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"Before I was told I was BRCA positive, I had very limited knowledge of what it was"

18 June 2018

Andrea Baker

Andrea is 40, and mum to three girls. She recently discovered both she and her youngest daughter are BRCA2 positive. 

“My story is a quite unusual, so I really wanted to share.

Our youngest daughter has a rare genetic syndrome, Cornelia de Lange syndrome (known as CdLS). As a result, she has undergone many different genetic tests. It was during one of these that it was discovered that Emma and myself both have BRCA2 gene mutations.

This was a huge shock and totally unexpected. Before the appointment where we were told we were BRCA positive, I had very limited knowledge of what it was. In fact, it was only because of Angelina Jolie that I'd heard of it at all.

At my referral appointment with the gynaecologist, I felt very much that I wasn’t a priority and that I was wasting their time. However, after reading up on my options and joining some Facebook support groups I felt for me, at almost 40, it was the right choice to go ahead with preventative surgery. I asked to be put on a list for a bilateral salpingo-oophorectomy (BSO). My operation date came through quite quickly, but unfortunately it was then cancelled after waiting in the theatre ward all day. 

I had to chase up a new date and the operation happened almost a month later.

I was so scared and nervous. The trapped wind/gas was horrid!

" Raising awareness and fundraising towards research is really important to us as a family."

Andrea Baker

It has all been a bit of a whirlwind since the day I was passed information leaflets at that appointment, to a year later having had my ovaries and tubes removed and a double mastectomy with reconstruction.

I'm so very thankful that we have our amazing NHS.

Having my ovaries removed and going into early surgical menopause has been tough. Although I was already in early menopause before I had the operation so had experienced some of the mood swings, sweats, hot flushes etc., it was after the surgery that it really hit me. My GP did prescribe Prozac but I decided not to take it. I try to stay fit, eat fairly healthily etc but the weight gain is real! Even with dog walking at least two hours a day and running around after Emma.

Although it was a huge blow to find out, I'm so happy I have been given the chance to be proactive and plan for mine and Emma's futures.

With my daughter facing unknowns and with her disabilities, I really hope that when she's old enough, research will have advanced enough that there is another way forward for her.

Raising awareness and fundraising towards research is really important to us as a family.

I wanted to make myself a T-shirt to help get some awareness out there. These are now available to order through our small business, with £2 from each sale being split between 2 charities, Ovarian Cancer Action being one of them. Please feel free to take a look and place your orders here: https://www.facebook.com/BsClothingVinylAndDecals/"

Over 1,000 women a year in the UK could be saved each year if armed with the knowledge about their genetic cancer risk. Use our Hereditary Cancer Risk Tool to understand yours.