Follow-up care and the risk of recurrence

audioclip
Transcript

Whereas in the English group, there are some; so I needed to have hope. Because with a recurrence rate of 50%, and a survival rate of 50%-40%, it is like… not easy to have hope. So I needed to have some examples.

Interviewer: And how do you live with thinking of a 50% recurrence as you said?

I find it difficult. What I find difficult is that since the inflammatory cancer is not a well-known cancer, unless you work in the healthcare sector and even though, it depends on the title of the person… Often, 99% of people that my parents or I spoke to, they had no knowledge of it. And I am under the impression that even if I say that it is severe, that is a severe sickness, I am not sure that everybody understands this. I find it difficult and I am like, I am under the impression that they do not understand that I am not joking about the recurrence rate in my case; I was told that it is 50%.

And this, I think that people do not understand, that’s it. I find it very difficult for now, but of course it has not been long since I finished the big treatments. So may be with time I will learn to live with it, but for now I find it difficult.

Interviewer: Did you find support with the women on Facebook?

Yes. I would say so since I registered with the English group and that I have examples. Things are not quite as bad. But I would say that having examples it is still difficult but not quite as bad.

Interviewer: From women that have survived for a while?

Yes.

Interviewer: …for how long?

In find it a little bit less difficult to have hope. I believe it a little more. I would not say that I believe it 100% but I believe it a little more. It’s easier to believe it.

Interviewer: And what is your information need? Are there things that you would like to know more about? On the inflammatory cancer?

I would say that what I needed, I wanted to know more about what was going to happen after the treatments, what can I hope for or not? And I also wanted to know… have information that could give me hope. Yes.

Interviewer: What kind of hope?

No, it would be giving me more reasons to hope that I have more than three years to live, because I even saw that 50% of people died less than four years after the diagnosis. I already have one year behind me, so I have three years left. I want to hope that I have more than that left, but I want to be realistic as well. So…

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