Renee’s Story

26 Jun 2018 by Krystal Barter

They say knowledge is power, ignorance is bliss.

Whilst I was always breast aware (knowing my paternal grandmother had passed in her 50’s from BC), I was not aware of the knowledge until recently (after my own diagnosis) of her original BC diagnosis in her 40’s, nor of my aunties diagnosis around the same age. Families come in all shapes and sizes and in this case mine was ‘odd’ shaped.

October 2017, bought about my own diagnosis and I now know the above. But the ‘odd’ shape was magnified when, in the process of my genetic testing, the Genetics Counsellor advised a female within my immediate family had tested BRCA1 positive in 2012 – 5 years ago! … unfortunately they chose not to share this with any other family members and therefore ultimately took a choice from me. Whilst I don’t blame anyone for my situation, and perhaps should have been more forthcoming in finding out our exact family history, I do struggle that someone of your own flesh and blood didn’t have the courtesy and respect to help educate not only me but our entire family of our risks- To allow us to have the knowledge and therefore the power to choose how far each of us wanted to look into our health and any testing/prevention.

I understand and feel it wouldn’t have changed my surgery (bilateral mastectomy with immediate reconstruction) as I was already breast aware – hence finding a lump at early stage, but it may have prevented the chemo treatment process and the huge shock of a cancer diagnosis at age 33.

I do not want BC to define me, but it will ensure that I know others don’t get left behind and my family’s risks are known, and they are given a choice I was not – not to mention anyone else around me that will listen.

I currently have 5 weeks of chemo left, and feel lucky that I have managed nearly 6 months of treatment with no great side effects, working mostly full time throughout. I also have been lucky to have access to the Paxman Cold Cap and have retained the majority of my hair enabling me to still run into people all these months later and have to break the news to them as I ‘look normal’.

 


I have a consultation with a Gyneacological Oncologist once chemotherapy is finished to discuss further the ovarian risk/treatment of the BRCA1 mutation and surgery. I also have embryos in storage or ‘children in the freezer’ as we joke after a mad rush to undertake IVF prior to treatment commencing.

The ending of 2017 and first half of 2018 has certainly been a rollercoaster, and no doubt the ride will continue thanks to the lovely BRCA1 gene, but whatever is next will hopefully be my choice.

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