Brooke's Story - 'I inherited the BRCA1 gene'

02 Aug 2022

My name is Brooke. I am 33 years old. I inherited the BRCA1 gene from my mother: it runs on my mother’s father’s side of the family.

My mother was 40 years old when she was diagnosed with triple negative breast cancer in her left breast – it had also spread to her lymph nodes. She had the breast removed. Ten years later the cancer was found in her right breast. Thankfully, they caught it early and she had the breast removed, followed by cancer. She is fine and healthy now.

Her illness left an impact on me. I had quite a lot of health anxiety growing up, worrying about my mother’s diagnosis and what that would mean for me. I didn’t want my mother to feel like my anxiety was my fault so we didn’t talk about it much.

When I was 22 years old I discovered some lumps in my breasts. They were cysts, but the doctor recommended my mother and I both have genetic testing done. We were both positive for the BRCA1 gene.

I decided straightaway to have a preventative double mastectomy and reconstruction done (DIEP surgery). I certainly knew I wanted the operation before I had children.

My GP was incredibly good and she encouraged me to go down that path. I did have a lot of anxiety around my operation. I’d always assumed I’d get breast cancer, and this worry had caused me a huge amount of anxiety through the years. I was anxious around ultrasounds and MRIs and I knew that I wouldn’t be able to face a future of constant tests and scans. The only path for me was to have a double mastectomy. The surgeon used my stomach fat to make my breast tissue; my nipples were completely removed and new nipples were created for me. The operation took 12 hours. The physical recovery was difficult. I had to retrain my stomach to allow me to sit upright. My new breasts were manageable, but the stomach area took a lot of recovery and patience. There were a lot of drains involved! It took around 6 – 8 weeks until I felt ‘normal’ again. I was studying and working at the time, and took the time off to recover.

I’d just met my partner, now husband. He was and always has been incredibly supportive of my decisions.

I had my son four years ago, soon after we got married. My pregnancy was challenging: I had hyperemesis for the entire pregnancy and as my body grew to accommodate the baby, it was incredibly painful as the scars and scar tissue stretched. I couldn’t feel the baby kick or move particularly well, due to the scarring, so I was in and out of hospital being monitored.

It wasn’t a great time in terms of my anxiety around my health. After his birth, I was unable to breastfeed due to my mastectomy and reconstruction. I ended up with post-natal depression which I’m only now able to talk about. It was a difficult time. All my life I’d wanted children, but the reality was quite different. I felt like I was on borrowed time to have a child, as I wanted my ovaries removed by the age of 35. We’ve decided not to have any more children. I have my ovaries screened every six months, along with a blood test to check for tumour markers. Before each test I am petrified. I’ve said that I will continue to do the scans until I can’t cope any more and then I’ll get my ovaries removed. I get the blood test first, so that the tumour market is okay, so the ultrasound is protocol. Thanks to the amazing staff at the clinic, who help support me through any panicky moments, at the moment I can manage it.

My husband is so protective, I feel very supported as we navigate this stage. He accepts me for who I am, and what my body looks like: I have stomach scars from my tummy tuck, caesarean scars, breast reconstruction scars. But I’m grateful for those scars; they give me a peace of mind I wouldn’t have otherwise.

I like to share my story with people, so on Pink Hope’s Lipstick Day I’ll share it on social media and encourage people to research their own family history for breast cancer and remind them to check themselves. Knowledge is power. People are terrified of cancer, but it’s important to know your body and what’s going on.

If I can share my story and help others, then good is coming out of what I’ve been through. Pink Hope is an amazing place for women to help other women. With the community and forums, you never feel like you’re alone – someone there will have travelled a similar journey to the one you’re one and be able to help and guide you. No matter how supportive and understanding your family and friends are, it’s the experience and stories of others at Pink Hope which helps.

My lipstick is ‘Resilience’ – to me it means to get back up again whenever you’re down. I’ve had a lot of ups and downs with my health, so I know how important it is to arm yourself with the necessary tools in order to pick yourself up again.