Why I am an Advocate: Elisa Shea

The simplest answer - because I'm a 23 year childhood cancer survivor.

I was diagnosed with Ewing's sarcoma at the age of five. After two years of treatment, my pediatric oncologist told me to come back in three months for a check-up, which went on annually for another 11 years. When I turned 18, I was told that I no longer needed to continue these check-ups. However, I was never informed of potential late effects or directed to an oncologist to monitor these effects. /p>

Five years later, I was working for the Jimmy Fund, part of the Dana-Farber Cancer Institute and learned how vital it was to continue follow-up care as a survivor. In my first year, I learned about a clinic specializing in long term follow-up care for childhood cancer survivors. This discovery led me to begin seeking information about the late effects of Ewing's sarcoma. What I found shocked, confused and scared me. Why had I not been warned about the potential late effects?

When I scheduled an appointment, the clinic asked me to forward my treatment summary. This was news to me! I had never heard of a treatment summary. Naturally, I did what I had always done - I asked my parents. Because I was so young when diagnosed, they had a better understanding of my treatment and the types of surgeries I underwent. After reviewing my medical records, the clinic was able to put together a treatment summary to determine which tests I needed.

While this experience frustrated me, it also motivated me. I began researching the issues that many survivors face, and wanted to take action. When I heard about the Children's Cause for Cancer Advocacy and its mission, I decided to attend their Rise to Action (RTA) Conference in Washington, DC. Honestly, I was not sure what to expect since it was my first time interacting with other young cancer survivors. The conference exceeded all expectations and left me motivated and inspired.

Attending the conference jump started my advocacy efforts. I was asked to share my story at a Hill briefing sponsored by the National Coalition for Cancer Survivorship to gain support for the Comprehensive Cancer Care Improvement Act. This opportunity was important to me, because for the first time telling my story was not about me, it was about other survivors. My story is not unique. I realized at the RTA conference that many cancer survivors face the same challenges I did. However, I was fortunate enough to be working for a cancer institution and to stumble upon a follow-up clinic. Many survivors unfortunately have to discover and research a lot of the issues on their own.

Why am I an advocate? The answer is more complex. I am an advocate because it is important to my long term health. I am an advocate because every childhood cancer survivor should be aware of late effects and follow-up clinics. I am an advocate because I did survive.