Linda

Age at interview: 58

Age at diagnosis: 57

Brief Outline:

Linda took part in the 100,000 Genomes Project when she was diagnosed with breast cancer in January 2017. She is keen to help with medical research and feels that it is the only way ‘to move forward with cancer’ and to help develop new treatment options and less invasive surgery.

Background:

Linda is married with two daughters aged thirty-seven and thirty-five. She is now retired, but worked as a house matron in a boarding school. She is white English.

More about me...

Linda was diagnosed with breast cancer in January 2017. After receiving her diagnosis, a clinical trial doctor invited Linda to take part in the 100,000 Genomes Project and explained what the project was about and how the tissue and blood samples would be used for research. The doctor also made sure that she understood fully what the procedure was and that it was not going to affect her in any way. Linda was given information to take home to read, but felt that everything had been explained clearly and in detail. With the support of her husband, she agreed to take part straight away. Her daughters also supported her decision, and looked online for more information.  Linda felt that taking part would give her the chance to do something positive and useful following her diagnosis.

Overall, Linda says that her participation was straightforward and she has no concerns about any aspect of it whatsoever.  Further, she can’t think of any main aspect of the participation process that would need improving, but suggests that Genomics England could tell people how long they would need to wait for feedback – she says that maybe they told her but perhaps she wasn’t listening. She thinks that the project will help future generations with information about any genetic risks of diseases like cancer. 

Linda encourages others to take part in the 100,000 Genomes Project because she sees it as advancing medical knowledge to help her family and society in general. Linda believes that medical research is the only way ‘to move forward with cancer’ and to help develop new treatment options and less invasive surgery. She reflected on the fact that without the research that has been done in the past, she would not have been able to receive the treatment she has had. Linda believes that more research is needed to improve outcomes in the future. 

After reading the information Linda started to try and find out more about the project.

Did you feel that you need more information at that?

No I didn’t. I was quite happy. I felt that it was explained to me quite clearly and I felt quite happy with that. It was only afterwards I knew that this would happen we, at some point but it was just like thinking, oh, you just want to know things really. So you read, you know, I did read up a little bit more about it and because then when you go for your pre-op it’s there and everything. And you hear things just recently on the news about different things so it’s very much more of, I’ve heard more about it probably since I’ve gone through. So yeah.

And have you seen the website they have?

No. I haven’t.

Ok

I didn’t know.

Did they mention it to you or did they or did you? And all the information did it come as another bit of information about the website?

No I didn’t really know much about the website at all. I haven’t looked. I’ve read about it on, I’ve looked it up on my and that and sort of read a little bit about it but not

On the website.

Not

Ok so you have Googled something?

Yes I have. Yes I’ve Googled some more information about it and everything.

Linda found taking part was “straightforward” and she would “recommend” it to others.

I think my experience has been very straightforward. It’s been very good for me to take part and I’d really recommend it. I think it’s, it’s our future. We need to look at how the future is, you know, everything is going to improve. And better things for, you know, better results for our families and children and people.

I would like to say how the whole process has been very straightforward. It’s been easy to follow and again I think, you know, again the support I’ve had. The support that also I had at the hospital with it all being explained and follow up, I think it’s been very good. I really do.

Linda was “happy” to be doing something to further research and hopes it will help future generations.

What do you see as the potential benefits of taking part I mean for you your family or society in general?

I think for instance for everything. It’s the research as how we move forward with cancer. How we treat it. How, what treatment options are available. Again perhaps not, you know, there’s other ways of treating it than sort of invasive surgery maybe looking at the best ways to. I see it as protecting young people like my daughters and other young people. You know they could go through all sorts of different cancers, breast cancer is it running in the families. Is it genetic and everything. So as far as I, it’s looking at the future of how we treat cancer.

Ok. Do you see any kind of risks or pitfalls?

None whatsoever.

No?

No. I think it’s, no none whatsoever.

Ok so for you it’s all positive?

It’s all very positive, none whatsoever.

What were your hopes about taking part? Did you have any expectations or?

I think for me again it was, it made me feel happy that I was doing something for research. And again if it’s going to help perhaps me or anyone yeah I feel very, very much sort of within that feeling of, wouldn’t say sense of satisfaction but something that I needed to do, needed to be part of, very much so.

Ok. And do you feel you made the right decision?

Oh yes without a doubt and anybody else I’d recommend it to.

Why can you say something?

Because I think it’s, you can close yourself into this with cancer but sometimes it’s better to be involved. And I think for me I was, I was looking at it as a good way of moving forward, a good way of getting good results for the future. And if it, you know, if it helps me in any way or it helps I think it’s a really, definitely for me I think it’s, it’s good. You know if nothing comes out of it for me it could come out of it for generations in future.

Ok so it’s a positive.

Very positive yeah

So you were ok with the whole process?

Very much so yeah and never hesitated, never regretted it, never at all. I’m just interested to know that everything that’s going to happen with it. And it’s just interesting to see how it all. And you’re looking at things that come up and you think well actually I was part of that. And it makes you feel really good. Gives you a really good sense of satisfaction and that some good is coming out of what I did, just one little person and everybody else that’s doing it.

That is very good because I interviewed a lady last week and she said, “I feel very proud about taking part.”

Oh yes very much so, very proud. And it’s made my daughter, it makes people think when I’ve talked to other people about it and they said, “Well actually we’d do that as well.” I think that’s great because a lot of people don’t want. When they are diagnosed with something as big as, it’s a big thing and no I... There was no hesitation there and I feel, like I say again, very proud that I’ve done this.

Yeah.

And we talk about it and I think people understand it then when you explain it a little bit to - “Well actually yes, you know, I would do that too.”

Linda thinks medical research is important so that treatments and diagnoses for cancer can progress to “protect future generations.”

I decided when I spoke to the surgeon obviously they ask you if you’re interested in taking trials which I was because I feel that it’s really good to do research. It’s really going to help my children, my grandchildren and everybody. And I think it’s a brilliant thing to do I really do and I’m so glad I did it. Without a doubt I’m really glad. 

What do you see as the potential benefits of taking part I mean for you your family or society in general?

I think for instance for everything. It’s the research as how we move forward with cancer. How we treat it. How, what treatment options are available. Again perhaps not, you know, there’s other ways of treating it than sort of invasive surgery maybe looking at the best ways to. I see it as protecting young people like my daughters and other young people. You know they could go through all sorts of different cancers, breast cancer is it running in the families. Is it genetic and everything. So as far as I, it’s looking at the future of how we treat cancer.

Since Linda’s identity will not be revealed she is not worried about sharing her data. She ticked all the boxes on the consent form.

And how do you feel about sharing this information, this data with, I don’t know, the commercial world?

Again you’re a name, you’re just a number or a letter and a number. So that’s ok. I’ve not a problem with that.

Ok.

If it’s going to be, do good then let’s do it.

Ok because I mean. Was anything said about possibly commercial uses of the samples, the use by private companies, drug companies?

I think it was mentioned, yes. And was I happy with that. I think that was one of the tick boxes, yes and I agree. Yeah, yeah I agreed to that.

Why did you?

Because again it’s got to, you know, we’ve got to move forward and learn and I think the process is. If you are going to take on this trial you embrace it totally. You don’t do a little bit of it and not the other bit of it. So if you are going to do it you do it as a whole issue.

Ok. But you have no concerns with sharing the?

No, no ,no. You again, you know, it’s not going to be broadcast that it’s me is it [laugh]. So as far as I am concerned it’s fine.

Ok. So there are no worries at all?

No, none.

Linda thinks that her sample is stored a de-identified somewhere where it can be used in the future and passed to others.

Tell me about what you understand about how your data will be stored?

Well that will be kept in a bank and used for report-. I gather that it will be used at other times, not necessarily now but in future research they will pull on those, those part of the back and it will be used in whatever way needed. So and the data obviously to be able to use the information to pass between other people which it’s got to be hasn’t it to, to do the research. You’ve got to be able to talk and pass other information to other areas and everything. So

Ok. And so you were obviously informed that it will be anonymised (de-identified) that you will be ___?

Exactly it’s all anonymous. There’s no. so as far as I am concerned that’s ok.

Ok. So you

All I know is I’m a number [laugh]. That’s fine.

Most probably a letter and a number.

Yeah a letter and a number yes exactly [laugh]. That’s fine.