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Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES! Beat Liver Tumors, an organization for individuals living with metastatic liver tumors, and an advocate for Fight Colorectal Cancer.

A walk down memory lane - My steps through colorectal cancer advocacy

Wednesday, March 14, 2012
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
Most of my life I wasn't even aware that colorectal cancer existed. At 31, that innocence vanished and with it began my journey into the world of stage 4 colon cancer. Only one chemotherapy existed then and it wasn't expected to do much good. I was fortunate to find the ACOR (ACOR.org) listserv and another survivor, Shelly Weiler, who encouraged me to begin treatment. I did. I have since benefited from the research that was rampant for colon cancer. New drugs were developed and I received them first as single agents (one at a time) and then in the varying combinations that are used today. My tumors were responsive and slow growing at first. Research stagnated and my luck changed as the tumors in my liver began to grow uncontrollably. It seemed that nothing could stop them and we were fortunate to find out about radioembolization, or SIR-Spheres, which shrunk my tumors and allowed me to begin systemic therapy once again. Friends knew of my journey and I began to hear about the power of advocacy. Timid and quiet, it was foreign to me. But as I watched others making creating change I felt like I should, too. In 2006, I joined One Voice Against Cancer to take colorectal cancer awareness to Capitol Hill for the first time and at the same time discovered Fight Colorectal Cancer (fightcolorectalcancer.org). I was terrified that trip and spent much of the training in tears. There were other wonderful Texans that took me under their wing, though, and helped me to share my story. I had the opportunity to meet my representative during that trip, Jeb Hensarling, and to share that I was able to stand on the Capitol steps and walk into his office because of research. I told him I wanted to watch my daughters grow up and that without more research, I wouldn't be able to do that. When I left, I knew my words had made an impact. Our stories make a difference. No one should experience the helplessness and hopelessness of colorectal cancer. It is preventable, treatable and beatable. Taking action is easy: fightcolorectalcancer.org/policy/take_action_this_march. My story makes a difference. Your story can make a difference, too. So I challenge you - be the difference!
Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
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