Last year at the age of 25 discovered that I carried the mutated BRCA1 gene. This meant I had an 85% risk of getting breast cancer, not the best odds. Everybody actually carries the BRCA1 gene; it controls the growth within cells. The faulty version, however, means the cells can grow uncontrollably and, therefore, turn cancerous.
BRCA1 and 2 mutations account for 20-25% of all hereditary breast cancers and 5-10% of all breast cancers. These mutations also increase your risk of ovarian cancer up to 60%. These are really scary statistics to be faced with at such a young age, especially after I'd watch cancer tear through and destroy my once happy family.
All I could think of was losing my mum at 17. She was 51 when she died, leaving behind me and my two sisters behind. I kept saying to myself, 'I can't die at this age; I need to live for my children.' So, I got myself tested. If only it was as simple as going for your 6 monthly pill check at the GP.
This test entails lengthy counseling before the blood test is done; appointments with doctors and then finally the psychologist. The psychologist for me was the toughest part as she really went into my history and the time around when I lost my mum.
I could see her brain ticking and absorbing the information I gave, carefully calculating in her mind whether I was ready to take on such drastic, life changing surgery. She concluded I was ready, and at this point I was referred to a surgeon.
Questions asked by health care professions included:
How do you think you will cope with losing your breasts?
There is a chance you will wake up with no breasts if for some reason they cannot reconstruct you during the surgery, how do you feel about that?
Do you think you will get cancer?
Have you ever thought about killing yourself?
You won't be able to breastfeed any children you have, how do you feel about that?
All very fair questions, but in my mind all the answers were actually irrelevant, the breasts had to go. I couldn't live my life hoping I would be in the 15% who went unaffected by breast cancer; that was statistically a very slim chance that I wasn't willing to take. I lost my mum, grandma and great auntie to ovarian cancer all very young, evidence of the high risk related to BRCA1 mutation. It is real. And it was very real to me.
The average women faces a lifetime risk of 12% of breast cancer, mine was 85%. For those people who don't understand why I have done it I simply say, 'If those were your odds of winning the lottery, would you play?' I knew deep down I would always have a risk reducing double mastectomy which takes the odds right down to about 3%. However, this isn't the only option for women; some opt to have regular surveillance in terms of screening. For me, I just felt like this was endless hospital appointments when I could find a solution to a very big problem and begin to live my life to the full again.
I still have a high risk of ovarian cancer, which scares me more than anything due to my family history. I didn't want to have the two huge black clouds hanging over me, one will do. If I could eliminate one risk, by taking the action I did, I was one step closer to eliminating the lot.
If my mum had this surgery all those years ago I would still have her here to guide me. Instead, I have a memory box full of random items such as an old pill box and her hospital bands. To most people these might seem like junk, but to me it's all I have left of her. Now and then I go and sit on the floor and empty the box and read some of the notes in there and her old diary.
My mum put little notes in each day such as "Still feeling good". It breaks my heart to go through these things but it's the only way I can feel close to her. I know that she will have been 100% behind me in my decision to have my breasts removed and proud of how strong I have been. There have been many nights I've cried myself to sleep in pain or frustration and have wished more than anything she would just walk into my bedroom and sit on the end of my bed like she used to do.
By writing my blog I have managed to help other girls through this journey, as well as raise awareness of what a BRCA1/2 mutation actually is. The photos and struggles are real and anyone can relate to them.
I have also started a new venture nine weeks ago whilst recovering from my surgery. 'Drain Dollies' are bags for women following breast surgery, with 10% of the sale being donated to Genesis Breast Cancer Prevention.
Because of the NHS I now have a below population level risk chance of developing breast cancer. I have a much better chance of watching my children grow up, a chance my mum unfortunately did not get. The ticking time bombs have gone. I have two breasts that nobody would ever know have been through such a journey, a journey that has saved my life and I will be eternally grateful for.
They may have a few scars but they are scars that show determination and courage. I feel lucky to have been armed with knowledge I have and to have been able to act on it. I feel empowered that I made a life changing choice that in no way diminishes my femininity and confidence. I feel life comes with many challenges. The ones that should not scare us are the ones we can take control of...
