Table 3 Quotes from non-carriers – CRC risk management

1.

Patrick (48, tested 2.5 years ago)

I’ve always had polyps, I normally have a colonoscopy every two years now…Obviously it’s hereditary, but because I’ve had the gene test done, well I’m no different to the normal person in the street I suppose.

2.

Ella (50, tested 6.5 years ago)

I have to have colonoscopies regardless because I have continued sort of polyps, so I’ve always believed that they’re gonna find another gene so I have never completely let myself off the hook.

3.

Jean (63, tested 6.5 years ago)

The Doctor (Gastroenterologist) that I was working for at the time suggested I have it every two years…I think they (FCC) said five to ten years actually…He said well that’s up to you, but I would like to see you do it every two years…It’s awful, but I’d much rather do all of this to make sure I’m screened and there’s nothing there…I haven’t got the gene but…I’m not scientifically trained enough to know what the odds are or anything like that.

4.

Greg (65, tested 6 years ago)

I’ve got Barrett’s syndrome…When I was found not to have the gene [for Lynch syndrome] they said you can have it every two years now the colonoscopy, but I’ve got to have the gastroscopy every two years for sure…Because of the family history and the Barrett’s syndrome and all of that sort of stuff…I have them at the same time.

5.

Michael (41, tested 2 weeks ago)

A doctor [at the FCC] came in and was explaining that their best practice understanding is you do a faecal occult blood test every two years once you hit fifty, which I’m happy to do.

6.

Paula (32, tested 3 years ago)

Because my risk is still there but just the same as the normal person, then the normal screenings…I can’t really remember in terms of colonoscopies and stuff, you know starting age…That’s probably something that I can actually do a bit of homework on and find out roughly when I should be having a bit of a think about it.

7.

Andrew (38, tested 4 years ago)

I remember them saying that even though I don’t have the gene, I’m still in the general population’s risk level…Whether I wasn’t listening enough or haven’t read enough of the information they gave me but I guess I’m not entirely sure as to what that means in terms of the recommendation would be for my own future. I guess I’m like the average person, how often, what sort of check-ups should I have? Should I have one of the FOB whatever they call its?

8.

Alan (41, tested 4 years ago)

Oh I guess someone who goes there and finds out a positive result probably needs a little bit more of discussion about the consequences and what that might mean in their life. Someone who gets a negative one, I just remember it being pretty short and sharp and congratulations you’re back in the normal population, and you know, walk out.

9.

Kay (44, tested 5 years ago)

I get the feeling that they didn’t say much because otherwise I would have been probably, if they had have suggested still being screened I probably would have been doing that so I think that they probably didn’t say anything. They just said that we haven’t got the gene.

10.

Meagan (33, tested 4.5 years ago)

You’re always living as if you were going to get cancer, the inevitable. It was a bit hard to change the mindset of you’re not going to or you know you’ve got the same chance as the general population…Just to go, okay, it’s not inevitable.

11.

Michael (41, tested 2 weeks ago)

I got it in my head that I was going to die at thirty-six and not see my son grow up…What also dawned upon me was that suddenly I’m now part of the normal population, that bowel cancer is not something that I carry with me anymore, and I’m still getting used to that idea…You almost become protective of bowel cancer, it’s like it’s your thing…Now it’s no longer that, and it’s kind of nice.