I have always been aware of breast cancer as my Grandma had it multiple times during her life, but I didn’t know that there was a genetic link that could put me at risk. My Mum was diagnosed with pancreatic cancer at the age of 36 and it was then that we found out she was a carrier of the BRCA-2 gene mutation. I was 16 at the time and can remember thinking I should consider going through the genetic testing as well, but at 16 you’re still so young and I found it to be such a scary time so I buried my head in the sand. I did have a meeting with a genetic counsellor who explained the risk and potential outcomes of testing positive, including risk reducing surgeries; however, I decided that I would revisit testing when I was older and ready to process the outcome.
It wasn’t until 8 years later, at the age of 22, that I began genetic testing after doctors found a cyst on my ovary during a coil fitting; although it wasn’t cancerous, it was the scare that I needed to be motivated to look into my health more. Having lost both my Mum and Grandma to cancer, it was important for me to know my own risks now that I felt ready to face the facts. Over the following 18 months, I had 3 genetic counselling sessions which really helped me to understand the implications if I tested positive, as well as giving me a safe space to voice any concerns I had.
When I received my positive BRCA 2 result at 24, I felt ready and prepared for the result. It may seem odd but instead of feeling sad, I actually felt relieved when I found out. Obviously it’s not what you want to hear, but I was prepared to deal with it in a way I hadn’t been able to do at 16.”
Being given a positive BRCA 2 result was an overwhelming experience; you are suddenly very aware of the chances of developing breast, ovarian and pancreatic cancer. I knew that young people could get breast cancer but I wasn’t aware that genetics could have such a huge impact on the chances of this. I learnt that someone with the BRCA gene mutation is between 50-90% more likely to be diagnosed with breast cancer, than someone without the mutation. Although I had the knowledge to check my breasts on a regular basis, it wasn’t something I would do often due to not understanding the best technique or what signs and symptoms I should be conscious of. I took to researching online to educate myself as much as I could on signs and symptoms, how to check myself and understanding what to do if I noticed something abnormal. That’s when I came across CoppaFeel! – their resources were great at increasing my understanding, and hearing others talk about their experiences made me feel less alone.
When I first found out I had the gene mutation, I didn’t know that there were preventative measures that I could take to help reduce my risk of breast cancer. After having lots of conversations and exploring the different avenues, I was confident in a path I wanted to go down. I lived abroad for a year prior to finding out about my BRCA diagnosis and it’s something I had planned on doing again. Knowing that it was likely I’d have regular check up appointments and scans, I didn’t think living in another country would ever be possible unless I took my health into my own hands. I’d been to a few events at Future Dreams House with the BCRA Project, and one of those was a mastectomy ‘show and tell’.
Hearing other people talk about their mastectomy experiences and being able to see what my chest may look like, gave me the peace of mind and motivation to move forward with a preventative surgery.”
On the 12th May 2023, I underwent an elective risk-reducing double mastectomy. After weighing up the options, it was a no brainer; why live in fear of a diagnosis when I can do all that I can to reduce the chances and be able to live my life to the fullest? The moment I woke up from surgery I felt free. The things that once caused me lots of stress were suddenly not important – I thought ‘I can go travelling and live abroad without thinking I may need to come back to the UK and the NHS for treatments’ which was a huge relief. Despite my own (and others) concerns about having a mastectomy at a young age, I immediately knew that the surgery was the right decision for me. I was due to start work again post surgery, however with my new found sense of freedom, I wanted to jump on any opportunity I could get. The day I returned to work, I handed in my notice and began planning a 5 month trip to South America with my partner. I feel more driven to do the things I love, seek out positive experiences and live life to the fullest.
The mastectomy hasn’t removed all the risks of cancer associated with BRCA 2, so knowing there’s still a chance of a diagnosis, I’m going to see the world and not be tied down by fear.”
I really relate and empathise with others who may choose a different path with BRCA 2. Everyone’s journey is different, and 16 year old me wouldn’t believe that I made the decision I did. There’s lots of information out there and it can be hard to digest, particularly for those who may not see themselves represented within cancer support groups or healthcare systems due to age, ethnicity or background. I would encourage anyone looking to get genetic testing to speak to, or read stories from other people who have received testing or are exploring the options. It was a great source of comfort for me so I hope by sharing my story, I can be that for someone else.