Sophie’s Story

29 Jan 2019 by Krystal Barter

My name is Sophie and I am 32 years old.

I’ve been having routine MRI’s since I was found to have BRCA2 at the age of 26. The catalyst for me discovering I had the genetic mutation was my cousin who was diagnosed with breast cancer at 36. Further genetic testing revealed that it originated on the paternal side of our family—my uncle and grandfather both being carriers and both having had breast cancer in their sixties, and then finally my father testing positive for the gene and passed onto me.

In April 2017, I was due to leave the country and relocate to Europe so I moved my routine MRI appointment up to ensure I had my scan before I left Australia.

 

 

 

 

 

 

 

 

 

 

Within 2 weeks of my MRI scan I was diagnosed with 3 tumours in my right breast and within 3 weeks I was on the operating table. To say April was a big month for me – would be an understatement.

My doctors discovered that they were hormone positive tumours in my right breast which was a good thing because it meant that they would respond oestrogen suppressing treatment. Given the short time frame between diagnosis and surgery, I didn’t have time or the option to freeze my eggs. This was not conflicting for me at the time as I was only focused on surviving.

During my initial biopsies, a suspicious lymph node was found but the test came back inconclusive, meaning the need for chemo was not yet on the table. I decided to have a double mastectomy straight to implant because at the time I felt like it would have been too hard to wake up with nothing and I was already dealing with so many big changes in such a short time.

Unfortunately the implants failed which meant I had to have them removed in May, 2017. My implants were then replaced with tissue expanders and my own latissimus dorsi muscle & skin grafts were taken to cover any necessary areas. During this same operation, my breast surgeon performed a radical dissection of my lymph nodes and found that 6 out of 14 had cancer. My implants failing had been a blessing in disguise and I was able to start chemo straight away after this discovery.

Chemo was 6 months with monthly injections of the ovarian suppressant ‘Zolodex’ which put me into chemical menopause to ensure my ovaries were protected against the toxins from chemotherapy. Throughout my treatment I tried to stay active – my thoughts around fertility faded because I was living day-by-day at that point. During Christmas 2017 I had to have radiation from December through to February.

I had multiple surgeries to put the implants back in which meant constant fat grafting and and scar revisions which after previous surgeries made my body look almost like patchwork quilt! I thought I’d go through cancer but at least get nice boobs, but I guess life had other plans.

I started a digital diary online so that I wouldn’t have to constantly repeat how I was feeling to friends and family – they could simply look online and know that it may have been a day where I needed more quiet or a day where I needed support. It helped them to understand what I was going through, avoid asking unintentionally hurtful questions and it helped me to express how I was feeling in a positive way.

Last year, nearly 8 months after I finished chemotherapy I finally had my period. I decided to do a round of IVF which I just finished a month and a half ago but they didn’t get many eggs. This was my one shot at gathering eggs prior to switching off my ovarian function as part of my treatment.

I have to go back on the ovarian suppressant now for the next 5 years which means that I will not be able to produce eggs in that time nor conceive. It’s a pretty harsh reality being in the prime child bearing years, but I’m thankful an opportunity exists to help prevent cancer from spreading to my ovaries should any cancer cells remain.

It has been a hard journey but I am thankful for the chance to spread the message that it’s important to be aware of your health, to know your family history and always be informed. BRCA mutation carriers can come from BOTH your mother and fathers side of the family and men can inherit this gene and pass it down too. Be vigilant and aware and always #knowyourrisk

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