Lilly’s Story

17 Sep 2014 by Krystal Barter
Lilly’s Story

My name is Lilly and this is my story.

My story starts when my Mum was diagnosed with breast cancer in 2002. She was lucky that she was called back after her mammogram was reviewed three months after it was done and they decided to do a biopsy which unfortunately was positive for breast cancer. Mum underwent a lumpectomy and lymph node clearance followed by chemotherapy and radiation therapy. She was officially in remission six months later. Then in 2009 she developed symptoms of a urinary tract infection. Frequency of urination and abdominal pain. The GP gave her some antibiotics and sent her on her way. The symptoms didn’t clear up and she returned to the doctor fearing that she had cancer. The doctor dismissed her worries and told her she just had the Winter blues and needed a holiday. Finally she saw a different doctor that organized an abdominal ultrasound. This showed two masses. One on her ovary and one attached to her bowel that was pressing on her bladder. Fast forward a few months and we were told she had ovarian cancer that had metastasized all over her abdominal cavity. She was offered palliative chemotherapy which put her into remission for approximately a year.

My mother had no other relatives with cancer. Both her parents died young of unrelated causes. Mum only had a small family but she had a feeling that she my carry a breast cancer gene. Mum found out in October 2012 that she was BRCA1 positive, just one week before she died. She encouraged her four children to be tested and her only sister. My older brothers chose not to be tested. Myself, my sister and my Aunty chose to be tested and in January 2013 we received the results and I was the only one to test positive for the BRCA1 gene mutation. I chose to wait one year to save money, sick leave and annual leave to have my preventative bilateral mastectomy and reconstruction. In June 2014 I had my surgery. It wasn’t without complications. I got a serious infection and lost my expander on the right side. Then 6 months later my left expander burst whilst I was at the gym. January 2016 I finally had my implants put in and have been blessed with no further complications.

I am currently 37 years old and although I have been encouraged by the Gynaecological Oncologist to have my ovaries and fallopian tubes out ASAP, I will wait until I am 40. I have other factors to take into consideration such as a high risk of heart disease from my father’s side. The oestrogen from ovaries provides protection from heart disease in women. There isn’t a lot of information of the cardiac protection provided by synthetic hormones. My GP said he would hate for me to go through all of this prevention to then die of heart disease. So this is where I am at currently!

I’m glad that I have had the support of Pink Hope. I’m glad my Mother pushed hard to get tested for the BRCA1 gene fault to allow me a chance at a cancer free life. I’m grateful to my wonderful husband, family, friends and medical team for their care, kindness and love.


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