Cancer Survivorship: Pathways to Health After Treatment:
Survivor-Researcher Mentor Program

National Priorities in Cancer Survivorship

“Advancing the Survivorship Agenda” a personal reflection by Michael Lin

Special Assistant, Lance Armstrong Foundation
www.laf.org

With over 9 million cancer survivors alive today, cancer survivorship represents a shift from just extending the quantity of life to also ensuring a high quality of life. Cancer survivorship is a relatively new term which encompasses issues that cancer patients and survivors face relating to the physical, emotional and practical effects of cancer. On a national level, survivorship is beginning to be addressed by the National Cancer Institute (NCI) through the Office of Cancer Survivorship and also by the Centers for Disease Control and Prevention (CDC). These initiatives are part of the national healthcare goal of “Healthy People 2010” and NCI’s goal to “eliminate the suffering and death due to cancer by 2015.” The topic of National Priorities in Addressing Cancer Survivorship interested me because of the variance in services at cancer centers and community hospitals where cancer patients are treated. Change on a national level will improve care in many communities. Also, my work at the Lance Armstrong Foundation (LAF) where the main focus is survivorship is another reason for my interest in this topic.

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Survivorship is important because as Dr. Julia Rowland, director of the Office of Cancer Survivorship at NCI, said, “Survivors may be cancer free, but may not be free of their cancer.” Once cured, cancer survivors are burdened with the long-term fears of having cancer as well as the practical—in the workplace or when searching for health insurance. As more people diagnosed with cancer are cured, the long-term effects of treatment must be understood and monitored appropriately. At the national level, this can be achieved through research, development of treatment and follow-up guidelines, intervention development, development of a medical record database, and changes in law. A new document produced by the CDC in conjunction with the LAF, the National Action Plan for Cancer Survivorship, outlines steps for the public health community to address cancer survivorship. The plan is a great starting point toward adequately addressing the needs of cancer survivors.

At the conference I came to a few conclusions and formed a few opinions of my own. I found that interest in survivorship is slowly evolving through the development of research grants by NIH and NCI (and grants from organizations like the LAF!). While it is easy to study and understand the long-term physical outcomes of treatment, it is quite difficult to study the emotional or psychosocial effects and the benefit of an intervention. The biggest obstacle for survivorship is in determining the value of quality of life. I think that many researchers and policy makers do not quite understand the need for survivorship research. While still very important, most scientists are still solely focused on development of a cure. In order to truly address the issue of survivorship I feel that more participation from physicians needs to be solicited since they are the direct contact to patients. At this conference, I only saw a few physicians and the rest were researchers with PhD’s in various health disciplines. However, it was encouraging to learn that the American Society for Clinical Oncology and the American College of Surgeons were working together to develop long-term follow-up guidelines analogous to the Children’s Oncology Group guidelines that were released this year.

I hope to continue working with organizations such as the Lance Armstrong Foundation to further survivorship. As a future health professional, I hope to work with other physicians to begin to understand survivorship not only for cancer patients but for all diseases and address the issues surrounding their care. I am also interested in conducting research in the area of cancer survivorship and developing a community program for survivors and caregivers.