Sarah
My story starts very suddenly when I was diagnosed with breast cancer in August 2006.
Compared to most of the women on this website, I am very lucky in that I don’t have any family members who have had breast or ovarian cancer and I haven’t had to watch people I love pass away to these awful diseases. Therefore being diagnosed at 29 years old was a big shock. The cancer was very early stage, I had no lymph nodes involved and my tumour was only 1.2cm. Because of my age and the fact I had triple negative aggressive grade 3 cancer, I was advised to undergo chemo and radiotherapy. Once that was all over I was told not to try getting pregnant for 2 years as my chance of a relapse was much higher in the first 2 years. 4 weeks after finishing my treatment I found out I was pregnant! It honestly wasn’t planned but I suppose because I had been told that chemo may stop me being fertile(we even froze embryos as a backup) we just were a little careless!!
Once Mikayla my daughter was 6 months old I started thinking about whether I did have a genetic mutation. I did some research and found out that triple negative cancer is common in women with BRCA1 mutations and families with Ashkenazi Jewish backgrounds are also prone to have BRCA1 mutations. My grandmother on my Dad’s side was Jewish from Lithuania. I called Peter MacCallum and they sent me all the forms to fill out. It took me about 2 months to get all the info as all my family are in the UK. My Mum has a huge family however my Dad has a very small family. My Dad’s Dad died before I was born & his sister died when she was 40 from MS. My grandmother died not long after My Dad died many years ago so that only leaves his Brother who is in his 70’s. Thankfully he uses email and managed to get me most of the information I needed. Peter Mac called me almost straight away to come in for counselling and testing and although they told me it could take up to 4 months for a result they called me after 2 months to come and get the results, it wasn’t a surprise that I had a BRCA1 mutation. We believe the reason I am the first one in my family to show any signs of the mutation is due to my Dad’s family being very small and my Dad’s siblings never having their own children. I am literally the first women (except my Aunt who had MS) to be born since my Grandmother. We also think that one of my Grandmother’s sisters may have had breast cancer but it’s very hard to get any information now as there is no one to ask.
I found out about my mutation in December 2008 yet it took until I had a check up in August 2009 to realise that I am just a ticking time bomb. With my odds of getting breast cancer again as high as 40-60%, I’m crazy to think that screening is adequate. At my check up last year they found a lump they wanted to biopsy and while I was waiting for the results I made my mind up to get a mastectomy. Thankfully that lump was benign. I had my bilateral mastectomy and reconstruction in May 2010 and it went so much better than I expected. Within 6 weeks I was back doing everything I was previously including running and pilates. As for my ovaries well that’s the million dollar question right now. I worry quite a lot about ovarian cancer since it’s almost impossible to screen for however I don’t want to give up my chance of having any more children. The problem is I’m not quite ready to have any more so I’m just crossing my fingers that the stats are correct in my case and my risk doesn’t start to increase till I’m 40.
Thanks for reading my story and thanks to Krystal for starting this amazing organisation and website as it’s an incredible resource for women in our situation.
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