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Lisa’s Story

24 Sep 2014 by Krystal Barter
Lisa’s Story

My name is Lisa. This is my story.

My name is Lisa, I’m 37, I live in Croydon, Victoria and I am married with two kids, Thomas 10 and Elizabeth 9. I have been married to my wonderful husband Rob for 12 years.

In 2001, at age 20 I found out I am BRCA2 positive. This wasn’t so much a surprise, nor shock but a confirmation in what I already felt I knew. I had inherited the BRCA2 gene mutation from my father. He died of bowel cancer in 1991, from the BRCA2 gene. Just six months after diagnoses. I was only 9 years old at the time. Dad’s sisters were all tested not long after and we found out they too carry the BRCA2 gene mutation. And so it seems my cousins also have the BRCA2 gene mutation.

I was under high risk surveillance at the Royal Melbourne Hospital for 8 years. That is MRI’s, ultrasounds, mammograms and physical check-ups on a 6 monthly rotation. I fell pregnant in 2008, and continued ultrasound surveillance whilst pregnant. My son Thomas was bone in June 2009. I amazingly fell pregnant again soon afterwards, and Elizabeth was born in October 2010.

In 2012, I had my double prophylactic skin sparing nipple removal surgery. I had expanders in for 6 months. Which felt like uncomfortable rocks! Then I had the expanders replaced with tear drop shaped implants. (So much more comfortable.) By 2014 my left tear drop implant had flipped (no idea how or why). Leaving the square shape of the implant to the front. My husband and I affectionately called it my “Picasso Tit.” It did look rather funny. I had to revisit my surgeon where I had further surgery to place round implants in, to prevent the implants flipping for a second time.

In 2015 I had further surgery to remove my fallopian tubes in order to reduce my risk of ovarian cancer. This was a small easy surgery in comparison to my breast surgery in 2012.

I joined Pink Hope after my surgery in 2012, after a breast care nurse came to visit me the morning after my surgery. She gave me a print out of the old Pink Hope website, and told me that these women can help you. I had no one to talk about this whole situation beforehand. I dealt with this burden all by myself with my husband. I lacked peer to peer support and understanding from women who had actually gone through this too. Once I got home from hospital, I had time to kill (6 weeks off work is a long time), I found the Pink Hope website and requested to join the group immediately. The women on the site, understood, had empathy, we joked, we laughed, we cried and they answered my questions. It was the best thing I had ever done to join Pink Hope.
Now in 2019, I am an Outreach Ambassador for Pink Hope, I attend all the events I can in order to help other women and their families who are in the same position I was once in. It’s my way of saying thank you to Pink Hope and those women who helped me. I am now lifelong friends with those women. I now travel around Australia and assist with the Pink Hope Information and Support Days.

My journey is not over yet. I’m nearing 40 years old. Which means I need to start looking at options regarding getting my ovaries out to reduce my ovarian cancer risk. And I need to start colonoscopies as my father died of bowel cancer. My genetic counsellors, breast surgeons and oncology team are all working on a plan. My kids are still young at age 10 and 9. As I had my kids naturally, I will need to have the conversation with them as they reach 18 years of age regarding their risk and when they should get tested for the gene mutation.

I talk to as many women as possible about their journey and their options. I’m always willing to chat to anyone about the road I have travelled.

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