Gemma Wells, 24 from Edinburgh, was diagnosed with a BRCA1 altered gene. Now she supports other women in her position through Breast Cancer Care’s Someone Like Me service.
When I had a double mastectomy with reconstruction in January 2016, I felt as though I had little support.
My mum had breast cancer when I was about 12. Then her cancer returned when I was about 20. The second time my mum was diagnosed I had to be so strong, for my mum and my little brother.
She was offered genetic testing, and tested positive for the altered BRCA1 gene. As a result I went for the test too.
At the time I’d never heard of it. It was starting to be in the news with Angelina Jolie, but I still didn’t really understand. I thought I’d have the test and they’d tell me it’s all fine. When they told me I had inherited the altered gene I thought: but I look fine, I feel fine, there’s nothing wrong with me.
I found out about the BRCA1 gene – which significantly increased my risk of breast cancer – in March 2014 aged 21.
I found a lump
I was told about different solutions to help manage my risk, but because of my age nothing was really relevant at the time. I probably couldn’t have surgery until I was 25, or screening until I was 30.
I tried to forget about it. But every time I heard the word ‘cancer’ I thought: Maybe today is the day I’ll get it. It felt like cancer was everywhere and I couldn’t go through life avoiding it.
Then I found a lump in my breast.
It turned out to be a cyst, but I realised had to make a decision. It felt like a sign.
I met with a surgeon and saw a psychologist. I had so many different appointments. They told me all the positives as well as the negatives – the nasty stuff – to help me make up my mind. I was very mature for my age so they realised I knew what I was doing, and they agreed to do the surgery.
I had the surgery aged 23. It was absolutely the right decision.
Using my experience to support others
I had a lot of support from family, especially my mum. She saw it as her own fault, and while she wanted me to have the surgery she didn’t want to push me into anything. My partner was really supportive too.
I didn’t really talk about it to other people though. I really wanted someone who didn’t know me but who knew what I was going through, who could answer all my questions – like could I ever wear a bikini again?
After my surgery I wanted to support other people, so I contacted Breast Cancer Care. I started as a Someone Like Me volunteer, offering one-to-one telephone support, last April. I share my experience of having a BRCA1 diagnosis, but I’m also there if anyone whose mum has breast cancer wants to talk.
Before becoming a volunteer I never really spoke about my experience. I avoided the subject. It’s made me really confident in talking about it, and now I’m really proud to because it has a positive effect on other people.
To anyone newly diagnosed with an altered BRCA gene, I’d say take time to do what’s right for you. And go out and look for the support.
The surgery was not as bad as I thought it would be. I thought I’d never see the light at the end of the tunnel, but one year on I’m absolutely fine. I may get frustrated about little things. But when I take a step back I realise it was worth it.
If you're concerned about your family history, you can read our information on family history, genes and breast cancer.
Content created April 2017; next planned review 2019