Jacqui: "Forewarned is forearmed"

Not long after she was diagnosed with breast cancer, Jacqui began to trace her family history which led her to discover she had a BRCA1 gene mutation and a sister she never knew. 

I was diagnosed with breast cancer when I was 50. I knew nothing about cancer, I believed it killed, chemo made your hair fall out and it always happened to someone else. How wrong I was! Although it’s scary, treatment is hard, and it changes you, there are improved treatments available and if caught early enough there is hope of these treatments being a success. On a lighter note, yes, my hair did fall out but by the time it happened my scalp felt irritated and I was glad to get rid of it. Although I did shock my grown-up kids when I had pegged a huge handful on the clothes line (later learning that this isn't recommended!) as I had read birds like it for their nest. Another positive thing is that losing your hair is a sign the chemo is working. Plus, you can get an NHS wig and they are actually pretty great. Any colour, style or length. A whole new identity. And when it grew back, I got wavy hair! Not everyone chooses to wear a wig and I respect that. I chose to wear one as I didn’t want to disclose my cancer to everyone just yet, and I didn’t want to be treated differently. 

When I received my diagnosis, they didn’t even use the word cancer; I was on my own and it all felt surreal. My daughter Rachael phoned me and asked if everything was ok. I said no, nothing more, immediately she got out of work and came to collect me. She hugged me and promised that we would get through this together. She was more than true to her word; she was solid gold to me. I couldn’t have coped without her.

I had chemo first. It was hard going. You need to prepare to be in the hospital for most of the day. We brought snacks, magazines and our phones to keep busy. No matter how hard it was, there was always somebody worse off. An elderly woman sat opposite me at one session and when she was finished, she got up and helped her husband who was in a wheelchair.

I had sepsis just over half way through my treatment. Thankfully I got through and discovered two other cancer patients in the same ward who are now good friends. When my surgery came about, I learnt that the chemo had killed the cancer, so I then had a breast reduction and reconstruction. 

During that time in hospital, I became friends with a lovely woman called Deborah who had the BRCA gene mutation, and would become a support to me in the future. Radiotherapy came next and then time to ring the bell to signify the end of treatment. You find out during cancer that your close set of friends can change dramatically as some people don’t know how to react to you. I was fortunate to have a close group of six friends, one in particular was a massive support especially with regular WhatsApp messages, and another helped me with my radiotherapy appointments. Later on I went to a weekend in Corrymeela for cancer patients current and past and made another great group of friends with whom we keep in touch, our own wee support group. I think it is important to have friends who understand what you are going through.

Sometime after my treatment I started to explore my family history again. I have always known I was adopted and I have an amazing relationship with my parents but there is always that part of you that wonders, like a piece of the jigsaw is missing.

Tracing my family history, I discovered that my birth mother had died of ovarian cancer in her forties. Having only recently overcome breast cancer myself, and finding I had family history of breast and ovarian cancer, led to genetic testing and discovering I had inherited the BRCA1 mutation from her. I had also found out to my great surprise and delight, that I had a sister!

I call her my lucky Penny. Technically she is my half-sister but we don’t bother with that. We’re only just over two years apart in age and we have a lot in common, especially our love of animals. Penny and I pieced together our family history and discovered our grandmother had breast cancer too and died in her thirties. My sister lives in Southern Ireland and has not yet been able to access genetic testing but she has requested it. It has also opened the gateway for other family members to be able to get tested. Along with my children, both in their twenties, and my husband, Penny has supported me through my recent preventive Bilateral Salpingo Oopherectomy (BSO) surgery that has helped me significantly lower the heightened risk of cancer my genetic mutation gives me. If I hadn’t met her, I wouldn't have known my history and would never have had preventive surgery, that’s why I say she’s my lucky Penny!

Many folk have never even heard of BRCA gene mutations. I feel more people need to be aware of this gene mutation and the risks, but also the positive sides and the preventive treatment options available. It isn’t a death sentence, it’s a warning. Cancer treatments work best when caught early, they can even be prevented if women are screened. It sounds daunting but forewarned is forearmed. 

Screening women over 30 for the genetic mutations that lead to ovarian cancer could save tens of thousands of lives. That's why at Ovarian Cancer Action we are calling on the Government to introduce BRCA testing across the whole population. If, like Jacqui, you are interested in learning more about your own genetic risks, click here.