I was a Specialist Breast Care Nurse in the NHS for five years when I found out about my BRCA2 gene alteration. Usually, people are only eligible for BRCA testing on the NHS when they have a strong family history of breast/ovarian cancer or following certain cancer diagnoses. However, my test was a result of The NHS Jewish BRCA Testing Programme. Those of Jewish decent are 10 times more likely to have a BRCA gene alteration than the general population, and the NHS run a free campaign offering BRCA testing to anyone with at least 1 Jewish grandparent. My maternal grandfather was Jewish, and I decided to get tested.

On 21/8/2023 I received a letter. I believed it was my negative BRCA testing results; I was wrong: “Result: Gene fault (mutation) found in BRCA2.” I read that five times and it felt like everything around me disappeared. I knew about genetic alterations linked to breast/ovarian cancer and the implications. Sometimes as nurses, we know too much. My life had changed in that moment; I had difficult decisions to come.

After seeing a clinical geneticist, I learnt my risks were 80% for developing breast cancer and 17% for ovarian cancer. The average breast cancer risk is 14% and ovarian cancer is 2%, so I couldn’t ignore the significance. I was at high risk of developing breast, ovarian, and in my case, pancreatic cancer. Seeing my risks written down, made it seem real.

For my breast cancer risk I had the options of annual MRI and mammograms or start chemoprevention to reduce the risk by about 50%. However, I knew I wanted to have preventative surgery. So, at the age of 35, I made the decision to have bilateral risk-reducing mastectomies with implant-based reconstruction and underwent three operations in 2024. My risk of breast cancer went from 80% to 5%. I chose to have my surgery at the hospital I work at, with surgeons I trust, meaning I was a nurse and patient in my own department. There were times this was difficult as I didn’t feel I could just be a patient with emotions or fears because everyone knew me as Lindsey – the breast care nurse. I felt some feelings were irrational; I couldn’t justify them with clinical knowledge, and at times felt like I was going mad. What I was feeling was normal, but I felt like I should have “known better” as a nurse. Sessions with our clinical psychologist helped me understand the complexity of my situation and I learnt to let myself be a patient (sometimes). 

There is currently no effective screening for detecting ovarian cancer early. The only option to reduce risk is preventative surgery. With BRCA2, the risk of ovarian cancer doesn’t start to significantly increase until age 40. For BRCA1 the risk is higher (40-60%) and increases at a younger age. I have been advised to have my ovaries and fallopian tubes removed between the ages of 40-45. I’m 4 years away from having to start thinking about this, and the thought of having to deal with early menopause scares me, particularly as there is work to be done on managing menopause. I’m trying not to dwell on this, but am aware of the signs of ovarian cancer, and have a low threshold for seeing my GP and asking for tests if I have concerns.

My fertility is something I must think about before ovarian surgery. There is 50% chance of passing on the gene alteration in a natural pregnancy; I don’t have any children, so fertility options were discussed early on. As someone with a BRCA gene alteration and no children I could have IVF with pre-implantation genetic testing on the NHS. This would screen embryos and only those without the gene alteration would be used. This is only available on the NHS until the age of 40 and if I have a partner. Finding out I have BRCA2 has changed how I feel about my fertility and I’m now questioning whether I want to have children at all, especially as I am 36. Before BRCA, having children always felt like a natural option that I was in control of. Now it feels less of a choice. Having children would involve difficult decisions and fertility treatments which may not be successful.  

My family went on to get tested and sadly, my mum, sister, uncle and cousin all tested positive. Wider family in Europe, Israel and the US have been informed, and can have testing. It might not always seem like my BRCA diagnosis is a good thing but I’m a believer that ‘knowledge is power’ and ‘prevention is better than cure’. This diagnosis could save my life and the lives of family in the future. It hasn’t always been easy since my diagnosis but I’m glad I tested and I’m grateful to the NHS Jewish BRCA Testing Programme. Without it, I wouldn’t have known my risk, and I wouldn’t have had the opportunity to prevent developing breast or ovarian cancer. It is my hope that by sharing my story it will raise awareness about BRCA gene alterations and their implications, but also it may encourage those eligible to get tested and could save more lives.

Find Lindsey on Instagram @thebrcabreastnurse.