Cancer Survivorship Guidelines

Updated: May 20, 2022
  • Author: Winston W Tan, MD, FACP; more...
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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.

In the United States since the early 1960s, the 5-year relative survival rate for all cancers combined increased from 39% to 68% among White people and from 27% to 63% among Black people. [1] As of January 1, 2019, more than 16.9 million cancer survivors were alive in the United States; by January 1, 2030, that number is expected to increase to more than 22 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. The standard encompasses the requirements that cancer programs must meet to earn and maintain CoC accreditation. [5]

In 2018, the National Accreditation Program for Breast Centers (NAPBC) issued an update to a 2014 set of standards that include breast cancer survivorship care. The standards cover follow-up surveillance, rehabilitation, and health promotion/risk reduction. [6]  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. [7]

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. [8] 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. [9]

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). [10] In addition, care transition measures that have been validated and used in other disease areas may be applicable to cancer survivorship transitions. [11]

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.


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. [12] 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 [12] :

  • Anthracycline-induced cardiac toxicity
  • Anxiety, depression, trauma, and distress
  • Cognitive function
  • Fatigue
  • Lymphedema
  • Pain
  • Hormone-related symptoms
  • Sexual function
  • Sleep disorders
  • Issues around employment and return to work

The preventive health recommendations focus on the following topics [12] :

  • Physical activity
  • Nutrition and weight management
  • Supplement use
  • 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 2018, the Children’s Oncology Group (COG) released updated guidelines focused on the lifetime screening needs for complications or adverse effects of therapy for cancer in children, adolescents, and young adults. The COG recommendations begin to apply 2 years after the completion of treatment and are not intended as guidance for follow-up of the primary disease. [13]

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.


Psychological Symptoms

Anxiety, depression, trauma, and distress

National Comprehensive Cancer Network (NCCN) guidelines include the following recommendations [12] :

  • Screen all cancer survivors for anxiety, depression, and distress, especially at times of disease transition, surveillance, significant loss, major life events, and social isolation. Screening is also recommended as part of the overall workup in patients who present with multiple or repeated somatic complaints.

  • Cancer survivors with anxiety, depression, post-traumatic stress disorder (PTSD), or another psychiatric disorder that is impacting quality of life should undergo a safety evaluation to assess whether they are a danger to themselves or others

Nonpharmacologic interventions

NCCN recommendations for all survivors include the following:

  • Address treatable contributing factors (eg, pain, sleep disturbance, fatigue, toxic metabolic/endocrine/other medical comorbidities, substance use disorder).
  • Provide reassurance that worry, stress, fear of recurrence, anxiety, and depression are common problems among cancer survivors and are treatable.
  • Provide support and education to patients and their family regarding normal recovery phases after treatment, common stresses, distress and fears, and strategies for managing uncertainty and distress
  • Provide resources for social support networks and specific social, emotional, spiritual, intimacy, and practical problem needs, including online and mobile phone apps. Consider referral to social work services, patient navigator, and/or financial navigator (if available).
  • Develop a plan for regular physical activity and healthy nutrition.
  • For adjustment disorder or distress without safety risk, mania, or psychosis, refer to a therapist, preferably one with psycho-oncology training.
  • Cognitive behavioral therapy (CBT) (eg, mindfulness, behavioral activation, structured CBT) can be effective for distress, fear of recurrence, trauma symptoms, insomnia, or other symptoms related to distress and can be delivered as individual therapy, in structured groups, or with digital modalities.
  • Refer to a social worker for complex social factors.
  • Consider referral to chaplain for spiritual support for religious conflict, concerns about death and afterlife, guilt, grief, and meaning and purpose in life
  • Consider referral for integrative therapies (eg, mindfulness meditation, imagery/hypnosis, yoga)
  • Consider referral for couples, family, caregiver, or relationship counseling/support
  • For moderate to severe major depression, generalized anxiety, panic, or PTSD symptoms, refer for evaluation and treatment by a mental health professional.

Pharmacologic interventions

Consider referral to mental health professional. First-line treatment options are as follows:

  • Selective serotonin reuptake inhibitors (SSRIs) - Consider for concomitant hot flashes
  • Serotonin-norepinephrine reuptake inhibitors (SNRIs) - Consider for concomitant pain or neuropathic pain or hot flashes
  • Benzodiazepines (ie, clonazepam, lorazepam) -  For acute anxiety relief or while waiting for an antidepressant to take effect; in the latter setting, adjust the dose once the SSRI or SNRI is fully effective and symptoms have partially or completely abated

Inform patients of potential adverse effects and counsel that the benefit of an SSRI or SNRI may not be evident until they have taken it at a therapeutic dose for up to 2 to 6 weeks. Counsel patients who are taking an SSRI, SNRI, or benzodiazepine that they may experience withdrawal symptoms if they discontinue the drug abruptly. Withdrawal symptoms, which are more common with venlafaxine and paroxetine, may include restlessness, akathisia, GI upset, dizziness, tingling, and sleep disruption; they may be life-threatening and may require a mental health specialist.

The NCCN guidelines advise against using the  following medications as first-line treatments:

  • Tricyclic antidepressants
  • Tetracyclic antidepressants
  • Serotonin modulators
  • Monoamine oxidase inhibitors

Cognitive Dysfunction

Impairment of short-term and working memory, attention, executive functions, and processing speed occurs commonly in women with breast cancer who have undergone chemotherapy (so-called chemobrain). Cancer-related cognitive dysfunction has also been reported in patients with other non–central nervous system cancers, and may result from other forms of treatment (eg, endocrine therapy, surgery) or from the cancer itself. [14]

Cognitive complaints can be assessed with neuropsychological tests, such as the Functional Assessment of Cancer Therapy—Cognition (FACT-Cog) test, which was specifically developed to assess cognitive complaints in cancer patients. [14, 15] However, patients may have sufficient compensatory mechanisms (ie, activation of additional brain regions) to achieve normal results on neuropsychological testing despite cognitive problems in daily life. [14] Consequently, patient self report is important in diagnosis. [16, 14]

National Comprehensive Cancer Network (NCCN) guidelines include the following recommendations regarding cancer-associated cognitive dysfunction [12] :

  • Systematically assess cognitive function in cancer survivors, using a focused history and evaluation of potentially reversible contributing factors (eg, depression, sleep disturbance, fatigue, delirium).
  • Validate patients’ experience of cognitive dysfunction associated with cancer diagnosis and treatment, and reassure them that this dysfunction is often not progressive.
  • Teach enhanced organizational strategies.
  • Encourage patients to do the most cognitively demanding tasks at the time of day when energy levels are highest.
  • Provide information about relaxation or stress management skills for daily use.
  • Recommend routine physical activity.
  • Recommend limiting use of alcohol and other agents that alter cognition and sleep.
  • Consider meditation, yoga, mindfulness-based stress reduction, and cognitive training (ie, brain games).
  • Optimize management of possible contributing factors.
  • Consider referral for neuropsychological evaluation/testing.
  • Consider referral for cognitive rehabilitation (eg, occupational therapy, speech therapy, neuropsychologist).
  • Consider referral for psychotherapy.
  • Second-line interventions that may be considered include referral to a memory clinic for patients with continuing memory problems despite rehabilitation, and use of medications (methylphenidate, modafinil, or donepezil) in select patients or certain clinical scenarios.


The American Society of Clinical Oncology (ASCO) guidelines for screening, assessment, and management of fatigue in adult cancer survivors [17]  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. [18] 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 using age-appropriate measures, 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, patients should be screened for multiple signs and symptoms that may vary among diagnoses, treatments, and stage of disease.

  • 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).

  • Yoga may reduce fatigue and is recommended for patients who have completed treatment (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), mindfulness-based stress reduction, psycho-educational therapies, and supportive expressive therapy (eg, support groups, counseling, journal writing) (category 1).

  • Nutritional consultation, acupuncture, and bright white light therapy are other nonpharmacologic options.

  • CBT may be used for insomnia (category 1). 

  • Psychostimulants (methylphenidate) may be considered, but only after the exclusion of other causes of fatigue and failure of other interventions.

  • Modafinil is not recommended.




World Cancer Research Fund/American Institute for Cancer Research guidelines

In 2018, the World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) released an update to its healthy lifestyle recommendations for cancer prevention, which have been validated in a number of studies showing improved health for cancer survivors who adhered best to the recommendations. The recommendations include the following [19] :

  • Maintain body weight within the normal age throughout adult life; avoid weight gain and increases in waist circumference
  • Engage in moderate 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 2022, the American Cancer Society (ACS) updated its nutrition and physical activity guidelines for cancer survivors. [20] The guidelines summarize the evidence on the effect of adiposity, physical activity, diet, and alcohol consumption on long-term disease-free living or stable disease with regard to the following cancers:

  • Breast cancer
  • Cancers of the upper aerodigestive tract and digestive system
  • Genitourinary cancers
  • Gynecologic cancers
  • Lung cancer
  • Hematologic cancers
  • Childhood cancers

In general, the ACS recommends that nutritional assessment and counseling begin as soon after diagnosis as possible and have the following goals [20] :

  • Preventing or resolving nutrient deficiencies
  • Preserving muscle mass
  • Managing side effects of treatments that may adversely affect nutritional status.

The ACS also recommends beginning physical activity assessment and counseling as soon as possible after diagnosis, with the goal of helping patients prepare for treatments, tolerate and respond to treatments, and manage some cancer-related symptoms and treatment-related side effects. [20]

The ACS recommendations for improving long-term health and increasing the likelihood of survival are as follows:

  • Avoid obesity and maintain or increase muscle mass through diet and physical activity.
  • Engage in regular physical activity, with consideration of type of cancer, patient health, treatment modalities, and symptoms and side effects.
  • Follow a healthy eating pattern that meets nutrient needs and is consistent with recommendations to prevent chronic disease

To reduce the risk of a new cancer, the ACS recommends the following:

  • Keep body weight within the healthy range and avoid weight gain in adult life.
  • Be physically active. Adults should engage in 150-300 min of moderate-intensity physical activity per week (or 75-150 min of vigorous-intensity physical activity); striving to meet or exceed the upper limit of 300 min is ideal. Children and adolescents should engage in at least 1 hour of moderate-intensity or vigorous-intensity activity each day. Move more and sit less.
  • Follow a healthy eating pattern at all ages.

A healthy eating pattern includes the following:

  • Foods that are high in nutrients in amounts that help achieve and maintain a healthy body weight
  • A variety of vegetables: dark green, red, and orange, fiber-rich legumes (beans and peas), and others
  • Fruits, especially whole fruits with a variety of colors
  • Whole grains

    A healthy eating pattern limits or does not include the following:

  • Red and processed meats
  • Sugar-sweetened beverages
  • Highly processed foods and refined grain products.
  • Alcohol

It is best not to drink alcohol, but people who do choose to drink alcohol should limit their consumption to no more than 1 drink per day for women and 2 drinks per day for men.

The previous ACS guideline,published in 2012, provided more specific recommendations across cancer types. [21] Overall, the 2012 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.

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 2012 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

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 [21] :

  • 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

Specific considerations regarding alcohol consumption 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 those 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. [12]

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 [12] :

  • 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 [12] :

  • 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 150-300 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
  • Use of pedometer or wearable fitness tracker to monitor activity goals
  • Encourage social support (exercise buddy or group)

Sexual Function

Guidelines on sexual problems and sexual function in people with cancer have been issued by the following organizations:

  • American Society of Clinical Oncology (ASCO) [22]
  • National Comprehensive Cancer Network (NCCN) [12]

The ASCO clinical practice guideline on interventions to address sexual problems in people with cancer is an adaptation of a Cancer Care Ontario guideline and is applicable to men and women (and their partners) of all sexual orientations living with cancer of any type; patients previously treated for a childhood cancer were not included. Recommendations include the following [22] :

  • A member of the health care team should initiate a discussion with the patient regarding sexual health and dysfunction resulting from the cancer or its treatment. The ASCO Expert Panel believes that introduction of the topic should be held with the patient alone, with the option of later partner inclusion if the patient desires. Discussions should be congruent with the patient’s literacy level, cultural/religious beliefs, and sexual orientation. This issue should be raised with the individual at the time of diagnosis and continue to be reassessed periodically throughout follow-up.
  • Psychosocial and/or psychosexual counseling should be offered to all patients with cancer, with the goal of improving sexual response, body image, intimacy and relationship issues, and overall sexual functioning and satisfaction. In patients who have a partner, couples-based interventions may prove more effective.
  • Medical and treatable contributing factors should be identified and addressed first.

The NCCN guideline recommends including the following pair of questions on sexual function as part of a 29-question survivorship care survey [12] :

  • Do you have any concerns regarding your sexual function, sexual activity, sexual relationships, or sex life?
  • Are these concerns causing you distress? 

In patients who have concerns and wish to discuss them, the NCCN recommends considering a sexual screening tool and taking the following steps:

  • History and physical examination
  • Review oncologic history (ie, diagnosis/stage, surgeries, systemic treatment, local radiation therapy, endocrine therapy)
  • Explore treatment-related impact on sexual function
  • Assess for signs or symptoms of estrogen or androgen deprivation or refer to the appropriate specialist
  • Review medical history for conditions associated with sexual dysfunction (eg, depression, diabetes, hypertension)
  • Assess total morning testosterone in males as indicated
  • Review the medication list for drugs that can impact sexual function (eg, SSRIs, beta blockers)

When screening indicates an issue that the patient does not want to discuss, referral to a sexual health specialist should be offered. In addition, for general distress, anxiety, or depression, the following interventions are recommended:

  • Anxiolytics
  • Antidepressants
  • Integrative therapies (eg, yoga, meditation) 

Recommendations for women

ASCO recommendations include the following [22] :

  • In addition to psychosocial counseling (individual, couple, or group), women with cancer who have problems with overall sexual functioning may also benefit from physical exercise or pelvic floor physiotherapy.
  • For women with vasomotor symptoms, hormone therapy is the most effective intervention. Clinical hypnosis should also be offered. Systemic hormone therapy is contraindicated in women with hormone-sensitive breast cancer. For women unwilling or unable to use hormonal therapy, alternatives include paroxetine, venlafaxine, gabapentin, or clonidine. Paroxetine and fluoxetine should not be offered to women with breast cancer taking tamoxifen.

The NCCN concurs that menopausal hormone therapy (MHT) is the most effective treatment for vasomotor symptoms. Contraindications to MHT include the following [12] :

  • History of hormonally mediated cancers
  • History of abnormal vaginal bleeding
  • Active or recent thromboembolic event
  • Pregnancy
  • Active liver disease

MHT should be used with caution in women with coronary heart disease or hypertension, those at increased genetic risk for cancer, and current smokers.

Addditional NCCN recommendations for the use of MHT are as follows [12]

  • Use the lowest dose possible to control symptoms
  • Tissue-selective estrogen complex (TSEC; conjugated estrogens/bazedoxifene) is contraindicated in survivors of hormonally dependent cancers
  • Custom-compounded bioidentical hormone therapy lacks evidence supporting claims that it is a safer and more effective alternative to standard hormone therapies
  • Patients should be referred to a specialist for MHT management
  • In younger survivors experiencing menopause, MHT or oral contraceptives, if not contraindicated, should be considered for both symptom relief and cardiac and bone benefits

Other NCCN-recommended pharmacologic treatments for relief of vasomotor symptoms include the following:

  • Low-dose antidepressants
  • Anticonvulsants
  • Neuropathic pain relievers
  • Antihypertensives

Nonpharmacologic recommendations include the following [12] :

  • Acupuncture
  • Exercise
  • Weight loss in overweight or obese patients
  • Cognitive-behavioral therapies
  • Yoga
  • Hypnosis

For women with symptoms of vaginal and/or vulvar atrophy (eg, dryness), ASCO recommends the following stepwise approach [22] :

  • Lubricants for all sexual activity or touch, in addition to vaginal moisturizers to improve vulvovaginal tissue quality (applied 3-5 times/wk)
  • For unresponsive or more severely symptomatic cases, low-dose vaginal estrogen can be used; for women with hormone-positive breast cancer who are symptomatic and not responding to conservative measures, low-dose vaginal estrogen can be considered after a thorough discussion of risks and benefits.
  • Lidocaine can also be offered for persistent introital pain and dyspareunia.
  • Women with a history of breast cancer who are on aromatase inhibitors and have not responded to previous treatment may be offered vaginal dehydroepiandosterone.
  • The selective estrogen receptor modulator ospemifene may be offered to postmenopausal women without a history of breast cancer who are experiencing dyspareunia, vaginal atrophy, or other vaginal pain.

To deliver estrogen therapy for vaginal dryness in menopausal women with hormonally sensitive tumors, NCCN recommends use of rings and suppositories over creams, based on limited dated in breast cancer survivors suggesting that minimal systemic absorption occurs. Additional treatment recommendations include topical testosterone and referral to a specialist for management. [12]

ASCO recommends that women on aromatase inhibitors who are experiencing arthralgia that interferes with intimacy be offered pain relievers. [22]

For women using pads for leakage and/or discharge, clinicians may suggest the use of skin protectants/sealants applied to the external folds of the vulva. [22]

Vaginal dilators may be of benefit in the management of vaginismus and/or vaginal stenosis; this can be offered to any patients having pain with examinations and/or sexual activity but is particularly important for women treated with pelvic (or vaginal) radiation therapy. Benefit is greatest when started early.  Dilators should not be recommended on the basis of sexual activity or sexual orientation but, rather, to all women at risk for vaginal changes to be proactive in their sexual and vulvovaginal health. [22]

For symptoms of pain with sexual activity, the NCCN guidelines offer the following treatment recommendations [12] :

  • Vaginal moisturizers, gels, oils, topical vitamin D or E
  • Vaginal dilators
  • Ospemifene
  • Prasterone
  • Pelvic physical therapy
  • Topical anesthetics

To treat lack of desire, libido or intimacy, the NCCN recommends considering the following:

  • Androgens
  • Bupropion
  • Buspirone
  • Flibanserin

ASCO advises that cognitive-behavioral therapy and pelvic floor (Kegel) exercises may be useful to decrease anxiety and discomfort and can lower urinary tract symptoms. Pelvic floor physiotherapy may be beneficial for patients experiencing symptoms of a potential pelvic floor dysfunction, including persistent pain and urinary and/or fecal leakage. Clinicians may refer patients to a urologist or urogynecologist for further evaluation and treatment of urinary incontinence or to a colorectal surgeon for fecal incontinence. [22]

Recommendations for men

In addition to psychosocial counseling to potentially improve sexual functioning and satisfaction, ASCO recommends the use of agents and devices to promote erectile function also be considered, recognizing that most of the benefit is specifically for erectile dysfunction. Men who have sex with men may require additional education on the changes in erection and alternative ways to maintain sexual intimacy. [22]

Phosphodiesterase type 5 (PDE5) inhibitors can be used to help men with erectile dysfunction. [12, 22] Men should be aware that it might take a long time for medications to work and that PDE5 inhibitors might not work for all men, especially in those with preexisting comorbidities.Clinicians should discuss with patients the appropriate duration of use and alternative options (eg, surgery) if the medications fail to work satisfactorily.

Men who do not respond to PDE5 inhibitors should consider alternatives such as a vacuum erectile device (VED), medicated urethral system for erection, or intracavernosal injection. Surgical interventions, including penile prosthesis implantation for erectile dysfunction, can be offered to patients who do not respond to conventional medical therapy or who have adverse effects from it. [22]

Daily use of a VED is recommended to prevent penis length loss. Earlier initiation of VED use may be beneficial, as may early initiation of PDE5 inhibitors. [22]

Body image, including such issues as weight changes, disfigurement, scarring, and hair loss, should be discussed and normalized in men.

Clinicians should check testosterone levels, even if the patient has a cancer that is not typically associated with hormone changes. Options should be discussed when testosterone levels are within normal range but the patient or clinician feels that supplementation can have a clinical benefit and is not contraindicated. [22]

NCCN guidelines recommend testosterone therapy for men with total morning testosterone < 300 ng/dL. Lifestyle modifications, including increased physical activity, smoking cessation, and reduction in alcohol consumption, are also recommended. [12]

For treatment of problems with ejaculation, NCCN guidelines recommend the following:

  • Psychological evaluation
  • SSRIs
  • Clomipramine
  • Pelvic physical therapy

Men with vasomotor symptoms should be offered medication for symptomatic improvements, according to ASCO. Options would include venlafaxine, medroxyprogesterone acetate, cyproterone acetate, and gabapentin. Acupuncture may be a suitable alternative, as may be other integrative medicine options, such as slow-breathing techniques and hypnosis, as evidence demonstrates clinical benefit in women, and extrapolation to men appears reasonable. Psychosocial counseling (cognitive-behavioral therapy) may provide a benefit and reduce vasomotor symptoms and should be offered. [22]


Disease-Specific Guidelines

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


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. [23]



Questions & Answers


What is cancer survivorship?

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