0:00:05 > 0:00:09Cancer seems like a really... It's such a big, scary thing
0:00:09 > 0:00:11and it's something that you shouldn't have to face
0:00:11 > 0:00:13unless you're a grown-up.
0:00:15 > 0:00:1818-year-old Josie Bellarby knows her body
0:00:18 > 0:00:21could be carrying a deadly gene
0:00:21 > 0:00:25that could increase her chances of breast cancer to 80%.
0:00:25 > 0:00:28This gene killed my great-grandmother,
0:00:28 > 0:00:30killed my mother so young.
0:00:30 > 0:00:33I'm so sad that it could be coming your way.
0:00:33 > 0:00:37There's now a genetic test that can tell you if you carry
0:00:37 > 0:00:38this hereditary gene.
0:00:38 > 0:00:41But at 18, should Josie take it?
0:00:43 > 0:00:46It's a decision. If you go and get the test done,
0:00:46 > 0:00:48you can never take it back.
0:00:48 > 0:00:52So it's just whether or not you want to risk feeling
0:00:52 > 0:00:54like part of your body might kill you.
0:00:54 > 0:00:57It's rotten they're having to front this up now.
0:00:57 > 0:01:00At, you know, quite a young age. Josie's still living at home.
0:01:00 > 0:01:03At 23, Josie's big sister Lucy
0:01:03 > 0:01:06has just decided she is ready.
0:01:07 > 0:01:12I'm going to know in what, two months? I'm going to know.
0:01:14 > 0:01:17But Josie's decision could be changed by her sister's result.
0:01:17 > 0:01:20- Do you want the results straight away?- Yeah.- OK.
0:01:20 > 0:01:22If I don't handle it very well with Lucy,
0:01:22 > 0:01:24how am I going to handle it
0:01:24 > 0:01:26when it's me going through it?
0:01:26 > 0:01:28Josie is an ordinary schoolgirl
0:01:28 > 0:01:31facing an extraordinary dilemma. But when will she be ready
0:01:31 > 0:01:33to face her future?
0:01:49 > 0:01:53At home in York, Josie and her sisters, Lucy and Emma,
0:01:53 > 0:01:55are watching a BBC documentary about their mum.
0:01:55 > 0:01:59She carries the gene and, 14 years ago,
0:01:59 > 0:02:02took the only step available to try and prevent
0:02:02 > 0:02:06cancer developing. Surgery to remove both her breasts.
0:02:06 > 0:02:09Now Josie wants to see what having the gene could lead to.
0:02:09 > 0:02:12For me, it's much too high a risk to live with.
0:02:12 > 0:02:16- But the question is what surgery? - The thing is, you've got it.
0:02:16 > 0:02:19You can't go around with that risk. 90% chance of breast cancer.
0:02:19 > 0:02:22It's better not to have any breasts at all.
0:02:22 > 0:02:24I knew long before I had the test
0:02:24 > 0:02:26that if I had the gene, I would have surgery.
0:02:26 > 0:02:30My instant reaction was just...
0:02:30 > 0:02:32Get rid of them. They can kill me. Get rid of them.
0:02:34 > 0:02:36Look away! Look away.
0:02:40 > 0:02:42If Josie and her sisters carry the faulty gene,
0:02:42 > 0:02:45it rockets their lifetime chances
0:02:45 > 0:02:48of breast cancer to 80%.
0:02:48 > 0:02:51I'll tell you when it's over. Oh, are you all right?
0:02:51 > 0:02:54- Are you all right, girls? - Yeah.
0:02:54 > 0:02:57This bit is quite tricky, because if I take too much,
0:02:57 > 0:02:58the nipple is going to die.
0:02:58 > 0:03:01If I don't take enough, I'm leaving breast tissue.
0:03:01 > 0:03:05Any breast tissue essentially is potentially bad.
0:03:05 > 0:03:07Are you upset as well?
0:03:07 > 0:03:12This was pioneering surgery.
0:03:12 > 0:03:14removing healthy breast tissue
0:03:14 > 0:03:16means cancer does not have a place to develop.
0:03:18 > 0:03:21It is the only way to reduce the cancer risk.
0:03:21 > 0:03:25I so wanted my boobs done. You could tell from the documentary.
0:03:25 > 0:03:28I thought I was going to get cancer any day.
0:03:28 > 0:03:31I'm so sad that this gene
0:03:31 > 0:03:33which killed my great-grandmother,
0:03:33 > 0:03:36came through my grandfather and killed my mother so young,
0:03:36 > 0:03:39I'm so sad that it's... It could be coming your way.
0:03:43 > 0:03:46It's not so much that I'm scared to get the test,
0:03:46 > 0:03:48or I'm scared for the operation.
0:03:52 > 0:03:55It's a decision.
0:03:55 > 0:03:59If you go and get the test done, you can never take it back.
0:03:59 > 0:04:03So it's just whether or not you want to risk feeling like
0:04:03 > 0:04:05part of your body might kill you.
0:04:09 > 0:04:11Josie is still a schoolgirl
0:04:11 > 0:04:14and is hoping to go on to drama college next year.
0:04:14 > 0:04:17But she's not shy about discussing
0:04:17 > 0:04:20her dilemma with classmates.
0:04:20 > 0:04:22It's your body you're using.
0:04:22 > 0:04:25So what if they wanted me to do a topless shoot,
0:04:25 > 0:04:27a topless film or something,
0:04:27 > 0:04:29and I had really bad scars and couldn't get work
0:04:29 > 0:04:31or something like that.
0:04:31 > 0:04:33There's, like, so many different things
0:04:33 > 0:04:36and I want advice on what you guys think.
0:04:36 > 0:04:40I think you should just, like, enjoy your time being young.
0:04:40 > 0:04:44You want to go to uni and enjoy yourself, not worry.
0:04:44 > 0:04:46I never thought about the future.
0:04:46 > 0:04:48The furthest in the future I thought about was, like,
0:04:48 > 0:04:52when is my next audition or when are my exams coming up?
0:04:52 > 0:04:55But is there not more benefit in getting it done early
0:04:55 > 0:04:58- so you know? Can you take action early?- I wouldn't want to know.
0:04:58 > 0:05:02For me, it would be in the back of my mind that this is still a risk.
0:05:02 > 0:05:06I mean, I think overall, I personally would get it,
0:05:06 > 0:05:08but I don't know.
0:05:08 > 0:05:10Like, obviously cancer would take over your life,
0:05:10 > 0:05:14but I know if I knew I had a chance of getting it, I'd be like "Uhh!"
0:05:14 > 0:05:17Yeah and I know it sounds funny, but I've just got my boobs.
0:05:17 > 0:05:21I don't want to think about getting rid of them yet.
0:05:21 > 0:05:24Oh, I couldn't do it. I just wouldn't feel like a girl any more.
0:05:24 > 0:05:26It would be weird.
0:05:26 > 0:05:29I feel like I'm possibly being forced to grow up a bit faster
0:05:29 > 0:05:30because of this thing.
0:05:30 > 0:05:33I think it shocked our family quite a lot
0:05:33 > 0:05:35because we thought, "Oh, you know what?
0:05:35 > 0:05:38"We don't need to think about this." But actually, you do
0:05:38 > 0:05:41and it's happening sooner than what we allocated for.
0:05:41 > 0:05:43It's a bit scary.
0:05:49 > 0:05:53Searching for information about when others have had the test,
0:05:53 > 0:05:56and with help from the Hereditary Breast Cancer Helpline,
0:05:56 > 0:05:59Josie comes across Bethany Hobson.
0:05:59 > 0:06:01At 17, she has already taken it.
0:06:03 > 0:06:06How old were you when you decided to have the gene test?
0:06:06 > 0:06:09- 16.- Wow.
0:06:09 > 0:06:11- That's so young.- It was.
0:06:11 > 0:06:16When I was thinking about having it done,
0:06:16 > 0:06:18I was like...
0:06:18 > 0:06:21I didn't know whether I wanted it or not.
0:06:21 > 0:06:24And half of me was saying,
0:06:24 > 0:06:28"You're dramatising everything. You won't have it.
0:06:28 > 0:06:30"Stop making a huge deal out of it."
0:06:30 > 0:06:32Then half of me was like,
0:06:32 > 0:06:35"You know you've got it. You have got it.
0:06:35 > 0:06:37"You're going to get cancer."
0:06:37 > 0:06:39It was very emotional because it was like,
0:06:39 > 0:06:42I felt like I'd got cancer.
0:06:42 > 0:06:45How did you feel when you opened it and it was positive?
0:06:45 > 0:06:48She said it to my face, so it was like...
0:06:50 > 0:06:53I kind of just shut down and I was sat in the office
0:06:53 > 0:06:55and I was like, "I just want to get out."
0:06:55 > 0:06:58Did you feel that getting the test done at a young age
0:06:58 > 0:07:01- was the right thing for you? - Erm, yeah.
0:07:01 > 0:07:04I think if I had not been tested,
0:07:04 > 0:07:08I don't know how I'd feel.
0:07:08 > 0:07:12If I had not been tested, would I have just completely ignored it
0:07:12 > 0:07:14and never got tested?
0:07:14 > 0:07:17I've got this dilemma of sort of deciding
0:07:17 > 0:07:19when is the right time to get tested.
0:07:19 > 0:07:22I'd feel like a ticking time bomb.
0:07:22 > 0:07:24I kind of feel like my body, as a young person,
0:07:24 > 0:07:27is something that I should be enjoying
0:07:27 > 0:07:29and not something I should be worrying about.
0:07:29 > 0:07:32Do you? How do you...? Do you feel like that or...?
0:07:32 > 0:07:33I am definitely going to have surgery
0:07:33 > 0:07:37to reduce my chances.
0:07:38 > 0:07:39So it will be, er....
0:07:41 > 0:07:44..getting my breasts done and then my ovaries cut out.
0:07:44 > 0:07:46She would never go back in time
0:07:46 > 0:07:50and not get the gene test done when she did.
0:07:50 > 0:07:52But at the same time, she thinks about it so much.
0:07:52 > 0:07:55I think she was quite honest in saying that she did feel
0:07:55 > 0:07:58a bit like a ticking time bomb and I think that is how I would feel.
0:08:02 > 0:08:05While Bethany's coming to terms with carrying the gene,
0:08:05 > 0:08:08back in York, Josie and her friends are enjoying being 18.
0:08:10 > 0:08:12Tonight I'll be going out and having a few drinks.
0:08:12 > 0:08:14There's parallel between me and my friends
0:08:14 > 0:08:18where it's kind of like they can go out and get hammered
0:08:18 > 0:08:20and not think about anything.
0:08:21 > 0:08:23I can do that, but in the back of my head,
0:08:23 > 0:08:25there's still...
0:08:25 > 0:08:28Should I be drinking responsibly?
0:08:28 > 0:08:31Should I be trying to think about the future?
0:08:31 > 0:08:34I mean, is it OK for me to want to be young
0:08:34 > 0:08:35and go out and have fun?
0:08:35 > 0:08:39Or should I be more responsible and be thinking about the future more?
0:08:55 > 0:08:5919-year-old Eli Foster understands Josie's dilemma better than most,
0:08:59 > 0:09:02as her mum also carries the faulty gene.
0:09:02 > 0:09:05She's decided she's too young to get tested.
0:09:05 > 0:09:08So, do you think you'll get the test done eventually or...?
0:09:08 > 0:09:11Yeah. I'll definitely get it done, but not just yet.
0:09:11 > 0:09:15I feel just too young to have that pressure in my mind all the time.
0:09:15 > 0:09:19I like to go out with my friends, have fun, not have to think about something negative.
0:09:19 > 0:09:21I like to think about the positive side
0:09:21 > 0:09:24of seeing everyone and living my life.
0:09:24 > 0:09:27Not negative things that people don't want to think about.
0:09:27 > 0:09:30I know now a lot of people do talk about cancer
0:09:30 > 0:09:33a lot more than they used to. It used to be, "You can't talk about it."
0:09:33 > 0:09:36- The Big C.- Yeah. Like, no-one wants to know about it.
0:09:36 > 0:09:39I think you'd have to grow up a bit, cos you've more to think about.
0:09:39 > 0:09:42Like whether you do want to have surgery,
0:09:42 > 0:09:44whether you want to just forget about it or...
0:09:44 > 0:09:47I think I'd feel I'd have to be more responsible
0:09:47 > 0:09:51and just think about all that kind of thing. What do you think?
0:09:51 > 0:09:54Yeah... I think... When I was little, my mum and dad
0:09:54 > 0:09:55just always were like,
0:09:55 > 0:09:59"You don't need to worry about it until you're grown up."
0:09:59 > 0:10:02And, like, I'm kind of supposed to be grown-up now
0:10:02 > 0:10:04because I'm 18, but I don't feel it.
0:10:04 > 0:10:09I don't know, I feel like it's quite an adult decision
0:10:09 > 0:10:12and quite an adult topic.
0:10:12 > 0:10:16And kind of talking about it with loads of different people
0:10:16 > 0:10:20makes me feel like, if I get the test done now
0:10:20 > 0:10:22and if I find out now,
0:10:22 > 0:10:26then maybe I won't be able to enjoy being young for as long.
0:10:30 > 0:10:34Josie's mum Julia also feels she should just enjoy being 18.
0:10:34 > 0:10:38Josie seems to be undecided. She's the one that I suppose
0:10:38 > 0:10:40I'm most concerned about,
0:10:40 > 0:10:44cos she's expressed some wish to have it done this early.
0:10:44 > 0:10:48But she seems to me, at 18, very young to have it done.
0:10:48 > 0:10:52I wouldn't stop her, but...
0:10:52 > 0:10:54Yeah, I am kind of quite worried about that.
0:10:54 > 0:10:56For Lucy, it's going to be very different.
0:10:56 > 0:10:58I think it will force her to grow up,
0:10:58 > 0:11:01but in her case, I think that's quite a good thing.
0:11:10 > 0:11:13Aged 23, Josie's eldest sister Lucy is taking the test.
0:11:28 > 0:11:30I'm the big sister in a way
0:11:30 > 0:11:33and I've obviously done everything first.
0:11:33 > 0:11:36I guess cos I'm five years older than Josie,
0:11:36 > 0:11:38it does feel like I'm in a different place to her now.
0:11:38 > 0:11:40I'm not ready 100%.
0:11:40 > 0:11:44I don't think I ever would be 100% ready.
0:11:44 > 0:11:46I don't think anyone would be, really.
0:11:46 > 0:11:49But I think I'm at a place where I can cope with it,
0:11:49 > 0:11:53even if I'm not. I don't want to hear it, but I can cope with it.
0:11:56 > 0:11:59Today is stage one of the test process.
0:11:59 > 0:12:02Lucy is attending a genetic counselling session in Leeds,
0:12:02 > 0:12:05taking Mum along for moral support.
0:12:11 > 0:12:14Before anyone is allowed to take the test, they have to be assessed
0:12:14 > 0:12:17to make sure they are ready to handle
0:12:17 > 0:12:20the impact of the result.
0:12:20 > 0:12:24The name of the gene, you've probably heard from your mother, is BRCA1.
0:12:24 > 0:12:28Basically, the BRCA1 stands for breast cancer gene number one.
0:12:28 > 0:12:30- Yeah.- Essentially, all genes are,
0:12:30 > 0:12:34are our bodies' instructions for how we're going to grow and develop.
0:12:34 > 0:12:37And the BRCA1 gene is one such gene that helps protect you
0:12:37 > 0:12:40from breast and ovarian cancer.
0:12:40 > 0:12:42If this gene is working fine,
0:12:42 > 0:12:45then obviously you have some of that protection.
0:12:45 > 0:12:49But if the gene isn't working, then some of that protection is lost.
0:12:49 > 0:12:51- Yeah.- What we normally say
0:12:51 > 0:12:55is that there's somewhere between a 60% and 80%
0:12:55 > 0:12:59lifetime risk of breast cancer for women who carry the gene alteration.
0:12:59 > 0:13:03The ovarian cancer risk is somewhere between
0:13:03 > 0:13:07- 20% and 40%.- Oh, so that's lower than I thought it would be, yeah.
0:13:07 > 0:13:12Well, the population figure, to give you some background, is about 1.5%,
0:13:12 > 0:13:16so obviously it is quite an increased risk.
0:13:16 > 0:13:20The only option for reducing your ovarian cancer risk
0:13:20 > 0:13:24is to have your ovaries removed, which usually is done
0:13:24 > 0:13:26as women get towards the age of 40.
0:13:26 > 0:13:29And having your ovaries removed
0:13:29 > 0:13:33means you can't have children and it does put you into the menopause.
0:13:33 > 0:13:35The timing, I think, is very important
0:13:35 > 0:13:39- because you've got to feel comfortable with these results.- Yeah.
0:13:39 > 0:13:43What I suppose we're trying to talk through is whether you feel
0:13:43 > 0:13:46that the uncertainty at the moment
0:13:46 > 0:13:51is going to be better or worse than actually knowing.
0:13:51 > 0:13:53- How'd it go, sweetheart? - It was really good.
0:13:53 > 0:13:56- Are you all right? - Yeah, it was interesting.
0:13:56 > 0:13:59It just makes me sad, because it's all becoming kind of real now.
0:13:59 > 0:14:03You know, this thing that I dreaded when I went through it myself,
0:14:03 > 0:14:05that you'd all face it.
0:14:05 > 0:14:07And here it is, it's actually happening.
0:14:07 > 0:14:11- I thought you'd feel worse than me. - I feel really quite emotional today.
0:14:11 > 0:14:14I feel sad that it's...
0:14:14 > 0:14:15That it's actually...
0:14:15 > 0:14:18It's happening and you're having to think about things
0:14:18 > 0:14:22like mastectomies and ovaries removed and all that kind of stuff.
0:14:22 > 0:14:26It just feels horrid that you have to think about it at all, really.
0:14:26 > 0:14:28But I'd already planned this. I knew that I wanted
0:14:28 > 0:14:31to get the test. I'd been thinking of it for years,
0:14:31 > 0:14:33- so it's not...- Do you think it'll be a relief?
0:14:33 > 0:14:37- Actually, almost to know one way or another?- Yeah, yeah, I do.
0:14:52 > 0:14:55Later that day, Josie is keen to find out
0:14:55 > 0:14:59what starting the process was like for her older sister.
0:14:59 > 0:15:01- Hiya!- Hello!
0:15:01 > 0:15:04- We've same outfit on! - I know! We're matching.
0:15:04 > 0:15:05You all right?
0:15:05 > 0:15:07We've actually got the exact same outfit on!
0:15:07 > 0:15:10- So how did it go today? - It was really good.
0:15:10 > 0:15:13The way she explained it to me
0:15:13 > 0:15:16was that the gene is like a spelling mistake.
0:15:16 > 0:15:18She said it's like your body's trying to read
0:15:18 > 0:15:22and then it hits a spelling mistake and it can't understand it.
0:15:22 > 0:15:25One thing that she said was that cancer is faster-growing.
0:15:25 > 0:15:29What does that mean? Oh, it's like a harsher type than normal.
0:15:29 > 0:15:33It's not so much that it's harsher, it just grows faster than the normal cancer.
0:15:33 > 0:15:38We didn't really speak about surgery that much and stuff like that, she spoke about it a little bit.
0:15:38 > 0:15:43It was more, like, how do you think you'll react emotionally, do you think that you're mature enough
0:15:43 > 0:15:47and do you think that you'll cope with the test results and stuff like that.
0:15:47 > 0:15:50- And do you think you are? - Yeah, I think so.
0:15:50 > 0:15:54- Has it made you, like, scared?- No.
0:15:54 > 0:15:57It sounds like it's made you more prepared?
0:15:57 > 0:16:01Yeah, it's all the stuff I wanted to know, she answered.
0:16:05 > 0:16:10Josie's other sister Emma is at dance school in Munich.
0:16:10 > 0:16:14She also decided to start the test process when she was 17.
0:16:23 > 0:16:25I decided to get,
0:16:25 > 0:16:29or start the process for getting tested as a kind of, a practicality.
0:16:29 > 0:16:35Dancers have such a short career and a bit of me wanted to know, well,
0:16:35 > 0:16:40if I do have this thing coming up in my future, it'd be good to know so that I can plan.
0:16:44 > 0:16:48With Emma back home on holiday, Josie wants to find out about
0:16:48 > 0:16:51her sister's experience going for the test.
0:16:51 > 0:16:54Went to Leeds and I had the gene counselling session...
0:16:54 > 0:16:56Did you have the blood withdrawn?
0:16:56 > 0:17:01No, I did, I, like, spoke to the woman and stuff and I went to go and have the blood withdrawn.
0:17:01 > 0:17:05- So she said that you were allowed? - Yeah, yeah. - You were in the right state of mind.
0:17:05 > 0:17:07Cos I didn't realise it was that order.
0:17:07 > 0:17:14I thought that you had the blood test, then they decided if you were ready to hear what the result was.
0:17:14 > 0:17:15No, I don't think it's...
0:17:15 > 0:17:19I don't think that they do it lightly, I think they...
0:17:19 > 0:17:21cos it's a big thing, a big bombshell, isn't it?
0:17:21 > 0:17:24- Well, it could be a bombshell. - Depends how you take it.
0:17:24 > 0:17:30Yeah, but then I just decided that I wasn't old enough to deal with whatever the answer was,
0:17:30 > 0:17:33whether it was a good answer or a bad answer.
0:17:33 > 0:17:37Maybe we're just reading into it so much and over-analysing it all
0:17:37 > 0:17:40cos maybe we're women and that's what women do. It's a fact,
0:17:40 > 0:17:43and it's just something that you have to live with in life.
0:17:43 > 0:17:47Emma decided not to take the genetic test.
0:17:47 > 0:17:52She felt she was just too young, an opinion that all the family share now about Josie.
0:17:52 > 0:17:54Yeah, I'm five whole years older than Josie.
0:17:54 > 0:17:58Josie would say I was very immature at 18.
0:17:58 > 0:18:00You're more immature than I am now!
0:18:00 > 0:18:05- That she was more mature than me, etc.- You are a very sophisticated young lady!
0:18:05 > 0:18:10But at 18 I was having fun, like I was just being silly and getting drunk with my friends.
0:18:10 > 0:18:14There is a big difference, isn't there, five years, between 18-23?
0:18:14 > 0:18:1523 is still pretty young.
0:18:15 > 0:18:18I have friends with children, that are married,
0:18:18 > 0:18:22I have friends with houses, friends with proper jobs, friends with degrees.
0:18:22 > 0:18:26- But you're still not that grown up! - No, I'm not, but I have a house and I'm doing a degree
0:18:26 > 0:18:29and I live on my own and I'm in a completely different place to Josie.
0:18:29 > 0:18:33But then I would kind of disagree, because I think the person
0:18:33 > 0:18:37that you were at 18 is completely different to who I am at 18.
0:18:37 > 0:18:39I know, but I still think you need the time to have,
0:18:39 > 0:18:42to just be a teenager for as long as you can.
0:18:42 > 0:18:46I always thought this was something that we would do together.
0:18:46 > 0:18:50- All of us together.- I never thought that.- I always thought that.
0:18:50 > 0:18:54The chances of three girls possibly carrying a test
0:18:54 > 0:18:56and for then none of them to have it seems illogical.
0:18:56 > 0:19:01It's almost like, it's like Russian Roulette, so if, if, if Lucy and Emma don't have it,
0:19:01 > 0:19:04then you might think, "Oh, God, it's bound to be me."
0:19:04 > 0:19:09I am going to know in, what, two months? I'm going to know.
0:19:14 > 0:19:18For each individual, there is a 50/50 chance of carrying the gene,
0:19:18 > 0:19:23so for Josie and her sisters, getting the same result is unlikely.
0:19:23 > 0:19:27Josie's mum is also one of three sisters.
0:19:29 > 0:19:34Aunty Rosie is Josie's godmother, and they share a close connection.
0:19:35 > 0:19:41When you look at the statistical odds of how many of us statistically are going to get it,
0:19:41 > 0:19:42it's bloody horrible.
0:19:42 > 0:19:46How many women in our family going back over hundreds of years has this affected?
0:19:46 > 0:19:49We don't know, and sometimes I think, you know,
0:19:49 > 0:19:52it is such a lottery which ones of you are going to be affected.
0:19:55 > 0:20:00When Rosie's test results came in, she discovered she had lost out.
0:20:00 > 0:20:01She did carry the faulty gene.
0:20:03 > 0:20:05Josie! Josie, look!
0:20:05 > 0:20:09She started her family immediately, had four girls,
0:20:09 > 0:20:13then had her both her breasts and ovaries removed.
0:20:13 > 0:20:17I think I was more worried about not being able to having babies than getting cancer.
0:20:17 > 0:20:21I had a mad few years, you know. I was either pregnant,
0:20:21 > 0:20:25or had a newborn baby, then pregnant, newborn baby...
0:20:25 > 0:20:29Boobs done, hysterectomy done. It was a bit full-on crazy.
0:20:29 > 0:20:33Scarlet, she's the age that I was when my mum died.
0:20:33 > 0:20:36She's just a little girl, and it's so poignant to me
0:20:36 > 0:20:40because I'm just about the age that my mum was
0:20:40 > 0:20:43and if I hadn't have had the mastectomy,
0:20:43 > 0:20:46I would've had breast cancer.
0:20:46 > 0:20:49And I could very well be on my deathbed now,
0:20:49 > 0:20:52leaving my four girls without a mum.
0:20:52 > 0:20:54What is a gene? What does that mean, a gene?
0:20:54 > 0:20:57Is it something you inherit from your parents?
0:20:57 > 0:21:01No, a gene is where it passes down to everybody.
0:21:01 > 0:21:04Yeah. Like, you have various genes, like you all have blue eyes,
0:21:04 > 0:21:06cos you inherited them, they're in your genes
0:21:06 > 0:21:10- because you got them from me and Daddy.- A blue eye gene.
0:21:10 > 0:21:14Did Granny die because she didn't have an operation?
0:21:14 > 0:21:16Yeah.
0:21:16 > 0:21:20When your Mummy's mum, your grandma, had breast cancer,
0:21:20 > 0:21:23it wasn't available for her to have the test.
0:21:23 > 0:21:25They didn't know about the gene back then.
0:21:25 > 0:21:29So she didn't know that she had the gene cos it hadn't really been discovered at that stage
0:21:29 > 0:21:34so she got breast cancer, and unfortunately, really sadly, she died.
0:21:35 > 0:21:41Josie's aunties and mum were part of the first generation to be tested for BRCA.
0:21:41 > 0:21:43Josie has come to the Yorkshire regional DNA lab
0:21:43 > 0:21:48to find out how her family's BRCA1 mutation is identified.
0:21:50 > 0:21:53So this is, these white bands here are the DNA themselves.
0:21:53 > 0:21:55So these across here are the genes themselves?
0:21:55 > 0:21:58- This is a specific region within the BRCA1 gene.- OK.
0:21:58 > 0:22:01And that specific region is the region where the mutation
0:22:01 > 0:22:04- that's been identified in your family is.- Right, OK.
0:22:04 > 0:22:08- So, once we get the sequence from this specific region here... - Yeah.
0:22:08 > 0:22:11..we'll be able to identify whether the mutation is present.
0:22:11 > 0:22:16I did this for GCSE biology, and I just really struggle.
0:22:16 > 0:22:18It's ironic this was the one bit.
0:22:18 > 0:22:21- This is the picture I had in GCSE! - Oh, right, there you go!
0:22:21 > 0:22:23So this is one particular chromosome,
0:22:23 > 0:22:25and the DNA forms part of the chromosome,
0:22:25 > 0:22:27and the chemical bases that make up DNA
0:22:27 > 0:22:31are shown here so we have the A and the T, the G and the C.
0:22:31 > 0:22:35I can show some results that we had from your mother,
0:22:35 > 0:22:37who was tested before,
0:22:37 > 0:22:40and what we're looking at here on the screen,
0:22:40 > 0:22:44the sequence that we expect to see is shown here at the top,
0:22:44 > 0:22:46and then we have the patient sample below,
0:22:46 > 0:22:49and what we're looking for is a change from that sequence.
0:22:49 > 0:22:51So as we go along, you can see that it matches,
0:22:51 > 0:22:56and then once we reach this particular position here,
0:22:56 > 0:23:00we see the sequences are laying on top of each other,
0:23:00 > 0:23:05and the reason why that occurs is because the mutation that's been identified in your family
0:23:05 > 0:23:10is a deletion of these five bases here.
0:23:10 > 0:23:17That's just absolutely crazy, that something so small can just matter that much.
0:23:17 > 0:23:20It's really weird, so weird.
0:23:31 > 0:23:36Emma Webster also recognises how such a small fault can have massive consequences.
0:23:36 > 0:23:40She has tested positive for the faulty BRCA2 gene
0:23:40 > 0:23:43and is now on a mission to document others affected by it.
0:23:45 > 0:23:47I was quite young when my mum passed away.
0:23:47 > 0:23:50I had to grow up a bit quicker than everybody else.
0:23:50 > 0:23:53This was back in the '90s and it wasn't as developed.
0:23:53 > 0:23:57No-one really knew so much, especially about genes and BRCA.
0:23:57 > 0:24:00It was all very early.
0:24:00 > 0:24:03They thought that she was ill because she had ME,
0:24:03 > 0:24:05they didn't think it was cos of the breast cancer.
0:24:05 > 0:24:08The hospital put her on lots of morphine, drugged her up
0:24:08 > 0:24:10cos she was in a lot of pain.
0:24:10 > 0:24:12The doctor said she'd got a week.
0:24:12 > 0:24:15The reason why was cos it had spread into her bones.
0:24:15 > 0:24:18So they gave her a week. She died five days later.
0:24:18 > 0:24:20- Oh, my God. - That's so horrible.
0:24:20 > 0:24:24So that's why I think, if you test positive,
0:24:24 > 0:24:27you feel like you have a timeline, like a deadline sort of thing,
0:24:27 > 0:24:29of when you need to start acting.
0:24:29 > 0:24:32Would you want to have a family before you have a hysterectomy?
0:24:32 > 0:24:36This is what I was thinking about as well, because I'm 21, I can't have babies!
0:24:36 > 0:24:39They're scary little things.
0:24:39 > 0:24:43I don't even know when I'd want to have children.
0:24:43 > 0:24:46I have a lot of things I need to do and I need to be more responsible.
0:24:46 > 0:24:49And I'm so selfish, not like bad selfish.
0:24:49 > 0:24:53- I know exactly what you mean. - I want to go to Topshop and spend like 50 quid on a dress
0:24:53 > 0:24:56and that's, like, so many nappies.
0:24:56 > 0:24:58It's not right.
0:24:58 > 0:25:03It's not realistic, but these are the unrealistic things that we have to think about.
0:25:09 > 0:25:14But having the gene has also had an impact on other relationships in Emma's life.
0:25:18 > 0:25:23You can get some guys and I think, you know, you don't have to say like, "Hi, I'm Emma,
0:25:23 > 0:25:27I'm BRCA2, nice to meet you, what course you are on at Uni?"
0:25:27 > 0:25:29You don't have to do that.
0:25:29 > 0:25:34I went out with this guy quite recently and his reaction...
0:25:34 > 0:25:38I'm not going to name him, but his reaction to it was quite...
0:25:38 > 0:25:42He wasn't there, he couldn't cope with it,
0:25:42 > 0:25:45which was why I was saying about being emotionally mature,
0:25:45 > 0:25:48you get some people who want to ask you questions
0:25:48 > 0:25:51and some people that can't get their head around it.
0:25:51 > 0:25:54He said he didn't want to be with someone that could potentially die before him,
0:25:54 > 0:25:58and I never really thought... It's horrible. A horrible thing for him to say.
0:25:58 > 0:26:03But you know, fair enough, if that's how you feel, see you later! Have a great life!
0:26:12 > 0:26:17Josie's been going out her with her boyfriend Gav for over a year.
0:26:17 > 0:26:20For Valentine's Day, they're having a romantic weekend in Paris.
0:26:31 > 0:26:36'When I see him, I still get butterflies and I still get really excited to meet up with him,'
0:26:36 > 0:26:39and I can't sleep the night before cos I'm really nervous
0:26:39 > 0:26:42and I always do my hair really nice when I'm about to see him,
0:26:42 > 0:26:45so he only ever sees me now when I look quite nice!
0:26:49 > 0:26:55But the choice to take the test is now part of her relationship with her boyfriend.
0:26:55 > 0:26:59She mentioned about getting the test or when's the right time to do it,
0:26:59 > 0:27:02and I've always just said, really, whenever you feel ready,
0:27:02 > 0:27:05because it's a big thing that's gonna come of it
0:27:05 > 0:27:08and, as you say, it can go in two different ways completely.
0:27:08 > 0:27:11I don't think you can really understand the choice
0:27:11 > 0:27:14that you'll have to make, or anyone else for that matter,
0:27:14 > 0:27:17unless you're in that position yourself, and obviously I'm not,
0:27:17 > 0:27:20but it's just a really important thing to know and find out.
0:27:20 > 0:27:22Only do it when you're ready, though.
0:27:25 > 0:27:27While Josie's loved up in Paris,
0:27:27 > 0:27:31back in York, Lucy is taking some time out to enjoy a night on the town.
0:27:31 > 0:27:37But with the test day fast approaching, she's having to think about her future.
0:27:37 > 0:27:40I've been single for quite a long time now.
0:27:40 > 0:27:43I've had my on-and-off things, but, I don't know,
0:27:43 > 0:27:46not a big serious thing for quite a while.
0:27:46 > 0:27:51I like musicians and that kind of thing. Actors, poets.
0:27:51 > 0:27:53Boys that look malnourished.
0:27:53 > 0:27:56Just exactly what my mum and dad would like.
0:27:56 > 0:27:58I do feel a bit left out sometimes with Josie,
0:27:58 > 0:28:01cos Josie's always had a boyfriend for ages.
0:28:01 > 0:28:03It would be nice to have someone to kind of...
0:28:03 > 0:28:06..bring to family things and stuff like that,
0:28:06 > 0:28:09so I wasn't always the one without a boyfriend at the family thing.
0:28:09 > 0:28:11But maybe tonight?!
0:28:25 > 0:28:28'I've always based what I think my life's going to be like
0:28:28 > 0:28:30'on the fact that I probably have the gene.
0:28:30 > 0:28:33'So if I don't have it, I'll be able to take a really deep breath
0:28:33 > 0:28:37'and just be like, I don't have to panic, there's no time limit.
0:28:37 > 0:28:40'I can just sit back and do what I want for a little bit.'
0:28:44 > 0:28:46# I bet that you look good on the dancefloor
0:28:46 > 0:28:49# I don't know if you're looking for romance or
0:28:49 > 0:28:53# I don't know what you're looking for... #
0:28:56 > 0:29:00The sisters' other aunty, Caroline, also lives in France,
0:29:00 > 0:29:04so during their trip Josie takes some time out to discover
0:29:04 > 0:29:08what happened when Caroline and her sisters got their test results.
0:29:08 > 0:29:11- Chin!- Chin!
0:29:13 > 0:29:16I don't think we've ever spoken about the gene test really.
0:29:16 > 0:29:19I was thinking about it earlier today,
0:29:19 > 0:29:21and of course it's the next generation
0:29:21 > 0:29:24that it's now come to the front, because you lot are all adults.
0:29:24 > 0:29:27Me and my sisters are so close now.
0:29:27 > 0:29:29It scares me sometimes,
0:29:29 > 0:29:33the results of the test may make us either drift,
0:29:33 > 0:29:36make two drift apart or two come close or...
0:29:36 > 0:29:39- It may affect that bond.- Which is, I suppose, what did happen.
0:29:39 > 0:29:43When I heard that I hadn't got it I somehow sort of...
0:29:43 > 0:29:46..got out of the loop and didn't join in so much with everybody
0:29:46 > 0:29:50because I didn't think people wanted to talk to me about it
0:29:50 > 0:29:52cos it's different if you haven't got it.
0:29:52 > 0:29:55Although it's a blessing that you don't have it, you feel pushed out?
0:29:55 > 0:29:57- You sort of drop off the end of the line.- Yeah.
0:29:57 > 0:29:59And people aren't interested in you.
0:29:59 > 0:30:03And then what happens if you and Lucy get different results?
0:30:04 > 0:30:07I think that would be really hard.
0:30:07 > 0:30:11- But it's really weird when one sister has it and one sister doesn't have it.- Yeah.
0:30:22 > 0:30:24Today is the day of the test.
0:30:24 > 0:30:27And as Lucy gets a step closer to knowing,
0:30:27 > 0:30:30Josie is also going through her own test
0:30:30 > 0:30:33with an audition at Birmingham School of Acting.
0:30:34 > 0:30:37I think my first auditions, I was so nervous.
0:30:37 > 0:30:41I remember my first one, in the morning, I just felt so sick, I couldn't even eat.
0:30:41 > 0:30:43It was horrible.
0:30:43 > 0:30:47Emotionally, I've already got there, but this is actually the science,
0:30:47 > 0:30:51it's going to be done, they'll take the blood and then they'll have it and that'll be that.
0:30:51 > 0:30:52So, it will be real.
0:30:52 > 0:30:55I think this is my fourth or fifth one.
0:30:55 > 0:30:57Still nervous, you need a bit of nerves,
0:30:57 > 0:31:00but I feel a lot more confident than on my first one,
0:31:00 > 0:31:02so we'll just see how it goes.
0:31:02 > 0:31:05I know it's 50/50, but I think you have to prepare yourself for the worst
0:31:05 > 0:31:07or else it'd be a really big shock.
0:31:20 > 0:31:22Hi, I'm here to see Dr Adellard.
0:31:22 > 0:31:23This is Josie.
0:31:23 > 0:31:25Hello, Josie, lovely to see you.
0:31:25 > 0:31:28Lucy, hi, pleased to meet you. Who's with you?
0:31:28 > 0:31:31- My mum and dad, Julia and Jules. - Hi, pleased to meet you. Hi.
0:31:31 > 0:31:33I pray you, tarry.
0:31:33 > 0:31:37Pause a day or two, before you hazard,
0:31:37 > 0:31:39for in choosing wrong, I lose your company.
0:31:39 > 0:31:42It's obviously an important part of your life
0:31:42 > 0:31:45because you've grown up with this issue for a long time,
0:31:45 > 0:31:49and you're going to get the answer one way or another by the test.
0:31:49 > 0:31:52I would detain you here some month or two.
0:31:52 > 0:31:54I could teach you how to choose right.
0:31:54 > 0:31:58When you get people coming to get tested, are they generally my sort of age or older?
0:31:58 > 0:32:00A variety.
0:32:00 > 0:32:03Different people find different points of their life when they think,
0:32:03 > 0:32:07this is the time to be tested, so some people get tested around your age.
0:32:07 > 0:32:11You have to go through the journey that you've had to go through to learn all about it.
0:32:11 > 0:32:16- I wouldn't have been able to understand it any younger. - You need to have all the information.
0:32:16 > 0:32:19- But we might get a nice surprise. - Yeah.
0:32:19 > 0:32:21There's always that to bear in mind, it's 50/50.
0:32:21 > 0:32:24It's straight down the middle, isn't it, 50/50?
0:32:24 > 0:32:26You seem almost cheerful, it's amazing.
0:32:26 > 0:32:31Honestly, I'm almost excited because I've been waiting for years, I just want to know.
0:32:31 > 0:32:34I just want to take my blood and go and do it.
0:32:54 > 0:32:56You seem almost a bit high on it, in a way.
0:32:56 > 0:32:59I'm just excited. Like I told the doctor, I'm almost excited.
0:32:59 > 0:33:00What's that about?
0:33:00 > 0:33:03- It's wanting to get it out of the way.- Finding out.
0:33:03 > 0:33:07It's been years, and I've been waiting years for this.
0:33:07 > 0:33:09Also, I'm excited that it might...
0:33:09 > 0:33:11I'm thinking that it probably is positive,
0:33:11 > 0:33:15but there's a chance that it isn't positive, and I can forget the entire thing.
0:33:15 > 0:33:19Don't get high on that, that's what I did with your mum. I was convinced she was going to be...
0:33:19 > 0:33:22But I'm convinced I'm going to have it, but if I do have it
0:33:22 > 0:33:25that will mean that I can know and I can start to plan,
0:33:25 > 0:33:29and I don't have to worry cos I will know the details
0:33:29 > 0:33:32and I won't have to have the unknown and that's what I don't like.
0:33:32 > 0:33:35I'm just warning sometimes, you know, the news is not good.
0:33:35 > 0:33:38I'm fully preparing myself that I'm going to have it,
0:33:38 > 0:33:41that's what I think the result is going to be, 100%.
0:33:41 > 0:33:45But that is, I would, I don't even...
0:33:45 > 0:33:47I don't know how to put it.
0:33:47 > 0:33:50Even if that is the result, I'm still going to be happy to just know.
0:34:05 > 0:34:10While Lucy is coping well with the idea of a positive test result,
0:34:10 > 0:34:16the stark reality of having the faulty gene is major surgery to remove both breasts.
0:34:16 > 0:34:20Michelle Gracey has the BRCA1 mutation.
0:34:20 > 0:34:23She's seen her mum fight breast cancer twice,
0:34:23 > 0:34:27but, despite this, would rather risk cancer than get rid of her breasts.
0:34:30 > 0:34:35I did choose in 2007 to have a full hysterectomy and my ovaries removed.
0:34:35 > 0:34:40- Oh, really?- Yeah, because I was scared of that risk.
0:34:40 > 0:34:42- The ovarian cancer risk?- Yeah.
0:34:42 > 0:34:45Have you thought about having the mastectomy?
0:34:45 > 0:34:47I've thought about it.
0:34:47 > 0:34:49It's something I have thought about,
0:34:49 > 0:34:54and when I went to the hospital with my mum when she got diagnosed,
0:34:54 > 0:34:58the consultant who gave her the results advised me,
0:34:58 > 0:35:00because he knows I've got the gene as well,
0:35:00 > 0:35:02to have a double mastectomy.
0:35:02 > 0:35:07For me, personally, it's not something I want to do.
0:35:07 > 0:35:11Breasts are so visual, and they're not just,
0:35:11 > 0:35:14it's not just like an organ in your body,
0:35:14 > 0:35:17they've got so many different connotations with them,
0:35:17 > 0:35:19like sexual connotations,
0:35:19 > 0:35:24and I think for a woman to get rid of them is a really big deal,
0:35:24 > 0:35:29and I think it's something that is not right for everyone.
0:35:29 > 0:35:31I think some people wonder,
0:35:31 > 0:35:34if breast cancer's going to affect me personally,
0:35:34 > 0:35:40- then why am I keeping hold of these breasts that could...- I have to say, that did cross my mind.
0:35:40 > 0:35:43Yeah, that could cause me great illness.
0:35:43 > 0:35:47There's are a few reasons. One is I'm scared.
0:35:47 > 0:35:50- Of the surgery? - Of the surgery and the recovery.
0:35:50 > 0:35:53- And what they might look like? - Yeah.
0:35:53 > 0:35:59There's so many options to choose from as to what surgery you choose to have,
0:35:59 > 0:36:02what kind of reconstruction especially you choose to have,
0:36:02 > 0:36:06that I just don't think I could get my head around that.
0:36:14 > 0:36:18- Hi! Oh, you look lovely! - How are you?
0:36:18 > 0:36:22Tonight, Josie is off to a charity ball for hereditary breast cancer.
0:36:22 > 0:36:25She's been reunited with photographer Emma Webster for the night,
0:36:25 > 0:36:30who's interested to hear how Lucy's test process is affecting Josie.
0:36:30 > 0:36:34I'm quite worried, really, for the test day.
0:36:34 > 0:36:36For her, or for everyone?
0:36:36 > 0:36:39For everyone, because it's going to make, especially me and Emma,
0:36:39 > 0:36:42it's going to open our eyes up to how ready we are for it.
0:36:42 > 0:36:46And it's gonna make it real for everyone.
0:37:19 > 0:37:23The ball is in aid of the Hereditary Breast Cancer Helpline,
0:37:23 > 0:37:25run by mother and daughter team Wendy and Becky.
0:37:26 > 0:37:29Both have had preventative surgery,
0:37:29 > 0:37:32which is the only way to ensure a reduced cancer risk.
0:37:32 > 0:37:37Just in a dress now, I asked you about your reconstructive...
0:37:37 > 0:37:39I asked her, I said, well, what type of surgery did you have?
0:37:39 > 0:37:41And you went, "I haven't had any!"
0:37:41 > 0:37:46I think the whole thing has changed so much because I was,
0:37:46 > 0:37:49I think, the first, they certainly had to invent the operation.
0:37:49 > 0:37:51It wasn't on offer,
0:37:51 > 0:37:54and the whole medical profession were totally against me doing this
0:37:54 > 0:37:59so I couldn't make any demands on having reconstruction or what things might look like.
0:37:59 > 0:38:04Now, there is a big focus on actually having the surgery and making a nice job of it,
0:38:04 > 0:38:08and, you know, making women feel good about themselves again,
0:38:08 > 0:38:13so they can go to the swimming baths and so on, and be undressed,
0:38:13 > 0:38:16and like Becky here, you know, still with a nice cleavage.
0:38:16 > 0:38:19I had this image that I'd go in for the surgery,
0:38:19 > 0:38:23I'd come out and probably look like I'd been run over by a train and all this,
0:38:23 > 0:38:25and I'd got used to that in my head.
0:38:25 > 0:38:28And I went through this whole psychological thing of,
0:38:28 > 0:38:34who am I? What am I? I am something if I don't have breasts.
0:38:34 > 0:38:38So you can imagine the kind of person I was
0:38:38 > 0:38:43when I woke up from surgery having built this whole inner confidence and everything else,
0:38:43 > 0:38:48and then woke up to find two amazing boobs at the same time.
0:38:48 > 0:38:50I was up there!
0:38:50 > 0:38:54Even the hospital porters had to have a look.
0:38:54 > 0:38:57- She showed them off to everybody! - Everybody, everybody!
0:38:57 > 0:39:01Anybody, "Just have a look, just have a look at these!" She was pulling it!
0:39:10 > 0:39:16The ball is also attended by the surgeon who operated on Josie's mum 14 years before,
0:39:16 > 0:39:18Andrew Baildam.
0:39:20 > 0:39:25When your mum came to see me, she was very sure what she wanted,
0:39:25 > 0:39:30but it was very much a pioneering time and she was just as much
0:39:30 > 0:39:34a pioneer undergoing it, as we were doing it as a team.
0:39:34 > 0:39:39I have to say I actually found the whole idea of doing this surgery quite difficult.
0:39:39 > 0:39:43I was used to curing people, doing surgery to try and restore them.
0:39:43 > 0:39:46But the idea of doing surgery before they had actually got the disease
0:39:46 > 0:39:48seemed to be just not right.
0:39:48 > 0:39:54I'd always be asked, "How can you possibly justify doing this to women who've got normal breasts?"
0:39:54 > 0:39:58I'd say, "If you've got a BRCA1 gene mutation, it's in every single cell.
0:39:58 > 0:40:02"That is NOT a woman who has got normal breasts."
0:40:02 > 0:40:09And we never pretended that doing the surgery would reduce the risk to nothing,
0:40:09 > 0:40:15but we knew that if it went from 85 down to 8% risk,
0:40:15 > 0:40:20that would mean for every 100 women we operated on,
0:40:20 > 0:40:26there would be nearly 80 who didn't get cancer, who otherwise would have done.
0:40:26 > 0:40:30I don't think I ever realised how much it is a big operation.
0:40:30 > 0:40:33She was in hospital for a whole week afterwards and...
0:40:33 > 0:40:35Well, that's changed.
0:40:35 > 0:40:38- Has it?- That's changed. We usually send people out in 48 hours now.
0:40:38 > 0:40:41She said that she was in hospital for a whole week
0:40:41 > 0:40:45and when my dad was driving her home, he'd go over speed bumps and she'd have tears
0:40:45 > 0:40:49streaming down her face because it was so painful.
0:40:49 > 0:40:55Now we're up to about 300 women and we know, statistically,
0:40:55 > 0:41:01scientifically proven, it does stop women from getting breast cancer
0:41:01 > 0:41:04in the time frame, so far, that we have been looking.
0:41:09 > 0:41:12Although there have been huge improvements in surgery,
0:41:12 > 0:41:15it's still a daunting prospect for someone in their teens.
0:41:18 > 0:41:20Hannah Fitzpatrick faced this fear
0:41:20 > 0:41:25when she had a double mastectomy and breast reconstruction at only 19.
0:41:25 > 0:41:28How old were you when you had it done?
0:41:28 > 0:41:32I was 18 when I had the gene test. I was 19 when I had my operation.
0:41:32 > 0:41:36Obviously, some people get quite worried about the test.
0:41:36 > 0:41:38But I wasn't worried about the test.
0:41:38 > 0:41:41I was more worried about the consequences after the test.
0:41:41 > 0:41:44What made you decide to have it done so young?
0:41:44 > 0:41:48I think it was mainly because I had an aunty who was terminally ill,
0:41:48 > 0:41:52and then all of a sudden, I had another aunty who got breast cancer,
0:41:52 > 0:41:55and two cousins who were at the age of 21.
0:41:55 > 0:41:56They got cancer at 21?
0:41:56 > 0:41:58Yeah, they got breast cancer at 21,
0:41:58 > 0:42:00which is very rare, for someone so young.
0:42:00 > 0:42:05They obviously had the gene as well, which made me think that,
0:42:05 > 0:42:10"I'm nearly that age anyway," so basically, I had to get it done, really.
0:42:10 > 0:42:14It's difficult, cos you've got no role model or anyone your age.
0:42:14 > 0:42:19Exactly. When I went for my surgery, the only pictures
0:42:19 > 0:42:22they could show me were of older women who had had breast cancer,
0:42:22 > 0:42:25who were maybe in their mid-50s,
0:42:25 > 0:42:31so sometimes the pictures didn't really reflect what my breasts were going to look like afterwards.
0:42:31 > 0:42:33That must have been scary.
0:42:33 > 0:42:34Yeah, a little bit, yeah.
0:42:34 > 0:42:37They took all the breast tissue,
0:42:37 > 0:42:41and put an implant in and covered it with back muscle.
0:42:41 > 0:42:43Which...
0:42:43 > 0:42:45doesn't really leave any scars on the front.
0:42:45 > 0:42:50I've got one under my arm, which is barely noticeable now,
0:42:50 > 0:42:53because it's kind of healed with the crease of the armpit,
0:42:53 > 0:42:56and a scar on my back, but we're talking...
0:42:56 > 0:43:00This operation was two years ago, and they're healing really well.
0:43:00 > 0:43:03Did you have tattoos or did you have... How does it work?
0:43:03 > 0:43:05It's basically...
0:43:05 > 0:43:09You're left with a scar where the nipple used to be.
0:43:09 > 0:43:12- A circular scar? - Yeah, like a plain circle.
0:43:12 > 0:43:16And they create the nipple by kind of lifting pieces from each...
0:43:16 > 0:43:20It's like a triangle and they lift the pieces together to form, like,
0:43:20 > 0:43:24the bobble, and once you've healed there, you have them tattooed.
0:43:24 > 0:43:26They look fantastic.
0:43:26 > 0:43:28It scares me if I had the operation,
0:43:28 > 0:43:33that I'd look down and be like... someone had taken an axe to me.
0:43:33 > 0:43:36I've got these images of, like, horrific boobs,
0:43:36 > 0:43:42scars everywhere and men seeing it and being like, "What is that?"
0:43:42 > 0:43:45Yeah, I had a few of them, but luckily,
0:43:45 > 0:43:48when I actually saw what they looked like, I wasn't bothered at all.
0:43:48 > 0:43:49That's so good.
0:44:02 > 0:44:05With Lucy's test results still a few weeks away,
0:44:05 > 0:44:09Mum and Dad have returned to the beach where the family were filmed.
0:44:10 > 0:44:1314 years ago, the girls were very young,
0:44:13 > 0:44:15and their gene testing seemed a long way away.
0:44:20 > 0:44:24A long time has passed, hasn't it, since we were here?
0:44:24 > 0:44:2814 years and a bit, and they were so little.
0:44:28 > 0:44:31We looked at those little girls running around on the beach
0:44:31 > 0:44:34and said, "Oh, how awful for them."
0:44:34 > 0:44:38But actually, for Lucy, she's going through pretty much what I did.
0:44:42 > 0:44:46I lost my mum to cancer. I could not bear to lose a daughter to cancer.
0:44:46 > 0:44:47I mean, I just...
0:44:47 > 0:44:51That just doesn't feel like something I could cope with at all.
0:44:54 > 0:44:58We were all looking at three little girls playing on the beach,
0:44:58 > 0:45:02hoping that, you know, medical science will have moved to sort it,
0:45:02 > 0:45:04and it hasn't.
0:45:08 > 0:45:13They shouldn't have to be thinking of things like breast cancer at their age.
0:45:22 > 0:45:26But despite there being no cure for BRCA, science is improving.
0:45:26 > 0:45:31Professor Gareth Evans is at the forefront of this development.
0:45:31 > 0:45:33Josie, you're 18, is that right?
0:45:33 > 0:45:37What we can do now is we can pump in all your data,
0:45:37 > 0:45:42what your family history is, and we can come up with a risk graph
0:45:42 > 0:45:45of what your risks are through the years.
0:45:45 > 0:45:49Your risk, importantly, in the next ten years is very small -
0:45:49 > 0:45:51you've got about 1.9%.
0:45:51 > 0:45:54You can be relatively relaxed until your late 20s.
0:45:54 > 0:45:56So it really starts to rise?
0:45:56 > 0:45:58At about 28.
0:45:58 > 0:46:02Yeah, so if you could change it to me actually, on this graph,
0:46:02 > 0:46:05actually having the gene.
0:46:05 > 0:46:07Obviously, the risks are going to go way up
0:46:07 > 0:46:10because it's calculating you have the gene.
0:46:10 > 0:46:12So this is 100% likelihood of having the gene
0:46:12 > 0:46:16and your lifetime risk is now 83%.
0:46:16 > 0:46:17It really does...
0:46:17 > 0:46:21There's such a difference between that population risk and...
0:46:21 > 0:46:24And the population risk is 10%, one in ten.
0:46:24 > 0:46:27- That's not a very nice graph. - No, it's not a nice graph.
0:46:27 > 0:46:32Can you explain more about the new drugs that are coming out?
0:46:32 > 0:46:35At the moment, we are actually starting...
0:46:35 > 0:46:37In our clinic here at the Genesis Prevention Centre,
0:46:37 > 0:46:42we are starting to actually treat people with tamoxifen.
0:46:42 > 0:46:44That's an old drug - that's nothing new -
0:46:44 > 0:46:48but what's new is that this is being offered as a preventative.
0:46:48 > 0:46:52- OK.- Tamoxifen has been shown, with five years' treatment,
0:46:52 > 0:46:54to reduce the risk by 40%.
0:46:54 > 0:46:56That's before... Like, pre-cancer?
0:46:56 > 0:46:59That's before you get the cancer.
0:46:59 > 0:47:04What we're looking at is actually using the mammograms to tell us who's getting a response.
0:47:04 > 0:47:11What's currently being used in trials is a group of drugs called PARP inhibitors.
0:47:11 > 0:47:17A PARP inhibitor is a drug that specifically targets cells
0:47:17 > 0:47:20which have lost the BRCA1 gene.
0:47:20 > 0:47:25- We can actually kill the cells before they become cancerous.- OK.
0:47:25 > 0:47:27Now, if the drugs work perfectly,
0:47:27 > 0:47:30it will normalize your risk of getting breast cancer,
0:47:30 > 0:47:37because it will it will effectively take away the BRCA1-related risk that you have.
0:47:47 > 0:47:51Tomorrow is the day Lucy discovers the results of her gene test
0:47:51 > 0:47:55and for Josie, the reality of her sister's result -
0:47:55 > 0:47:58whether positive or negative - is really hitting home.
0:48:00 > 0:48:04I'm nervous for Lucy, to get it done, to get the results.
0:48:04 > 0:48:07I'm nervous for her but I'm also nervous
0:48:07 > 0:48:10for how the rest of our family is going to react.
0:48:10 > 0:48:14I can totally understand why she's so worried.
0:48:14 > 0:48:16I'm worried as well.
0:48:16 > 0:48:18It's a big thing, cos it's like my life's going to swing
0:48:18 > 0:48:21in one direction or the other.
0:48:21 > 0:48:25If I don't have it, I'll be able to change my life plans so much.
0:48:25 > 0:48:29If I do have it, I'll have to think about so much stuff,
0:48:29 > 0:48:31so it is quite massive, really.
0:48:31 > 0:48:36If it's negative, erm... I don't know...
0:48:36 > 0:48:40Irrationally, I think it might make me feel I've got more of a chance.
0:48:40 > 0:48:44I'm feeling quite relaxed about it and, I don't know...
0:48:44 > 0:48:48I'm feeling quite calm, thankfully. I'm not freaking out too much.
0:48:48 > 0:48:51If I don't handle it very well with Lucy, how will I handle it
0:48:51 > 0:48:54when it's actually me that's going through it?
0:48:54 > 0:48:57So, it'll be an eye-opener for me.
0:49:10 > 0:49:12The results day has arrived.
0:49:12 > 0:49:16What's even harder for the family is that it's Julia's birthday.
0:49:16 > 0:49:19- Are you all right? Are you?- Yeah.
0:49:19 > 0:49:21- Did you sleep all right?- Yeah.
0:49:21 > 0:49:23- I had an hour's sleep.- Nice.
0:49:23 > 0:49:25On the bathroom floor!
0:49:25 > 0:49:27Nice! Why the bathroom floor?
0:49:27 > 0:49:29Cos I was cowering by the toilet.
0:49:29 > 0:49:31Oh, darling.
0:49:31 > 0:49:36It's still difficult to know that the whole future of your life...
0:49:36 > 0:49:40A woman who's driving in her car, to come here, knows it
0:49:40 > 0:49:45and yet we don't. So it's... It's hard, isn't it?
0:49:45 > 0:49:46How are you today?
0:49:47 > 0:49:49Nauseous.
0:49:50 > 0:49:52- Hi!- How are you? >
0:49:56 > 0:49:58She's here!
0:49:58 > 0:49:59Hello.
0:49:59 > 0:50:00Hi, Judith.
0:50:00 > 0:50:02Hi, I'm Judith.
0:50:02 > 0:50:04You didn't meet Jules, did you?
0:50:04 > 0:50:05Nice to meet you.
0:50:05 > 0:50:06Nice to see you again.
0:50:08 > 0:50:11We're all a bit... Tenterhooks, like, a bit nervous, really...
0:50:11 > 0:50:14- Do you want me to give you the results straight away?- Yeah.
0:50:14 > 0:50:18- OK. I'm afraid it's not the result we were hoping for.- OK.
0:50:18 > 0:50:20You do carry the gene alteration.
0:50:20 > 0:50:22OK.
0:50:24 > 0:50:27- It's up to you, what you want... - It's what I was expecting, so...
0:50:27 > 0:50:28Oh, sweetheart.
0:50:28 > 0:50:32I'm all right. It was what I was expecting. 50-50, isn't it?
0:50:56 > 0:50:59I love you so much. We'll be all right.
0:51:04 > 0:51:05I'm just sorry.
0:51:05 > 0:51:08There is as much support as you like, as well.
0:51:08 > 0:51:10Thank you, I really appreciate it. Thank you.
0:51:15 > 0:51:20I knew it was going to be that, but just hearing it is really hard.
0:51:20 > 0:51:23It's still horrible, isn't it?
0:51:23 > 0:51:26I really just wanted it to go the other way.
0:51:26 > 0:51:29I'm so sorry I've passed you this.
0:51:29 > 0:51:33Breaks my heart, really, to think...that this came from me,
0:51:33 > 0:51:35so I'm so sorry.
0:51:41 > 0:51:43It feels like a curse, you know?
0:51:45 > 0:51:47Everything is so good, except for this.
0:51:58 > 0:51:59- Not good, sorry.- Aww!
0:52:09 > 0:52:11- Are you all right?- Yeah.
0:52:11 > 0:52:13All this week I've just thought,
0:52:13 > 0:52:17"I know she's got it so why is anyone not considering it?"
0:52:17 > 0:52:21Then last night I was like, "Maybe she hasn't got it."
0:52:21 > 0:52:23- Are you all right?- Yeah.
0:52:30 > 0:52:34- Oh, it's bloody real now, isn't it?! - Have you said "happy birthday"?
0:52:34 > 0:52:37- I texted you. - Yes, you did, thank you!
0:52:37 > 0:52:39It's not my happiest birthday.
0:52:47 > 0:52:51With a positive test result, Lucy now has an 80% chance
0:52:51 > 0:52:54of developing breast cancer in the future.
0:53:03 > 0:53:06Josie's come to meet her sister Emma in Munich
0:53:06 > 0:53:09to see how she feels about the test now Lucy's had her result.
0:53:12 > 0:53:15- How is Lucy? How's she doing? - Er, I think she's all right.
0:53:15 > 0:53:18She did... She's just quite good at that kind of thing.
0:53:18 > 0:53:20She was so grown-up and brave about it
0:53:20 > 0:53:24and it's really made me feel like she's my big sister
0:53:24 > 0:53:27and I'm proud of her, and I want to be like her.
0:53:27 > 0:53:33It's so hard to watch her, but also so hard, knowing that is coming to us,
0:53:33 > 0:53:37She's just set such... It sounds shit, but she's just set such a good example.
0:53:37 > 0:53:40Lucy's test results. On the day, I was just sat there
0:53:40 > 0:53:43and I was like, "I need to know now. I can't wait any longer."
0:53:43 > 0:53:45Pandora's box or whatever has been opened
0:53:45 > 0:53:48and I need to know what mine is. I need to know it for me.
0:53:48 > 0:53:51Bam! Lucy gets her results, and I'm like, "I need the test now."
0:53:51 > 0:53:56But yeah, but that is... That's not the reasons to do this.
0:53:56 > 0:54:00- I know. It's not. - The reasons to do this is because you feel like you can cope with it.
0:54:00 > 0:54:02You've got to do it for the right reasons.
0:54:02 > 0:54:06In everyone's lives they will have moments that they look back on
0:54:06 > 0:54:09and go, "That's when I knew I was grown up.
0:54:09 > 0:54:12"That's when I was definitely not a child any more."
0:54:12 > 0:54:15When we make the decision to get the gene test,
0:54:15 > 0:54:19that will be such a defining moment of our life.
0:54:19 > 0:54:21It doesn't matter if I'm ready or not,
0:54:21 > 0:54:24now I'm going to have to be more grown up.
0:54:24 > 0:54:28Sometimes I feel like our whole medical history
0:54:28 > 0:54:31is like a story book because when it all happened, we were little.
0:54:31 > 0:54:35- The veil's been lifted. - Is that making you want to have the test done?
0:54:35 > 0:54:37I think...it's...like...
0:54:37 > 0:54:40I feel like it is my time to do this now.
0:54:45 > 0:54:48She's really slowed down and thought about it,
0:54:48 > 0:54:50- and has just made me realise that's what- I- need to do.
0:54:50 > 0:54:53I need to think about it for myself.
0:55:05 > 0:55:09I have been given so much different information recently
0:55:09 > 0:55:13and I thought it would be quite helpful to sit down
0:55:13 > 0:55:18and write it all down, and bullet-point the pros and cons of it all,
0:55:18 > 0:55:21so I can actually formulate in my head a bit.
0:55:21 > 0:55:24Cons - worrying about my health all the time.
0:55:24 > 0:55:26I would hate to be paranoid.
0:55:26 > 0:55:29Not being able to enjoy my youth,
0:55:29 > 0:55:35and then resentment for having to feel older and grow up faster
0:55:35 > 0:55:38than the rest of my friends and the rest of the people my age.
0:55:38 > 0:55:43And then the pros - I would have all the information,
0:55:43 > 0:55:47being aware of health issues, being aware of my body,
0:55:47 > 0:55:53being able to prepare and effectively map out my life a bit more.
0:55:53 > 0:55:56I've got a strong support network around me.
0:55:56 > 0:56:00A better understanding of how it feels,
0:56:00 > 0:56:04so I could support Luce, support her better, and be there for her.
0:56:05 > 0:56:10At the start of all of this, I felt I wasn't ready.
0:56:10 > 0:56:13I didn't actually know that much about BRCA.
0:56:13 > 0:56:16I look back on it now, and I thought I knew it all,
0:56:16 > 0:56:19and realistically, I knew nothing.
0:56:20 > 0:56:25Having met everyone and learnt so much,
0:56:25 > 0:56:33I feel that as Lucy has had it done, and Emma's getting it done soon,
0:56:33 > 0:56:39I think I will, in the next year or so, get the test done.
0:56:44 > 0:56:51If it's not a good result and I have BRCA, then I'll cope with it
0:56:51 > 0:56:56because you just do - you suck it up, get the news, and deal with it.
0:56:57 > 0:57:00It doesn't need to be something that rules my life.
0:57:00 > 0:57:03It doesn't need to be something that I think about every day.
0:57:03 > 0:57:05I could still be me.
0:57:05 > 0:57:09I can still have a laugh and enjoy being young,
0:57:09 > 0:57:13but just be a little bit more responsible, and just be a little bit more aware.
0:57:13 > 0:57:15It wouldn't stop me from being who I am,
0:57:15 > 0:57:19because I don't think that anything can stop me.
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0:57:50 > 0:57:53E-mail subtitling@bbc.co.uk