MARP 2023: Denise and Clint
Denise Smith, Advocate and Clint Valencia, Researcher
Giving Voice to the Science - Denise Smith
“Are you going to die? Will you even be here for my children?” This was my youngest daughter’s first reaction to the news, and I was just as shocked as she was. I didn’t know what to tell her as I shared about my new diagnosis. After a recurrence with breast cancer in 2017, where I had double mastectomy and chemotherapy treatment, I was diagnosed with Metastatic Breast Cancer (MBC) in 2018. I was given the standard treatment plan of anastrozole and palbociclib with an expected survival rate of three years. My youngest daughter had always hoped I would be a grandmother to her children as I had been to my other children’s kids. Although she had desired children for years, she had not been able to conceive a child yet. As I got involved in advocacy work, I have always focused on that event because it is my story that makes the impact of the role of scientists have real meaning. It reminds me that everyone has a story, and that the work that advocates and scientists do is changing the stories of breast cancer patients everywhere.
My advocacy work has allowed me to share my story and gain impactful scientific knowledge through multiple organizations such as at the Metastatic Breast Cancer Research Conference (MBCRC) and being a part of the Advocate Research Program (MARP). The additional knowledge I gained by interacting with my assigned scientist allowed me to broaden my understanding of current research topics. I had a very positive experience from the conference where I was reviewing poster presentations and was able to discuss these individually with my assigned scientist. As well as share my story in connection with these research topics. Beyond myself, this knowledge also impacts my conversations in meetings with scientists as part of my role on the Breast & Gynecologic Cancers Research Advocate committee. In gaining greater understanding, it has allowed me to bring a new perspective to this discussion. This interaction will also directly impact my role as an annual consumer reviewer for DOD BCRP applications. In all roles I have been able to share my story and gain greater scientific understanding.
After more than five years since receiving the diagnosis of MBC, I am still alive and doing well on my original treatment plan with follow-up scans showing no metastasis. My daughter and her husband were finally able to have a baby boy last year, an event I was not sure I would live to see. A CK4/6 inhibitor drug has allowed me to be a grandmother again and to answer those questions. While I know eventually a scan will come up with a metastasis, I have come to realize that the time I have I want to use to advocate. The chance to attend the MBCRC and be part of the MARP program has not only helped me increase my knowledge of the current topics, but also allowed me to interact directly with scientists and ask questions that will help others with whom I serve through advocacy work. It is by telling mine and their stories that I can give a voice to the science.
A Researcher’s Perspective - Clint Valencia
A main personal goal of mine is to leave the world knowing I did something to benefit society. Being nurtured in an environment surrounded by health professionals and teachers, where helping others was the focus, has fueled that goal continually throughout my life. With this aim, I was drawn to the field of cancer research. I have always been engrossed in learning about diseases and infections and fascinated by how the human body is fragile yet resilient. Scientific research became pivotal in my academic career as it opened my eyes to pursuing a Ph.D. and drove me to be more successful in my studies. Research has not only influenced my career choice but has also steered my interest in immunology within cancer biology. I want to dive deeper into understanding how immune cells participate in specific processes and disease states and expand my knowledge of the immune system through scientific research. This has led me to join a lab to research a potential immunotherapy for breast cancer.
Breast cancer has had a significant effect on my life. I have had close relatives battling their breast cancer diagnosis during a time that left the rest of the family with uncertainty and worry. Going through this motivated me to be involved in research that would mean something to me and my family. After going through the 1st year of my graduate program, I was inspired by the work being done in Dr. Alana Welm’s lab helping breast cancer patients, which led me to join the lab for my Ph.D. work. Currently, I am investigating a possible immunotherapy for metastatic breast cancer patients, specifically for breast cancer patients with bone metastases. Throughout my time in the Welm lab, I have had various opportunities to work with patient advocates to advance our work. I believe that patient advocacy is essential for successful research, which guided me to join the MARP program at MBCRC.
The MARP program has allowed me to be paired with a patient advocate and learn more about how we can better our research to enable patient advocates to learn and collaborate on the work researchers are doing. I understood more about what patients/advocates deem important and what they don’t comprehend but want to learn more about. Research can become very complex, and the MARP program allows patient advocates to understand more scientific topics and the work being done on the disease. The program also helps researchers to improve their communication skills in describing their work and others.
At the end of the day, the findings that scientists discover will affect patients, and they need to know what treatments they are taking and how they are working. Patient advocacy allows for the transparency and support we need regarding scientific work. Overall, the MARP program has allowed me to understand what breast cancer patients go through and their eagerness to learn more about cancer research.