing with fear | “When the fear comes, there is really no advice one can give. So at that time that book [about a lady who had breast cancer and whom the doctors had given up on] was improbably helpful, she really gave me courage. At first I thought: Is it good to read such a thing? However, it was very good, because she fought like a lion. And that was very good.” (Female, aged 48 years, breast cancer) “No, I did not want to [do Internet research], for the simple reason: In order not to make myself crazy. Because others might describe this or that and have this or that. From my personal experience – I know myself, when I learn about things that others have, then it could happen that I will project it onto myself and perhaps I do not have it at all. And that’s why I did not do that. Protected myself. That was a protection. (…).” (Female, aged 51 years, breast cancer) “So, my prostate cancer education actually only came in the years after. This is really strange, now that you ask. I do not know why I did not ask before. Maybe even from cowardice. That could also be. Maybe I did not really want to know.” (Male, aged 77 years, prostate cancer) “[I searched] On the Internet. But now, in hindsight, I really have to say, there are really quite a few websites that I would not recommend. There really is sometimes, or with some things I have indeed already said: Man, what is written here is in the first place just not medically sound. This will give many patients really a lot of fear. And then I said at some point: No, I’ll let it go. I’ll not look anymore.” (Female, aged 44 years, colorectal cancer) |