The American Cancer Society (ACS) published some astonishing numbers in its report, Cancer Treatment and Survivorship Facts and Figures 2012-2013. An estimated 13.7 million people in America are cancer survivors, and 59% of them are 65 years or older.1 This increasing population is in need of quality, evidence-based survivorship care. How to best serve this population with the resources available is challenging. When should survivorship care begin? This article explores the definition of cancer survivor and strategies for both informing patients and engaging them in their care.
The first Sunday in June is designated as National Cancer Survivors Day. Mercy Cancer Centers, in Toledo, Ohio, has hosted a Cancer Survivor Celebration for the past 9 years. To promote the Celebration, we post and hand out flyers to our patients. After handing a flyer to one patient, he replied, “I don’t know that I am a survivor yet.” When does a patient with cancer become a survivor?
A major controversy in oncology is how to define a cancer survivor. The National Cancer Survivors Day (NCSD) Foundation defines a cancer survivor as “anyone living with a history of cancer—from the moment of diagnosis through the remainder of life.”2 Understanding that survivorship is not the end of treatment or being disease-free for a designated period of time is crucial to developing a survivorship program.
WHERE TO BEGIN
Some larger institutions have late-effects clinics and other services that are tailored for patients who have completed therapy; however, community-based programs have limited resources. Cancer survival is divided into three separate phases.1
The first phase is from diagnosis to the end of initial treatment. Oncology nurses are most familiar with this phase. They educate patients about potential treatment-related morbidities and work with physicians to provide early identification and interventions. For example, recognizing the early signs of ototoxicity or neuropathy in a patient, then working with the health care team to ensure that the risk of long-term disability is minimized. Oncology nurses are on the frontlines of survivorship for patients undergoing cancer treatment.
The second and third phases, the transition from treatment to extended survival and long-term survival, are where most survivorship programs begin. Data from the treatment phase provide information for individualized patient management. “When treatment ends, you move into what has been called the neutral zone, which is characterized by feelings of chaos, loss, and confusion.”3 A separate survivorship visit is the ideal opportunity to provide useful information for maintaining health and identifying both the physical and emotional consequences of cancer and its treatment.
COMPONENTS OF A SURVIVORSHIP VISIT
The Institute of Medicine (IOM) provides guidelines for Survivorship Care Plans4 (Table 1). These guidelines are a good starting point when deciding how your survivorship program will look.
Table 1. Key elements of treatment plan and summary3
|Diagnosis, including histology stage at original diagnosis|
|Drugs, route, frequency, toxicity|
|How was the treatment tolerated?|
|Hospitalization for toxicity|
|Grade 3-4 toxicity|
|Agents discontinued/stopped early|
|What was the response to treatment?|
|Reasons for treatment discontinuation|
|Long-term sequelae of treatment|
|Planned next steps|