PUBLISHED ON: 19 September 2018

Aimi’s mother and grandmother both died by the age of 36 from breast and ovarian cancers. Aimi tells us what it’s like to have inherited the faulty BRCA1 gene and how it’s changed her perspective on life.

Aimi with her daughter Rae

I wanted to live the life my mother and grandmother couldn’t

I’m sure almost everyone by now has heard of the mutations to BRCA1 and BRCA2 genes that increase the risk of certain cancers. They are responsible for around 20% of familial breast or ovarian cancers. I carry a faulty BRCA1 gene. In August 2013 I underwent a risk-reducing double mastectomy and reconstruction, and in 2017 I had a full hysterectomy.

It is this gene that has terrorized my family for generations. My mum passed away at 35 from breast cancer and my grandmother passed away at 36 from ovarian cancer.

I felt like it was happening to someone else

Since day one of finding out that I carried the same faulty gene, none of it has seemed real.

It wasn’t happening to me, it was happening to someone else. Someone else sat through endless appointments of intense genetic counselling, someone else had prosthetic nipple casts made, someone else disfigured her body, someone else underwent a full hysterectomy at the age of 34, someone else struggles with the never ending, tiresome, lonely menopause.

But this ‘someone else’ is also reminded everyday how lucky they are to have had the opportunity to do these things, in order to save her life.

My outlook on life completely changed

Like so many people, I was under the impression that checking for a faulty gene is just a case of taking a simple blood test. But it’s not as easy as that. That blood test is life-changing. I didn’t realise it at the time. In fact, I don’t think even now I realise it. One simple test can change your whole outlook on life.

If I sound bitter about it, it’s because I am. I’m angry, I’m sad, I’m frustrated that I have had to make these decisions. I’m angry that I no longer feel like me – I feel as though I have lost who I was before.

Adjusting emotionally has been the hardest part

Going through the operations was hard – I’ve gone through four breast ops and hysterectomy. But the hardest thing has been adjusting emotionally to it all.

Don’t get me wrong, I have definitely had my ‘Why me?’ moments, and I’ve cried a lot of tears, but I always try and focus on why I have done this – to live my life. Being a BRCA ‘mutant’ comes with a lot of baggage I guess, going through very similar operations and feelings to that of someone who has cancer, but we don’t have that diagnosis.

I feel guilty for having my baby girl

In 2016 I gave birth to my little girl, Rae, who really is my best friend. Part of me is wracked with guilt that I had a baby knowing I carry a gene that could potentially violate part of her life like it has mine. Believe me, every single day that blame creeps into my heart. But I know that I will be there, by her side, every step of the way – that’s something that my mum didn’t have the chance to do.

I have been lucky enough to be able to use my experience in a positive way. I watched the BBC3 documentary, ‘Kris – Dying to Live’ about the founder of breast cancer charity CoppaFeel, Kris Hallenga, and her experience of living with incurable secondary breast cancer. Afterwards, I instinctively knew I wanted to be part of this charity. I now volunteer for Coppafeel as a ‘Boobette’ where I don a giant boob costume and visit schools and colleges to encourage others to check their breasts and to try and educate them to know the signs and symptoms of breast cancer.

I’ve found confidence through sharing my story

It has without a doubt given me confidence to stand up and share my story and not be embarrassed. At our very first training session there were five of us, all young women, all there for the same reason, but with very different stories. There was a young girl aged 17, who had found a lump that had luckily had turned out to be benign, a young mother of two who had been diagnosed with breast cancer and was just getting her life back on track, a 27-year-old woman with secondary breast cancer and her best friend, and me.

I will never forget that day. It did turn into a bit of a counselling session – listening to each other’s stories, shedding tears. But it was that day that I realised how important and life changing my choices had been.

Charities like CoppaFeel and Breast Cancer Care are imperative for people facing these challenges – be it BRCA, a diagnosis, or even how to support a loved one or a friend.

I want to share my experience as a ‘previvor’

‘Previvor’ - such a strong yet confusing word. But this is what I refer to myself as now. For the last five years my life has changed more than I could have imagined, in both good and bad ways. A ‘previvor’ is someone who, like me, has an increased risk of cancer but has not been diagnosed with the disease.

I’ve never been keen on 'labels' but this one does do my journey justice, I think. In saying that, I would never try to compare my experience with someone who has been diagnosed with cancer. But for me, the word signifies strength, experience and knowledge. It’s what encourages me to share my experience and knowledge too, and to help spread awareness of the signs and symptoms of breast cancer.

 

If you have concerns about your risk of breast cancer, find out more about genes and family history.

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