In the Know: Questions and Answers

CURE: First, what is survivorship and how many of us are there?
Dr. Rowland: Philosophically, we adopted the definition put forward by the National Coalition for Cancer Survivorship in 1986, which says anyone who has been diagnosed with cancer is a survivor, from the time of diagnosis and for the balance of that individual’s life. It is important to note that the OCS also considers caregivers and family members to be secondary survivors as they too are touched by the experience of cancer in a family member or loved one. New figures compiled in April 2003 indicate that there are now 9.6 million persons living with a history of cancer in the United States.

CURE: Explain how the office of survivorship came about.
Dr. Rowland: The OCS was established in June 1996 by the National Cancer Institute in recognition of the large number of individuals now surviving cancer for long periods of time and their unique and poorly understood needs. It was created in direct response to a number of grassroots organizations that were asking for support in their efforts, particularly the National Coalition for Cancer Survivorship.

CURE: What are the goals of the office?
Dr. Rowland: The ultimate goal of OCS is to enhance the length and quality of survival of all cancer survivors. We also want to provide a focus for the support of research that will lead to a clearer understanding of and the ultimate prevention of, or reduction in, adverse physical, psychological, social, and economic outcomes associated with cancer and its treatment. Finally, we want to educate professionals who deal with cancer survivors about issues and practices critical to the optimal well-being of their patients. This educational commitment extends to cancer survivors and their families.

CURE: How do you do this?
Dr. Rowland: Using a variety of NCI funding mechanisms, we support the research of investigators who are studying the long-term or chronic and late effects of cancer and its treatment, such as pain, lymphedema, sexual dysfunction, second cancers, and poor quality of life. We also provide support to those who are creating a knowledge base regarding optimal follow-up care and surveillance of cancer survivors and developing interventions that seek to prevent or control the negative effects of illness and optimize health after cancer treatment. In addition we create materials that are free to the public and the medical community to help them understand and cope with survivorship issues.

CURE: Define late effects of cancer treatment.
Dr. Rowland: The effects of cancer may be acute, that is short-lived and time-limited; long-term, meaning they persist for various periods of time even after treatment ends; or late, indicating that they occur months or years after treatment. We can further categorize cancer and treatment-related effects into four broad areas. The first is physical/medical, which includes second cancers, cardiac dysfunction, pain, sexual impairment, and lymphedema. The second is psychological issues such as depression, anxiety, uncertainty, isolation, and altered body image. Third is social issues such as changes in interpersonal relationships, health and life insurance issues, job lock or loss, school and education issues, and financial burden. And fourth is existential and spiritual issues such as loss of purpose or meaning or altered, often deepened appreciation of life.

CURE: What is the research telling us about long-term and late effects of treatment?
Dr. Rowland: There is an emerging awareness of the insidious nature of chronic toxicities as they relate to fatigue, sexual dysfunction, cognitive impairment, and neuropathies, and that there may be long latency periods for many adverse effects of cancer treatment.

We have also gleaned a number of conclusions on long-term effects of childhood cancer survivors in terms of physical issues such as cardiotoxicity, obesity, and endocrine disorders. We are funding research that explores ways to reduce or eliminate many of these detrimental effects.

CURE: What other findings have you found to be important?
Dr. Rowland: We are exploring the impact on survivors’ health and well-being of a variety of different psychosocial and behavioral interventions that are offered to diverse survivor groups at different points of illness. This research is telling us that such interventions can help to improve patients’ knowledge and understanding of the illness and treatment, their functional and social well-being, their mood, and their experience and management of treatment and disease-related symptoms. This research has given us some information that needs further exploration. For example, group interventions may be as effective as individual; education appears to be a common component in all such interventions; patients who participate in interventions do no worse than controls or those who receive standard care; “at risk” individuals likely benefit most, and sometimes less intervention may result in better outcomes than more. A broad look at the larger body of psychosocial oncology literature suggests that four factors are associated with good quality of life outcome. These are being able to access state-of-the-art care, being an active participant in one’s care, having and using a social support network, and finding or having a sense of purpose or meaning in one’s life.

CURE: What will be done with the information from your office?
Dr. Rowland: That’s the question we will work to answer. Who should deliver what to whom, and when in the course of care should it be delivered? And, the big question, who should pay for it?

CURE: What are the future directions in survivorship research?
Dr. Rowland: Some of the new directions in survivorship research include exploring emerging late effects such as “chemobrain,” studying the impact of cancer on family and caregivers, determining the role that psychosocial/behavioral interventions might play in promoting health in addition to improving quality of life, examining the nature, extent, and value of positive outcomes to survivors’ health, and assessing all of these issues in neglected groups, that is among diverse peoples and across different types of cancer.

CURE: How can CURE readers keep up with your office and findings?
Dr. Rowland: They can log on to www.survivorship.cancer.gov.

For additional information on cancer and survivorship issues, go to www.cancer.gov or www.nih.gov.