We all encounter tough choices in our lives. However, how we handle these challenges can help define who we are as people and shape our future. Echelon UK instructor Susanna faced one such choice when she discovered she had the BRCA 1 gene mutation.
A BRCA 1 gene mutation increases an individual’s risk for breast and ovarian cancer for those unfamiliar with the term. In Susanna’s case, she had an 85% chance of getting breast cancer and a 60% chance of getting ovarian cancer. After losing both her mother and grandmother to cancer, Susanna made the difficult decision to have a preventative double mastectomy and oophorectomy.
Susanna shared her personal experience of choosing preventative surgeries. This is her story:
How did you discover you had the BRCA 1 Gene?
Sadly when I was 16 years old, my mother was diagnosed with ovarian cancer, aged just 40; she died eight weeks later. Yes, just eight weeks. Ovarian cancer is known as the “silent killer.” The symptoms such as bloating, loss of appetite, and fatigue usually begin in the later stages. Unfortunately, by the time my Mum was diagnosed, it was Stage 4. Two weeks later, my grandmother (maternal) was also diagnosed with ovarian cancer.
My grandmother’s sister (Mum’s aunty) died of breast cancer a year before I was born. She was only 36 when she died and left behind two young daughters and a husband. That’s when I thought this MUST be genetic.
After realising this could be genetic, what did you do next?
In my late teens, my aunty and I went to see a geneticist. We went through our family history, and it was clear that there was a genetic link. Unfortunately, there were no blood tests available at this time, but we were both told that there was a 50% chance of carrying the gene.
For the next 17 years, I had annual scans on my ovaries and a blood test to check for cancer markers. Every test thankfully was clear, but the same thought came into my head each time, “What if I begin to develop cancer next week? It might be too late by the time I have my next scan.” So that worry was always there.
How did you manage that worry you had?
The years went by, I got married and had three beautiful children. I was told by a GP that blood tests are available nowadays to check for cancer genes. Wow, this was news to me! She urged me to discuss testing with the doctor, so I did just that and was referred to a geneticist.
How long after testing did you receive your results?
The letter came six weeks after a genetic specialist arranged the blood test. It was confirmed — there in black and white, I had the BRCA 1 gene mutation. Even though I expected it to be positive, it still came as a shock. I cried.
After getting the results, what did you decide to do?
I knew what this meant and how high my risk of cancer was. I thought long and hard and felt I had no choice but to remove my ovaries and have the preventive double mastectomy.
Can you tell us a bit about going through preventative surgery?
Around springtime 2018 I was ready to get the ball rolling. I met with the breast surgeon again to tell her I wanted to go ahead with the surgery. We decided to go for a nipple-sparing mastectomy which includes placing implants under the muscle and mesh. After a long chat, she booked me in there and then for 12 weeks’ time. I had meetings with breast care nurses and counsellors to make sure I fully understood about the procedure and that I was mentally ready. They were fantastic and supported me throughout my journey.
Post-surgery, what happened?
The morning after my surgery the surgeon came to see me to tell me that the operation went well. There were no complications, it was a success. The healing process both physically and mentally took some time but it was worth it.
You were so brave to do this Susanna. Is there anything you’d like to share with anyone in a similar situation?
For anyone out there that is in a similar situation, I hope that my story has helped you in some way, and please feel free to ask me any questions. You are not alone there is so much support out there.
I must add, I am so grateful that science has come such a long way, being able to have genetic testing that can give a fairly accurate percentage of future cancer risk. It allows women the choice to have preventive surgery or even to be monitored under closer scrutiny, which is a real plus in the battle against this awful disease. A choice many women such as my Mum and Grandmother regrettably were not afforded.
We are grateful to Susanna for sharing her experience. We hope that her story may inspire others to examine preventative measures — both invasive and non-invasive. As she explained, Susanna chose preventative surgery after careful consideration and discussions with medical professionals. If you feel you are at risk, we encourage you to speak with your doctor, and for more information on Breast Cancer Awareness please visit breastcanceruk.org.uk
Susanna teaches Connect bike classes on the Echelon Fit app. Sign up for an Echelon United Membership to join Susanna for a special Breast Cancer Awareness dual ride on October 20 at 6pm BST with fellow Echelon UK instructor Demi.