Consumer Involvement
While I do not believe in fate, I will always feel as though finding a lump in my breast on the eve of my 30th birthday was quite symbolic. Breast cancer has not just affected my life, it has changed it; it has changed me. Having a greater awareness of my own mortality has taught me to appreciate life in a brand new way, understanding that getting older is nothing short of a gift. In some ways these changes are bittersweet and leave me feeling wistful, but in other ways they have allowed me to experience things I could never have imagined and to challenge myself in ways I would have never considered before. For example, I have been surfing in Maui with Project Koru, hiking in Big Sur with First Descents, and even modeled for a lingerie line designed for breast cancer patients. I had the opportunity to pose in a pinup calendar featuring women who have had or are living with breast cancer and even stepped the furthest outside of my comfort zone by having my body painted when I appeared on the breast cancer episode of the television show Skin Wars. My greatest adventure and gift is my miracle daughter who was conceived a year and a half post-chemotherapy.
Undoubtedly, the most difficult aspect of this experience is watching my young friends and peers fall prey to this disease. I would never have known these incredible people without this experience. I constantly remind myself that the best way to honor my lost friends is to live, to appreciate that I am still here, and to be an advocate for breast cancer research and increased quality of care.
I am involved with multiple advocacy organizations including the Young Survival Coalition (YSC), where I serve as a Respected Influencers through Science and Education (RISE) Advocate. YSC is incredibly important, because they connect young breast cancer patients with others who can relate to what they are going through. While representing YSC, I also served on the American BRCA Outcomes and Utilization (ABOUT) Steering Committee with Facing Our Risk of Cancer Empowered (FORCE). I have attended the San Antonio Breast Cancer Symposium as an Alamo scholar, been a lay advocate on a number of research proposals, and I served as the volunteer coordinator for the Dr. Susan Love Research Foundation Walk with Love� for two consecutive years.
I first learned of the Department of Defense (DoD) Breast Cancer Research Program (BCRP) in 2015, during my time at the National Breast Cancer Coalition�s (NBCC) Project LEAD�. I was nominated by YSC to serve as a consumer reviewer for the BCRP, which has been an incredible privilege. I am truly honored to be a part of such important, exciting work and to serve alongside such brilliant minds and respectable people. I have been fortunate enough to serve twice and would do it over and over again. It is such a unique and exhilarating opportunity. My voice, which can sometimes feel small in day-to-day life, feels valid, relevant, and respected at peer review. When the scientists say they agree with you or that you have a good point, it makes the time spent pouring over the proposals worthwhile. It is also an incredible learning opportunity and a rare chance for a patient to get to know the scientists behind the research on a personal level. I can bring this experience back to my community with the assurance that the researchers are truly invested in discovering breakthroughs in breast cancer treatment.
The DoD BCRP is of the utmost importance to the breast cancer community, and it has proven this consistently. It gives researchers the freedom to think outside the box and be more daring. It is bold and necessary. The BCRP continues to make a dramatic difference surrounding the quality of life and survival outcomes for breast cancer patients, myself included, as I was fortunate to receive Herceptin� as a part of my treatment plan. This treatment option may never have come to fruition if not for the DoD BCRP.
I think the motivations of the scientific community may vary, but the BCRP brings the best of the best together. If you have a chance to participate in peer review, do it! It is so exciting and fulfilling. I only hope I will have the privilege to serve again and again.
Last updated Tuesday, November 12, 2024