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Cancer Survivors Coalition NCCS

(aka) National Coalition for Cancer Survivorship

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8455 Colesville Road
Suite 930
Silver Spring,  MD 20910
Phone: 888-650-9127

Mission
We advocate for policy change in how the nation researches, regulates, finances and delivers cancer care. Founded by and for cancer survivors, we are a resource for policy analysis/commentary and empower cancer survivors through publications and programs.

Email: info@canceradvocacy.org
Web Site: http://www.canceradvocacy.org

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Real Life Story

Meet Suzanne Lindley, Colon Cancer Survivor

When I was 31 years old, I was diagnosed with stage IV colon cancer and told I had six months to live. I didn't accept that verdict: instead I sought out other opinions and began taking the only chemotherapy drug for colon cancer that was available at the time.

Since I was diagnosed in 1998, several new treatments for colon cancer have been discovered, and I have had them all, including five new chemotherapies, external beam radiation and intrathecal chemo for spinal metastases. If I had had a written care plan, with all the options outlined before undergoing treatments, it would have helped me make decisions and give me an idea of what to expect going forward. Instead, I've had to navigate the complex path of treatment possibilities on my own.

I have had numerous surgeries and side effects, and over the last decade my care has been conducted by several facilities and at least a dozen different physicians. There is no written summary of all the treatment I have received over the last ten years, so I've compiled copies of my medical records from several different facilities and physicians in four 3-inch binders. These are important because many cancer treatments produce late effects.

Hearing that you have cancer is enough to comprehend. No one should have to concern themselves with the amounts or types of chemo, procedures, or radiation they have received but should instead be provided with clearly delineated plans for moving forward.



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