Rebecca

Age at interview: 49

Age at diagnosis: 48

Brief Outline:

Rebecca was treated for breast cancer and has undergone surgery, chemotherapy and radiotherapy. She agreed to participate in the 100,000 Genomes Project because it is an opportunity to “help to research to help people”. She thinks there should be more information given to the public about the project so people are aware of it before they are asked to participate.

Background:

Rebecca is married with three daughters aged 12, 17 and 21, and one son aged 7. She works part-time as a nurse and is white British.

More about me...

Rebecca was invited to take part in the 100,000 Genomes Project during the meeting with her consultant. She felt that the timing wasn’t right because she was worrying about her diagnosis of breast cancer and treatment options - as she put it: “your mind is elsewhere”. She was given information to read at home and she also looked online. She didn’t know about the Genomes Project before she was invited to participate and thinks that it should be better publicised in the media, social media and in GP surgeries so people in her situation are aware of it before being asked to participate.  She also thinks that the project isn’t promoted enough by health professionals.

Rebecca felt that by agreeing to take part in the 100,000 Genomes Project she was “doing a little to pay back” for the medical research that has gone before and that she have benefited from or, as she put it: “I’m having treatment on the back of other people who’ve taken medical research in the past”. She says that donating tissue sample is important because it is helping identify the different types of breast cancer and helping to develop more tailored treatments. The more donations of tissue samples may help researchers identify other undiscovered types of breast cancer still. She also notes that “the tissue was going to be thrown away, incinerated so it seems reasonable to keep it for research”.

Rebecca hopes that medical research will help people to be screened at a younger age for genetic-related diseases. Through screening, she found out that she has the BRCA1 gene that causes breast cancer and increases the risk of ovarian cancer. Her daughter aged 21 was screened for the BRCA1 gene and tested negative. Rebecca feels that these kinds of tests are crucial to help people make life decisions like when to start a family.  

Rebecca feels that Genomics England should keep in touch with people who took part in the project by sending a yearly letter with an update and news about the project. She cannot recall being told that she would receive information about her personal results.  

Rebecca doesn’t have any concerns about data storage and data security, but when first told about data sharing she was alarmed to know that her samples could be used by drug companies. Later on, she changed her mind as she recognised that commercial companies could come out with new treatments that would help people.

After receiving written information about the project Rebecca also looked the project up online, which she found worthwhile.

I read about it. I, when I came home I actually read about it. You, we di-, you didn’t actually have to sign the form there and then. You had to bring it back when you went for your pre-assessment. And so they gave me information, written information, which, you know, I went home and looked at. But I also looked it up on the internet to find out what actually it was. And I found it really worthwhile and really interesting actually. 

Okay. When you said you looked on, on the internet, were you looking at the website, any website?

I was just looking generally at the genomes project, the 100,000 Genomes Project and what we were trying to do as a country for people sort of that come after us. Sort of what it’s trying to achieve.

Rebecca says treatments for breast cancer have advanced so much since the 1970’s because of medical research. Without it “progress actually stops.”

I think it’s really important to take part in medical research. I’m having treatment on the back of other people who’ve taken medical research in the past. And when I looked up, people who had breast cancer, you know, sort of died a lot more in the 1970s. Since the 1970s, we’ve had the 80s and 90s, lots of people have done lots of research. And now it, the, the survival rate, the cure rate is so much higher. Well, thanks to them I’m getting the better treatments. I have three daughters and I don’t know whether they will end up with breast cancer or any other breast, or any other cancer. So what I can do and the really important thing I can do is give a little bit of myself so that it can help create better treatments in the future. Otherwise, progress actually stops.

Medical research revealed a genetic problem that caused Rebecca’s breast cancer. Her daughter has since been screened and this has given her more options for early treatment.

Oh, absolutely I made the right decision. Because there is so much we don’t know, and so much people are finding out sort of in the last few years about genes that cause breast cancer, and what ages they cause them. And then we’re able to screen. For example, I found out I’ve got BRCA1. So I actually have, unbeknownst to me, I have a genetic problem that caused my breast cancer. Now, I have no history, no family history of breast cancer. Cos largely breast cancer occurs in women. And my family, funnily enough, is largely boys. So it didn’t show up. Now, had I been able to have a genetic test at 30, I could have electively had a mastectomy and the-, like Angelina Jolie, and therefore had a much better chance of being alive to see my grandchildren. Now, because we didn’t know, I didn’t know, I have less chance. My daughter’s been able to go and be screened for BRCA1. Fortunately she’s negative. But the ability to be able to be screened gave her power to make decisions, gave her power to make decisions over say her career, when she wanted her children. It gave her choices to have the freedom to now feel actually, because it’s negative, she can actually stop worrying about it. Whereas I think that would have worried her for a long period of time, thinking, “Oh, am I next? Is it going to be me? What do I do?” And now actually she’s been given a negative result and therefore, you know, she can feel that she can go forward and not worry about that quite so much.

And how old is she, is your daughter?

She’s 21.

Okay. And was it offered to her or she asked?

The genetic screening was, we asked if she would like it. Because I was aware that if I was a BRCA1, she had a 50:50 chance. And then we went to the genetics department and it was on offer. So she had to go away and think about it and she decided that she wanted to know.

Rebecca has breast cancer and talks about the benefits of her daughter being able to be screened for the breast cancer gene.

Well, really I see the potential benefits of, of making treatments better in the future, for my children, for my neighbours’ children, for, you know, sort of people I work with. You know, they could turn out and get breast cancer next, next week, next year. And maybe what I can do is help them. And who wouldn’t want to really do that?

But do you think you made the right decision to take part in the genome project?

Oh, absolutely I made, made the right decision. Because there is so much we don’t know, and so much people are finding out sort of in the last few years about genes that cause breast cancer, and what ages they cause them. And then we’re able to screen. For example, I found out I’ve got BRCA1. So I actually have, unbeknownst to me, I have a genetic problem that caused my breast cancer. Now, I have no history, no family history of breast cancer. Cos largely breast cancer occurs in women. And my family, funnily enough, is largely boys. So it didn’t show up. Now, had I been able to have a genetic test at 30, I could have electively had a mastectomy and the-, like Angelina Jolie, and therefore had a much better chance of being alive to see my grandchildren. Now, because we didn’t know, I didn’t know, I have less chance. My daughter’s been able to go and be screened for BRCA1. Fortunately she’s negative. But the ability to be able to be screened gave her power to make decisions, gave her power to make decisions over say her career, when she wanted her children. It gave her choices to have the freedom to, to now feel actually, because it’s negative, she can actually stop worrying about it. Whereas I think that would have worried her for a long period of time, thinking, “Oh, am I next? Is it going to be me? What do I do?” And now actually she’s been given a negative result and therefore, you know, she can feel that she can go forward and not worry about that quite so much.

Rebecca talks about the importance of publicity and gives a suggestion about the best time to be asked.

I think it would have been good to come to it with a, with a prior knowledge of it, rather than being approached at that point. So maybe some posters up, a Facebook campaign, some social media sort of going on and then people might be a bit more aware. Other than that, it’s fine. I think, you know, sort of at the end of the consultation then to have, to be shown about, about that would be fine also. And even at the pre-assessment, you know, that could be a good place where, you know, you could have posters up, you could have leaflets around, you could have people being asked there as well. Because I think then you’ve got the idea, yes, you’ve got the cancer, so you’re not quite as alarmed. You’re going for a consultation on preparing for surgery. So that’s in your mind, you’re having the surgery, you’re preparing for the surgery, and now, “What can be done?” sort of thing. Whereas at the consultation with the consultant, it’s, “Oh, my goodness, it’s positive. I’ve got cancer. Oh, I’m going to have surgery. Oh, my goodness.” You know, that’s what you’re thinking about. You’re not actually thinking, you, you’re not actually thinking about the surgery itself perhaps, you’re thinking about the cancer, you know, whether you’re going to survive, all those things. And that’s very, very alarming. Whereas maybe doing it at a pre-assessment might be a better time, because you’re thinking about the surgery and what happens during the surgery. So you’re talking about, you know, the anaesthetic, you’re talking about what happens after surgery, you’re talking about what happens during surgery. And the nurse is explaining that to you. So maybe that’s the time that they say, “Oh, by the way, and when you’re asleep, you know, maybe, we’ll take the cancer out and maybe what we can do is take that cancer and send it to some researchers.” That would be a very logical place I think to put the consultation.

Rebecca thinks the project and its findings should be better publicised, for example on BBC News and on Cancer Research’s website.

“I’d like it to be more known, and more known what you’re finding out.” So that, you know, I can say, “Oh, I took part in that, and they found out this.” So updates, maybe, maybe you could have more bulletins on the, the BBC News. So, you know, a little snippet of what you’ve found out this year. Or, or put it on the Cancer Research website. That would be a good place to put it. So we can look and sort of see, “Oh, you know, they are doing research. They are finding out these things, and it’s led to this.” Because otherwise we, we think, “Oh, that was just in isolation and they didn’t find anything out.” And actually you could be finding out loads of stuff that’s fed in to other cancer research stuff and they’ve utilised that knowledge to go on to make another drug. But we only see that drug being made. We don’t see the knowledge that had been gained right back when, when we started the genomes.