Yulia: "As a busy professional and mother, cancer was not something I had planned for."
Yulia went through genetic testing after her breast cancer diagnosis, and learned that she carries a faulty PALB2 gene. These gene faults (or mutations) increase the risk of several cancers, including ovarian cancer. She is now dedicated to supporting people impacted by cancer and their families as well as advocating for awareness and better understanding of genetic cancer risks.
Living with breast cancer and the PALB2 gene: a lifelong journey
In January 2019, my life took a sharp turn when I was diagnosed with Stage 2 ER+ breast cancer during a routine mammogram. As a busy professional and mother, cancer was not something I had planned for. Despite a family history of breast and prostate cancer, I never anticipated it would happen to me, nor did I expect to discover I carried the PALB2 gene mutation—a discovery that would deeply affect not just my health, but my entire life.
The diagnosis: a sudden shock
The moment I heard the words "you have breast cancer," I felt my world collapse. I remember walking towards Oxford Street tube station in a daze, telling my husband the devastating news, and then collapsing in tears when I reached home. That night, we told our children, aged 13 and 18 at the time. Their stunned silence only deepened the emotional impact of the diagnosis. We didn’t know what the future held for us as a family.
The initial shock was overwhelming. It wasn't just about the cancer itself, but about everything that followed—the numerous tests, the treatments, and the profound emotional toll. The fear of the unknown was paralyzing, especially when I learned about the PALB2 gene mutation two months into my treatment. It was another layer of complexity that I wasn’t prepared for.
The journey through treatment
My treatment began with 16 chemotherapy sessions, followed by a bilateral mastectomy with immediate DIEP reconstruction and 25 radiotherapy sessions. It was gruelling, both physically and emotionally. Yet, what made it bearable was the unwavering support of my family, friends, and colleagues. I set up a WhatsApp group to keep everyone updated, and their constant encouragement became a lifeline. Many joined me during chemotherapy sessions, turning those daunting hours into moments of shared strength and resilience.
But the treatment didn’t stop there. A year later, I underwent a bilateral salpingo-oophorectomy (BSO) to remove my ovaries and fallopian tubes, and to this day, I continue to take Letrozole and I received 10 Zometa infusions. The journey felt endless, as one treatment led to another, each bringing its own set of challenges.
During this time, I turned to various coping mechanisms—exercise, yoga, complementary therapies, drawing, and meditation. These practices, along with professional counselling, helped me navigate the emotional storms that cancer brought into my life. I also attended several support workshops, including the “Look Good Feel Better” workshop and the “Younger Women Together” course, which provided a much-needed sense of community and understanding.
Discovering the PALB2 gene mutation
The discovery of the PALB2 gene mutation added a new dimension to my cancer journey. It wasn’t just about surviving cancer anymore; it was about understanding the genetic implications for myself and my family. I became deeply involved in research, connecting with experts like Professor Marc Tischkowitz who set-up global PALB2 Interest Group, which led to organizing annual webinars for gene mutation carriers. The lack of resources and information about PALB2 pushed me to become an advocate, not just for myself, but for others in the same situation.
The uncertainty surrounding the PALB2 mutation was one of the hardest aspects to deal with. It raised questions about the future—whether my children were at risk, how it would affect them, and what steps we should take next. These questions led me to seek out others with the same mutation, to understand their experiences and to share knowledge. This journey wasn’t just about my health anymore; it was about protecting my family and helping others navigate the same path.
The ongoing impact
Living with breast cancer and being a PALB2 gene mutation carrier isn’t something that ends when the treatment stops. It’s a lifelong journey that affects every aspect of your life—physically, mentally, emotionally, and socially. Relationships change; some grow stronger, while others fade away as people struggle to deal with the reality of your situation. My husband, children, and my Mum were all deeply affected, each in their own way, and it has taken time for us to find a new normal.
Cancer forced me to reassess my priorities. I became more protective of my time, focusing on my health and well-being, and choosing carefully who I spent my time with. I learned the importance of putting myself first, a lesson that has profoundly changed how I live my life.
Life lessons learned
- Positivity is a Daily Choice: Take as much positivity as you can from each day. Even in the darkest times, finding a reason to smile can make all the difference.
- Cherish Your Relationships: Spend time with the people who matter most to you. Those who inspire you and bring joy to your life are invaluable.
- Embrace the New You: Life will never be the same after cancer. Embrace the changes, and learn to love the new version of yourself.
- Focus on Quality of Life: Prioritise your health—regular exercise, good nutrition, and mental well-being are crucial.
- Share Your Knowledge: Use your experience to help others. You know what it’s like, and your insights can make a difference in someone else’s journey.
- Be Your Own Advocate: No one knows your body and mind better than you do. Take charge of your health, ask questions, and stay informed.
- Create and Live Your Bucket List: Don’t wait. Write your bucket list and start ticking things off. Life is precious, and there’s no better time than now.
- Seek Support: There is a wealth of support available—don’t be afraid to reach out. Whether through friends, family, or online communities, help is out there.
Conclusion
Being diagnosed with breast cancer and discovering the PALB2 gene mutation has been a transformative experience. It’s not just about surviving cancer; it’s about living with it and everything that comes with it. It’s about understanding that this journey is lifelong, with its challenges and triumphs, and learning to navigate it with grace, strength, and resilience.
Through it all, I have learned the value of community, the importance of self-care, and the power of hope. My journey is ongoing, but I am committed to living each day fully, surrounded by the people I love, and making a difference in the lives of others who share this path.
Yulia Baynham is a dedicated professional in the Financial Services industry who was diagnosed with breast cancer in 2019, the same year she discovered she carries the PALB2 gene mutation. As a Board Trustee of the Olive Tree Cancer Support Group in West Sussex, she is deeply committed to supporting those impacted by cancer and their families. Yulia is also a senior contributor and patient representative for the CanRisk program and the Embrace study at the University of Cambridge, both funded by Cancer Research UK, where she advocates for awareness and better understanding of genetic cancer risks.