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My BRCA1 gene story

From Ciara Priestly 

Ciara Priestly

When I was 26 I was offered genetic testing for the BRCA1 gene due to a family history of breast and ovarian cancer. I had the test and found it was positive. This meant my chances of developing breast cancer would increase from between 50% to 80% and ovarian cancer to 40%. I was offered the chance to have a yearly scan (beginning aged 30) or a phrophylactic mastectomy. This meant having my breasts removed as a preventative measure. I was devastated but felt that now I had this information I would be selfish to ignore it. I felt if I chose the scans I would always be worried they had missed something. I opted for the surgery.

After numerous appointments with consultants I hit a brick wall.  My consultant felt surgery was not the right option. He said I should enjoy my twenties and come back later. I was shocked but insisted it was a personal choice and would probably drive myself crazy with worry if I didn't have it done soon. They finally relented and my surgery was scheduled.

I had an MRI scan beforehand which was thankfully all clear. I proceeded to have surgery despite people thinking I was crazy, including my mum who couldn’t understand why I was having my healthy breasts removed because I might get cancer. The surgery went well.

Two weeks later I returned to hospital to have stitches removed. I was met with very sober looking consultants - still nothing twigged. I was told that when my breast tissue was sent to pathology they in fact found I had grade 3 breast cancer which the MRI scan hadn’t detected. I was shocked!

Everything moved quickly from then. I was scheduled for more surgery to have my lymph nodes removed. The prospect of chemotherapy hung over me like a black cloud. When I asked my surgeon if he felt it was necessary he replied ‘My main concern is to keep you alive. You are 26 years old and if this had not been found for another 6 months we could not have treated you. You’re a very lucky girl that you pushed us to have your surgery’.

I felt sick to my stomach. I had 2 babies who needed me. Soon I started my chemotherapy. It was horrendous. I was extremely sick and lost all my hair within a few weeks. My household was turned upside down but we managed to get through it.

When it finished I threw an ’end of chemo party’. We used this to raise money for Cancer Research UK. It was a very happy occasion to celebrate the end of treatment. Little did I know my journey was far from over.

As the BRCA1 gene affects ovarian cancer too, I was also being monitored for this. Two days after my end of chemo party I received a phone call from my consultant telling me not to panic. But my levels had shot up quite dramatically and I had to go into hospital the next day for a scan. However they couldn’t find anything. My consultant said ‘Taking into account what happened with your breast cancer I am not prepared to take any chances. I want to admit you for a radical hysterectomy. I was admitted soon after and thankfully everything went ok.

The last few years have been extremely difficult but I chose to tell my story to raise awareness of this gene and also show cancer sufferers are not always within the ages expected.

One great thing to come out of my experience is that I have started my own business. Whilst undergoing chemotherapy I found it extremely difficult to find attractive comfortable headwear so I decided to make my own. After many compliments and requests from other cancer patients, my business snowballed. At www.headscarvesbyciara.co.uk I offer people tailored pieces for special occasions as well as everyday headscarves.

I feel extremely lucky that I am able to turn a huge negative in my life into a positive.

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Updated: 12 December 2011