Julie’s Story

13 Nov 2018 by Krystal Barter

My name is Julie and I have the faulty BRCA1 gene passed down from my father Frank. I sigh with grief as I remember my big strong Dad, who died a very painful sad death from prostate cancer age 65. Both of my father’s sisters had breast cancer and both passed away, I believe in their late 50s or 60s.

So how did this all come about! In December 2011 my cousin Maureen on my father’s side, with whom I have not had any contact with since we were children phoned my mother to inform her that she had tested positive for the faulty BRCA1 gene. She suggested that my sister and I might get tested. Since then, she and her sister have passed away from breast cancer.

I went to the Genetic Counsellor Sian at Wollongong Cancer Centre, what a beautiful person, filled with information that I had no idea about. I knew the increased risk of breast cancer associated with the BRCA mutation but I had no idea about the high risk of ovarian cancer. I had my blood test that afternoon and in my heart I knew that it would be positive. 4 weeks later, February 2012, BINGO I tested positive and you can believer there were lots of tears with thoughts like OMG!

I got a referral for a salpingo-oophorectomy that day and drove home in disbelief. I have been extremely healthy in that area and have always thought how lucky I was not having any issues. Now it was all going! I joked a bit about how “GOD” got it so wrong with the reproduction area. It would make a lot more sense if it all just shrivelled up after its use by date.

It took me 3 weeks to begin to absorb all of this information and to start things rolling including a few more tears and some very restless nights. My family and close friends have always been very supportive. I consider myself a lucky woman to have so many people that love me and care about me.

I had the salpingo-oophorectomy in March 2012 and all was well. The pathology test came back NO CANCER! But there were pre-cancer changes happening, I was relieved to have that behind me.

Next was the double mastectomy. Which was extremely daunting for me but my “LET’S FIX THIS!” attitude had set in. I cannot believe how much I thought about this, the thoughts consumed me daily. In October 2012 I chose to have a nipple sparing prophylactic bilateral mastectomy, which meant straight to implants! I had very little issues except with fluid build up which had to be syringed 3 times a week for 3 weeks after leaving hospital. I had my final check up with the breast surgeon in April 15 and I was completely fine!

Looking back on my decision to have preventative surgery, to me, it was a “NO BRAINER”! I believed even before I knew about BRCA1 that I would someday have cancer. Now I had a window of opportunity to prevent that happening! I choose to live, I choose to not be sick, yes I still had surgery but I got off lightly! Pink Hope’s website was a great help through everything and I thank all the wonderful women that have shared their stories filled with BIG decisions, bravery, hope and survival.

I have a beautiful and caring 24 year old daughter Samantha who had a 50/50 chance of having the faulty gene. She chose to get tested and the results came back positive. There were tears shed and guilt from me but through it all she was so gorgeous and kept reassuring me that she’ll be fine. Our relationship has strengthened from facing these fears and challenges together.

She is not rushing anything but her wicked sense of humour kicks it sometimes and admits she will enjoy new boobs in her 40’s. She will always be an inspiration to me.

When my Sister Vicki tested negative, I cried with relief. She has 2 daughters and 4 grand-daughters and it stopped with her!

Fast forward 2 years, I didn’t get off so lightly after all.

I never thought I would get a phone call saying I had cancer. It couldn’t be possible, I already had all my preventive surgeries.

In February 2017,  I was diagnosed with PPC Primary peritoneal cancer – a relatively rare cancer.

The symptoms of peritoneal and ovarian cancer are similar, common, vague and nonspecific. They can include abdominal pain, bloating, bladder issues and back pain. My CRP blood results were high indicating I had an infection.

I had a long surgery to remove the tumours. I had 5 areas of peritoneal cancer. With some tumours dangerously close to vital organs. The surgery removed all of the lesions, I had 4 months of  chemotherapy and a PARP inhibitor trial.

I recently passed my 1 year date from when I finished the chemo. I am still on the Blind PARP inhibitor trail drug and I am feeling well. My CT scans and bloods are good!

2017 was a big year for me. I had cancer, surgery, chemotherapy, I lost my beautiful Mother in May and turned 60.

 

First on my list every day is gratitude for my best friend and husband Steve. We have changed together from this experience. Cancer can take so much from you, from your care free existence. You realise you are not special, or exempt from anything, that you can’t protect yourself from everything and you can try your best but you’re just another person experiencing one of life challenges.

Nothing is permanent but I am blessed to still have time to spend with my loved ones. And I know that we will continue to look after each other when the next challenge comes along.

Signing off with hope in my heart for better things to come.

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