Why I had a double mastectomy

Last updated 11:17 15/05/2013
Fairfax NZ

Angelina Jolie says cancer fears led her to have double mastectomy, we asked would you do the same.

Krystal Barter
SURVIVOR: Krystal Barter had a preventative double mastectomy, aged 25.

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I grew up knowing that there was always something different with my family. My great-grandma was 68 when she was diagnosed [with cancer]. My nan was 44 when she was diagnosed. My mum was only 36. So I grew up in a family where pretty much every woman didn't have any breasts.

My mum and my nan were actually one of the first people tested for the BRCA gene fault in Australia, when I was 17 or 18. It came back that they were both positive for BRCA1, the same gene fault as Angelina Jolie. I wasn't ready to be tested at that time. Then at 22, I had a one-year-old baby in my arms and I just said, 'You know what, it's the gift of knowledge', so I went in for the test. They took some blood and four weeks later found out that I was positive. I had my husband by my side and my beautiful firstborn in my arms.

It wasn't until three years later that actual changes were detected in my breast tissue - that was my last high risk screening - and I was 25.

I can remember at that moment that I was like, 'Whether it's cancer or not, I just do not want to put my family through that'. I decided right then and there book me in, I'm going to have my breasts removed. That's a lot for a 25-year-old girl to decide. But I wasn't dealing with it emotionally. Anxiety, insomnia... I just felt like this cloud was sitting on top of me. So I had my breasts removed and it felt like my new life started.

Everyone deals with it differently. I've spoken to some people that literally woke up and were fine. But I felt like a small hippo had taken residency on my chest. It was a hard slog for a good few weeks - I had drains, I had my girlfriends walking in and sobbing at the end of my bed. It's only when I sit back and contemplate it that I realise it was a big decision to make, but ultimately it saved my life. When you've got a strong family history and they've given you this piece of paper that says there's a 90 per cent risk that you're going to get cancer, you're not going to sit there and wait for it to come and get you. You want to act now and that will be the end.

I grew up being scared for my whole life that I was going to get cancer. At 16 I came running in to my mum saying I'd found a lump - that's not normal behaviour for a teenage girl. We have 25 women in our extended family and 80 per cent of them that had died [from cancer]. I didn't want to be a statistic. I wanted to live my life not under the cloud of cancer, but in happiness with my kids. Losing my breasts is such a small price to pay.

I feel amazing [post-mastectomy]. I think after breastfeeding two hungry young boys my boobs were nothing to write home about. I love these ones more than I did my last ones. They're bigger. And I can jog - not that I jog that much - and they don't move. My girlfriends laugh and say I'll be the sexiest grandma in the nursing home with these two big perky boobs! (laughs) You've got to see the light in every situation and I think humour's been the way I've been able to deal with it, and obviously working with my charity [Barker is the founder of Pink Hope a community for high-risk women]. I'm just an example of the 120000 Australian women who walk this journey ever day.

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I'm more than likely going to have my fallopian tubes removed next year and then have a little break and have my ovaries [removed] after. At the moment I feel like I can totally do it - especially on the days when the kids are really naughty! (laughs) I'm like, 'take those things out!' But I bet you when they're wheeling me in to do it, I'll be an absolute sob story. Because it's that one last bit that I hold that doesn't make me an empty cupboard, do you know what I mean?

I had a baby girl, she's now three, so she potentially carries this gene fault, and it's the same with Angelina Jolie's biological children as well. It can go on and on. I hope and pray that the next generation will face something completely different to what I did. But if my daughter carries this gene fault and she has to make the same decisions as me, I'm going to ensure that she's got a community and a charity like Pink Hope that can enable her to see her journey as positive and to have the best support and resources available. I've dedicated the rest of my life to this cause.

When you think of two of the highest profile celebrities in the world you think of Angelina and Brad. And to have someone who is that typical sex symbol, that vixen she's always played, to come out and very openly and honestly share her story the way that she did, she's going to change everything. It's not just going to be the silent suburban mums that are facing it, we've now got one of the biggest celebrities in the world behind the cause. It's huge. I guess my message for her is thank you so much for sharing your story and empowering so many more women to feel confident and positive about what the future may hold for them.

Suffice to say, it's incredibly sad what she's had to go through, but she watched her mum die [of ovarian cancer] and never see her grandbabies. I can say that she's done the right thing because I've walked the same journey."

- As told to Nicole Elphick

- Daily Life

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