National Coalition for Cancer Survivorship

From Ellen Stovall, NCCS Senior Health Policy Advisor:

“I am a 42 year survivor of three bouts of cancer. When I was diagnosed with cancer, it was one of the most terrifying experiences of my life. I felt like I'd been parachuted into a foreign land, with no way to speak the language, and no map to track my journey. The fact is, I did have excellent treatment. I had good communication with my doctor, I had a written care plan, knowing what to expect and what the goals of treatment were, and I had coordination of care among all of my physicians.

I thought to myself, ‘This is what good care should look like.’ But the fact is, not everyone has this, but everyone should have this, if they are diagnosed with cancer. That's why I urge you to become an advocate first for yourself if you're diagnosed with cancer, and go on to become an advocate for others by supporting legislation that would make this kind of care available for everyone.”


In 1986, the founders of NCCS set out to establish an organization that would change the parlance from cancer “victim” to cancer “survivor,” envisioning an organization that would deal with the full spectrum of survivorship issues related to living with, through and beyond a cancer diagnosis. NCCS’s definition of a survivor, from the time of diagnosis and for the balance of life, is now the norm for the cancer community and beyond.

Receiving a cancer diagnosis and starting treatment is a confusing, stressful, and difficult process for many. Ensuring quality cancer care is complex, and there are many areas for improvement and policy action. An important gap is in treatment decision-making and coordination of the multiple facets of cancer care. To address this gap, we have set a primary goal to ensure that every cancer patient has access to cancer care planning and coordination services. These services provide patients information to make informed decisions about treatments; encourage collaboration among the multi-disciplinary cancer care providers; and facilitate transitions from active treatment to survivorship.

For more than a quarter century, NCCS has worked with legislators and policy makers to represent cancer patients and survivors in efforts to improve their quality of care and quality of life after diagnosis. While we hope for the cure, we must focus on the care.

For a list of NCCS' accomplishments, Click Here.