Table 7 Quotes from carriers – GC risk management
From: How does genetic risk information for Lynch syndrome translate to risk management behaviours?
Quote no. | Participant | Quote |
|---|---|---|
19. | Adele (41, tested 4 years ago) | We talked about future surgeries and my options as what way to go next, it was all done straight away…She sort of said, go away and think about it…So within three months I was in hospital having a full hysterectomy…For me, prevention is better than cure. |
20. | Linda (47, tested 10 years ago) | They (the FCC) actually gave me a contact for a Gynaecologist that dealt with people with Lynch syndrome…They said the colonoscopies would be every year and the endometrial sort of stuff would be probably once a year as well…From that Lynch workshop we had the other day, they were sort of saying that maybe that’s not the best sort of screening [for gynaecological cancers]…I’ll probably have to ask the gynaecologist to make sure that well is this the best screening, or what do they recommend? |
21. | Caroline (31, tested 8 years ago) | [Do you think about it a lot?] More so the issue of the uterus cancer, not having kids and cause I haven’t sort of necessarily found someone, that probably gets to me a little bit more than anything. |
22. | Shelly (65, tested 1.5 years ago) | I remember them telling me that, the specialist, that he may suggest that I have a hysterectomy…So I went and sure as eggs, that’s what he suggested and I can see that he’s seeing it from the medical [point of view], but I was healthy. I said, are my ovaries healthy? He said yes. So I don’t want to do that, and that was over a year ago. |
23. | Amy (32, tested 8 years ago) | When I found out my sister was having the ultrasound I said to her, why are you having that? I’m pretty sure in that initial meeting when we all found out that we were carrying it, it was just the colonoscopy that was the screening. There were no other options at that stage…But I will be looking into that. |
24. | Gaby (51, tested 10 years ago) | [The risk of endometrial cancer] wasn’t mentioned, I don’t think so. I don’t remember. It might have been but I don’t remember…I was bleeding a lot…I went and saw my Oncologist, he said it’s all related. I thought it was more so the breast and ovarian cancer was linked with the bowel, didn’t know about the endometrial. So yeah that was a little bit of a piss me off because I try to keep up with everything. It is what it is, can’t change it, just deal with it. |