Barbara

Age at interview: 65

Age at diagnosis: 65

Brief Outline:

Barbara agreed to take part in the 100,000 Genomes Project after she was diagnosed with a particular type of womb cancer. She hopes that taking part will help improve understanding of the various causes of diseases such as cancer.

Background:

Barbara is married with adult three daughters. She previously worked as a manager but is now retired. She is white British.

More about me...

Barbara first learned about the 100,000 Genomes Project after she was diagnosed with cancer of her womb lining. After her first biopsy, she received a call informing her of the project. When the result of her biopsy confirmed her cancer diagnosis, the surgeons explained what the 100,000 Genomes Project was and that it would involve taking tissue and blood samples during her operation. 

Barbara accepted the information she received and agreed to take part without giving it too much thought, because she said her mind was still on her diagnosis and what was going to happen in the future. She didn’t always understand what was being required for the project so had to ask for further explanation. Even though it was a lot to take in, Barbara feels that the project leaflets were helpful and contained a lot of information. While Barbara didn’t mind agreeing to the study when they asked her, she thinks it would have been helpful to have been given the information to take home and think about, rather than being approached in an appointment. 

Despite this, Barbara feels that taking part in the study will help understand the various causes of illnesses such as cancer. She isn’t sure whether her type of cancer is hereditary, but feels that if it is, then it is worth taking part in the study.  She has three daughters and she thinks it will have been worth taking part if the information may help them in the future.

After going for a biopsy Barbara received a message on her phone from someone at the hospital which worried her at first as she didn’t know what it was about.

Well I, firstly I went to the doctors for, because I had some symptoms that I was concerned about. And then I went and had a biopsy and was diagnosed with cancer of the womb lining. And it was there that I saw the poster in the waiting room while I was waiting. And then I got a phone call asking me if I would be - Well no, first of all it just left a message and I was a bit concerned because I didn’t know what it was a-about.

But the number was the hospital. So I phoned the nurse’s number that I’d been given, and she told me that it was probably to ask me to go, if I was interested in doing, being part of the course, the project, so.

Yes.

Then when I was - Then I went for the results of the biopsy and they told me that I had cancer. And then I was given the form with all the, the details, and we went through it all, and I initialled it all.

Okay.

And that’s how it - and I said yes that I was obviously, would do it. I didn’t know really - well I know I initialled everything, but you don’t always take it all in do you at the time [laughing]. So I wasn’t absolutely sure what it would entail, if anything, you know, so.

Barbara didn’t mind tissue samples from her womb cancer being taken during an operation.

They just said that some of the tissue would be taken, probably. And then may be some blood tests. Now, I don’t remember any blood tests but I think they may of been done while I was having the operation, so.

Right. Yeah. So you gave a sample, or you think that the sample –

I think that’s, I think so. I think a blood test was. I think she said to me that that would probably, that would likely happen while, while I was under the anaesthetic. So - I mean you obviously don’t know about it so [laughing].

Yeah. And in terms of the sample, you said about tissue?

Yes. I think that she did tell me that that would be going to the lab, you know. Some obviously goes to the lab anyway, in the hospital, but then some would go over, wherever.

And how do you feel about that? Sort of donating, or obviously it was tissue from the womb?

Yeah that’s - I don’t have any problem with that at all. I think that’s fair enough. You know. You want to find out things then you’ve got to be able to have the process of being able to do it haven’t you?

Barbara isn’t sure what she’d do with her results and wonders if finding out that her cancer is genetic would give her daughters something to worry about.

But I mean I’ve got three daughters. So I think that that was one of the reasons that it would be a good thing for me to take part in, if it was going to be something that would help the, in the future. If you know, if any of them happen to get this. I don’t know whether it’s a hereditary thing, I don’t think so, but. I don’t know, so.

Yeah, I mean when I, agreed to it I didn’t obviously know all what was, what was in it. But , no I think helping my daughters and helping anyone else that’s you know, going through this thing would be a - obviously it’s all cancers, isn’t it, it's not just my one, it’s all the others as well. I think anything that can help with cancer, because it’s such a big killer of people.

Yes. Yes, yes I mean. I don’t think that in the - if I got results, what would I do with them, really? [Laughing].

And I suppose if, if it came to that it was a genetic thing - you know - then maybe that would be useful for the, the girls. I don’t know whether that would just give them something to worry about, that they don’t necessarily [laugh] - I don’t know about that.

Barbara’s mind was on her cancer diagnosis and although she didn’t mind taking part in the project she would have preferred to have been given the information to take home and think about before she signed the consent form.

And what sort of information did they give you, in terms of like - about the sample that they wanted to take, and things like that? Did they talk to you about that?

No not really. No I mean I, they, they just talked through the leaflet.

Yeah.

There’s lots of things that you know, that I signed up for, if you like [laugh].

Yeah. 

I’m not a great - I suppose in a way I’m not a great questioner. You know, I tend to let things just go, in a way. So I don’t tend to. And I thought afterwards, I mean some of the questions that they say in the Macmillan booklet - I didn’t ask any of those. I just, I just took it. And, you know. So in a way I accepted what was on the leaflets, without actually going into too much detail, if you like [laugh]. So. Which maybe wasn’t the right thing. And another thing is of course your mind is still on the, the fact that your diagnosis, and you know, what’s going to happen in, in the future, in a way.

And is there anything about the whole process of taking part that you think could be improved at all?

[Sigh] I think maybe it would be easier if, if you were given this and able to take it away without having any, you know. And then going back, and maybe going through it. Rather than sort of - I know, I know that there was no pressure. But in a way I think they wanted me to fill it out. They’d got me and they wanted me to [laughing], to do it. If you know what I mean, but.

Yes.

I think perhaps if you take it home and then read it all.

Mmm.

And then - whether that would of made any difference. I don’t think it probably would actually, I think I probably would have still.

Still done it. 

Still done it, so.

Did you feel it was quite sort of, a little bit pressured? That you were sort of?

Mmm. A little bit, not too much though.

Mmm.

Because I’ve got a tongue in my head. I could’ve said, "Look, you know, can I not do this now? I want to take it away."

Yeah.

And I didn’t do that, so you know, that, that’s my thing.

Yes.

And I didn’t say anything, so.