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Late Effects




There is a huge amount of debate about how to define the term " survivorship", who is a "survivor" of childhood cancer and if this is even an appropriate term.

Ellen Stovall was a previous President and CEO of the National Coalition for Cancer Survivorship (NCCS).  The NCCS is the oldest survivor-led advocacy organization in the US.  Ellen Stovall, with other NCCS founders, was the first to define the terms “survivor” and “survivorship” in relation to cancer nearly 20 years ago.

Ellen recently died as a result of cardiac complications related to her previous cancer therapy.  

Their widely accepted recommendation was that an individual is considered a cancer survivor from the time of cancer diagnosis, through the balance of his or her life.

NCCS later expanded the definition of survivor further to include family, friends and even voluntary caregivers affected by the diagnosis in any way.

The term "survivor" has been rejected by some as being a narrow conceptualization of a highly variable human experience. An alternative term is a "thriver", which emphasizes living as well as possible, despite limitations and disability.



Suleika Jaquad has a blog at the NYT.  She is in her early 20s and recently had a bone marrow transplant for leukemia. She writes from a deeply personal perspective about the issues around survivorship.

Life, interrupted: Am I a Cancer Survivor? 




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