Lucy Z

Age at interview: 53

Age at diagnosis: 53

Brief Outline:

Lucy Z took part in the 100,000 Genomes Project when she was diagnosed with endometrial cancer in January 2013. She thinks the project is an ambitious one which may be quite influential.

Background:

Lucy Z is a graphic designer. She lives with her partner and daughter who is 10 years old. She is white British.

More about me...

Lucy Z was diagnosed with endometrial cancer in January 2013. She was invited to take part in the 100,000 Genomes project while she was in the waiting room for her pre-operative assessment. 

A nurse approached her and her partner and left them with information leaflets. The nurse was very polite and Lucy Z didn’t feel under any pressure to sign up. Lucy Z felt that it was difficult to read the leaflets and take in the information at the time because she was nervous about her appointment. Her partner went through the information leaflets with her and encouraged her to take part. 

After discussing it with her partner, Lucy Z agreed to take part. She felt that taking part was worthwhile for a number of reasons. Firstly, the 100,000 Genomes Project sounded like an ambitious project that could be influential. Secondly, there was the possibility of extra screenings that she may not receive through the normal treatment process. And thirdly, the results from the research could help others as well as herself. She also felt that participating in the project would be “giving something back” to the NHS.

Lucy Z had a couple of concerns about confidentiality and the commercial use of her samples. She worried that commercial companies may be able to identify her through her sample and target her with advertisements and products. However, after reading the information leaflets further and receiving assurance from her partner, she felt this was unlikely.

Overall, Lucy Z thinks that the project was easy to take part in as it involved minimal involvement on her part. She donated extra blood samples at the same time as samples were taken for her pre-op, and tissue samples were taken during her operation. 

Lucy Z hasn’t thought much about getting results and wouldn’t be bothered if she heard nothing further from Genomics England. She wouldn’t want to be given any information that could be “frightening or scary”. She is keen for life to return back to the way it was before her diagnosis, as far as is possible.

By taking part in the genomes project Lucy Z feels she is giving something back to the NHS.

Well it sounded like a sort of big project. Sort of an ambitious one, so something that would be influential, not just a tiny thing. It sounded like a really big one. So that makes, you know - to me, yeah, it sounded useful. The fact that I might get extra screenings was a plus. You know? Whether that actually will happen or not, I don’t know. But I guess that’s, you know - that’s a positive thing. And it’s almost giving something back isn’t it [laughing]. In a setting where you are, well receiving free health care from the NHS basically, and yeah, returning something to it.

Yeah, can you tell me a little bit more about that? Sort of, you feel like, sort of that you're giving something back, or?

I haven’t really thought about it before [laughing].

Okay.

But I haven’t go much more to say on it, except that I think that’s probably, you know - I have a lot of respect for people that work in the health industry, and in hospitals. And you know, have that commitment to that kind of work. And I guess in in cancer as well particularly, because it must be grim, a grim area to sort of have to work. So I don’t know. It’s all part of yeah, respecting - you know, the people involved, who are striving to make things better. Yeah.

Lucy Z didn’t feel mentally in a place to do anything when she was approached. Her partner, who is a scientist, understood about genetic research and helped her make the decision to take part.

And someone came to speak to us in the waiting room about it, if we were interested. I say 'we' because I was with my partner.

Yeah.

And, I was - To be honest mentally I wasn’t in a place to sort of do anything. And I would’ve said, probably said, "No [laughing], I can’t be bothered with it. I know I can’t be doing with it." But my partner's a scientist and academic. He works at the university. 

Ah, okay.

And he said, "I think you should do it. I think it could be good, a good thing."

Mmm.

You know he read through it with me, because I was a bit unable to focus. And he said, "It might, you know you might gain from it. There might be things in there that are going to help you, you get some extra screening possibly, and some extra stuff that you wouldn’t otherwise get."

Mmm.

So I thought ‘oh whatever’, you know, ‘I’ll do it’.

Lucy Z didn’t feel under any pressure to take part in the project when the research nurse gave her leaflets to read in the waiting room at her pre-op assessment.

Did she sort of introduce herself?

Yes.

What did she sort of say? How did she sort of introduce the -

Gosh I can’t remember. She was quite formal. 

Yeah.

She was polite and there was no pressure.

Okay.

I don’t think there was any pressure at all to do it. You know, I didn’t see her handing forms to everybody, or anything. She just gave one to me. But there was probably nobody else in the waiting room at the time. So I didn’t feel - I think my partner had heard of it, as a project possibly. No, she just left me to read it. She didn’t feed me with any information, like; this will be good for you because blah blah blah. You know, nothing like that. She didn’t use any tactics to influence my decision at all, it was very - read it, you can do it, or not, doesn’t matter either way.

And then, did you go then to the separate room?

Then we went to a separate room. And we, we filled this in, in the separate room. And I think I might have done this before the bloods, I can’t remember. Yeah I think we did the bloods last. So I signed all these, and she gave me the carbon copies.

Lucy Z was pleased that her blood samples were taken at the same time as her pre-op assessment blood samples.

So I did it. And I don’t really mind, they just had to - A woman that gave us the forms took some bloods. On top of the ones I had to take. I think maybe I had to take three more than the regular ones I would’ve needed for that pre-op assessment.

Yeah.

So she took those bloods and that was it. I just agreed to allowing them to take part of my stuff [laughing], after the surgery. During the surgery they took, took material, you know, from my womb. Part of - a sort of biopsy for their own, their own uses.

Yeah.

As well as what was taken, you know, for - by the surgeons.

And so did you then have to sign things?

Yeah.

What happened then?

I think I copied - this was the consent form that I had to fill in.

Oh yeah.

When she took my bloods.

Oh, so she took your bloods there and then?

She took my bloods. She did all the bloods. Because she was a nurse.

Yeah.

I didn’t need to have two sessions where they took blood. She just did five with one, you know, continuously with one thing.

Yeah. 

Which was quite practical.

Yeah.

Because I thought I was going to have to have.

Another.

Two sessions in two different rooms with two different people. You know, one in one arm and one in the other arm, but it was all taken from one.

Okay. So it was the same nurse that you saw for the interview?

So that was quite good. The same nurse. No that was the - that was, it was this nurse. The nurse who gave me the genomes. [Name].

Yeah.

She did the, took the bloods, herself.

Ah okay, yeah. 

And then - so she took the ones she required, and then she gave the other ones to the department for their needs.

Oh okay. 

Which were, you know, the pre-op assessment needs. Yeah. 

Lucy Z thought the project sounded influential and she hoped it might provide her with extra screening.

Well it sounded like a sort of big project. Sort of an ambitious one, so something that would be influential, not just a tiny thing. It sounded like a really big one. So that makes, you know - to me, yeah, it sounded useful. The fact that I might get extra screenings was a, was a plus. You know? Whether that actually will happen or not, I don’t know. But I guess that’s, you know - that’s a positive thing. And it’s almost giving something back isn’t it [laughing]. In, in a setting where you are, well receiving free health care from the NHS basically, and… yeah, returning something to it.

Lucy Z wouldn’t mind not hearing back as she wants to live her life and having contact might remind her of her illness.

And if you didn’t hear any results or anything again from Genomics England how would you feel about that?

If I didn’t hear anything more from them?

Yeah.

I wouldn’t mind [laughing]. I don’t mind. Yeah, that’s fine as well. Yeah.

Yeah. So you’d be okay with not hearing anything.

Oh yeah, yeah.

And why is that? Can you explain sort of why?

Can I? Oh well, I don’t know. I want to live my life as normal again. You know? I want to be how I was before the diagnosis, if that’s possible. Or as near to that as possible. So any trawling over everything, anything that reminds me of my illness, I’d just quite like to close the door on it. Yeah.