Josie: My Cancer Curse

Cancer seems like a really... It's such a big, scary thing

and it's something that you shouldn't have to face

unless you're a grown-up.

18-year-old Josie Bellarby knows her body

could be carrying a deadly gene

that could increase her chances of breast cancer to 80%.

This gene killed my great-grandmother,

killed my mother so young.

I'm so sad that it could be coming your way.

There's now a genetic test that can tell you if you carry

this hereditary gene.

But at 18, should Josie take it?

It's a decision. If you go and get the test done,

you can never take it back.

So it's just whether or not you want to risk feeling

like part of your body might kill you.

It's rotten they're having to front this up now.

At, you know, quite a young age. Josie's still living at home.

At 23, Josie's big sister Lucy

has just decided she is ready.

I'm going to know in what, two months? I'm going to know.

But Josie's decision could be changed by her sister's result.

-Do you want the results straight away?

-Yeah.

-OK.

If I don't handle it very well with Lucy,

how am I going to handle it

when it's me going through it?

Josie is an ordinary schoolgirl

facing an extraordinary dilemma. But when will she be ready

to face her future?

At home in York, Josie and her sisters, Lucy and Emma,

are watching a BBC documentary about their mum.

She carries the gene and, 14 years ago,

took the only step available to try and prevent

cancer developing. Surgery to remove both her breasts.

Now Josie wants to see what having the gene could lead to.

For me, it's much too high a risk to live with.

-But the question is what surgery?

-The thing is, you've got it.

You can't go around with that risk. 90% chance of breast cancer.

It's better not to have any breasts at all.

I knew long before I had the test

that if I had the gene, I would have surgery.

My instant reaction was just...

Get rid of them. They can kill me. Get rid of them.

Look away! Look away.

If Josie and her sisters carry the faulty gene,

it rockets their lifetime chances

of breast cancer to 80%.

I'll tell you when it's over. Oh, are you all right?

-Are you all right, girls?

-Yeah.

This bit is quite tricky, because if I take too much,

the nipple is going to die.

If I don't take enough, I'm leaving breast tissue.

Any breast tissue essentially is potentially bad.

Are you upset as well?

This was pioneering surgery.

removing healthy breast tissue

means cancer does not have a place to develop.

It is the only way to reduce the cancer risk.

I so wanted my boobs done. You could tell from the documentary.

I thought I was going to get cancer any day.

I'm so sad that this gene

which killed my great-grandmother,

came through my grandfather and killed my mother so young,

I'm so sad that it's... It could be coming your way.

It's not so much that I'm scared to get the test,

or I'm scared for the operation.

It's a decision.

If you go and get the test done, you can never take it back.

So it's just whether or not you want to risk feeling like

part of your body might kill you.

Josie is still a schoolgirl

and is hoping to go on to drama college next year.

But she's not shy about discussing

her dilemma with classmates.

It's your body you're using.

So what if they wanted me to do a topless shoot,

a topless film or something,

and I had really bad scars and couldn't get work

or something like that.

There's, like, so many different things

and I want advice on what you guys think.

I think you should just, like, enjoy your time being young.

You want to go to uni and enjoy yourself, not worry.

I never thought about the future.

The furthest in the future I thought about was, like,

when is my next audition or when are my exams coming up?

But is there not more benefit in getting it done early

-so you know? Can you take action early?

-I wouldn't want to know.

For me, it would be in the back of my mind that this is still a risk.

I mean, I think overall, I personally would get it,

but I don't know.

Like, obviously cancer would take over your life,

but I know if I knew I had a chance of getting it, I'd be like "Uhh!"

Yeah and I know it sounds funny, but I've just got my boobs.

I don't want to think about getting rid of them yet.

Oh, I couldn't do it. I just wouldn't feel like a girl any more.

It would be weird.

I feel like I'm possibly being forced to grow up a bit faster

because of this thing.

I think it shocked our family quite a lot

because we thought, "Oh, you know what?

"We don't need to think about this." But actually, you do

and it's happening sooner than what we allocated for.

It's a bit scary.

Searching for information about when others have had the test,

and with help from the Hereditary Breast Cancer Helpline,

Josie comes across Bethany Hobson.

At 17, she has already taken it.

How old were you when you decided to have the gene test?

-16.

-Wow.

-That's so young.

-It was.

When I was thinking about having it done,

I was like...

I didn't know whether I wanted it or not.

And half of me was saying,

"You're dramatising everything. You won't have it.

"Stop making a huge deal out of it."

Then half of me was like,

"You know you've got it. You have got it.

"You're going to get cancer."

It was very emotional because it was like,

I felt like I'd got cancer.

How did you feel when you opened it and it was positive?

She said it to my face, so it was like...

I kind of just shut down and I was sat in the office

and I was like, "I just want to get out."

Did you feel that getting the test done at a young age

-was the right thing for you?

-Erm, yeah.

I think if I had not been tested,

I don't know how I'd feel.

If I had not been tested, would I have just completely ignored it

and never got tested?

I've got this dilemma of sort of deciding

when is the right time to get tested.

I'd feel like a ticking time bomb.

I kind of feel like my body, as a young person,

is something that I should be enjoying

and not something I should be worrying about.

Do you? How do you...? Do you feel like that or...?

I am definitely going to have surgery

to reduce my chances.

So it will be, er....

..getting my breasts done and then my ovaries cut out.

She would never go back in time

and not get the gene test done when she did.

But at the same time, she thinks about it so much.

I think she was quite honest in saying that she did feel

a bit like a ticking time bomb and I think that is how I would feel.

While Bethany's coming to terms with carrying the gene,

back in York, Josie and her friends are enjoying being 18.

Tonight I'll be going out and having a few drinks.

There's parallel between me and my friends

where it's kind of like they can go out and get hammered

and not think about anything.

I can do that, but in the back of my head,

there's still...

Should I be drinking responsibly?

Should I be trying to think about the future?

I mean, is it OK for me to want to be young

and go out and have fun?

Or should I be more responsible and be thinking about the future more?

19-year-old Eli Foster understands Josie's dilemma better than most,

as her mum also carries the faulty gene.

She's decided she's too young to get tested.

So, do you think you'll get the test done eventually or...?

Yeah. I'll definitely get it done, but not just yet.

I feel just too young to have that pressure in my mind all the time.

I like to go out with my friends, have fun, not have to think about something negative.

I like to think about the positive side

of seeing everyone and living my life.

Not negative things that people don't want to think about.

I know now a lot of people do talk about cancer

a lot more than they used to. It used to be, "You can't talk about it."

-The Big C.

-Yeah. Like, no-one wants to know about it.

I think you'd have to grow up a bit, cos you've more to think about.

Like whether you do want to have surgery,

whether you want to just forget about it or...

I think I'd feel I'd have to be more responsible

and just think about all that kind of thing. What do you think?

Yeah... I think... When I was little, my mum and dad

just always were like,

"You don't need to worry about it until you're grown up."

And, like, I'm kind of supposed to be grown-up now

because I'm 18, but I don't feel it.

I don't know, I feel like it's quite an adult decision

and quite an adult topic.

And kind of talking about it with loads of different people

makes me feel like, if I get the test done now

and if I find out now,

then maybe I won't be able to enjoy being young for as long.

Josie's mum Julia also feels she should just enjoy being 18.

Josie seems to be undecided. She's the one that I suppose

I'm most concerned about,

cos she's expressed some wish to have it done this early.

But she seems to me, at 18, very young to have it done.

I wouldn't stop her, but...

Yeah, I am kind of quite worried about that.

For Lucy, it's going to be very different.

I think it will force her to grow up,

but in her case, I think that's quite a good thing.

Aged 23, Josie's eldest sister Lucy is taking the test.

I'm the big sister in a way

and I've obviously done everything first.

I guess cos I'm five years older than Josie,

it does feel like I'm in a different place to her now.

I'm not ready 100%.

I don't think I ever would be 100% ready.

I don't think anyone would be, really.

But I think I'm at a place where I can cope with it,

even if I'm not. I don't want to hear it, but I can cope with it.

Today is stage one of the test process.

Lucy is attending a genetic counselling session in Leeds,

taking Mum along for moral support.

Before anyone is allowed to take the test, they have to be assessed

to make sure they are ready to handle

the impact of the result.

The name of the gene, you've probably heard from your mother, is BRCA1.

Basically, the BRCA1 stands for breast cancer gene number one.

-Yeah.

-Essentially, all genes are,

are our bodies' instructions for how we're going to grow and develop.

And the BRCA1 gene is one such gene that helps protect you

from breast and ovarian cancer.

If this gene is working fine,

then obviously you have some of that protection.

But if the gene isn't working, then some of that protection is lost.

-Yeah.

-What we normally say

is that there's somewhere between a 60% and 80%

lifetime risk of breast cancer for women who carry the gene alteration.

The ovarian cancer risk is somewhere between

-20% and 40%.

-Oh, so that's lower than I thought it would be, yeah.

Well, the population figure, to give you some background, is about 1.5%,

so obviously it is quite an increased risk.

The only option for reducing your ovarian cancer risk

is to have your ovaries removed, which usually is done

as women get towards the age of 40.

And having your ovaries removed

means you can't have children and it does put you into the menopause.

The timing, I think, is very important

-because you've got to feel comfortable with these results.

-Yeah.

What I suppose we're trying to talk through is whether you feel

that the uncertainty at the moment

is going to be better or worse than actually knowing.

-How'd it go, sweetheart?

-It was really good.

-Are you all right?

-Yeah, it was interesting.

It just makes me sad, because it's all becoming kind of real now.

You know, this thing that I dreaded when I went through it myself,

that you'd all face it.

And here it is, it's actually happening.

-I thought you'd feel worse than me.

-I feel really quite emotional today.

I feel sad that it's...

That it's actually...

It's happening and you're having to think about things

like mastectomies and ovaries removed and all that kind of stuff.

It just feels horrid that you have to think about it at all, really.

But I'd already planned this. I knew that I wanted

to get the test. I'd been thinking of it for years,

-so it's not...

-Do you think it'll be a relief?

-Actually, almost to know one way or another?

-Yeah, yeah, I do.

Later that day, Josie is keen to find out

what starting the process was like for her older sister.

-Hiya!

-Hello!

-We've same outfit on!

-I know! We're matching.

You all right?

We've actually got the exact same outfit on!

-So how did it go today?

-It was really good.

The way she explained it to me

was that the gene is like a spelling mistake.

She said it's like your body's trying to read

and then it hits a spelling mistake and it can't understand it.

One thing that she said was that cancer is faster-growing.

What does that mean? Oh, it's like a harsher type than normal.

It's not so much that it's harsher, it just grows faster than the normal cancer.

We didn't really speak about surgery that much and stuff like that, she spoke about it a little bit.

It was more, like, how do you think you'll react emotionally, do you think that you're mature enough

and do you think that you'll cope with the test results and stuff like that.

-And do you think you are?

-Yeah, I think so.

-Has it made you, like, scared?

-No.

It sounds like it's made you more prepared?

Yeah, it's all the stuff I wanted to know, she answered.

Josie's other sister Emma is at dance school in Munich.

She also decided to start the test process when she was 17.

I decided to get,

or start the process for getting tested as a kind of, a practicality.

Dancers have such a short career and a bit of me wanted to know, well,

if I do have this thing coming up in my future, it'd be good to know so that I can plan.

With Emma back home on holiday, Josie wants to find out about

her sister's experience going for the test.

Went to Leeds and I had the gene counselling session...

Did you have the blood withdrawn?

No, I did, I, like, spoke to the woman and stuff and I went to go and have the blood withdrawn.

-So she said that you were allowed?

-Yeah, yeah.

-You were in the right state of mind.

Cos I didn't realise it was that order.

I thought that you had the blood test, then they decided if you were ready to hear what the result was.

No, I don't think it's...

I don't think that they do it lightly, I think they...

cos it's a big thing, a big bombshell, isn't it?

-Well, it could be a bombshell.

-Depends how you take it.

Yeah, but then I just decided that I wasn't old enough to deal with whatever the answer was,

whether it was a good answer or a bad answer.

Maybe we're just reading into it so much and over-analysing it all

cos maybe we're women and that's what women do. It's a fact,

and it's just something that you have to live with in life.

Emma decided not to take the genetic test.

She felt she was just too young, an opinion that all the family share now about Josie.

Yeah, I'm five whole years older than Josie.

Josie would say I was very immature at 18.

You're more immature than I am now!

-That she was more mature than me, etc.

-You are a very sophisticated young lady!

But at 18 I was having fun, like I was just being silly and getting drunk with my friends.

There is a big difference, isn't there, five years, between 18-23?

23 is still pretty young.

I have friends with children, that are married,

I have friends with houses, friends with proper jobs, friends with degrees.

-But you're still not that grown up!

-No, I'm not, but I have a house and I'm doing a degree

and I live on my own and I'm in a completely different place to Josie.

But then I would kind of disagree, because I think the person

that you were at 18 is completely different to who I am at 18.

I know, but I still think you need the time to have,

to just be a teenager for as long as you can.

I always thought this was something that we would do together.

-All of us together.

-I never thought that.

-I always thought that.

The chances of three girls possibly carrying a test

and for then none of them to have it seems illogical.

It's almost like, it's like Russian Roulette, so if, if, if Lucy and Emma don't have it,

then you might think, "Oh, God, it's bound to be me."

I am going to know in, what, two months? I'm going to know.

For each individual, there is a 50/50 chance of carrying the gene,

so for Josie and her sisters, getting the same result is unlikely.

Josie's mum is also one of three sisters.

Aunty Rosie is Josie's godmother, and they share a close connection.

When you look at the statistical odds of how many of us statistically are going to get it,

it's bloody horrible.

How many women in our family going back over hundreds of years has this affected?

We don't know, and sometimes I think, you know,

it is such a lottery which ones of you are going to be affected.

When Rosie's test results came in, she discovered she had lost out.

She did carry the faulty gene.

Josie! Josie, look!

She started her family immediately, had four girls,

then had her both her breasts and ovaries removed.

I think I was more worried about not being able to having babies than getting cancer.

I had a mad few years, you know. I was either pregnant,

or had a newborn baby, then pregnant, newborn baby...

Boobs done, hysterectomy done. It was a bit full-on crazy.

Scarlet, she's the age that I was when my mum died.

She's just a little girl, and it's so poignant to me

because I'm just about the age that my mum was

and if I hadn't have had the mastectomy,

I would've had breast cancer.

And I could very well be on my deathbed now,

leaving my four girls without a mum.

What is a gene? What does that mean, a gene?

Is it something you inherit from your parents?

No, a gene is where it passes down to everybody.

Yeah. Like, you have various genes, like you all have blue eyes,

cos you inherited them, they're in your genes

-because you got them from me and Daddy.

-A blue eye gene.

Did Granny die because she didn't have an operation?

Yeah.

When your Mummy's mum, your grandma, had breast cancer,

it wasn't available for her to have the test.

They didn't know about the gene back then.

So she didn't know that she had the gene cos it hadn't really been discovered at that stage

so she got breast cancer, and unfortunately, really sadly, she died.

Josie's aunties and mum were part of the first generation to be tested for BRCA.

Josie has come to the Yorkshire regional DNA lab

to find out how her family's BRCA1 mutation is identified.

So this is, these white bands here are the DNA themselves.

So these across here are the genes themselves?

-This is a specific region within the BRCA1 gene.

-OK.

And that specific region is the region where the mutation

-that's been identified in your family is.

-Right, OK.

-So, once we get the sequence from this specific region here...

-Yeah.

..we'll be able to identify whether the mutation is present.

I did this for GCSE biology, and I just really struggle.

It's ironic this was the one bit.

-This is the picture I had in GCSE!

-Oh, right, there you go!

So this is one particular chromosome,

and the DNA forms part of the chromosome,

and the chemical bases that make up DNA

are shown here so we have the A and the T, the G and the C.

I can show some results that we had from your mother,

who was tested before,

and what we're looking at here on the screen,

the sequence that we expect to see is shown here at the top,

and then we have the patient sample below,

and what we're looking for is a change from that sequence.

So as we go along, you can see that it matches,

and then once we reach this particular position here,

we see the sequences are laying on top of each other,

and the reason why that occurs is because the mutation that's been identified in your family

is a deletion of these five bases here.

That's just absolutely crazy, that something so small can just matter that much.

It's really weird, so weird.

Emma Webster also recognises how such a small fault can have massive consequences.

She has tested positive for the faulty BRCA2 gene

and is now on a mission to document others affected by it.

I was quite young when my mum passed away.

I had to grow up a bit quicker than everybody else.

This was back in the '90s and it wasn't as developed.

No-one really knew so much, especially about genes and BRCA.

It was all very early.

They thought that she was ill because she had ME,

they didn't think it was cos of the breast cancer.

The hospital put her on lots of morphine, drugged her up

cos she was in a lot of pain.

The doctor said she'd got a week.

The reason why was cos it had spread into her bones.

So they gave her a week. She died five days later.

-Oh, my God.

-That's so horrible.

So that's why I think, if you test positive,

you feel like you have a timeline, like a deadline sort of thing,

of when you need to start acting.

Would you want to have a family before you have a hysterectomy?

This is what I was thinking about as well, because I'm 21, I can't have babies!

They're scary little things.

I don't even know when I'd want to have children.

I have a lot of things I need to do and I need to be more responsible.

And I'm so selfish, not like bad selfish.

-I know exactly what you mean.

-I want to go to Topshop and spend like 50 quid on a dress

and that's, like, so many nappies.

It's not right.

It's not realistic, but these are the unrealistic things that we have to think about.

But having the gene has also had an impact on other relationships in Emma's life.

You can get some guys and I think, you know, you don't have to say like, "Hi, I'm Emma,

I'm BRCA2, nice to meet you, what course you are on at Uni?"

You don't have to do that.

I went out with this guy quite recently and his reaction...

I'm not going to name him, but his reaction to it was quite...

He wasn't there, he couldn't cope with it,

which was why I was saying about being emotionally mature,

you get some people who want to ask you questions

and some people that can't get their head around it.

He said he didn't want to be with someone that could potentially die before him,

and I never really thought... It's horrible. A horrible thing for him to say.

But you know, fair enough, if that's how you feel, see you later! Have a great life!

Josie's been going out her with her boyfriend Gav for over a year.

For Valentine's Day, they're having a romantic weekend in Paris.

'When I see him, I still get butterflies and I still get really excited to meet up with him,'

and I can't sleep the night before cos I'm really nervous

and I always do my hair really nice when I'm about to see him,

so he only ever sees me now when I look quite nice!

But the choice to take the test is now part of her relationship with her boyfriend.

She mentioned about getting the test or when's the right time to do it,

and I've always just said, really, whenever you feel ready,

because it's a big thing that's gonna come of it

and, as you say, it can go in two different ways completely.

I don't think you can really understand the choice

that you'll have to make, or anyone else for that matter,

unless you're in that position yourself, and obviously I'm not,

but it's just a really important thing to know and find out.

Only do it when you're ready, though.

While Josie's loved up in Paris,

back in York, Lucy is taking some time out to enjoy a night on the town.

But with the test day fast approaching, she's having to think about her future.

I've been single for quite a long time now.

I've had my on-and-off things, but, I don't know,

not a big serious thing for quite a while.

I like musicians and that kind of thing. Actors, poets.

Boys that look malnourished.

Just exactly what my mum and dad would like.

I do feel a bit left out sometimes with Josie,

cos Josie's always had a boyfriend for ages.

It would be nice to have someone to kind of...

..bring to family things and stuff like that,

so I wasn't always the one without a boyfriend at the family thing.

But maybe tonight?!

'I've always based what I think my life's going to be like

'on the fact that I probably have the gene.

'So if I don't have it, I'll be able to take a really deep breath

'and just be like, I don't have to panic, there's no time limit.

'I can just sit back and do what I want for a little bit.'

# I bet that you look good on the dancefloor

# I don't know if you're looking for romance or

# I don't know what you're looking for... #

The sisters' other aunty, Caroline, also lives in France,

so during their trip Josie takes some time out to discover

what happened when Caroline and her sisters got their test results.

-Chin!

-Chin!

I don't think we've ever spoken about the gene test really.

I was thinking about it earlier today,

and of course it's the next generation

that it's now come to the front, because you lot are all adults.

Me and my sisters are so close now.

It scares me sometimes,

the results of the test may make us either drift,

make two drift apart or two come close or...

-It may affect that bond.

-Which is, I suppose, what did happen.

When I heard that I hadn't got it I somehow sort of...

..got out of the loop and didn't join in so much with everybody

because I didn't think people wanted to talk to me about it

cos it's different if you haven't got it.

Although it's a blessing that you don't have it, you feel pushed out?

-You sort of drop off the end of the line.

-Yeah.

And people aren't interested in you.

And then what happens if you and Lucy get different results?

I think that would be really hard.

-But it's really weird when one sister has it and one sister doesn't have it.

-Yeah.

Today is the day of the test.

And as Lucy gets a step closer to knowing,

Josie is also going through her own test

with an audition at Birmingham School of Acting.

I think my first auditions, I was so nervous.

I remember my first one, in the morning, I just felt so sick, I couldn't even eat.

It was horrible.

Emotionally, I've already got there, but this is actually the science,

it's going to be done, they'll take the blood and then they'll have it and that'll be that.

So, it will be real.

I think this is my fourth or fifth one.

Still nervous, you need a bit of nerves,

but I feel a lot more confident than on my first one,

so we'll just see how it goes.

I know it's 50/50, but I think you have to prepare yourself for the worst

or else it'd be a really big shock.

Hi, I'm here to see Dr Adellard.

This is Josie.

Hello, Josie, lovely to see you.

Lucy, hi, pleased to meet you. Who's with you?

-My mum and dad, Julia and Jules.

-Hi, pleased to meet you. Hi.

I pray you, tarry.

Pause a day or two, before you hazard,

for in choosing wrong, I lose your company.

It's obviously an important part of your life

because you've grown up with this issue for a long time,

and you're going to get the answer one way or another by the test.

I would detain you here some month or two.

I could teach you how to choose right.

When you get people coming to get tested, are they generally my sort of age or older?

A variety.

Different people find different points of their life when they think,

this is the time to be tested, so some people get tested around your age.

You have to go through the journey that you've had to go through to learn all about it.

-I wouldn't have been able to understand it any younger.

-You need to have all the information.

-But we might get a nice surprise.

-Yeah.

There's always that to bear in mind, it's 50/50.

It's straight down the middle, isn't it, 50/50?

You seem almost cheerful, it's amazing.

Honestly, I'm almost excited because I've been waiting for years, I just want to know.

I just want to take my blood and go and do it.

You seem almost a bit high on it, in a way.

I'm just excited. Like I told the doctor, I'm almost excited.

What's that about?

-It's wanting to get it out of the way.

-Finding out.

It's been years, and I've been waiting years for this.

Also, I'm excited that it might...

I'm thinking that it probably is positive,

but there's a chance that it isn't positive, and I can forget the entire thing.

Don't get high on that, that's what I did with your mum. I was convinced she was going to be...

But I'm convinced I'm going to have it, but if I do have it

that will mean that I can know and I can start to plan,

and I don't have to worry cos I will know the details

and I won't have to have the unknown and that's what I don't like.

I'm just warning sometimes, you know, the news is not good.

I'm fully preparing myself that I'm going to have it,

that's what I think the result is going to be, 100%.

But that is, I would, I don't even...

I don't know how to put it.

Even if that is the result, I'm still going to be happy to just know.

While Lucy is coping well with the idea of a positive test result,

the stark reality of having the faulty gene is major surgery to remove both breasts.

Michelle Gracey has the BRCA1 mutation.

She's seen her mum fight breast cancer twice,

but, despite this, would rather risk cancer than get rid of her breasts.

I did choose in 2007 to have a full hysterectomy and my ovaries removed.

-Oh, really?

-Yeah, because I was scared of that risk.

-The ovarian cancer risk?

-Yeah.

Have you thought about having the mastectomy?

I've thought about it.

It's something I have thought about,

and when I went to the hospital with my mum when she got diagnosed,

the consultant who gave her the results advised me,

because he knows I've got the gene as well,

to have a double mastectomy.

For me, personally, it's not something I want to do.

Breasts are so visual, and they're not just,

it's not just like an organ in your body,

they've got so many different connotations with them,

like sexual connotations,

and I think for a woman to get rid of them is a really big deal,

and I think it's something that is not right for everyone.

I think some people wonder,

if breast cancer's going to affect me personally,

-then why am I keeping hold of these breasts that could...

-I have to say, that did cross my mind.

Yeah, that could cause me great illness.

There's are a few reasons. One is I'm scared.

-Of the surgery?

-Of the surgery and the recovery.

-And what they might look like?

-Yeah.

There's so many options to choose from as to what surgery you choose to have,

what kind of reconstruction especially you choose to have,

that I just don't think I could get my head around that.

-Hi! Oh, you look lovely!

-How are you?

Tonight, Josie is off to a charity ball for hereditary breast cancer.

She's been reunited with photographer Emma Webster for the night,

who's interested to hear how Lucy's test process is affecting Josie.

I'm quite worried, really, for the test day.

For her, or for everyone?

For everyone, because it's going to make, especially me and Emma,

it's going to open our eyes up to how ready we are for it.

And it's gonna make it real for everyone.

The ball is in aid of the Hereditary Breast Cancer Helpline,

run by mother and daughter team Wendy and Becky.

Both have had preventative surgery,

which is the only way to ensure a reduced cancer risk.

Just in a dress now, I asked you about your reconstructive...

I asked her, I said, well, what type of surgery did you have?

And you went, "I haven't had any!"

I think the whole thing has changed so much because I was,

I think, the first, they certainly had to invent the operation.

It wasn't on offer,

and the whole medical profession were totally against me doing this

so I couldn't make any demands on having reconstruction or what things might look like.

Now, there is a big focus on actually having the surgery and making a nice job of it,

and, you know, making women feel good about themselves again,

so they can go to the swimming baths and so on, and be undressed,

and like Becky here, you know, still with a nice cleavage.

I had this image that I'd go in for the surgery,

I'd come out and probably look like I'd been run over by a train and all this,

and I'd got used to that in my head.

And I went through this whole psychological thing of,

who am I? What am I? I am something if I don't have breasts.

So you can imagine the kind of person I was

when I woke up from surgery having built this whole inner confidence and everything else,

and then woke up to find two amazing boobs at the same time.

I was up there!

Even the hospital porters had to have a look.

-She showed them off to everybody!

-Everybody, everybody!

Anybody, "Just have a look, just have a look at these!" She was pulling it!

The ball is also attended by the surgeon who operated on Josie's mum 14 years before,

Andrew Baildam.

When your mum came to see me, she was very sure what she wanted,

but it was very much a pioneering time and she was just as much

a pioneer undergoing it, as we were doing it as a team.

I have to say I actually found the whole idea of doing this surgery quite difficult.

I was used to curing people, doing surgery to try and restore them.

But the idea of doing surgery before they had actually got the disease

seemed to be just not right.

I'd always be asked, "How can you possibly justify doing this to women who've got normal breasts?"

I'd say, "If you've got a BRCA1 gene mutation, it's in every single cell.

"That is NOT a woman who has got normal breasts."

And we never pretended that doing the surgery would reduce the risk to nothing,

but we knew that if it went from 85 down to 8% risk,

that would mean for every 100 women we operated on,

there would be nearly 80 who didn't get cancer, who otherwise would have done.

I don't think I ever realised how much it is a big operation.

She was in hospital for a whole week afterwards and...

Well, that's changed.

-Has it?

-That's changed. We usually send people out in 48 hours now.

She said that she was in hospital for a whole week

and when my dad was driving her home, he'd go over speed bumps and she'd have tears

streaming down her face because it was so painful.

Now we're up to about 300 women and we know, statistically,

scientifically proven, it does stop women from getting breast cancer

in the time frame, so far, that we have been looking.

Although there have been huge improvements in surgery,

it's still a daunting prospect for someone in their teens.

Hannah Fitzpatrick faced this fear

when she had a double mastectomy and breast reconstruction at only 19.

How old were you when you had it done?

I was 18 when I had the gene test. I was 19 when I had my operation.

Obviously, some people get quite worried about the test.

But I wasn't worried about the test.

I was more worried about the consequences after the test.

What made you decide to have it done so young?

I think it was mainly because I had an aunty who was terminally ill,

and then all of a sudden, I had another aunty who got breast cancer,

and two cousins who were at the age of 21.

They got cancer at 21?

Yeah, they got breast cancer at 21,

which is very rare, for someone so young.

They obviously had the gene as well, which made me think that,

"I'm nearly that age anyway," so basically, I had to get it done, really.

It's difficult, cos you've got no role model or anyone your age.

Exactly. When I went for my surgery, the only pictures

they could show me were of older women who had had breast cancer,

who were maybe in their mid-50s,

so sometimes the pictures didn't really reflect what my breasts were going to look like afterwards.

That must have been scary.

Yeah, a little bit, yeah.

They took all the breast tissue,

and put an implant in and covered it with back muscle.

Which...

doesn't really leave any scars on the front.

I've got one under my arm, which is barely noticeable now,

because it's kind of healed with the crease of the armpit,

and a scar on my back, but we're talking...

This operation was two years ago, and they're healing really well.

Did you have tattoos or did you have... How does it work?

It's basically...

You're left with a scar where the nipple used to be.

-A circular scar?

-Yeah, like a plain circle.

And they create the nipple by kind of lifting pieces from each...

It's like a triangle and they lift the pieces together to form, like,

the bobble, and once you've healed there, you have them tattooed.

They look fantastic.

It scares me if I had the operation,

that I'd look down and be like... someone had taken an axe to me.

I've got these images of, like, horrific boobs,

scars everywhere and men seeing it and being like, "What is that?"

Yeah, I had a few of them, but luckily,

when I actually saw what they looked like, I wasn't bothered at all.

That's so good.

With Lucy's test results still a few weeks away,

Mum and Dad have returned to the beach where the family were filmed.

14 years ago, the girls were very young,

and their gene testing seemed a long way away.

A long time has passed, hasn't it, since we were here?

14 years and a bit, and they were so little.

We looked at those little girls running around on the beach

and said, "Oh, how awful for them."

But actually, for Lucy, she's going through pretty much what I did.

I lost my mum to cancer. I could not bear to lose a daughter to cancer.

I mean, I just...

That just doesn't feel like something I could cope with at all.

We were all looking at three little girls playing on the beach,

hoping that, you know, medical science will have moved to sort it,

and it hasn't.

They shouldn't have to be thinking of things like breast cancer at their age.

But despite there being no cure for BRCA, science is improving.

Professor Gareth Evans is at the forefront of this development.

Josie, you're 18, is that right?

What we can do now is we can pump in all your data,

what your family history is, and we can come up with a risk graph

of what your risks are through the years.

Your risk, importantly, in the next ten years is very small -

you've got about 1.9%.

You can be relatively relaxed until your late 20s.

So it really starts to rise?

At about 28.

Yeah, so if you could change it to me actually, on this graph,

actually having the gene.

Obviously, the risks are going to go way up

because it's calculating you have the gene.

So this is 100% likelihood of having the gene

and your lifetime risk is now 83%.

It really does...

There's such a difference between that population risk and...

And the population risk is 10%, one in ten.

-That's not a very nice graph.

-No, it's not a nice graph.

Can you explain more about the new drugs that are coming out?

At the moment, we are actually starting...

In our clinic here at the Genesis Prevention Centre,

we are starting to actually treat people with tamoxifen.

That's an old drug - that's nothing new -

but what's new is that this is being offered as a preventative.

-OK.

-Tamoxifen has been shown, with five years' treatment,

to reduce the risk by 40%.

That's before... Like, pre-cancer?

That's before you get the cancer.

What we're looking at is actually using the mammograms to tell us who's getting a response.

What's currently being used in trials is a group of drugs called PARP inhibitors.

A PARP inhibitor is a drug that specifically targets cells

which have lost the BRCA1 gene.

-We can actually kill the cells before they become cancerous.

-OK.

Now, if the drugs work perfectly,

it will normalize your risk of getting breast cancer,

because it will it will effectively take away the BRCA1-related risk that you have.

Tomorrow is the day Lucy discovers the results of her gene test

and for Josie, the reality of her sister's result -

whether positive or negative - is really hitting home.

I'm nervous for Lucy, to get it done, to get the results.

I'm nervous for her but I'm also nervous

for how the rest of our family is going to react.

I can totally understand why she's so worried.

I'm worried as well.

It's a big thing, cos it's like my life's going to swing

in one direction or the other.

If I don't have it, I'll be able to change my life plans so much.

If I do have it, I'll have to think about so much stuff,

so it is quite massive, really.

If it's negative, erm... I don't know...

Irrationally, I think it might make me feel I've got more of a chance.

I'm feeling quite relaxed about it and, I don't know...

I'm feeling quite calm, thankfully. I'm not freaking out too much.

If I don't handle it very well with Lucy, how will I handle it

when it's actually me that's going through it?

So, it'll be an eye-opener for me.

The results day has arrived.

What's even harder for the family is that it's Julia's birthday.

-Are you all right? Are you?

-Yeah.

-Did you sleep all right?

-Yeah.

-I had an hour's sleep.

-Nice.

On the bathroom floor!

Nice! Why the bathroom floor?

Cos I was cowering by the toilet.

Oh, darling.

It's still difficult to know that the whole future of your life...

A woman who's driving in her car, to come here, knows it

and yet we don't. So it's... It's hard, isn't it?

How are you today?

Nauseous.

-Hi!

-How are you? >

She's here!

Hello.

Hi, Judith.

Hi, I'm Judith.

You didn't meet Jules, did you?

Nice to meet you.

Nice to see you again.

We're all a bit... Tenterhooks, like, a bit nervous, really...

-Do you want me to give you the results straight away?

-Yeah.

-OK. I'm afraid it's not the result we were hoping for.

-OK.

You do carry the gene alteration.

OK.

-It's up to you, what you want...

-It's what I was expecting, so...

Oh, sweetheart.

I'm all right. It was what I was expecting. 50-50, isn't it?

I love you so much. We'll be all right.

I'm just sorry.

There is as much support as you like, as well.

Thank you, I really appreciate it. Thank you.

I knew it was going to be that, but just hearing it is really hard.

It's still horrible, isn't it?

I really just wanted it to go the other way.

I'm so sorry I've passed you this.

Breaks my heart, really, to think...that this came from me,

so I'm so sorry.

It feels like a curse, you know?

Everything is so good, except for this.

-Not good, sorry.

-Aww!

-Are you all right?

-Yeah.

All this week I've just thought,

"I know she's got it so why is anyone not considering it?"

Then last night I was like, "Maybe she hasn't got it."

-Are you all right?

-Yeah.

-Oh, it's bloody real now, isn't it?!

-Have you said "happy birthday"?

-I texted you.

-Yes, you did, thank you!

It's not my happiest birthday.

With a positive test result, Lucy now has an 80% chance

of developing breast cancer in the future.

Josie's come to meet her sister Emma in Munich

to see how she feels about the test now Lucy's had her result.

-How is Lucy? How's she doing?

-Er, I think she's all right.

She did... She's just quite good at that kind of thing.

She was so grown-up and brave about it

and it's really made me feel like she's my big sister

and I'm proud of her, and I want to be like her.

It's so hard to watch her, but also so hard, knowing that is coming to us,

She's just set such... It sounds shit, but she's just set such a good example.

Lucy's test results. On the day, I was just sat there

and I was like, "I need to know now. I can't wait any longer."

Pandora's box or whatever has been opened

and I need to know what mine is. I need to know it for me.

Bam! Lucy gets her results, and I'm like, "I need the test now."

But yeah, but that is... That's not the reasons to do this.

-I know. It's not.

-The reasons to do this is because you feel like you can cope with it.

You've got to do it for the right reasons.

In everyone's lives they will have moments that they look back on

and go, "That's when I knew I was grown up.

"That's when I was definitely not a child any more."

When we make the decision to get the gene test,

that will be such a defining moment of our life.

It doesn't matter if I'm ready or not,

now I'm going to have to be more grown up.

Sometimes I feel like our whole medical history

is like a story book because when it all happened, we were little.

-The veil's been lifted.

-Is that making you want to have the test done?

I think...it's...like...

I feel like it is my time to do this now.

She's really slowed down and thought about it,

-and has just made me realise that's what

-I

-need to do.

I need to think about it for myself.

I have been given so much different information recently

and I thought it would be quite helpful to sit down

and write it all down, and bullet-point the pros and cons of it all,

so I can actually formulate in my head a bit.

Cons - worrying about my health all the time.

I would hate to be paranoid.

Not being able to enjoy my youth,

and then resentment for having to feel older and grow up faster

than the rest of my friends and the rest of the people my age.

And then the pros - I would have all the information,

being aware of health issues, being aware of my body,

being able to prepare and effectively map out my life a bit more.

I've got a strong support network around me.

A better understanding of how it feels,

so I could support Luce, support her better, and be there for her.

At the start of all of this, I felt I wasn't ready.

I didn't actually know that much about BRCA.

I look back on it now, and I thought I knew it all,

and realistically, I knew nothing.

Having met everyone and learnt so much,

I feel that as Lucy has had it done, and Emma's getting it done soon,

I think I will, in the next year or so, get the test done.

If it's not a good result and I have BRCA, then I'll cope with it

because you just do - you suck it up, get the news, and deal with it.

It doesn't need to be something that rules my life.

It doesn't need to be something that I think about every day.

I could still be me.

I can still have a laugh and enjoy being young,

but just be a little bit more responsible, and just be a little bit more aware.

It wouldn't stop me from being who I am,

because I don't think that anything can stop me.

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