Cancer Survivorship Guidelines

Updated: Oct 13, 2016
  • Author: Winston W Tan, MD, FACP; more...
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Overview

Overview

Survivorship has become an important aspect of cancer care. With the development of targeted and multi-modality treatments, and more effective treatments generally, prolonged survival or even cure has become commonplace for patients with certain cancers, such as testicular cancer, some lymphomas, breast cancer, colon cancer, and some leukemias, among others.

For all cancers diagnosed in 2005-2011, the 5-year relative survival rate was 69%, up from 49% during 1975-1977. [1] As of January 1, 2016, more than 15.5 million cancer survivors were alive in the United States; by January 1, 2026, that number is expected to increase to more than 20 million. [2]

The long-term care of these patients poses a significant challenge for the practicing hematologist/oncologist. Developing a survivorship plan is mandatory, because management can affect quality of life and even outcomes. The Institute of Medicine in 2006 recommended that cancer patients have a survivorship plan that addresses the following issues [3] :

  • Prevention of recurrent and new cancers, and of other late effects
  • Surveillance for cancer spread, recurrence, and secondary cancers
  • Assessment of medical and psychosocial late effects
  • Intervention for consequences of cancer and its treatment
  • Coordination between primary and specialty care

Many cancer survivors have physical/medical, psychological, social, spiritual, financial, and informational needs and concerns. The American Cancer society identified cancer recurrence, financial issues, fatigue, sleep-related problems, and job-related issues as the principal concerns in these patients. [4] Surveys indicate that the current standard of care does not adequately address these issues. 

Recently, much progress has been made toward improving follow-up care. An increasing number of survivorship programs are addressing the needs of cancer survivors, a small but growing body of research is documenting survivorship needs and risks, and resources for providers and survivors are increasingly available.

The Commission on Cancer (CoC) of the American College of Surgeons, which sets standards for cancer care and provides accreditation for institutions that care for the majority of cancer patients, announced a new patient-centered Survivorship Care Planning standard in 2012, and updated it in 2016. [5] The standard encompasses the requirements that cancer programs must meet to earn and maintain CoC accreditation. Initially, this standard was to be phased in by 2015; in 2014, however, the CoC extended the time frame for full implementation to 2019. [6]

In 2014, the National Accreditation Program for Breast Centers (NAPBC) issued a set of standards that include breast cancer survivorship care. The standards cover follow-up surveillance, rehabilitation, and health promotion/risk reduction. [7]  The Oncology Nursing Society, which is officially represented in both the CoC and the NAPBC, has developed a report to guide healthcare providers in managing patients throughout cancer survivorship, Red Flags in Caring for Cancer Survivors. [8]

Malin et al compiled a list of existing quality indicators related to survivorship that have been established by the American Society of Clinical Oncology’s Quality Oncology Practice Initiative (QOPI), National Quality Forum, National Initiative on Cancer Care Quality and RAND Corporation. [9] Three indicators were identified that apply to all cancers, seven apply to breast cancer, five apply to colorectal cancer, two apply to prostate cancer, and one applies to melanoma. The authors also note that most of the indicators are based on level II or III evidence (level I is the strongest).

Rowland and Ganz proposed metrics for success at the level of the survivor (eg, decreased cancer morbidity), the clinician (eg, better ability to coordinate care), and the system (eg, reduced duplication of services). These can be used to evaluate the impact of survivorship care planning and different care models. [10]

Pratt-Chapman et al proposed measures for survivorship patient navigation related to health care utilization (access to clinical care, awareness of late and long-term effects, and access to supportive care) and patient-reported outcomes (quality of life, self-efficacy and activation, satisfaction with care and navigation, health knowledge and literacy and healthy behaviors). [11] In addition, care transition measures that have been validated and used in other disease areas may be applicable to cancer survivorship transitions. [12]

Several organizations have developed guidelines to facilitate the implementation of survivorship plans. Besides the regulatory requirement for a survivorship plan, such plans are important for adequately assessing patients’ needs and addressing quality of life after they complete their treatments for cancer.

In most practices, survival plans are often difficult to implement. Referral to a tertiary care center with multidisciplinary/multi-specialty services may be necessary to adequately meet a patient’s needs.

The survivorship plan or prescription should be viewed as a roadmap for the future care and follow-up of the cancer patient. In addition, the plan can help secure the transition from cancer patient to cancer survivor, which is where patients are at risk for falling through the cracks in the system.

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General Guidelines

National Comprehensive Cancer Network guidelines

The National Comprehensive Cancer Network (NCCN) has developed guidelines to provide a framework for general survivorship care, management of potential long-term and/or late effects of cancer and its treatment, and preventive healthcare. [13] The guidelines are divided into two main aspects, as follows:

  • Physical and psychosocial effects of cancer treatment
  • Preventive health and wellness after a diagnosis of cancer

The NCCN guidelines cover the following distinct psychosocial and physical effects of treatment [13] :

  • Cardiac toxicity
  • Anxiety and depression
  • Cognitive function
  • Fatigue
  • Pain
  • Sexual function
  • Sleep disorders

The preventive health recommendations focus on the following topics [13] :

  • Physical activity
  • Nutrition and weight management
  • Immunizations and infections

Children’s Oncology Group guidelines

Children and young adults who survive cancer require plans that take into account their long life expectancy and provide extended follow-up to facilitate early detection and treatment of adverse effects, as well as of such secondary conditions as cardiac disease and cancers that can develop as a consequence of their cancer treatments. There are also psychosocial and financial effects of care that can have long-term consequences.

In 2013, the Children’s Oncology Group (COG) released guidelines focused on the lifetime screening needs for complications or adverse effects of therapy for cancer in children, adolescents, and young adults. The guidelines recommendations begin to apply 2 years after the completion of treatment and are not intended as guidance for follow-up of the primary disease. [14]

The COG anticipates that adoption of these guidelines might reduce the impact of late complications on this at-risk population by promoting healthy lifestyle choices and providing ongoing monitoring of health status. However, the COG acknowledges that the resulting enhanced awareness of possible complications could increase patient anxiety; the COG also recognizes the potential for false-positive screening evaluations, which could lead to unnecessary further workup. Finally, costs of long-term follow-up care may be prohibitive for some patients, particularly those whose insurance does not cover the recommended screening evaluations.

Preventive screening recommendations for adult-onset cancers are organized by organ, population risk factors, and highest risk factors for populations considered at significantly increased risk for each specific malignancy. The guidelines utilize the American Cancer Society screening recommendations for those individuals whose risk is equivalent to the standard risk of a person who has not had cancer. Recommendations are provided for those groups whose risk is determined to be significantly higher than that of the standard risk group.

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Fatigue

The American Society of Clinical Oncology (ASCO) guidelines for screening, assessment, and management of fatigue in adult cancer survivor [15]  are adapted from National Comprehensive Cancer Network (NCCN) guidelines for cancer-related fatigue and survivorship, [16] as well as pan-Canadian guidelines for care of cancer-related fatigue. [17] It should be noted that the pan-Canadian guidelines were adapted from the 2009 NCCN guidelines for cancer-related fatigue and the 2007 Oncology Nursing Society guidelines for evidence-based interventions for fatigue during and after cancer and its treatment. Consequently, there are few variations in the recommendations across the guidelines.

The NCCN recommendations include the following [16] :

  • All patients should be screened for fatigue at their initial visit, at regular intervals during and following cancer treatment, and as clinically indicated
  • Screening should be performed and documented using a quantitative or semi-quantitative assessment; because fatigue is rarely an isolated symptom, a multi-symptom screening tool may have greater clinical utility
  • Patients who report moderate to severe fatigue should undergo a comprehensive and focused assessment
  • All patients should be offered specific education about fatigue after treatment (eg, information about the difference between normal and cancer-related fatigue, persistence of fatigue after treatment, and causes and contributing factors)
  • Patients should be offered advice on general strategies that help manage fatigue (eg, physical activity, guidance on self-monitoring of fatigue levels)
  • If treated for fatigue, patients should be observed and reevaluated on a regular basis to determine whether treatment is effective or needs to be reassessed
  • Address all medical and substance-induced treatable contributing factors first (eg, comorbidities, medications, nutritional issues, activity level)
  • Maintain adequate levels of physical activity (category 1 recommendation)
  • Survivors at higher risk of injury (eg, those with neuropathy, cardiomyopathy, or other long-term effects of therapy) should be referred to a physical therapist or exercise specialist
  • Provide psychosocial interventions, including cognitive-behavioral therapy (CBT), behavior therapy, mindfulness-based stress reduction, psycho-educational therapies, and supportive therapies (category 1)
  • Nutritional consultation and cognitive behavioral therapy for sleep disturbances (category 1) are also options
  • Psychostimulants (methylphenidate) should be prescribed only after the exclusion of other causes of fatigue and failure of other interventions
  • Modafinil is not recommended

 

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Lifestyle

World Cancer Research Fund/American Institute for Cancer Research guidelines

In 2007, the World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) released healthy lifestyle recommendations for cancer prevention, which have since been validated in a number of studies showing improved health for cancer survivors who adhered best to the recommendations. The recommendations include the following [18] :

  • Maintain body weight within the normal age throughout adult life; avoid weight gain and increases in waist circumference
  • Engage in moderatel physical activity equivalent to brisk walking for at least 30 minutes a day; as fitness improves, increase moderate physical activity to 60 minutes a day or 30 minutes or more of vigorous physical activity
  • Avoid sugary drinks and limit consumption of energy-dense foods
  • Eat at least five portions a day of a variety of vegetables, fruits, whole grains, and legumes such as beans
  • Limit consumption of red meats and avoid processed meats
  • Limit alcoholic drinks to two a day for men and one a day for women
  • Avoid salty foods and foods processed with salt (sodium)
  • Dietary supplements are not recommended for cancer prevention
  • All cancer survivors should receive nutritional care from an appropriately trained nutritionist

American Cancer Society lifestyle guidelines

In 2012, the American Cancer Society (ACS) updated its nutrition and physical activity guidelines for cancer survivors. [19] Overall, the ACS recommendations are similar to those of the WCRF/AICR. However, the ACS defines a continuum of cancer survivorship that begins at diagnosis and includes three phases: treatment and recovery, long-term disease-free living or living with stable disease, and advanced cancer through end of life. The recommendations given for each stage as well as by cancer site are more detailed than those of the WCRF/AICR.

The ACS recommends that nutritional assessment begin as soon after diagnosis as possible and take into consideration the following [19] :

  • Treatment goals (curative, control, or palliation)
  • Nutritional status
  • Anticipated nutrition-related symptoms

Nutrition during treatment and recovery

The ACS’s recommended goals of nutritional care are as follows:

  • Prevent or resolve nutrient deficiencies
  • Achieve or maintain a healthy weight
  • Preserve lean body mass
  • Minimize nutrition-related side effects
  • Maximize quality of life

The ACS nutrition recommendations are as follows:

  • Patients should consume enough calories to prevent weight loss, especially those patients who are malnourished or receiving interventions affecting the gastrointestinal tract
  • Clinicians should provide individualized nutritional advice to improve dietary intake and potentially decrease toxicities associated with cancer treatments
  • Use vitamins, minerals, and other dietary supplements during cancer treatment with caution; individuals should first assess whether they are nutrient deficient, avoid ingesting supplements that exceed more than 100% of the Daily Value, and consider limiting dietary supplement use to therapeutic interventions for chronic conditions such as osteoporosis and macular degeneration, for which scientific evidence supports the likelihood of benefits and low risk of harm

Exercise during treatment

The ACS exercise recommendations are as follows:

  • Exercise is safe and feasible during cancer treatment and may improve physical functioning, fatigue, and multiple aspects of quality of life
  • The decision regarding when to initiate and how to maintain physical activity should be individualized to the patient's condition and personal preferences
  • Persons receiving chemotherapy and/or radiation therapy who are already on an exercise program may need to exercise at a lower intensity and/or for a shorter duration during their treatment
  • For those who were sedentary before diagnosis, low-intensity activities such as stretching and brief, slow walks should be adopted and slowly advanced
  • For older individuals and those with bone metastases or osteoporosis, or significant impairments such as arthritis or peripheral neuropathy, careful attention should be given to balance and safety to reduce the risk of falls and injuries
  • Physical therapy during bed rest is advisable to maintain strength and range of motion and can help to counteract fatigue and depression

Long-term disease-free living or stable disease

The ACS recommendations are as follows [19] :

  • Achieve and maintain a healthy weight
  • Engage in regular physical activity
  • Avoid inactivity and return to normal daily activities as soon as possible following diagnosis
  • Aim to exercise at least 150 minutes per week
  • Include strength-training exercises at least 2 days per week
  • Achieve a dietary pattern that is high in vegetables, fruits, and whole grains

Physical activity in cancer survivors

Despite the many benefits of exercise for cancer survivors, the effects of treatment may also increase the risk of exercise-related injuries and adverse effects. Therefore, specific precautions may be advisable, including the following [19] :

  • Survivors with severe anemia should delay exercise until the anemia improves
  • Survivors with compromised immune function should avoid public gyms and public pools until their white blood cell counts return to safe levels; survivors who have completed a bone marrow transplant are advised to avoid such exposures for 1 year after transplantation
  • Survivors experiencing severe fatigue from their therapy may be encouraged to do 10 minutes of light exercises daily
  • Survivors undergoing radiation therapy should avoid chlorine exposure to irradiated skin (eg, from swimming pools)
  • Survivors with indwelling catheters or feeding tubes should avoid microbial exposures (eg, pool, lake, or ocean water), as well as resistance training of muscles in the area of the catheter to avoid dislodgment
  • Survivors with peripheral neuropathies or ataxia may have a reduced ability to use the affected limbs because of weakness or loss of balance; use of a stationary reclining bicycle may be an alternative to walking on a treadmill

Alcohol intake

Alcohol intake has both positive and negative health effects. The ACS recommends that clinicians tailor their advice on alcohol consumption to the individual cancer survivor, with consideration of the following:

  • Cancer type and stage
  • Treatment
  • Treatment-related side effects
  • Risk factors for recurrence or new primary cancers
  • Comorbid conditions

Specific considerations include the following:

  • It is reasonable to recommend avoiding or limiting alcohol intake in cancer survivors with mucositis and cancer patients beginning head and neck radiation therapy or chemotherapeutic regimens that put them at risk for mucositis
  • The link between alcohol intake and risk of some primary cancers has been established for cancers of the mouth, pharynx, larynx, esophagus, liver, and breast; and, for some forms of alcoholic beverages, colon cancer; in individuals who have already received a diagnosis of cancer, alcohol intake could also increase their risk of new primary cancers of these sites
  • In patients with head and neck cancer, continued alcohol consumption (as well as smoking) leads to lower survival rates, thus supporting the need to limit alcohol consumption in this population

National Comprehensive Cancer Network lifestyle guidelines

The NCCN guidelines for nutrition and physical activity are in general agreement with those of WCRF/ AICR and ACS, but also include additional and/or divergent recommendations. [13]

Supplement use

NCCN recommendations are as follows:

  • Supplement use is not recommended for most survivors except in instances of documented deficiencies, inadequate diet, or comorbid indications (eg, osteoporosis, ophthalmologic disorders, cirrhosis)
  • Providers should assess supplement use at regular intervals and ask about reasons for supplement use and supplement ingredients
  • Survivors of certain cancers (eg, gastric cancer) are at risk for vitamin deficiencies based on their cancer treatment; in these patients, deficiencies should be assessed and addressed as needed

Weight management

NCCN recommendations are as follows [13] :

  • Weight gain should be a priority for underweight survivors
  • Maintenance of weight should be encouraged for normal-weight survivors
  • Weight loss should be a priority for overweight or obese survivors
  • No current evidence supports the use of weight loss supplements in cancer survivors
  • Referrals to registered dietitians, especially those who are Certified Specialists in Oncology Nutrition (CSO) and members of the Oncology Nutrition Dietetic Practice Group of the Academy of Nutrition and Dietetics, should be considered

Physical activity

NCCN recommendations are as follows [13] :

  • Avoid inactivity; engage in general physical activity daily, including exercise, daily routine activities, and recreational activities
  • Physical activity and exercise recommendations should be tailored to the individual survivor’s abilities and preferences
  • Overall volume of weekly activity should be 150 minutes of moderate-intensity activity or 75 minutes of vigorous-intensity activity or equivalent combination; two to three sessions per week of strength training that include major muscle groups; stretching of major muscle groups should be done on a routine basis

Strategies to increase physical activity include the following:

  • Physician and/or fitness expert recommendation
  • Supervised exercise program or classes
  • Telephone counseling
  • Motivational counseling
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Disease-Specific Guidelines

The American Cancer Society (ACS) has published survivorship care guidelines for the following cancer types:

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Dealing with Recurrence

Cancer recurrence is often devastating to patients. Many of them will have thought that the treatment they received had cured the disease. A clear plan by the hematologist/oncologist for followup should be outlined in the survivorship plan. Risk factors for recurrence should be thoroughly reviewed with the patient. If surveillance reveals a suspicious finding, the abnormality should be thoroughly tested. If a biopsy can be done, it should be done immediately if possible, to provide the urgent information that the patient needs and allow appropriate treatment to be started.

The amount of anxiety and emotional, physical, and psychological stress that even a screening test for recurrence can provoke in patients should not be underestimated. Certain patients even can dwell on these issues for months and years, which can lead to emotional and even physical disability. Physicians should be vigilant in asking about these issues so the appropriate referral for help can be made, including psychological consultation, help through support groups, and emotional encouragement from family, friends, and other social circles that can optimize and enhance emotional well-being. Spiritual well-being often correlates with better coping in the event of recurrence and better tolerance of ongoing treatments. [20]

 

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