Pauline
Pauline was diagnosed with cancer of the ovaries/endometrial lining in 2016. She was asked to take part in the 100,000 Genomes Project when she was receiving treatment. She is keen to be involved in something that can help and is happy for her genomic information to be used.
Pauline has two adult sons. She is retired but previously worked in a bar. She is white English.
More about me...
Pauline was diagnosed with cancer of the ovaries/endometrial lining in 2016. In 1966 she had a positive smear test and had her womb cauterised. After this she had yearly smear tests which all came back clear. But last year she noticed a “funny discharge” and went to her doctors who referred her to the hospital. Pauline says that things “moved very quick” and she had a hysterectomy the following month.
Pauline decided to take part in the 100,000 Genomes Project after she was told about the project by the hospital doctor. Pauline was happy to take part saying “if it’ll help, I’ll do it”. The doctor explained what the project was and gave her a number of leaflets explaining the study in greater detail. While Pauline didn’t always understand what the doctor was saying, she thinks genomics is an interesting subject.
She hopes that genomic research may improve the prevention and early identification of diseases such as cancer. Pauline gave a blood sample, and a sample of her tumour was taken during her operation. Pauline felt comfortable with signing the consent forms and trusted the process.
She was told that she would be contacted from “time to time”, however she does not expect to hear back about results. Pauline encourages others to “go for it” and get involved in the project.
Although she isn’t sure if the woman who asked her was a doctor, Pauline was very happy to be able to help with the research when it was mentioned before her operation.
Although she isn’t sure if the woman who asked her was a doctor, Pauline was very happy to be able to help with the research when it was mentioned before her operation.
Well one of the doctors asked me if I would mind going on it. And I said "No, no I don’t mind at all, if it will help me or anybody else I will just go on it, and I don’t mind."
There’s a Chinese doctor at the [Hospital]. She’s lovely, lovely person. Well I don’t know whether she - I don’t know whether she’s a doctor, or whether - what she is, actually. But she came to me and asked me if I would mind taking part in it. And that was before I had my operation.
Right, okay.
Yes. So I said, "No, if it’ll help me or anyone else, I’m willing."
Yeah. And what did she explain to you?
Well, [sigh] I can’t really remember what, what she actually said. But she just did say it would help, it would help you, and more than you it will help a lot of other people - help us in our research. To you know, into the - how people get cancer. And so that, you know - I thought well if I can help anyway. I will. So that was it.
Two medical professionals spoke to Pauline about the project and explained it to her. She didn’t understand some of what was said but was happy to help others.
Two medical professionals spoke to Pauline about the project and explained it to her. She didn’t understand some of what was said but was happy to help others.
Well to be honest with you –
Or what did you think of it?
I didn’t really understand a lot of it, to be honest with you [laughing]. But that - that’s all I can say about it. You know?
She - the person was there at the hospital, and she said, "Do you mind coming with me for a blood sample?" And I said no. No.
And did she explain then about them taking a part of the tumour? Was it her that explained that?
Yes. And the doctor who told me all about it. The doctor, one of the doctors I think is in on it there, [doctor’s name], is it [doctor’s name]?
Right, okay.
Yes.
Yeah.
Very nice young man, he is.
Right. And what did he say to you? What did he sort of explain?
He explained it, he. Well, he went through much of what you said. You know, the same. He was very, very good. Took quite a while to do it, yeah.
Ah, okay.
He was very, very good.
Yes.
[Doctor].That’s it, yes.
Ah okay. Yes.
Mmm.
So he, you felt he explained things well about the 100,000 Genomes Project?
Yes. Yes.
Yeah.
Yes. I think he’s part of the project.
Oh is he? Oh right, okay.
Yes, he’s - he’s part of it, I think.
Oh okay.
And this lady, the Chinese lady as well, she is.
Yes.
At the [name] hospital.
Ah, okay.
Yes.
And so did they both talk to you together, when they asked you to take part?
I think I - they might’ve done, at one stage.
Yeah.
Yeah.
And you don’t remember what they sort of said, or? What, how they explained the project?
No, no.
Yeah.
No. He did tell me, he said - I said, "Well if it’ll help someone else." And he said, "Well it might even help you, as well. It might help you with your treatment."
Yes.
So what that meant, I don’t know.
Yes, I was going to ask - what do you understand by that? [Laughing.]
[Laughing] yes, so.
Yeah.
I don’t know.
Pauline is used to having regular blood tests because she is taking methotrexate for her arthritis, so she didn’t mind giving a blood sample for the 100,000 Genomes project
Pauline is used to having regular blood tests because she is taking methotrexate for her arthritis, so she didn’t mind giving a blood sample for the 100,000 Genomes project
They someone. I spoke to someone about it while it was at the hospital on one of the consultations, and she said, "Do you mind if I have a blood test?" Yes.
And was that for the 100,000 Genomes Project?
Yes, Yes. Yes that was for that. I said I didn’t mind.
Yes. Yeah. And -
I’m used to having blood tests.
Yes.
I take methotrexate for my arthritis. So I have - I have to have regular blood tests. And at the moment, since I’ve had this operation, I’m having them once a fortnight.
Oh, quite frequently then?
Yes. Yes.
So it was just another blood sample to give?
It’s - I think it’s just something they keep their eye on once you’ve had the radiotherapy.
Yeah.
I think it’s after - after you’ve had that they do the blood tests, so.
Yes.
I don’t know for how long. They’ve not told me for long I’ll have to keep going for them. But I go to the surgery.
Ah.
At [place].
Oh, quite local then?
Yes.
Oh that’s good. And the 100,000 Genomes Project, that blood test - that was done in the hospital, was it?
That was done in the hospital yes.
Yeah.
But she did tell me it was for that.
Ah, okay.
She said, "Do you mind if I - if I have a blood sample?" And she went with me to to the - in the hospital, to the - where they take the blood samples. Yes.
And she came with you, and?
Yes, and she took the sample away.
Okay.
Whoever it was.
Pauline doesn’t expect to hear back and doesn’t mind (played by an actor).
Pauline doesn’t expect to hear back and doesn’t mind (played by an actor).
She said, "Do you mind if I - if I have a blood sample?" And she went with me to the - in the hospital, to the - where they take the blood samples. Yes.
And she came with you, and?
Yes, and she took the sample away.
Okay.
Whoever it was.
Yes. And did they tell you anything about expecting any results for the 100,000 Genomes Project?
No, she said we will contact you from time to time.
Yeah.
And that was, that was it.
And do you expect to get any results from –
No.
For the 100,000 Genomes Project?
Well not - I’m not expecting them. I mean if they come [laughing], I’ll be interested.
Yeah.
But you know, I’m not - I don’t expect you to keep, keep me informed all the time, no.
And what would you be interested in if some results came?
I don’t know, really.
Mmm.
In knowing that I was going to be alright [laughing].
Yes. And if you don’t get any results? You feel sort of, is that okay? If you didn’t hear? If you didn’t hear anything again from the 100,000 Genomes Project?
Yes. Yes. Yes, I’m - I don’t mind. You know, you do what you’ve got to do.