Alyse's Story

"I decided even before my results came through that if I was positive I would have children by IVF to inhibit the gene being passed any further through my family"

I first heard of BRCA1 when I was 14, my Dads side of the family went to Waikato Hospital for "genetics counseling" afterward my Dad was tested for the gene mutation and was found to be positive which meant I could also be tested when I was 18. This year (2012) in June my Mother, Brother and I attended more counseling at the Hastings Hospital, where I received the forms to be tested. Five months later I still hadn't heard back so I rung the Genetics Associate who I met with in June who said she had my results. I found out I was positive. My sister who doesn't associate with my Dad had been tested around the same time and was found to be negative. I was lucky to have a girl in my Beauty Therapy Class who has the BRCA1 gene also who I talked to before I got the results. Her mum was very young when she died of cancer. It really made me think about what a positive result would mean for my future children.

The gene mutation comes from my fathers side of the family. My Dads mother would apologise to me for potentially passing the gene to me even before I'd been tested, So when I found out about being positve I attempted to keep it a secret from my Dads family. Unfortunately it wasn't kept secret for long. Although I wouldn't wish having this gene upon anybody I often wonder why me? My sister has a daughter who is pregnant at the moment so the news she wouldn't have the gene from her Mum was great. A family member told me "it's better you have the gene than she does." I couldn't believe someone would say that to me. How do you work that out? I want to have children to so just don't get why they would say that.

I have two brothers who are yet to be tested also and part of me hopes I'm not the only one while another part hopes they don't as one of them has a daughter.

I decided even before my results came through that if i was positive I would have children by IVF to inhibit the gene being passed any further through my family. I also struggle with the fact that I'll be getting breast examinations 26 years before any other females my age. I feel quite alone in the way that there isn't really anyone I know in the same situation. I think at the moment coming to terms with what might be the future is the main concern rather than having prophylactic double mastectomys and Bilateral Salpino-Oophorectomys. Maybe in a few years those might be in the forefront of my mind but for now coming to terms with the idea that my life won't play out the way I had planned is my biggest concern, I just thought that one day I'll decide to have children and just stop using contraception but I will be spending the rest of my life trying not to get pregnant "naturally". I have defintitely learned that 'life is what happens when you're busy making other plans"

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