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Joanne and Nicole’s Story

25 Jan 2016 by Krystal Barter
Joanne and Nicole’s Story

My name is Joanne and my daughter is Nicole. This is our story.

My name is Joanne. I always wondered why so many female members of my family were not around when I was growing up. I had no grandparents, and lost two cousins when I was a teenager. One to ovarian cancer, and the other to breast cancer. When I was just 20 years old, my mother was diagnosed with ovarian cancer. I was completely devastated. She passed away when I was 21, at age 52. My first son was just a baby. From this time, I was determined to be proactive in my quest to beat the cancer curse. Unfortunately, I was diagnosed in my late thirties with a malignant melanoma, and in my early fifties with bowel cancer, but I remained strong and determined not to let the cancer beat me.

I have been fortunate, if you would call it that, to have been diagnosed at early stages, and was hoping there was to be no third time lucky or unlucky. A few years ago, I was forwarded some information regarding a positive BRCA diagnosis of a distant family member. I spoke with my GP, who advised me to share this information with my family. I just had a feeling I would be positive, and was given the news I carried the BRCA1 gene fault.

I had a hysterectomy later that year, and was informed when the results came from pathology that I had pre-cancerous cells in my fallopian tubes. Three times lucky! I could not believe it. I was told by my specialist to buy a tattslotto ticket. Without the sharing of family history, I’m sure I would not be as well as I am today. Pink Hope has been a wonderful organization to be involved with. Nicole and I have made great connections with an inspirational group of women, and we have gained so much information from the conferences and social events we have attended. Thank you so much to Krystal and Pink Hope for all their support.

My name is Nicole and I am 28 years old. I first found out about BRCA when I was 24 years old. My mum had genetic testing and discovered that she carried the BRCA1 mutation. This meant that each of her children had a 50 % chance of inheriting the faulty gene. She suggested that we should all be tested. I was very scared and a little unsure about what BRCA was so I went online and did some research. The figures were frightening, particularly that I could have up to an 80% risk of developing breast cancer, and up to a 45% risk of developing ovarian cancer. I, my sister and brother all attended an appointment with a genetic counsellor, but I made the decision that I would wait until I turned 25 to have the test done. At the time I did not feel ready to be able to deal with the decisions I may have to make and challenges I would face if I was positive.

My brother and sister both had the test done before me and were negative, meaning that they do not carry the gene mutation. Even though my risk goes back to 50% despite my brother and sister being negative, I had this terrible gut feeling that I was going to be positive. I attended the session with the genetic counsellor with my partner. He has been incredibly supportive of me throughout my journey. I still remember the butterflies, and sinking feeling within my chest that I felt when I was told that I was positive. I burst into tears, and then the whole meeting began to feel surreal, I had to continually remind myself that I was positive. I was most worried about telling my mum. I knew that she would blame herself and would feel incredibly guilty. I didn’t want her to feel that way.

I was very selective about the people I told. It felt like very private information and I was worried about people not understanding. The worst feeling is having people look at you as though they think you are dying. Or when they tell you how sorry they are. I was trying very hard to look at the positive side. At least I knew this information and could do something about it. It took me a long time though to really believe that and to be able to tell people I carry the BRCA gene mutation without bursting into tears. My cousin, who is also positive, suggested that my mum and I join Pink Hope. That was the moment when everything changed for me. I was suddenly surrounded by beautiful, inspiring women who understood how it felt. I did not feel so lonely any more, and slowly became able to talk about the gene mutation. I started to tell some of my close friends and family.

Mum and I have attended some fantastic events held by Pink Hope, and met some incredibly inspiring women, such as Krystal Barter, the founder of Pink Hope. Watching her story and reading her book ‘The Lucky One’ made me feel much more confident, and able to come to terms with the gene mutation and what it all meant. I am under surveillance currently, having checkups every 6 months and yearly mammograms and MRI’S. Peter Mac have also been fantastic in offering these services to me free of charge. Without Pink Hope, and the support of my beautiful husband and family, I really do not know where I would be. If you know about any family history of breast or ovarian cancer please speak to your GP about the possibility of genetic testing.

It is also important to have a conversation with your family about your health. Our distant cousin, who is now a very important person in our lives, was the one who told us about the BRCA gene mutation in our family.

Without this knowledge it could have been too late for myself and my family, and we may never have uncovered the truth. Nothing is more important to me than my family, and I am so grateful that I hold the knowledge, and have the ability to change my future and to fight back against that horrible ‘C’ word.

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