MARP 2023: Valerie and Katherine
Coming Together Through Our Shared Life Lessons
Valerie Fraser, Advocate and Katherine Lake, Researcher
Valerie is a dedicated research and patient advocate, a 16-year survivor of inflammatory breast cancer, and an enthusiastic lifelong learner and educator. Katherine is a third-year medical student, metastatic breast cancer researcher, and aspiring patient-centered clinician. Through spending time together as MARP participants at the MBCRC conference, we had the privilege of not only exchanging our insights about science, breast cancer, and advocacy but also, more personally, our conversations led us more deeply into the “why's” that inspire and drive us forward in our breast cancer goals. Through these open conversations over several days of the conference, we found that we both shared life-changing experiences with our fathers that fueled our deep and shared commitment to research.
VALERIE
In 2023 I will have survived 16 years as an inflammatory breast cancer patient. My passion for understanding cancer and delving into the details of research has been an anchor in not only navigating my own difficult diagnosis but has also allowed me to help countless other cancer patients and be able to work with many researchers whose goal is to advance research in breast cancer detection, treatment, and quality of life. I learned that research was the roadmap to the challenges we must face with cancer, in particular difficult diagnoses such as IBC and most importantly in metastatic disease. So for me this journey began a long time ago before my own cancer challenges, but like Katherine, my father was my hero and my greatest inspiration and teacher. He survived two World Wars in Britain, had to navigate many dangerous situations, taught me how to think differently, find unique answers and solutions to complex problems and to never, ever give up hope. The many lessons I learned as a child through my father and during my father’s journey with a difficult bladder cancer, really laid the foundation for my passion for research, my own cancer survival and fueled my passion to help others through advocacy.
Throughout my life, difficult questions intrigued me. As a child, you would find me sneaking into the room with the adults, quietly listening to conversations and problems, and constructing jigsaw puzzle solutions in my mind. In later years, my interests turned to researching and law. This was a love that merged my compassion for others with the skills to ferret out answers to complicated problems. When cancer first knocked on the door of my family in the 1980s with my father’s stage IV bladder cancer, my ability to research and use these skills led to navigating a way to obtain intravesical BCG, a non-FDA approved drug for bladder cancer (the first immunotherapy from a tuberculosis vaccine) which resulted in his complete response to the drug. BCG was later approved for bladder cancer in 1990 and is now a standard of care. Years later when my mother was diagnosed with breast cancer at an advanced age, I researched and found an oral aromatase inhibitor, Letrozole, which I was able to obtain for her. Again, not approved at the time, but a well-tolerated, targeted drug and able to shrink her tumor 50% within 3 months with no impact to her quality of life in her 90s. I was able to spend many, many quality years with my parents by digging into the research and finding these answers. I’ve had opportunities to help many family members, friends and others touched by cancer through research over the years.
Through research and ferreting out answers I was able to impact my own survival. IBC was clearly different, my repeat mammograms failed to detect it and many doctors were not alerted to the warning signs. In a few weeks it spread like wildfire through my breast. It became quickly apparent that I needed to find an expert, so I found a way to travel for that expertise. I had never heard of IBC, so there was a learning curve that needed to be accomplished fast and I needed to understand the research that had been accomplished for IBC, which was disappointing. All of this along with meeting and personally knowing so many other IBC patients and families with similar and much worse experiences through the years, many who lost their lives, made me realize how critical it was that research specific to IBC be advanced to save lives and determine how I could channel my passion, mission and skills to make a difference within the research community as a scientific research advocate. In 2013 I helped form an international consortium of researchers, clinicians and institutions, IBCIC.org, with my oncologist to advance IBC research globally, As a scientific cancer research advocate I continue to work with many leading cancer institutions and organizations, consult on grant projects, clinical trial advisory and working groups and serve on scientific peer review panels and steering committees bringing both the patient and research advocate perspective.
Little did I know many years ago that my curiosity for answers and the love, passion, and commitment back in the 1980s to find answers for my father to improve his quality of life and survival would lead me to find critical resources many years later when I faced a devastating diagnosis. My commitment now has been nurtured and grown to being able to meet passionate and amazing young breast cancer researchers like Katherine who have been propelled forward to pave the way in answering the difficult questions that will arise in the future for surviving breast cancer and providing for the quality of life for patients.
KATHERINE
Much like Valerie's journey into patient advocacy, my path toward a career in medicine was profoundly influenced by my father. During my childhood, my dad instilled in me a deep sense of curiosity and wonder. His favorite activities were visiting science museums, attending research lectures, and stargazing, and he imparted his knowledge to me with great enthusiasm.
My father's unexpected death shattered the innocence of my adolescence. At the age of 14, I faced the profound loss of someone pivotal in my life, and I struggled to comprehend it. I knew he had suffered a fall resulting in a head injury, I knew he was airlifted to the hospital, and I knew he spent a week in a coma before being taken off life support. In those challenging moments, I began to understand my calling as a doctor: to save patients like my father and to gain a deeper understanding of the complexities of death and disease.
Over the years, the foundation of scientific inquiry that my father had laid paved the way for my natural inclination and passion for problem-solving. While my medical school studies don't revolve around brain trauma, I am drawn to cancer research for its potential to yield life-saving breakthroughs. My mentors and the patients I've encountered have illuminated the urgent needs within the realm of metastatic breast cancer, a disease responsible for claiming over 40,000 lives in the United States each year. The consistent decline in breast cancer mortality rates, driven by advances in research, has reinforced my resolve to stay on this path. I entered the field of medicine and research because of my dad, but I've remained because of the remarkable impact that research can have on saving lives—lives of mothers, sisters, aunts, daughters, and even fathers and sons.
The friendship that Valerie and I have cultivated, grounded in our shared "why’s," is the bedrock of our partnership's value. As an early-career researcher, I have yet to find my niche for my future research career. That's why this relationship is so meaningful to me: I need guidance from advisors and mentors who know and understand the needs of patients and can steer me toward making the most meaningful contributions in the field of medicine, contributions that would make my father proud. Valerie has these invaluable insights into what patients need and can help guide me toward my future career. We first connected by understanding each other's profound motivations for research and advocacy. With this shared understanding as our foundation, we can honor our "whys" and carry forward the legacy of those who've inspired us.