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Joanne’s Story

29 Sep 2014 by Krystal Barter
Joanne’s Story

My name is Joanne and this is my story.

For as long as I can remember breast cancer is something that has always been part of my life. With my mum and aunty both being diagnosed with breast cancer came the knowledge that at least two women from every generation had been affected by it going back as far as my great-great grandmother and her sister.

I first heard about the mutated BRCA gene around 2005 when my mum found out that she qualified for genetic testing but unfortunately it took a number of years to be completed due to lack of funding at the time. We received the news that mum was BRCA 1 positive in 2008 and that my sister and I were now also eligible to have genetic testing done. But at 32 I didn’t feel quite ready to know the results as I wasn’t sure what I would do with the information if it turned out that I too carried the gene, so in the end I decided that ignorance was bliss. It was that same year that I first discovered a lump in my right breast. It was at that moment when the realisation hit me that I too could potentially have breast cancer. With the discovery of a lump feelings of anger came over me as even though I knew of my family history and the fact that the importance of performing self-checks had always been drummed into me I had been fairly complacent and blasé. I felt embarrassed and disappointed in myself especially having to admit to the doctor that the breast lump could have been there for at least six months as that was when I would have last checked. Thankfully after having a lumpectomy my tests came back with the results of being benign. Needless to say I have been extremely vigilant with breast checks ever since.

I was introduced to the High Risk Breast Clinic at Royal Prince Alfred Hospital for six monthly check ups which included yearly MRI’s/Mammograms and six monthly ultrasounds. Being linked into this clinic and having regular screening brought peace of mind. I decided to have the genetic testing done with my sister when I was 34. Having my sister decide that she was having the testing done gave me the courage to join her. Deep down I felt that one of us was going be BRCA1 positive and if it was anyone then I would prefer it to be me rather than my sister, so I was shocked when we found out that we were both carrying the gene fault. I honestly did not believe both of us would have it and even though I thought I had prepared myself I remember thinking now what. I was completely lost as to what I should do with this information. I remember my mum being devastated at the news as she kept telling us it was all her fault. Looking back I feel that more support in the way of counselling should have been available for my mum during this process.

Over time I decided that I would undergo a preventative bilateral mastectomy/reconstruction and preventive bilateral salpingo-oophorectomy. My sister having made the same decision once again gave me the courage to put my plan into action. So in May this year at the age of 36 I underwent surgery for my bilateral salpingo-oophorectomy. I was completely at peace with my decision as my husband and I had decided that our family was complete quite some time ago so I was shocked to find myself becoming overwhelmed with emotion as I was waiting to go into theatre. I’m not sure why but it was almost like I was mourning the loss of my ovaries.

For me nothing could really prepare me for the rollercoaster ride of emotions that my BRCA journey would take me on. I must admit that the knowledge of being BRCA positive has brought about a certain amount of anxiety as with every new lump, twinge or discomfort I have found myself immediately thinking the worst before I am able to rationalise and put it into perspective. That is why I feel that preventative surgery has been the best option for me and my family. Having said this I also feel that I am extremely fortunate knowing that I am BRCA positive, which has enabled me to be in control of my own health and has given me the opportunity to dramatically decrease my chances of being diagnosed with cancer so that I will not have to endure the same fate as my mum who has fought and won against breast cancer twice but is now unfortunately fighting metastatic ovarian cancer.

Discovering the Pink Hope community has been wonderful. I am amazed by the courage and strength of the women in our community who are more than willing to offer their support and personal experiences. My only wish is that I found Pink Hope earlier when I first found out about being BRCA positive. The next stage of my journey is to undergo my preventative bilateral mastectomy with DIEP reconstruction on the 26th August this year. I am rather nervous about this one mainly due to knowledge that it is such a big operation but on the brighter side I am looking forward to the bonus tummy tuck that you get especially after 2 kids.

I am fortunate enough to have the support of a wonderful family and I do believe that whist I wish my sister Nicole didn’t have the BRCA gene fault; she has been such an inspiration to me that it has made the journey a whole lot easier not to be doing it alone.

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