Abstract LB-71: Poke, Tweet, Share, Tag: A New Generation of Cancer Advocacy

Abstract

Abstract After a diagnosis of cancer, a whole new, lasting identity imprints itself on you, especially if you're still young. Cancer in young adults brings a set of unique issues, including dealing with a delayed diagnosis, having access to clinical trials, finding age-appropriate peer support, feelings of isolation, and finding some kind of balance between survivorship and feeling cured. Encouraging, supporting and educating a generation of young advocates and survivors requires the attention of the medical community and mentoring from experienced advocates. Building credibility within the scientific community is crucial to establishing the influence of a community of survivors typically underrepresented. Significant challenges exist for the medical community to be effective disseminators of cancer research information to generations 40 years and under. It also takes time for the young advocate to understand the many facets of engagement as a patient advocate. This poster will describe the experiences of a young breast cancer survivor, diagnosed at age 36, as she discovers how becoming an advocate for young women dealing with breast cancer in her community connected her to the science, politics, and ethics of the medical community. Generational expectations combined with professional and cultural differences between the young patient and medical community lead her to find ways to help educate her medical providers, cancer clinics, and fellow patients. The disappointment of finding that many research studies have not considered the issues unique to breast cancer in younger women and the revelation that awareness of breast cancer in women under 40 is minimal inspired her to seek out ways to increase her understanding of the science and improve her understanding of how the medical teams work. This poster will also discuss other opportunities for young advocates to add value to the science of cancer research and its impact on the patient. These opportunities include volunteering as a Patient Advocate with NCCTG through her local Cancer Center, serving as the patient advocate who reviews all research protocols being considered for deployment in her area, seeking out valuable professional development opportunities such as programs through Research Advocacy Network's Research Advocate Institute, and establishing a local affiliate of Young Survival Coalition to link communities of survivors with national resources and education. Through pokes, tweets, tagging, and sharing, she uses media to connect the experience of the young survivor to the science of accelerating progress against cancer. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 102nd Annual Meeting of the American Association for Cancer Research; 2011 Apr 2-6; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2011;71(8 Suppl):Abstract nr LB-71. doi:10.1158/1538-7445.AM2011-LB-71