Cancer Survivorship Nursing CE Course

uals may live cancer-free for the remainder of their life after initial treatment ends. In contrast, others may live with cancer as a chronic disease or experience periods of cancer relapse and recurrence. Other patients may go on to develop a secondary malignancy that could be related to their primary cancer treatment or may develop a new primary cancer altogether. These patients have unique needs, and cancer survivorship strives to fill this critical gap in care (ACS, 2019).

Core Components of Cancer Survivorship  

Survivorship encompasses several focal areas, including cancer recurrence, new cancer diagnosis, and secondary malignancies. Care is centered on the management of long-term and late effects of treatment, quality of life, economic issues associated with cancer care, as well as the emotional and psychological consequences that accompany a cancer diagnosis, its treatment, and the completion of treatment. Cancer survivorship also includes health promotion, cancer screening, prevention, and early detection of cancers, as well as the impact of other chronic and comorbid conditions (Miller et al., 2019). The core components of survivorship care are outlined below in Table 1.

Table 1. The Core Components of Survivorship Care

Prevention	Prevention of recurrent and new cancers with behavioral lifestyle changes geared toward reducing risk and preventing cancer.
Surveillance	Surveillance for the early detection and treatment of cancer spread, cancer recurrence, or the development of secondary malignancies.
Intervention	Detection of the long-term and late effects of cancer treatment and evidence-based intervention and management for consequences of cancer and its treatment, including medical and psychosocial effects.
Coordination	Coordination between oncologists, specialists, and primary care providers to ensure that all of the survivors’ health needs are met.
Quality of life	Enhancing quality of life as pertains to well-being across four domains: physical, social, psychological, and spiritual.

 (ACS, 2019; ACOS, 2019)

Comorbid Conditions in Cancer Survivors 

Cancer survivorship literature demonstrates that physical inactivity, poor nutrition, and resulting obesity are the most important risk factors (aside from tobacco use) for cancer recurrence, morbidity, and premature death after curative treatment for cancer (Basen-Engquist et al., 2018). Cancer survivors suffer from many comorbid conditions even after their cancer is treated. The most common comorbid conditions in cancer survivors include:

• Diabetes mellitus (type II diabetes),
• Coronary artery disease (CAD),
• Obesity,
• Hyperlipidemia,
• Hypertension,
• Hypothyroidism,
• Depression and cognitive changes,
• Osteopenia/osteoporosis (Mayer et al., 2017; Roy et al., 2018). 

Models of Survivorship Care

Cancer survivorship is recognized as a formal part of the cancer care continuum, but the models of survivorship care delivery continue to evolve. Given the uniqueness and personalization of the cancer survivorship journey, each individual is faced with distinct challenges while navigating down this new path. The adjustment to life after cancer can take a long time and is rarely experienced in a similar way to life before cancer, as many cancer survivors refer to cancer survivorship as their 'new normal'. Unmet needs during this period of transition pose the most significant challenges for cancer survivors, and when left unaddressed, lead to poorer quality of life, greater physical impairment, symptom burden, and heightened anxiety and depression (Mayer et al., 2019). The models for survivorship follow-up care continue to evolve based on the type of cancer, physician preferences and beliefs, resources, geographic location of care, capacity for the delivery of specific services, and many other influences. Despite the distinctions among survivorship models, the primary objectives and outcomes for cancer survivorship are predominantly aligned. The primary focus is on improving the quality of care to enhance long-term health and survival while allowing survivors to achieve their highest quality of life (Halpern et al., 2016). Table 2 demonstrates a conceptual framework of the quality of life and well-being among cancer survivors and the most common issues faced within each domain (Mayer et al., 2019).

Table 2. The Four Domains of Quality of Life for Cancer Survivors

Physical	Psychological	Social	Spiritual
Pain	Pain or distress	Economic and financial issues	Meaning of illness
Nutrition and body mass index (BMI)	Anxiety or Depression	Employment	Life purpose
Functional ability	Control	Family-related issues	Religion
Sexuality, reproductive and infertility	Fear of recurrence	Roles and relationships	Transcendence
Sleep-wake disturbances and fatigue	Confidence	Body image, appearance	Hope, hopefulness
Long-term and latent cardiopulmonary, neurologic, skin, endocrine effects*	Cognition, attention, memory changes	Isolation and social support	Uncertainty

*To be discussed in the next section                                                (Mayer et al., 2019)

Long-term and Late Effects of Cancer and Cancer Treatment

An estimated 75% of survivors experience long-term or late effects of cancer and cancer treatment (Halpern et al., 2016). Long-term effects of cancer and cancer treatment refer to the side effects or complications that linger after treatment ends, can involve all body systems, and can affect all aspects of health. These generally begin during treatment and continue beyond treatment completion. Late (latent) effects may comprise unrecognized complications or side effects that are absent or subclinical at the end of treatment and can occur for months to years after treatment has ended (American Society of Clinical Oncology [ASCO], 2017). Long-term and latent effects are largely dependent on the type of cancer, the type of treatment received, preexisting conditions, and underlying health problems, as well as any treatment-related complications. Effects can be related to chemotherapy, surgery, radiation, hormonal therapy, a combination of any of these, or may be entirely nonspecific. Some of the most commonly reported long-term and latent effects based on treatment modality are summarized below.

• Surgical effects are generally site-specific and may include body image concerns (body dysmorphia), lymphedema, scarring, urinary or fecal incontinence, erectile dysfunction, and chronic pain. 
• Radiation therapy effects are also site-specific and can include lymphedema, hypothyroidism, skin discoloration, pulmonary toxicity, atherosclerosis, risk for skin cancer at previously treated sites, pericardial disease, and pain. Patients who received radiation to the bowel for gastrointestinal malignancies or as a complication of cervical or prostate radiation may endure long-term bowel dysfunction from radiation proctitis. Radiation proctitis is inflammation and damage to the lower parts of the colon, and symptoms often mimic irritable bowel syndrome with persistent abdominal pain, chronic diarrhea, and bloody stools. Patients may also endure the loss of anal sphincter tone leading to fecal inconvenience and are at heightened risk for the development of an anal and/or rectovaginal fistula, which is an abnormal connection between two hollow spaces. 
• Chemotherapy effects are drug and dose-specific and can include sexual dysfunction such as decreased libido, infertility, and dyspareunia (difficult or painful sexual intercourse). The heart may become damaged from specific cardiotoxic chemotherapeutic agents, leading to cardiomyopathy or heart failure. The lungs can become damaged from specific pulmonary toxic chemotherapeutic agents, leading to pulmonary fibrosis, scarring of the lungs, decreased functional capacity of the lungs, and chronic respiratory symptoms. Many patients experience long term neurologic deficits, including cognitive dysfunction, peripheral neuropathy, and neuromuscular impairments (loss of deep tendon reflexes). Some chemotherapy agents may also pose a risk for secondary malignancies several years later. 
• Hormonal therapy is commonly administered over long periods of time and, therefore, often contributes to several ongoing and lasting side effects. In many estrogen-receptor-positive breast cancers, hormonal treatment may continue for 5 to 10 years. Some effects women may endure include premature menopause and accompanying vasomotor symptoms such as hot flashes and night sweats. Other effects include arthralgia (joint pain), vaginal atrophy leading to vaginal dryness and dyspareunia, mood changes, weight gain, bone loss (osteopenia or osteoporosis), and hyperlipidemia. In males, hormonal treatment may induce hot flashes or sexual dysfunction, including erectile dysfunction and loss of libido. 
• Non-treatment specific long-term and late effects can include chronic fatigue or psychosocial and emotional alterations, such as depression, anxiety, and distress (emotional, financial, spiritual) (Gegechkori et al., 2017; Halpern et al., 2016).

Survivorship Care Plans

Survivorship care plans can be compared to discharge planning for hospitalized patients, with the exception that survivorship plans are generally much more extensive. Similar to discharge planning, which should begin upon admission to the hospital, survivorship care planning should commence at diagnosis of cancer and continue throughout treatment (Mayer et al., 2019). Composed of guidelines for monitoring and maintaining health, the intent of survivorship care plans is to improve the quality of care and long-term outcomes of survivors, with recommendations that strongly accentuate the need for survivors to follow cancer monitoring and surveillance standards, maintain a healthy weight, consume a well-balanced diet, avoid tobacco, and engage in regular physical exercise, regardless of tumor type (IOM, 2006). Survivorship care plans should “summarize information critical to the individual's long-term care, such as the cancer diagnosis, treatment, and potential consequences; the timing and content of follow-up visits; tips on maintaining a healthy lifestyle and preventing recurrent or new cancers; legal rights affecting employment and insurance; and the availability of psychological and support services” (ASCO, n.d.). The care plans intend to enhance coordination among the members of the extended care team, as well as improve communication between survivors, their primary care providers, and oncology specialists. These are written documents that seek to inform the primary care provider of all the aspects of care that have transpired to date, as well as ensure continuity of care is maintained while offering evidence-based recommendations for surveillance and screening. Primary care providers play a critical role in providing follow-up care for cancer survivors and are the key to improving the quality of care and outcomes following treatment (ASCO, 2019).

Cancer Survivorship Guidelines

Cancer survivorship guidelines provide a framework for general survivorship care and management of potential long-term and late effects of cancer and its treatment that survivors may experience (National Comprehensive Cancer Network [NCCN], 2019). There are different models of cancer survivorship, which vary widely based on the resources, staffing, and financial capabilities of the cancer institute. While some organizations can provide fully staffed cancer survivorship programs, others utilize the combined efforts of the oncologist and oncology nurse practitioners, along with assistance from oncology nurses or oncology nurse navigators, to facilitate the composition and delivery of survivorship care plans. Ideally, survivorship care should include a transition visit at the end of treatment, in which current symptoms are addressed, the survivorship care plan is reviewed, and the patient is provided a copy of their personalized plan. During this visit, education regarding surveillance and prevention of recurrent cancers should be reviewed, as well as ways to improve health and reduce the risk for new cancers. The patient should receive education on potential late effects of treatment, health promotion, a follow-up plan, as well as resources and referrals as indicated (ASCO, n. d.).

American Society of Clinical Oncology (ASCO) Guidelines

The chance that cancer will recur, and the most likely timing and location of a recurrence, depend on the type of cancer the patient was initially diagnosed with. The goals of a cancer survivorship program, as recommended by ASCO, include the following:

• Prevention of recurrent and new cancers;
• Surveillance for cancer spread or recurrence;
• Assessment of late medical and psychological effects of therapy;
• Adherence and interventions for consequences of cancer and its treatment;
• Coordination between specialists and other health care providers (ASCO, n.d.).

ASCO guidelines are evolving, and currently offer symptom-based (i.e., neuropathy, fatigue, anxiety and depression, fertility preservation), as well as tumor-specific plans (i.e., breast cancer survivorship care guideline) (NCCN, 2019).

National Comprehensive Cancer Network (NCCN) Guidelines

The NCCN guidelines for survivorship are intended as a supplement to the follow-up recommendations within the NCCN's disease-specific guidelines. These standards offer specific survivorship assessment tools to screen patients for individualized symptoms and concerns, and they offer corresponding expert consensus opinion for the management of the identified issue. Management of long-term and latent effects of cancer and its treatment vary based on several factors such as clinical presentation, the severity of symptoms, and access to care. The NCCN offers specialized algorithms and interventions unique to the key symptoms associated with cancer survivorship listed below:

• Cardiac toxicity;
• Anxiety, depression, trauma, and distress;
• Cognitive function;
• Fatigue;
• Lymphedema;
• Hormone-related symptoms;
• Pain;
• Sexual function;
• Sleep disorder;
• Healthy lifestyle;
• Immunization and infections (NCCN, 2019).

The guidelines are intended for use by health care professionals who work with survivors of cancer in the post-treatment period, including those in both the oncology and primary care practices. They offer comprehensive assessment and management algorithms based on the four domains of quality of life and well-being. There is also an extensive focus on preventative care and routine health maintenance (NCCN, 2019). 

American Cancer Society (ACS) Guidelines

The ACS (2016) survivorship guidelines were constructed to assist primary care providers and other clinicians with the clinical care and management of survivors. The ACS currently offers four types of tumor-specific guidelines (breast, prostate, colorectal, head and neck). The ACS survivorship guidelines primarily focus on healthy lifestyles, behavioral changes, physical activity, and weight loss among survivors. Obesity is correlated with an increased risk for many types of cancers and contributes to negative outcomes overall (Lennon et al., 2016). The link between obesity and cancer is well established, yet survivorship studies demonstrate that cancer survivors engage in low levels of physical activity and rarely adopt lifestyle modifications. Nearly two-thirds of patients gain weight during or after treatment (Haggerty et al., 2017). In response, ACS has put forth weight management and healthy lifestyle guidelines that are specifically tailored to the cancer survivorship population. These guidelines address obesity in the context of a cancer diagnosis, inform both patients and providers about the link between obesity and cancer, and focus on prevention, exercise, nutrition, and weight management. They highlight diet and physical activity recommendations during the continuum of cancer care but concentrate primarily on the needs of the survivorship population after treatment ends. The ACS guidelines are Level I evidence and are categorized as strong evidence within the Agency for Healthcare Research and Quality (AHRQ)'s National Guideline Clearinghouse database of evidence-based clinical practice. A national panel of experts in cancer research, prevention, epidemiology, public health, policy, nutrition, physical activity, and cancer survivorship convene to review meta-analyses of randomized clinical trials and identify best clinical practices related to optimal lifestyle behaviors after the diagnosis of cancer. Findings are summarized into structured guidelines that are updated every five years and serve as tools for health care providers to guide cancer survivors toward healthy lifestyles. Table 3 summarizes the main principles of the 2016 ACS guidelines about healthy lifestyle behaviors in cancer survivors (ACS, 2016).

Table 3.  ACS Nutrition and Physical Activity Guidelines for Cancer Survivors

Achieve and Maintain Healthy Weight	Physical Activity	Nutrition
Behavioral strategies One-on-one counseling session with a clinician Structured weight loss programs Support groups Health tracking using online tools or smartphone applications	Engage in regular physical activity Avoid inactivity Return to normal daily activities as soon as possible  Moderate vs. vigorous activity Cardiovascular exercise at least 150 minutes per week with strength training at least two days per week	Limit consumption of high-calorie foods and beverages Food portion control Diet high in vegetables, fruits, whole grains Referral to a Registered Dietician Smoking cessation Limit/avoid alcohol

(ACS, 2016)

Barriers to Survivorship Care

There are several barriers to providing high-quality, patient-centered survivorship care, such as sociodemographic characteristics, lack of training among healthcare professionals, lack of reimbursement structures and insurance coverage, as well the fragmented health care delivery system within the US. A significant barrier to receiving timely, appropriate, and evidence-based cancer care exists among survivors who are uninsured or have inadequate health insurance (Miller et al., 2019). A lack of reimbursement for survivorship care remains a tremendous problem within the US and compromises survivors' access to and receipt of high-quality care. Most US insurers do not provide additional reimbursement for survivorship care, which often includes psychosocial support and care-planning services. Health care providers, particularly oncology specialists and primary care providers, must be adequately educated and trained to identify and treat survivorship issues to bridge this gap in care. Unfortunately, not all providers receive adequate training within these domains, which creates a significant obstacle in providing timely, appropriate, and high-quality survivorship care. Electronic health record systems and limitations with medical record sharing and tracking is another roadblock that often enhances communication gaps between oncologists, specialists, and primary care providers. Additional barriers include language and health illiteracy, issues with transportation, unemployment, and disability associated with cancer and its treatment (Halpern et al., 2016).

The Critical Role of Nurses in Cancer Survivorship

The oversight of a skilled and knowledgeable health care provider is as important as the cancer patient’s transition from active treatment to extended survivorship. While oncologists or nurse practitioners typically conduct survivorship visits, nurses have pivotal roles in survivorship. Nurses are uniquely positioned to facilitate survivorship care and improve the quality of care and patient outcomes. Nurses have the skills to integrate, coordinate care, and serve as patient educators and advocates. Nurses possess the skills and knowledge to assess and manage treatment-related side effects, provide education regarding the symptoms of recurrence, identification of late side effects, and the importance of adopting healthy lifestyle changes. Nurses must ensure that the patient has a knowledgeable primary care provider that specifically addresses survivorship needs and coordinates referrals to specialists as needed. The role of the nurse in survivorship can also reduce the communication gap between providers tremendously and ensure cancer survivors are not lost to follow-up by facilitating communication between oncologists (Nettina, 2019).

Cancer Survivorship Resources 

• American Cancer Society: http://cancer.org
• American Society of Clinical Oncology: http://www.asco.org
• LIVESTRONG (Lance Armstrong Foundation): www.livestrong.org
• National Comprehensive Cancer Network: www.nccn.org
• National Coalition for Cancer Survivorship: www.canceradvocacy.org
• National Cancer Institute, Office of Cancer Survivorship: https://cancercontrol.cancer.gov/ocs/

                                                      References

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