Lilla: How I Became a Breast Cancer Advocate

Lilla: How I Became a Breast Cancer Advocate

Lilla died of metastatic breast cancer in 2010; her story remains with us.

I never meant to be an advocate. Even though my first breast cancer was in 1995 with a recurrence in 2000, I didn't realize until 2005 that individuals could be Breast Cancer Advocates. I somehow thought there were professional lobbyists that roamed the halls of Congress and the Senate asking for monies and favorable legislation.

About four years ago, after joining SHARE's Helpline, I attended the National Breast Cancer Coalition Fund's Advocacy Training Conference. Listening to the speakers, I was spellbound. For the first time, I realized that individuals can and do make a difference. I was mesmerized, but still I didn't think that advocacy was for me. It was the science that enticed me.

Project LEAD, an intensive science training course offered by NBCCF, opened my eyes. As I looked around at all the students, most of them breast cancer survivors, I realized that breast cancer doesn't discriminate. It can happen to anyone, regardless of age, race or political persuasion. And yet we all had one goal: to learn what had happened to our bodies and to make sure it didn't happen to our daughters, sisters or mothers. At the end of the course, we were asked to give brief descriptions as to how we planned to be more active in advocacy. I wasn't sure how to respond. My motivation had been simply to learn more so that I could help the women I speak with on the SHARE Helpline.

It was a month after that, at a SHARE LEADers meeting, I learned about the controversy surrounding the EPO drugs. These are drugs that were frequently given when someone's red blood cell count was dangerously low due to chemotherapy. The goal was to avoid transfusions. Over my 9 years of chemotherapy I had received many doses of these drugs. Only now, however, was information becoming available that highlighted the risks they presented. In fact, the clinical trials were showing a higher number of deaths in the group taking the EPO drugs than in the Placebo group. Helen Schiff suggested I testify before ODAC and express my concerns. Hesitantly, I agreed.

As I stood before the lone microphone several days later, looking out at the impressive ODAC panel, I questioned my sanity. I wondered how I had the nerve to address these distinguished scientists and speak to them about drugs. Suddenly, it came to me. I looked out at the panel, I thanked them for allowing me to speak and I began my testimony with "What I bring to the table is experience"… an advocate was born.