I had a double mastectomy

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As told by KRYSTAL BARTER to Nicole Elphick

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Concerned about cancer? Look around you.

Peter Mac oncologist Gillian Mitchell says the centre provides screening tests to those with a history of breast cancer in the family.

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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.

Founder of Pink Hope, Krystal Barter.

Founder of Pink Hope, Krystal Barter.

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 [Barter 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.

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.”

31 comments

  • I'm glad women are taking back some control. I expect that this will become more common as reconstructive surgery becomes more well known and accepted and genetic defects identified. I was diagnosed at 39 with breast cancer and needed one breast removed. Although not BRACA I was advised that it was genetic (mum,grandmother and great grandmother all dying of the disease) and as the defect was there it can obviously lead to cancer in the other one. So I elected to have the other one off. Although not out of the woods yet, I do feel that I have done all that I can do. So what ever happens there are no regrets. And the new ones like here are vastly superior and safe! Its the judgement of others that stunned me. I was over reacting, it was unnecessary mutilation to my body. Garbage! I have my mental health and far more security over my physical health. I thank my surgeon for recommending this course of events and saving my life.

    Commenter
    monster
    Location
    sydney
    Date and time
    May 15, 2013, 10:11AM
    • I find the ignorance of some of the comments on some of the blogs about this extraordinary. I don't know much about it, but that means I don't get the opportunity to have an opinion either way until I find out.

      Comments such as 'wer'e all going to die anyway', 'you can't completely remove the risk', 'it's an over-reaction', 'why not wait until its diagnosed' etc are either inane, irrelevant, illogical or all three.

      Congratulations to AJ (and you) for keeping up the information flow. Given the worldwide publicity of her statement it's no exaggeration to say that women's lives have probably been saved by her choosing to go public.

      Commenter
      bornagirl
      Location
      Melbourne
      Date and time
      May 15, 2013, 12:11PM
    • We don't have a history of breast cancer in our family, although I had a cousin die in her mid 30s of a rampant form of the disease. She had two young children and it was heartbreaking that they have grown up without their mum.
      I think any woman that has to face up to this is incredibly brave, and it is so great that in this era we have the option of reconstructive surgery.
      Anyone that thinks that having, what is now, healthy boobs removed to mitigate the risk as being mutilation, doesn't understand what these ladies are living with.
      Long life to you all!

      Commenter
      Mum of 3
      Date and time
      May 15, 2013, 12:14PM
    • @ bornagirl - so well said!!!
      Actually my cousin who is European made the same decision and despite her visiting Melbourne, Paris and Switzerland to get the best advice, I still do not know enough to comment. While in Melbourne seeing a real expert to get advice, she had to block out all those comments from the clueless who could not understand why when she did not have cancer. She asked me what I thought and I told her that she should only take advice from those who know what she is dealing with - to me it would not change her. By AJ going public, it can only help other women.

      Commenter
      ProChoice
      Date and time
      May 15, 2013, 12:45PM
  • Thank you for being so inspiring and sharing such a brave story.

    Commenter
    Lovely
    Location
    At my desk
    Date and time
    May 15, 2013, 10:16AM
    • +1 Totally agree. Very brave. Knowledge is power and you should be praised for facing up to this and tackling it with all you had.

      Commenter
      Carla_bunga
      Date and time
      May 15, 2013, 11:54AM
    • Very, very brave. Amazingly strong women to be able to do this.

      As I say to my wife, who has had three children, if it were up to the males to reproduce and give birth, the human species would have died out a long time ago.

      Commenter
      azzos
      Date and time
      May 15, 2013, 1:05PM
  • So, what's more important, the welfare and future of the child or those 2 (now useless because she has had her family) appendages. No decision to be made.

    Commenter
    My way of thinking
    Date and time
    May 15, 2013, 11:48AM
    • Whoah - "useless" because she now has a family? That's a bit of an oversimplification.

      After watching my beautiful sister lose her breasts - before the cancer eventually killed her - I can tell you that she didn't think of them as useless appendages that only serve a function in breastfeeding.

      Krystal made a very brave decision, let's not pretend it was an easy one.

      Commenter
      Red Pony
      Date and time
      May 15, 2013, 1:43PM
  • There is no denying breast cancer is a terrible disease. But the coverage of this story (and Angelina's) fails to adequately report the other important aspect - the dangers of breast implants. The Australian regulator, the TGA, has failed and continues to fail women because our FOI laws make it impossible for women to know what chemicals are in their implants. This is the case before implantation, when deciding whether to have them, and after - even if the woman is suffering serious health complications. The TGA rely on the 'commercial in confidence' and 'trade secret' exceptions in the FOI Act to deny women this crucial information.

    I am suffering debilitating health problems from ruptured implants and am unable to get proper medical treatment because I am unable to tell my doctors what chemicals were in my implants. The manufacturer won't tell me. The TGA won't tell me.

    Why is it that Cadbury have to tell me what's in the chocolate bar I eat, but the manufacturer of an implanted medical device and the regulator that is supposed to protect me don't have to tell me what's in that device?

    Commenter
    The Boobie Trap
    Date and time
    May 15, 2013, 12:13PM

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