What Does It Mean to Be a Survivor?

We are at the beginning of understanding what it means to be a survivor, both long term and short term. The Lance Armstrong Foundation (LAF) defines a cancer survivor as “Anyone living with a history of cancer. This includes newly-diagnosed survivors as well as long-term survivors.” For some, family members and caregivers are included in this group.

The following questions can give individuals and groups a starting point for discussing survivorship:

• What defines a survivor?

• Are you a survivor only if you are disease-free?

• What is the impact on health of being a long-term cancer survivor?

• What is the cost of being a survivor—physically, emotionally, spiritually and financially?

• Is our healthcare system prepared to handle the growing number of people touched by cancer, and the treatment and follow up needed for quality of life?

• How do we evaluate survivors' wellbeing? How do we compare it with the wellbeing of others with chronic conditions?

Some who have been diagnosed with cancer do not like or identify with the term “survivor” because they are “cancer-free” and do not see themselves as cancer survivors. Instead, they desire different ways of defining themselves and their lives. For others, the term feels inappropriate because they associate it with surviving rape, or the Holocaust.

What's clear is that more emphasis and resources must be allocated to identifying the implications of survivorship. Because millions of families include at least one individual who has been diagnosed with cancer, increasing efforts to care for and understand those who have been touched by the disease is essential.

A national action plan for cancer survivorship

In April 2004, The Lance Armstrong Foundation, in partnership with Centers for Disease Control and Prevention, announced a National Action Plan for Cancer Survivorship. The plan recognized the need for major action to advance cancer survivorship issues and encourage organizations to act, “for and on behalf of cancer survivors.”

The effort is an acknowledgement that there is little focus in the public health arena on cancer survivorship. Therefore, the National Action Plan's purpose is to improve quality of life for cancer survivors; seek public health strategies for preventing secondary cancers and recurrence of cancer whenever possible; promote appropriate management following diagnosis and/or treatment to ensure the maximum number of years of healthy life for cancer survivors; minimize preventable pain, disability and psychosocial distress for those living with, through and beyond cancer; and support cancer survivors in accessing the resources and the family, peer, and community support they need to cope with their disease.

What do survivors need?

Survivors need more resources—financial, emotional, informative and supportive.

They need comprehensive follow-up care, symptom management, spiritual and emotional support. They need more information about adopting and maintaining healthy lifestyles, as well as what constitutes optimal care. And they need more research about the effects of treatment.

In addition, survivors in underserved communities need more cancer care. Survivors speak of their wish for our country's health care system to offer insurance to the tens of millions who have none, and better coverage for those who do. Striving to help meet that need, the National Cancer Institute is expanding research to address cancer issues in underrepresented and underserved survivor communities.

Because advanced breast cancer is starting to be treated as a chronic condition instead of an illness that must be “cured,” long-term survivors can expect to see more specialized services that address their specific needs. The debate about what survivorship really means has not yet been resolved, and may never be, but persistent discussions will ensure that advances in long-term care will continue to improve.

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