"The hardest part for me was talking to my children about the BRCA mutation"

Emma Noon ovarian cancer action blog post

Emma Noon shares her story, from finding out she has a BRCA gene mutation to the preventative surgery that followed. 

"Due to a family history of cancer I was tested to see if I had a BRCA gene mutation and, during the four-month wait for results, I researched my options.

I decided preventative surgery was best for me if the result was positive, on 1 March 2015 I was told I carried a mutation in the BRCA2 gene, which put me at an 85% lifetime risk of developing breast cancer and around a 20-30% lifetime risk of developing ovarian cancer.

I requested a referral to both the breast and gynaecology units. Genetics weren’t too keen to refer me to gynaecology due to being under the age of 40,the risk minimal up until then. During the appointment I didn’t cry or second-guess my decisions, I knew what I wanted to do. The days and weeks that followed were a rollercoaster of emotions and fear. First I went for a breast MRI and luckily that was clear. The next stage was a meeting the clinical psychologist who cleared me for surgery after discussing my decision and assessing that I understood the implications of surgery.

In November 2016 I underwent a prophylactic double mastectomy with reconstruction. I thought this would ease the anxiety having reduced my risk. Unfortunately the worry shifted from breast cancer to ovarian cancer. I struggled to shake the panic of the silent killer so my breast surgeon referred me to gynaecology.

Emma Noon Ovarian Cancer Action blog post

In August 2017 I met with the gynaecology consultant and we discussed the surgery to remove my fallopian tubes and ovaries. However due to quite a history with gynae problems he felt it was best to have a total hysterectomy and bilateral salpingo- oopherectomy. This took place in October 2017.

Rather incorrectly I assumed the recovery would be easier than the mastectomy. No one prepared me for the pain of a sneeze, the sleepless nights and hot flushes while finding the right HRT. Mostly I’ve fought an overwhelming sense of grief having lost my femininity, my breasts nothing more than nipple less silicone mounds and my reproductive system gone. 

How wrong was I to question my body and my femininity? I’ve put my body through so much and it’s never given up on me, I am fit and well and embracing the scars. 

Still the hardest part for me was talking to my children about the BRCA mutation. Thankfully they were aware of the concept of passing on eye colour through genes.

It’s given them the chance to ask questions and not feel as frightened. I’m so proud of how they’ve handled everything!

For anyone out there with a family history I’d advise writing it down in a tree including what cancers you’ve had, what age, and how they relate to the generation before. Talk to your GP and don’t be afraid to ask questions."

Are you worried about your family history of cancer? Visit our BRCA hub for information, support and advice, or email Jo@ovarian.org.uk