As a survivor of four different types of cancers, my grandmother faced the greatest challenge not from the cancer itself, but from the treatment. The chemotherapy and radiation that saved her life also inflicted a cruel toll, permanently damaging the tissue within her ear and throat and stripping her of the ability to hear and swallow. Even after surviving cancer, she was left to fight another battle: adapting and navigating this daunting and uncharted way of life. Growing up, I watched as she increasingly struggled to hear her loved ones, risked choking while eating simple foods, and lost the ability to communicate clearly with those around her. Her experience was only one of millions whose life was forever altered by cancer.
As I entered my freshman year at Rice University, my curiosity was piqued by a single question: What happens after cancer? I became involved in my student government’s Students with Disabilities Commission, where we aimed to identify gaps in student disability support and increase awareness on-campus for students with disabilities. This commission gave me a deeper understanding of various disabilities and the resources available to those affected, particularly through the Americans with Disabilities Act (ADA). I began to draw the parallels between my grandmother’s adjustment to her disabling post-treatment symptoms and the journey of students navigating college with a disability.
As a UTHealth Houston Cancer Prevention & Research Institute of Texas (CPRIT) Summer Scholar, I delved into the world of cancer survivorship. It was eye-opening to discover that my grandmother’s post-cancer life had a name: cancer survivorship. As I explored the connection between cancer survivorship and disability, I found many cancer survivors suffered from disabling post-treatment effects similar to my grandmother, yet did not identify as disabled. We found many survivors, especially adolescent and young adult (AYA) survivors, faced employment discrimination based on their cancer diagnosis and post-treatment symptoms, which they are protected against by the ADA. Our research seeks to improve support for survivors in their post-cancer journey and educate them on their legal rights and protections.
Under the mentorship of Dr. Lex Frieden, I created a national Qualtrics study to learn more about cancer survivors’ experiences within their community and examine the relationship between cancer survivorship and disability identity. We aim to determine what role ADA education plays in developing a disability identity among survivors. Preliminary results highlight the prevalence of stigma against survivors, struggles with identity, and potential benefits of ADA education, underscoring the need for greater support of cancer survivors after treatment.
We are eager to hear your story and to continue reaching survivors nationwide. I am continually inspired by the strength of each cancer survivor as they navigate their journey and hope this project will raise awareness for survivors’ experiences, providing an outlet for their voices to be heard. As a passionate student and researcher, I am grateful for this opportunity to develop my interest in cancer survivorship and I am motivated to discover how I can contribute to this community. It is my hope this research will lead to new resources for survivors throughout their journey and serve as a stepping stone toward greater advancements in supporting cancer survivors.
By: Lindsey Vongthavaravat