VIDEO: A Family Legacy | Erica Packer and Jo Hunter

LEIGH SALES, PRESENTER: Hey, nice to see you. Erica Packer joined one of Australia's most powerful dynasties when she married into the packer family – although she's always kept an incredibly low profile. Now she and her sister Jo Hunter are choosing to speak publicly about a health issue that's cast a long shadow over the women in her family. They're hoping to break a tragic pattern. by learning more about their genetic inheritance.

ERICA PACKER: From my perspective, breast cancer has been a fatal thing in my family. That's been the thing that so many women have died from. On my mother's side of the family. I get screened every six months. I go between mammograms and ultrasounds and MRIs and doctor's visits. I'm biopsied all the time. And you don't know the results for days. So you, your sort of put in this very vulnerable position of is it this time? Is it this time?

Photographer: Stop for a photo, please.

SANCHIA BRAHIMI: The world knows Erica as being married to James Packer and mother to three children. A beautiful model. 

But she certainly doesn't want to be in in the spotlight. I mean, that's just not her.

(Jo and Erica walking down street in London)

(Erica talking to Jo)

Down here was our local shops and stuff. These shops are all new.

JO HUNTER: Eri is not a very public person.

I think we wanted to do this program just because we, our family has quite a big history of breast cancer. There is that cloud, sort of hanging over the family, you know, with so much history.

CLEOLA ANDERIESZ, CEO, NATIONAL BREAST CANCER FOUNDATION: There are a lot of families like Jo and Erica's which have a strong family history of breast cancer, but they actually don't know the genetic cause of that breast cancer.

ERICA PACKER: I'd love the answers. I'd love to know if I'm a carrier, if my brother's a carrier, if that goes into the next generation and how we confront that. I feel very passionate about it because there's 100,000 Aussies in the same boat that I'm in.It's a medical mystery that we're really hoping to uncover.

TITLE: A Family Legacy

(Sydney, Gadigal country)

(family posing for a photo)

Photographer: Alright, I'm just going to get all the kids to sort of arrange in pyramid.

ERICA PACKER: Joey, our brother Billy and I have always, since we were kids, been very close and been very good friends.

Photographer: Alright, I want a happy one from everyone on the count of three. One, two, three.

(Jo and Erica sitting in living room together)

JO HUNTER: Billy has three children, and Eri has three children, and I have four children. And they all just love each other like crazy.

(Serving a family dinner)

(family chatter)

CLEOLA ANDERIESZ, CEO, NATIONAL BREAST CANCER FOUNDATION: Erica and Joe's family. They've got multiple members that have been diagnosed with breast cancer in different generations that are very closely related.

(Family sitting down to dinner)

Cheers everyone, so nice having everyone together.

ERICA PACKER: Mum was diagnosed 25 years ago. Jo had breast cancer at 39 and survived.

Kids: Berlin Wall yah or nay?

ERICA PACKER: They found it early enough and that's why we get to sit here and and, you know, do this

JO HUNTER: But we haven't found the cause of it yet. Or a gene that links us all together.

Kids: He's 50, he's 50, he's 27.

Jo: He's in his 50th year, Michael.

Billy: You'd be lucky to make 50 all the cancer in this family you be dead by 66.

Jo and Erica: Oh what the heck! So wrong!

CLEOLA ANDERIESZ, CEO, NATIONAL BREAST CANCER FOUNDATION: In the mid-90s we first discovered two of the major breast cancer genes that seem to be inherited in families and what we're learning is that there are more genes that are associated with developing breast cancer. We've coined the term called 'missing matches' to try and identify in those families what that genetic error is and what that gene is that's being passed down through the family.

(Jo and Erica at table looking at genetic test package)

Jo: Let's have a look, all these instructions, I hope I can follow them. Ok so it actually looks quite easy.

JO HUNTER: Because I've had breast cancer. I'm actually in the process of getting genetic testing.

Jo: I just have to fill up the vial up to here with saliva spitting it in which I don't think I'll be showing on TV.

Erica: You don't want to show?

Jo: No.

JO HUNTER: I want to get tested to see if we have one of the genes that they have found since I have diagnosed 12 years ago.

Jo: My lovely saliva. And then, thank goodness I've got steady hands

Erica: Old nursing skills coming back to play

Jo: All my nursing skills. Use the cap tightly and then you have to shake for five seconds.

JO HUNTER: I would like to get some answers for ourselves, for our generation and for the generation below us .

Jo: Right, we're doing well. And then I'm gonna put it back in the box and then I'm going to send it off and wait for the results for a couple of weeks.

(Gunnedah NSW, Kamilaroi country)

(Erica and Jo in car driving through Gunnedah)

Erica: Feels amazing to be back.

Jo: It's very green, it's lovely.

Erica: Like a warm hug.

Jo: There's KFC! Do you remember when it came into town?

Erica: That was so exciting.

Jo: It was actually massive news and we had nothing. We used to have to, there was only fish and chips at the local café.

ERICA PACKER: I feel really grateful to have grown up in Gunnedah. It's such a beautiful little country town.

Jo: Main street hasn't changed much.

Erica: Wow! This is Amazing.

ERICA PACKER: Mum and dad really created a very strong, solid base for all of us as kids.

Jo: And then we come down… Oh my gosh, the tennis courts always seemed so many.

Erica: A major part of our lives growing up.

Jo: Yeah. There's the athletics field, so, so fun put in many an hour in there.

JO HUNTER: I'm the eldest. And then there's my brother, and then Eri, who is quite a bit younger than me. You wouldn't be able to tell, but five and a half years younger. (laughter)

Erica: So nice to be back.

Jo: I know.

JO HUNTER: Mum and dad were happily married for 41 years, so I just think they've instilled in us this great family bond that we have.

Erica: Dad's office, WA Baxter and Co.

God, we used to spend so much time here as kids.

ERICA PACKER: My dad was a solicitor in town, and his father was before him. Mum was a nurse and she was very no nonsense. Like if you weren't broken and you weren't, you know, dying of a fever, you were at school, you, you know, you had to always sort of get on with it, that good sort of rural Aussie mum. I think Mum really encouraged us to get out and try everything and maybe it was just to get us out of the house. We all played a lot of sport. It was nice.

ERICA PACKER: I went to boarding school for year seven. And then when I was 15, I was scouted on a North Sydney train station. Much to my embarrassment. It was a woman from Priscilla's, so I went in and met them and she's still my agent today.

PRISCILLA LEIGHTON CLARK, MODEL AGENT: My first impressions of Erica was, Wow, what, gorgeous, vivacious kid. She was probably a little bit too young, but she was always wise beyond her years, very, very bright person. And she really took to modelling like a duck to water.

ERICA PACKER: when I was about 16-and-a-half I left school, and I went to Milan and sort of started modelling there. My dad never wanted me to leave school, he was very against it and sort of slightly heartbroken. But my mum was just like, this is an amazing opportunity and go see the world and, and you know, school, you can always go back to school. I think after three days in Milan, I was calling Priscilla going, 'please send me home', I want to be back with my parents.

You know as a little kid from Gunnedah, you know, I was, I was going off to Africa doing a shoot and, and Cuba, all these ama..Jamaica. And it was really it was really a wild time.

If it was my children, there would be no way. No. No chance. But you know, it was a different time.

(photos of Erica and Jason Donavon)

PRISCILLA LEIGHTON CLARK, MODEL AGENT: Erica had high profile boyfriends along the way, especially her first boyfriend, really, of that ilk was Jason Donovan. And with Jason, who was very famous at the time, came all that media scrutiny. But Erica just coped with it extremely well.

ERICA PACKER: I do remember in London with Jason once, one of the first things we went to was a party for Elton John. And going into this massive party and everywhere I went, everyone was famous. And I just thought, wow, this is a whole new level of, like nothing I've ever seen.

JO HUNTER: While Eri was working around the world, I became a registered nurse and worked at worked at North Shore Hospital and then met my husband, David there, who was a doctor and worst cliche in the whole world.

ERICA: Playing doctors and nurses [laughter].

JO HUNTER: Yeah, we didn't play doctors and nurses at all. But it was certainly, I met, the day I met him I knew I was going to marry him.

PROF DAVID HUNTER, JO'S HUSBAND: I just saw this beautiful, you know, intelligent, vivacious young girl. And I thought, amazing. And we started having kids when we were pretty young.

PRISCILLA LEIGHTON CLARK, MODEL AGENT: Erica and Jo were both living in London in 1999 when they got the news that their mother, Sheila had breast cancer.

JO HUNTER: Mum was diagnosed when she was 54 years old, so she was still quite young.

ERICA PACKER: She had a mastectomy and then went straight into chemo for nine months. And then after that, she had radiation therapy for a long time. She was really no nonsense about it, she obviously must have been terrified, but didn't sort of show that.

JO HUNTER: When mum was diagnosed, there was such a large number of family members who had had it as well, it was kind of like, oh there's something going on here, yeah, this isn't normal.

(Sydney, Gadigal country)

(Erica and Jo drawing family tree at kitchen table)

Jo: So, if we have me…

Erica: Start with you.

Jo: As the index person, the first person of this generation, we can get tested.

ERICA PACKER: I think every woman on my mother's side has had breast cancer.

Jo: Oh, You need to underline, so underline coz they had breast cancer.

Erica: Oh, sorry.

Jo: Well done.

Erica: Ok.

Jo: And then we have Mum with beautiful hair and her sister Marion.

ERICA PACKER: Mum's sister had breast cancer. My mum's mum had breast cancer. And then with my mum's, mum's generation. There's 18 of our 21 relatives that had cancer.

Jo: We don't know exactly all the names… but of that generation, around 14 of those had breast cancer

ERICA PACKER: And so that makes it a significant hereditary risk. 

JO HUNTER: Mum did have genetic testing back then, but it didn't show anything. Mum didn't have the mutation in the BRCA one and two genes. These are the two known gene mutations that put you at a higher risk of breast cancer.

ERICA PACKER: And so then at that time, they said there's no real point in the rest of us getting genetic testing if she doesn't carry it, then we won't carry it.

Jo: There's three, four little girls in the next generation and it would be handy for them to know what's going on.

JO HUNTER: We didn't know then, that there were a number of other gene mutations out there that could cause breast cancer.

ERICA PACKER: Mum definitely didn't want us to stop our life and go home. She goes I don't want you to come home, I'm not dying, like I'm not going to die. Don't come home and make me feel like I'm dying.

(Clip from "I Spy", Sony BMG music video)

(Erica sings) I spy with my little eye …

JO HUNTER: It didn't surprise me really, when Eri went into a music career after all the hairbrushes and the dancing around the rumpus room non-stop.

(Clip from "Dreams", EMI music video)

(Erica sings)

Let your love rain down on me.

ERICA PACKER: I had the best time and being in the studio, writing songs and just coming up with things each day. But I didn't love the performing side of it. I used to get really anxious… And I'd be sort of throwing up backstage and I just thought, I can't, it's… as much as I love it and as much as I want to do it, that that constant feeling was pretty rough.

(Function chatter)

ERICA PACKER: And it was also a time of my life when, James and I were dating, not that I had to choose. And he never asked me to choose, ever. But I think I thought I'd rather focus on this than that.

PRISCILLA LEIGHTON CLARK, MODEL AGENT: Erica and James started dating in 2002. They had been friends prior to a romantic relationship starting between them.

(news clip)

In 2005 James Packer inherited the familys multi-billion dollar media empire when his father Kerry, died.

ERICA PACKER: He's so clever and he was so funny and charming and very dynamic. And it's a very big life with James, getting to, you know, meet all these world leaders and fascinating people, these big brains and people that are changing the world that I felt very privileged to be a part of.

SANCHIA BRAHIMI, FRIEND: Erica and James got married in the south of France in 2007, and it was yeah, it was an incredible, you know, time. It was huge.

ERICA PACKER: At my wedding, my mum had a lot of back pain. And we just thought it was the travel. But she, you know, and she wanted to be there for me. And it was a big moment in my life.

SANCHIA BRAHIMI, FRIEND: And I think she knew that the cancer had come back. But she didn't want it to sort of distract from the day.

But after the wedding, they realised that the cancer had come back, and it had spread.

(Erica and Jo looking through family photo albums)

Erica: This is a nice one of Mum.

Jo: Dad's got his Boston Red Sox hat on.

JO HUNTER: Yeah 2011 was a really tough year for our family. It just, you know, as the saying goes, when it rains, it pours, it sure poured.

Jo: Considering how good she looked compared to how she was feeling at the time.

Erica: I know.

JO HUNTER: I'd been screening for breast cancer since I was 35. So I had a clear mammogram in July, and then by January I had three tumours in one of my breasts, so caught on an MRI.

PROF. DAVID HUNTER, JO'S HUSBAND: She was only 39 years of age. We had four young kids, all of whom were in a really formative part of their life, but all, all old enough to understand what cancer meant.

(Jo and daughter Hannah looking through photo album)

Jo: Do you remember when I, the day of the surgery? You went to school it was a long day.

HANNAH HUNTER, DAUGHTER: I remember when I went to school, my friend came up to me and I just found out, so I was still sensitive news and she told me that my Mum was going to die. It's a terrifying thing because it's your biggest support system. You're terrified the whole time until the end.

Jo: And they gave you the blue dye. And I came out and I looked like an avatar into the dough.

You are very ill there.

ERICA PACKER: My sister is one of my best friends in the world and watching her go in that into that operation and not knowing if her cancer had spread was pretty scary.

JO HUNTER: Because I had been so diligent with the screening, I just never believed for one minute that I was going to die, or I was going to be really ill. That I would, I just knew I'd be okay.

SANCHIA BRAHIMI, FRIEND: That early detection was fantastic for her. She didn't have to have chemotherapy, but she underwent a bilateral mastectomy because just of this sort of high incidence.

JO PACKER: After I had the mastectomy, I started the reconstruction process and I was very happy with my reconstruction.

ERICA PACKER: Jo's really helped a lot of people on their journey through breast cancer. You know, Joe is a nurse like my mom was. And so, they're carers.

(Jo and Manami and husband Kevin plus Sanchia around kitchen table)

Manami: When I met you, I, um. I mean, I had no idea. Yeah. What this was going to be like.

SANCHIA BRAHIMI, FRIEND: Recently, I brought a friend called Manami to meet Jo shed been diagnosed with breast cancer.

Jo: Once you get diagnosed with breast cancer, you get into the breast cancer family.

Manami: Yeah, it's a very unique connection.

Jo: It's a really unique…

Manami: Yeah, it's not something you want, but yeah

Jo: That's a nice wrap, you know, arms being wrapped around you a little bit.

SANCHIA BRAHIMI, FRIEND: So Jo gave her great counsel and comfort and support.

Manami: Double mastectomy and reconstruction was something that I was already thinking. So that's exactly what you did.

Kevin: You just don't know what you're dealing with. You don't expect it. And then you've got to learn really quickly.

Sanchia: I said to Manami Jo when she meets with women actually shows women what it looks like. You know, what a reconstruction looks like.

ERICA PACKER: When people were getting diagnosed and they were scared and facing a mastectomy and stuff. She would go around and basically show them her boobs and give them a peep show of like, look, they can still look great. It's going to be okay (laughs).

Manami: It was really helpful for you to show your outcome.

JO HUNTER: I think there was a joke at one stage that there wasn't a person left in Sydney that hadn't seen my breasts.

ERICA: The Peep show queen. Who knew? (laughs).

(Jo and Erica at Gunnedah look out)

Erica: Been so long since I've been up here. So beautiful.

Jo: Actually quite green at the moment.

Erica: Where's Mum and Dad's house?

JO HUNTER: As 2011 progressed I had the all clear then, but back In Gunnedah mum was getting sicker and sicker.

HANNAH HUNTER, JO'S DAUGHTER: Nana didn't want to give away too much, especially because we were young, so I didn't really know she was sick until a bit older, until it was a bit worse.

Definitely the first time I saw her take her wig off. Was probably the first sign where I was like, oh, most people don't have that.

ERICA PACKER: And then it started to spread everywhere. And then it was a case of chemo till she she grew a tolerance to it. And then another chemo and another, until she ran out of chemos.

JO HUNTER: Mum was a very strong mentally but about October, mum was told that she had 6 to 8 weeks. There was nothing else they could do and I'm not going to be able to do it I don't think…

DAVID HUNTER, JO'S HUSBAND: Towards the end, we made a decision to go away for a week and spend a week on a boat in Fiji with the whole family together, just so we could be together, because we, we knew that would probably be the last time.

ERICA PACKER: As tough as that time was, I think we all feel really grateful that we could be there with her on the boat as she passed and holding her hand and giving her a lot of love. So that part of it I'm very grateful for.

We started to support the breast cancer cause probably when Mum first got her prognosis.

Going into all those chemo rooms and seeing all the patients and seeing what they go through and and you know…

JO HUNTER: And how good the staff are.

ERICA PACKER: …how everyone's so brave and the nurses are so brave and friendly and I think it just it really, it became part of our family, this disease.

Jo: Absolutely beautiful. So new and modern, I love it.

CLEOLA ANDERIESZ, CEO, NATIONAL BREAST CANCER FOUNDATION: Erica and Joe and their family represent many Australian families out there which do not have a known genetic cause for their breast cancer. We are funding the research at the Peter MacCallum Cancer Institute so we can continue to identify more of these genes, more of these missing matches that are causing breast cancer in these families.

Cleola: The familial cancer centre provides genetic testing, genetic counselling.

JO HUNTER: Going down to Melbourne and seeing the Research Centre actually got me really excited. Even since I was tested 12 years ago, there's been huge medical advancement in genetic testing for breast cancer.

(Jo's session with Prof. Paul James)

Prof Paul James: Come on in.

Jo: Where would you like me to sit?

Prof Paul James: Just here's fine.

JO HUNTER: I'm going to have a consultation with one of the doctors here about genetic testing

Jo: I had genetic testing done ten years ago, you know, after diagnosis to have the BRCA gene tested, and we do not have the BRCA gene in our family.

PROF PAUL JAMES: We have a lot of new information around the genetics involved in breast cancer and of course that's changing all the time.

PROF PAUL JAMES, CLINICAL GENETICIST: Ten years ago, we knew about BRCA1, BRCA2, and they are still the most important genes for breast cancer. But for people who are tested more than a decade ago, if they have a strong family history, there is a good reason to say, well, what more can we do?

Prof. Paul James: Recently those the list of genes that can contribute to breast cancer has started to grow. And at the moment, we can offer a test to people that has around 8 to 10 different genes that are involved in the risk of breast cancer.

Jo: If you don't find anything on the when you do the testing, what happens to that then?

Prof Paul James: We can take the same genetic sample that's provided up to the research laboratory and start looking further for things that we know we can't test for in the clinic.

CLEOLA ANDERIESZ, CEO, NATIONAL BREAST CANCER FOUNDATION: Families that don't test positive for that panel of 8 to 10 breast cancer genes can be referred to Professor Ian Campbell's research study, which is trying to find those other breast cancer genes that may run in these families.

Prof. Ian Campbell at DNA machine

Ok so what we have here is one of our new DNA sequencing machines, this can do 10 billion sequencing reads in individual, so this machine here overnight could sequence your whole genome.

PROF. IAN CAMPBELL, MOLECULAR GENETICIST: We have a very large number of women who have been tested for all the known genes but returned negative result, so those women have kindly given us permission to look deeply at the genes to see if we can find an explanation.

Prof. Ian Campbell: We will sequence that DNA, and we look at a much bigger bank of genes to see if there's anything going on in those other genes.

PROF. IAN CAMPBELL, MOLECULAR GENETICIST: As part of our research, we've found about 40 genes which seem which look plausible that they might cause a breast cancer in those women.

PROF. IAN CAMPBELL, MOLECULAR GENETICIST: So Jo has had breast cancer and if we can discover what gene is causing her breast cancer, that then allows us to start testing Erica and other family members to see whether those other family members also carry that same gene mutation.

(Erica & Jo on London walk)

Erica: The Houses are so beautiful around here, all the colours.

ERICA PACKER: I am getting tested every six months and when you have to wait for those results, those days are harrowing and its sort of like last summer I had a pretty bad diagnosis and I had something that had grown very quickly, very aggressively. Um, that really sort of stopped us in our tracks a little bit, you suddenly smacked in the face with your own mortality.

And is this something or is it nothing at all?

And it's something families like ours, they go through it every six months.

JO PACKER: We were just so lucky, that time for Eri that it was a false alarm.

PROF PAUL JAMES, CLINICAL GENETICIST: For somebody like Erica, if we were able to offer a test that would be able to tell her about her future risk, then it would come with a range of options and recommendations about how we can manage that risk.

CLEOLA ANDERIESZ, CEO, NATIONAL BREAST CANCER FOUNDATION: I think at the end of the day, knowledge is power, so without understanding the genetic cause of their breast cancer, people can't fully informed decisions about their screening, about their prevention, or potentially if they develop breast cancer, about their future care.

ERICA PACKER: I think this genetic testing is so important for that reason, whether I do something with it or not, I have the information to make an informed decision on what to do with my body or what not to do with my body.

(Jo at home on phone)

I think Eri, once we find out whether we've got a gene or not down, I think we go from there.

JO HUNTER: I'm still waiting on the results of my genetic testing

Jo: I'm not sure of the timeframe but we are just waiting and then I then make an appointment to speak to him.

JO HUNTER: At this stage, I would like to keep the results private just so we have a chance to sort of process them. I do feel slightly nervous about getting the results, because there are big consequences for our family if we do find a gene.

(Los Angeles)

PRISCILLA LEIGHTON CLARK, Model Agent: James and Erica split in 2013 and subsequently Erica moved to Los Angeles with the children.

ERICA PACKER: Yeah, we spent nine years in LA, to sort of give the kids a bit more of an upbringing away from the spotlight a little bit, especially with the scrutiny that went around James and my divorce.

PRISCILLA LEIGHTON CLARK, MODEL AGENT: She was intensely private, but she was very strong, she wasn't out there badmouthing anyone, she was just very dignified.

ERICA PACKER: We had an 11-year relationship, we still share such a respect for each other and care and a lot of love for each other. And out of that, we have these three beautiful children who are our absolute priority in our lives.

You know and everything I do now is for them and to try and create that sense of love and safety and security that I was fortunate to have as a kid.

(Mothers and daughters photo shoot)

Photographer: Lovely

Jo: So much easier, can I hide now?

ERICA PACKER: And raise them to be capable young adults and especially in the surrounds that they grow up, which is, you know, obviously different to me.

Jo: My baby's bigger than your baby.

HANNAH HUNTER, JO'S DAUGHTER: Because I've been surrounded by breast cancer my whole life, I've always been fearful about me getting it. I think I'm too early now. I've thought about it, I've thought about it, but I think it's too early now to go get screened, but I think I'll be screening from maybe 30 on. By early screening, I'll be able to catch it early.

Indigo Packer: I used to do wordle quordle octordle sedordle which is sixteen and then a worldle.

Son: And now you shower and brush your teeth and do other things.

JO HUNTER: Hopefully by the time, our daughters are coming of age the doctors have solved all these problems and we've found every gene under the sun and it won't be a problem for all families like ours out there that are have a breast cancer familial gene.

The mystery will be solved and we will eradicate deaths from breast cancer. That's my main hope in life for all of us, you know, for our family and for our daughters and for the next generation to come.

(END CAPTION)

There are familial cancer centres in every state.

Anyone who suspects they are at risk of familial breast cancer can talk to their GP about access to genetic testing.