Cancer survivorship refers to the entire process of living with, through, and beyond cancer. A person is considered a cancer survivor from the time of diagnosis until death. (An acute cancer survivor is a person who is disease-free after completing cancer treatment.) Unfortunately, many patients enter survivorship with insufficient direction as to what to do. For instance, a survey of 1,130 oncologists published in the Journal of Clinical Oncology found that although about two-thirds said they always or almost always discuss survivorship, only a third discussed whom patients should see for follow-up care, and fewer than 5% provided patients with a written plan for their survivorship care. The survey also found that of 1,020 primary care providers, only 12% regularly discussed survivorship care recommendations.
Nurses’ strength in educating patients can be leveraged to improve survivorship care. For example, on-cology nurse navigators play an integral role on multidisciplinary, hospital-based teams of oncology pro- fessionals. Together, team members care for the needs of the whole patient, providing interventions that address not just the disease but the patient’s mind and body.
This article enhances nurses’ awareness of the challenges cancer survivors face, including fear of cancer recurrence and late physiologic effects (such as fatigue and cognitive effects) of treatment. It also explains the role of the survivorship nurse navigator in an academic, hospital-based survivorship program. (See Survivorship nurse navigator: Overview and daily responsibilities.)
In 2014, an estimated 1.6 million new cancer cases will be diagnosed in the United States and more than a half-million people will die of cancer. About 14 million Americans are cancer survivors.
Extended survivorship from cancer used to be a rare occurrence. But with new medical advances, early detection, and more targeted treatments, the odds of surviving have markedly improved in many cancers. A prime example of a cancer with a changed natural history due to targeted therapies is multiple myeloma. Many targeted therapies are long term, and adherence plays a pivotal role in achieving long-term overall survival. The importance of keeping follow-up appointments and taking treatments correctly for the prescribed duration can’t be stressed enough. Educating patients to keep appointments, as well as monitoring adherence for such agents as immunomodulatory drugs and proteasome inhibitors is crucial throughout acute treatment and long-term surveillance.
As more cancer patients survive their diagnosis, the lingering effects of cancer therapy can give rise to new challenges, such as post-treatment effects (for instance, fatigue and cognitive changes). Other issues include the psychological (for example, fear of recurrence) and financial (for example, continued insurance coverage) effects of living with cancer in terms of a “chronic” disease. Formal survivorship care can help patients manage these problems.
The American College of Surgeons (ACoS) recommends that programs accredited by the Commission on Cancer (CoC) implement a process to provide survivorship care to all patients who’ve completed cancer therapy by 2015; this care should include appropriate follow-up and surveillance. The 2005 Institute of Medicine report “From Cancer Patient to Cancer Survivor: Lost in Transition” recommends a survivorship care plan and appropriate follow-up methods for all cancer patients, to bridge the gap from active treatment to survivorship. Bridging that gap includes addressing the challenges of both the disease and its treatment.
Some problems cancer survivors may face
The uncertainty of a cure and fear of cancer recurrence or progression are common among survivors and can cause pronounced anxiety. Many patients live from day to day not knowing what their “new normal” is. This makes it hard for them to interpret the physical ailments they may be experiencing. Some may fear a simple headache or joint pain means their cancer has returned or progressed. The anniversary of the cancer diagnosis may be especially distressing, causing the patient to avoid scheduled follow-up exams. Approximately 29% of cancer survivors experience depression, anxiety, and vulnerability for fear of recurrence. Nearly 20% may meet the criteria for posttraumatic stress disorder. Fear of recurrence can have a significant domino effect: patients may become so anxious that they isolate themselves socially, which can lead to work-related, financial, and other difficulties.
Long-term cognitive effects of cancer therapy can last months or even years after treatment ends. Such impairment, sometimes called chemo brain, can be life-altering. Radiation and hormonal therapy also may cause cognitive and memory changes. Approximately 20% to 30% of cancer patients report some degree of thought impairment, described by many as difficulty forming words, memory loss, and poor concentration. The degree of cognitive impairment varies. Some survivors report sporadic impairments; others say the effects are long-lasting, decrease their quality of life, or cause permanent disability.
Fatigue can be a debilitating effect of both cancer and its treatment. The National Comprehensive Cancer Network (NCCN) describes cancer-related fatigue as “a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning.” Fatigue can disrupt the patient’s normal routine and affect quality of life. Activities of daily living may become a challenge. Extreme exhaustion may cause patients to avoid activities they previously performed independently.
Survivorship care model
As patients approach completion of their cancer treatment, they may wonder, “What steps should I take to return to my normal life?” Transitioning from acute survivorship (active treatment) to extended survivorship (after completion of treatment) can provoke various reactions, depending on a survivor’s specific experience. Survivorship care helps smooth the transition from a primary oncologist’s care to a survivorship care model. Ideally, a survivorship care plan should to be established at diagnosis and updated as a patient progresses through the cancer journey.
At Greenville Health System Cancer Institute, the treating oncologist refers patients to a survivorship care team after the initial cancer treatment ends. The team uses a patient-centered, multidisciplinary approach. Survivor visits are conducted in a private nonclinical environment. Before meeting the entire survivorship team, patients fill out a 12-item questionnaire, called a distress inventory.
Then the patient and team members—a medical oncologist, nurse navigator, oncology registered dietitian, and oncology licensed social worker—have a roundtable discussion. Members of each discipline intervene based on collective and collaborative assessment of the patient’s needs. The patient’s nutritional status and needs (for instance, weight gain or loss and daily eating habits) are discussed and the dietitian provides nutritional counseling. In some cases, an exercise routine is recommended to help the patient lose or gain weight as needed, improve energy levels, and increase stamina and self-esteem. The survivorship physician may order oncology rehabilitation and teach the patient about the benefits of combining dietary interventions with exercise. At the patient’s request, evidence-based complimentary integrative therapies (such as acupuncture) are included.
The distress management tool the patient completed earlier is reviewed by the survivorship physician, social worker, and nurse navigator. They screen for categorical items identifying distress, such as practical issues (insurance or housing), physical issues (fatigue and appearance), family issues (child or partner relationships), emotional issues (fear and worry), and spiritual (faith) issues. The social worker and physician address the items that indicate a significant level of distress. (While some distress is expected, about one-third of cancer patients experience a significant amount. Distress doesn’t necessarily result from the cancer diagnosis or experience, but it plays a significant role in the patient’s coping and compliance.)
The team discusses the survivorship plan with the patient and gives the patient a copy, along with the pathology report. The plan details the patient’s entire cancer experience. A three- to four-page document, it’s prepared before the patient’s visit by extracting data from the medical record—including demographic information, healthcare team members’ names, diagnosis date, cancer type and stage, chemotherapeutic agents received and their cumulative dosages, family cancer history with possible genetic risks, comorbidities, treatment toxicities and adverse effects, recommended surveillance schedule, and referrals based on the patient’s needs. For instance, some patients may need densitometry testing, nutritional education and counseling, oncology rehabilitation, and psychosocial support and counseling. The plan include guidelines for recommended follow-up care throughout survivorship.
Significance of survivorship education
Surviving cancer provides a unique incentive for the patient to make positive lifestyle changes and adopt a healthier lifestyle. Behavioral changes, such as adhering to a new diet, starting an exercise routine, or practicing mindfulness to control anxiety, can prove difficult. However, the cancer diagnosis and the feeling of vulnerability it brings can provide a teachable moment that catalyzes the patient to make behavior changes. The survivorship visit is an opportune time for the team to provide patient education about long-term treatment effects and the benefits of good nutrition and exercise.
One goal of the survivorship visit is to encourage patients to share the care plan with their primary healthcare team to help them understand the patient’s needs and participate in care. The care plan empowers patients to take control through knowledge and specific resources that help them grow comfortable with their “new normal”.
On the path to prolonged survival
Cancer survivors desire a return to normal. To achieve their new normal, they need healthcare education and surveillance measures specific to their health and wellness needs. With cancer survival rates increasing, the need for management of long-term side effects, education, surveillance for disease progression and secondary cancers, and promotion of physical, psychological, and psychosocial well-being become priorities. Survivorship care provides the education and support needed for patients to adopt and adapt to positive lifestyle changes. Nurse navigators have the opportunity to teach and give direction to cancer survivors, guiding them on the path of prolonged survival.
Patricia Leighton is an oncology survivorship nurse navigator at Greenville Health System in Greenville, South Carolina.
American College of Surgeons. Cancer Program Standards 2012: Ensuring Patient-Centered Care. http://facs.org/cancer/coc/programstandards2012.pdf. Accessed March 7, 2014.
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