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

Emma Noon ovarian cancer action blog post

Following her mother's three cancer diagnoses, Emma Noon decided to explore her family history and find out if she had a BRCA gene mutation. She shares her story.

My family is no stranger to cancer. Between July 2005 and January 2014 my mum had three separate diagnoses.

The first was a bolt out of the blue. Mum had been rushed to surgery with suspected appendicitis and a week later we were told she had peritoneal cancer. Shortly after, my grandmother was diagnosed with ovarian cancer.

Four years later mum was feeling a little under the weather, her periods were lasting longer and were heavier, and everything she ate made her feel full or sick.

This was put down to IBS but her annual check up with the oncologist proved otherwise. We were devastated to find out she had ovarian cancer.

Mum had a hysterectomy and no further treatment was needed and as the cancer was caught early.

I wanted to know my risk and began exploring my family history

It was difficult as my grandmother was adopted, and the only other instance of cancer was my great grandmother who died of skin cancer.

In January 2014 came another devastating blow; my mum had breast cancer. During the weeks that followed she underwent a lumpectomy and started chemotherapy.               

I visited my GP and asked for a referral to the genetics unit. She took some convincing but having three daughters I needed to know if they were at risk.

The genetics team refused testing as my mum hadn’t been tested for the BRCA gene mutation and had no intention of doing so.

In August 2015 I received a letter out of the blue asking me to contact the genetics team as they felt there was now an increased risk of cancer. I had the test and, during the four-month wait for results, I researched my options.

I decided preventative surgery was the best option for me

Emma Noon

I waited until after my honeymoon to receive the results and on 1 March 2015 I was told I had a BRCA2 gene mutation, 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. They were not happy to refer me to the gynaecology until 40, as that's when my ovarian cancer risk will increase, but they referred me to my breast surgeon.

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.

Emma Noon Ovarian Cancer Action blog post

I met with the breast surgeon who went through the surgery options, reconstruction and time scale, and on November 18 2016 I had a prophylactic bilateral mastectomy with immediate reconstruction under the pectoral muscles.

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