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GUIDELINES su at
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Survivorship Care
for Cancer-Related
Late and Long-Term
Effects
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Contents
6 Survivorship
17 Cardiovascular disease
24 Lymphedema
30 Cognitive dysfunction
34 Sexual dysfunction
41 Fatigue
46 Sleep
52 Pain
63 Resources
69 Words to know
71 NCCN Contributors
74 Index
that lowers hormone levels to reduce the Excess radiation from a lifetime of
chance of getting cancer. computed tomography (CT) scans slightly
increases cancer risk. Ask your provider if
Besides cancer, other unwanted effects of these scans are needed and for how long.
treatment and cancer can occur after treatment.
A goal of survivorship care is to lower your Some survivors are at risk of hereditary
chance of having these late effects. If detected cancers. Hereditary cancer is caused by
early, treatment for a late effect may reduce its abnormal genes that are passed down from
impact on your life. parents to children. Cancers that can be
hereditary include breast, ovarian, colorectal,
and prostate cancer.
Cancer surveillance
Cancer that was thought to be cured can
At health visits, update your health care
reappear on tests. The return of cancer is
providers on any new cancers among your
called a recurrence or relapse. Survivorship
blood relatives. Your provider may suggest
care includes routine checking for a recurrence.
getting genetic testing. A blood sample is
This is called surveillance. Surveillance often
needed. You may talk with a genetic counselor
includes updating your health history and a
to discuss your family’s cancer history.
physical exam. Some survivors get blood tests
or imaging like x-rays or scans.
Late effects
Many effects of treatment quickly resolve
Screening for cancer
after treatment ends. An example is nausea
Cancer screening is routine testing of cancer
and vomiting. Long-term effects start during
or pre-cancer conditions. The aim is to detect
treatment and persist after treatment is done.
cancer at an early stage when treatment works
Less often, effects start long after treatment
best. There is screening for prostate, breast,
has ended. During health visits, your health
cervical, skin, lung, and colorectal cancers.
care providers will assess for such late effects.
Screening is started when there is an average
They will provide treatment for late or long-term
or high risk of cancer. Ask your health care
effects as needed.
provider what screening, if any, you need.
“
Prevention of new and recurrent cancers is
part of survivorship care. One way to lower
your chance of cancer is through healthy
living.
Survivorship care includes routine testing,
called surveillance, for a recurrence. I decided that I am a survivor; I
Survivors are at higher risk for a second have to call myself one. Once I did,
cancer. Follow cancer screening it changed my mental focus.
recommendations. If needed, genetic
testing can confirm if you are at risk for
hereditary cancer. – Mike
Your health care providers will assess for Cancer survivor
late effects of cancer and its treatment.
They will prescribe care to relieve or treat
late effects.
Your team of care providers will work
together to meet your needs. They will
clarify their roles in your care. Over time,
your primary care provider will resume
charge of your health care.
Planning of survivorship care is ongoing.
Survivorship plans often include follow-up
visits, possible late effects, and referrals to
specialists.
There have been challenges to putting
survivorship care into practice. To address
these challenges, NCCN produces
practice guidelines on survivorship for
health care providers.
Some cancer treatments cause levels of Causes of low sex hormones among cancer
sex hormones to drop. Hot flashes are survivors include aging and cancer treatment.
one of many symptoms that may occur Certain cancer treatments reduce hormone
as a result. Read this chapter to learn levels or block hormone effects.
about hormone-related symptoms and
treatment for hot flashes. Hormone therapy for prostate cancer
targets male sex hormones. The most
common form is called androgen
deprivation therapy (ADT).
Sex hormones Orchiectomy is a surgery that removes
one or both testicles. It is a type of ADT
Sex hormones play a key role in puberty, and also treats testicular cancer.
having babies, and overall health. Testosterone
Chemotherapy, pelvic radiation, and
is the main male sex hormone and is made
surgery may damage testes and ovaries.
by the testicles (or testes). Estrogen and
When damaged, these organs may not
progesterone are the main female sex
make hormones.
hormones. The ovaries produce the most
estrogen and progesterone. Endocrine therapy for breast cancer
targets female sex hormones. It is also
The level of sex hormones declines as people called hormone therapy.
age. The pattern of decline differs between the
Oophorectomy is a surgery that removes
sexes. Testosterone made by the testes slowly
ovaries. It is a type of endocrine therapy
drops over many years. During a menstrual
and also treats ovarian cancer.
cycle, estrogen and progesterone levels rise
and fall. They quickly drop when a person stops
A drop in sex hormones may cause unwanted
having menstrual cycles.
symptoms. Low female sex hormones caused
by aging or cancer treatment often causes
The end of menstrual cycles is called
menopausal symptoms. Sudden drops of male
menopause. Menopause caused by aging is
sex hormones caused by cancer treatment
called natural menopause. Health providers
often causes symptoms. Symptoms as well as
identify natural menopause by an absence
signs and health risks of low sex hormones are
of menstrual periods for 12 months. There
listed in Guide 2.
is a transition time to menopause called
perimenopause. During perimenopause,
menstrual periods may start sooner or later
than normal.
Guide 2
Symptoms, signs, and health risks of low levels of sex hormones
Joint pain and muscle aches Joint pain and muscle aches
Fatigue Fatigue
Blood clots
Anemia
Diabetes
Hair loss
There is treatment for many hormone-related For prostate cancer survivors taking ADT, a
symptoms. change in the prescription may help. You may
be able to take breaks from ADT to relieve side
Read chapter 3 for treatment of heart effects like hot flashes. This treatment approach
disease. is called intermittent ADT.
Read chapter 5 for treatment of cognitive
Hormones may be used to treat hot flashes
problems.
but are not safe for some cancer survivors.
Read chapter 6 for treatment of sexual Estrogen by itself may be used to treat
dysfunction, vaginal dryness, and survivors whose uterus has been removed. It is
urogenital complaints. given with progestin when the uterus is intact.
Read chapter 7 for treatment of fatigue.
Medroxyprogesterone, estrogen, and
Read chapter 8 for treatment of sleep cyproterone acetate relieve hot flashes caused
problems. by ADT. Androgens are used to treat hot flashes
caused by treatment-damaged testicles but
Read chapter 9 for treatment of joint and
should not be taken by prostate and breast
muscle pain.
cancer survivors.
Read chapter 10 for treatment of
depression and anxiety. There are medications without hormones that
reduce hot flashes. Antidepressants treat hot
This chapter focuses on treatment of hot
flashes at lower doses and faster than they
flashes.
treat depression. Anticonvulsants also treat hot
flashes at lower doses than they treat seizures.
Anticonvulsants can cause sleepiness, so they
may be most helpful for night sweats. Clonidine
is a blood pressure medicine that also treats
hot flashes.
Hot flashes may be reduced by methods other Compounds that don’t work or aren’t safe
than drugs. Acupuncture, yoga, and hypnosis include phytoestrogens, botanicals, dietary
may help. Healthy living improves overall health supplements, and black cohosh.
and may help with hot flashes. Avoid drinking
alcohol if it is a trigger of hot flashes. Cognitive
behavioral therapy (CBT) may help reduce the
impact of hot flashes.
Guide 3
Treatments for hot flashes
Options for females: Options for males:
Hormones • Estrogen with progestins • Medroxyprogesterone
• Estrogen • Cyproterone acetate
• Estrogen with bazedoxifene • Estrogen
• Venlafaxine (preferred)
• Desvenlafaxine
• Escitalopram
Antidepressants • Citalopram
• Sertraline
• Paroxetine
• Fluoxetine
Alpha-agonist
hypertensives • Clonidine
Review
Gynecomastia
Sex hormones play a key role in puberty,
having babies, and overall health.
Gynecomastia is an enlargement of male breast A drop in sex hormones may cause
tissue. Male breasts enlarge as a result of aging. unwanted symptoms.
Certain health conditions and medications can
Cancer survivors may be screened
also increase breast size. Cancer treatments
for symptoms related to a decrease in
that reduce male sex hormones may enlarge sex hormones. If the symptoms cause
breasts. problems, an assessment is needed. You
may get blood tests of hormones.
There are 3 treatments for gynecomastia.
One option is radiation to the breasts before There are treatments for many hormone-
related symptoms.
they enlarge. Another option is a medication
called tamoxifen. Tamoxifen stops the action Hot flashes are a sudden feeling of warmth
of estrogen in breast tissue. The third option is in the upper body. The intensity of hot
surgery that removes breast tissue. This surgery flashes can range from mild to severe.
is called reduction mammoplasty. If on ADT nonstop, taking breaks may
provide relief from hot flashes.
“
Treatment for hot flashes includes
hormones, antidepressants, and
anticonvulsants. Acupuncture, healthy
living, and cognitive behavioral therapy
may also help treat hot flashes.
– Margaux
Cancer survivor
Cancer survivors are at risk for heart The onset of cardiovascular disease varies
disease. Read this chapter to learn how among cancer survivors. Except for radiation,
you and your health care providers can cardiovascular disease that is related to
lower your risk. cancer treatment starts during or shortly after
therapy. Radiation-related cardiovascular
disease may occur years after treatment ends.
Cardiovascular disease that is not related to
Cancer and heart health cancer treatment most often develops 5 or
more years after diagnosis. There is time to
prevent or control cardiovascular disease with
Cardiovascular disease is a group of disorders
healthy living and treatment.
of the heart and blood vessels. It is often
simply called heart disease. Some types of
“
cardiovascular disease are listed in Guide 4.
Guide 4
Types of cardiovascular disease
arrhythmia
An abnormal rate or pattern of the heartbeat.
atherosclerosis
A fatty buildup in the inner walls of arteries that may restrict blood flow.
cardiomyopathy
Diseased heart muscle.
cerebrovascular disease
Disorders of blood vessels in the brain.
heart failure
An inability of the heart to pump enough blood. Also called congestive heart failure.
ventricular fibrillation
An abnormal beating of the bottom chambers of the heart.
Preventing heart disease Work with your health care providers to learn
about and lower your risk of cardiovascular
A risk factor is anything that increases your disease. Your cancer and primary care
chance for cardiovascular disease. Your risk providers will work together to coordinate your
of cardiovascular disease increases as the care. You may see other specialists as needed.
number of risk factors increase. Some risk Steps to prevent heart disease among cancer
factors can’t be changed, such as your age. survivors are listed in Guide 5.
Other risk factors can be managed, such as:
ABCDEs of cardiovascular wellness
High blood pressure (hypertension)
One of the first steps of cardiovascular wellness
High cholesterol is awareness. Learn about the risk factors of
cardiovascular disease. Also, learn about its
High blood sugar (diabetes)
signs and symptoms. Signs and symptoms
Tobacco use differ between the types of heart disease. They
also differ between sexes. See Chapter 11
Obesity
Guide 5
The ABCDEs of cardiovascular wellness in cancer survivors
• Cholesterol management
C • Cigarette and tobacco cessation (quit smoking)
• Exercise
E • Echocardiogram, electrocardiogram, or both—as needed
for informational resources on cardiovascular the primary care provider who monitors. Your
disease. weight, blood pressure, and cholesterol will
be measured on a regular basis. You will be
Your health care providers will assess if you screened for diabetes. Be prepared to discuss
have or are at risk for heart disease. Testing of your exercise, eating, and tobacco habits.
your heart with an echocardiogram (ECHO),
electrocardiogram (ECG), or both may be Your health care providers will help you reduce
needed. An echocardiogram detects structural your risk of cardiovascular disease. Medication
changes in the heart. An electrocardiogram can help control diabetes, high blood pressure,
detects abnormal heartbeats. and cholesterol. Exercise, healthful eating, and
not using tobacco can also reduce your risk.
Ask your cancer doctor if your treatment may Read about preventing poor health in NCCN
damage your heart. Radiation near the heart Guidelines for Patients: Survivorship Care
may be harmful. Certain chemotherapy drugs, for Healthy Living, available at NCCN.org/
like anthracyclines, may also cause heart patientguidelines.
damage. Heart damage from radiation therapy
or chemotherapy is related to dose. Doses Taking aspirin once a day may decrease the
have been standardized to treat cancer and risk of heart attack and stroke. Its benefits
limit heart damage. vary between people. It may cause unwanted
effects. Ask your provider if you should take
One or more of your health care providers will aspirin to lower your chance of cardiovascular
monitor for cardiovascular disease. Often, it is disease.
Echocardiogram
An echocardiogram makes
pictures of the heart. A
technician will move an
ultrasound device on
your chest and record the
pictures. Your health care
provider will discuss the
results with you.
Guide 6
Stages of heart failure
Tests show structural heart disease but A cardiologist will provide treatment. As
Stage B you do not have signs or symptoms of needed, your cancer and primary care
heart failure. providers will address risk factors.
The 4 stages are partly based on heart defects about your risk factors of cardiovascular
called structural heart disease. Structural disease. Your care providers will monitor
defects may be detected before you have and help manage risk factors that can be
symptoms. Defects in the heart’s main pumping changed.
chamber (left ventricle) or to heart valves may
Anthracyclines are a type of
occur, such as:
chemotherapy. They increase the risk of
heart failure.
Enlargement of the left ventricle
Screening for heart failure within 1 year
Thinning of left ventricle wall
after anthracycline treatment is needed.
Weakened contractions of the left ventricle You may get an echocardiogram. An
echocardiogram detects structural
Heart valve disease
changes in the heart.
To prevent severe heart failure, follow the After anthracycline treatment, it
ABCDEs of cardiovascular wellness. Your is important to lower your risk of
cancer and primary care providers will manage cardiovascular disease including heart
risk factors. An expert in heart disease, called failure. You may take medication, live more
a cardiologist, treats stage B, C, and D heart healthfully, or see a cardiologist.
failure. This doctor may prescribe medication
and other treatment to keep your heart as
“
healthy as possible.
Review
Cardiovascular disease is a group of Survivorship is HOPE.
disorders of the heart and blood vessels.
Cancer survivors are more likely to
– Nigel
develop cardiovascular disease than
people who never have had cancer. Cancer survivor
A risk factor is anything that increases
your chance for cardiovascular disease.
Reducing risk factors can help prevent
cardiovascular disease and events. Risk
factors that can be managed include high
blood pressure, high cholesterol, and
obesity.
To reduce your risk, follow the ABCDEs
of cardiovascular wellness. To start, learn
Lymphedema is a buildup of fluid called vessels transport the fluid, now called lymph,
lymph. This chapter explains how to the bloodstream. As lymph travels, it passes
lymphedema can be reversed in early though lymph tissue that filters out germs and
stages. It also explains how to reduce cell waste. Lymph tissue includes the tonsils,
symptoms of lymphedema. spleen, and lymph nodes.
Guide 7
Symptoms of lymphedema by stage
No swelling but there may be subtle symptoms, such as
Stage 0 • A heavy feeling in a limb
• Feeling of fatigue in a limb
Lymphedema may get worse over time without Assessment and referral
treatment. Stage 0 lymphedema is the earliest
stage when there are subtle or no symptoms. If you are at risk for lymphedema, your cancer
Swelling starts in stage 1 and gets worse in doctor will ask about symptoms at health
stages 2 and 3. visits. Lymphedema can occur any time after
cancer treatment but most often occurs within
Lymphedema is common among cancer 18 months. If symptoms are present, your
survivors. It may occur after surgery or radiation doctor will ask questions about:
to lymph nodes near the armpit, collarbone,
or groin. It may also occur after procedures How often and severe is the swelling
called sentinel node biopsy and lymph node
Pain or discomfort
dissection.
“
Loss of strength, range of motion, or
mobility
Ability to do things you usually do
Compression garments
Review
Lymphedema is a buildup of a fluid called
lymph under the skin.
Stage 0 is the earliest stage of
lymphedema. Swelling starts in stage 1
and worsens in stages 2 and 3.
Causes of lymphedema include surgery
and radiation to lymph nodes.
Lymphedema can occur any time after
cancer treatment but most often occurs
within 18 months.
You may be referred to a lymphedema
therapist if you have lymphedema.
To plan treatment, you will be asked about
symptoms of lymphedema. You may have
your limbs measured and your range of
motion checked.
Self-management of lymphedema starts
with learning about lymphedema. Promptly
tell your care provider if you notice
symptoms of lymphedema or infection.
Do strength training if your lymphedema
specialist says it’s safe.
Wearing compression garments, having
lymph drainage massages, and physical
therapy may help relieve symptoms.
“
assess for cancer in the brain.
chemotherapy, it is often called “chemobrain.”
The causes of chemobrain are not well
understood. Other cancer treatments that may
cause cognitive dysfunction include endocrine
therapy, radiation therapy, and surgery.
Cognitive dysfunction differs between cancer Anxiety and depression were real
survivors. The type of problem varies. Problems
can be long-term or short lived. Most survivors during my cancer treatments.
do not have severe problems but some do.
When severe, cognitive dysfunction can impact
– Judith
quality of life and ability to work.
Cancer survivor
Sexual dysfunctions are ongoing problems with Male and female symptoms
desire or the ability to respond with arousal, Low desire for sexual activity
orgasm, or satisfaction. Sexual dysfunction
often causes distress and discontent with Trouble getting or staying aroused
sexual activity. Some symptoms of sexual
dysfunction are listed in Guide 10. Trouble having an orgasm
Many cancer survivors do not feel well during Gynecologists are doctors who are
and after cancer care. High levels of distress, experts in the female reproductive system.
pain, sleepiness, or fatigue reduce sexual Urologists are doctors who are experts in
desire and arousal. After a cancer diagnosis, the urinary tract and the male reproductive
mental health and relationships may decline system.
and impact sexual functioning. You may want
Fertility specialists help people have
to avoid sexual activity because you do not like
babies. Your cancer doctor will refer you to
your body.
a fertility specialist if you want to have kids
after treatment.
“
Your health care providers will ask about your
sexual functioning. Don’t be shy to share any
concerns or problems. If you are younger,
your provider will also talk to you about having
children and birth control.
Anxiety? You are not alone,
Your health care provider may ask you to especially for the newly diagnosed.
complete a short survey. Surveys help pinpoint It will get better! You will be able to
the type and severity of sexual dysfunction.
To plan treatment, your provider will identify think clearer and develop questions
the causes of sexual dysfunction. Be ready that you want more info on.
to give an update on your health history and
medications. You will likely get blood tests of
testosterone if your testes were affected by – Steve
cancer treatment. Cancer survivor
Based on an assessment, you may be referred
to other providers.
Guide 11
Treatment for female sexual dysfunction
• Androgens
• Bremelanotide
Low sex drive • Flibanserin
• Bupropion
• Buspirone
• Vaginal estrogen
• Vaginal testosterone or DHEA
Vaginal dryness
• Lubricants for sex
• Vaginal moisturizers, gels, and oils
• Vibrator
Problems with orgasm
• Pelvic physical therapy
If your sex drive is low, talk with your provider Urogenital complaints are a common
about medications. Androgens, flibanserin, menopausal symptom. They may affect sexual
and bremelanotide may help but need to be function.
studied among cancer survivors. Androgens
Treatment options include estrogen or
may increase the risk of hormone-dependent
testosterone applied to the vagina. Be aware
cancers. Bupropion and buspirone may be
used for a low sex drive although they are not that vaginal hormones may not be safe for
approved for this use. survivors of estrogen-dependent cancers.
You may also be referred to a specialist for
management.
Guide 12
Treatment for male sexual dysfunction
Low sex drive • Testosterone if levels are low
• PDE5 inhibitors
Erectile dysfunction • Testosterone if levels are low
• Healthy living including physical activity and not smoking
• Pelvic physical therapy
bedwetting and may help stop urine leaks safe for survivors of hormone-dependent
during sexual activity. cancers.
Treatment for male sexual dysfunction
Pelvic physical therapy and vibrators may
often focuses on physical and mental
improve orgasms. The goal of physical therapy
causes. Testosterone may help sexual
is to strengthen weak pelvic floor muscles.
dysfunction caused by damaged testes.
Vibrators stimulate the body and may help you
PDE5 inhibitors improve erections and
achieve orgasm.
orgasms. Certain antidepressants may
help with premature ejaculation and urine
Healthy living can improve sexual function in
leaks. Other treatments include vibrators,
men. It may be particularly helpful for erectile
physical therapy, and healthy living.
dysfunction. Quit smoking. Lose weight if
overweight. Move more and exercise. Don’t
drink a lot of alcohol. Good heart health is also
good sexual health.
Review
Sexual dysfunction is an ongoing
problem with feelings of desire or your
body’s response of arousal, orgasm, and
satisfaction.
Cancer or its treatment may cause sexual
dysfunction among cancer survivors.
Surveys help pinpoint the type and
severity of sexual dysfunction.
You may be referred to one or more
specialists who help people with sexual
dysfunction. These specialists include
sexual health specialists, mental health
professionals, gynecologists, urologists,
and fertility specialists.
More research is needed for treatment
of female sexual dysfunction. Treatment
options vary by type of sexual dysfunction.
They include over-the counter and
prescriptive drugs, devices, and physical
therapy. Some treatments may not be
“
Guide 13
Conditions that add to cancer-related
fatigue
Cancer can temporarily rob you
Alcohol or drug abuse
of your energy, but it can’t steal
Heart problems
your burning desire to get it all
Low hormone levels back.
Digestive problems
Lung problems
Kidney problems
Anemia
Arthritis
Sleep aids
Pain medications
Distress
Sleep problems
Pain
Physical inactivity
Strategies that work CBT for insomnia improves sleep and may
also improve fatigue. Read chapter 8 for more
For moderate or severe fatigue, your health information. Acupuncture and healthful eating
care provider will tailor a management plan may also reduce fatigue.
for you. It will be based on your experience of
fatigue and the causes. Strategies to reduce Psychostimulants may reduce fatigue in some
fatigue are listed in Guide 14. survivors. More research is needed. The best
dose and schedule of medications are still
The first step is to treat anything that causes or unknown. Medications for fatigue should be
worsens fatigue. Such factors may include pain, used with caution.
poor sleep, distress, anemia, and diseases.
You may need to have your medications
adjusted.
Physical activity
Physical activity reduces fatigue and
improves energy. It also improves strength, Cognitive behavioral therapy (CBT)
fitness, mood, and body image. A physical
therapist or exercise specialist may help Mindfulness-based stress reduction
you meet your goals. Read about physical
Supportive expressive therapies
activity in NCCN Guidelines for Patients:
Survivorship Care for Healthy Living, Psychoeducational therapy
available at NCCN.org/patientguidelines..
Nutrition counseling
Psychosocial interventions reduce fatigue.
CBT for insomnia
Cognitive behavioral therapy (CBT) helps
people change unhelpful thinking and Acupuncture
behaviors. Reducing stress may in turn
reduce fatigue. Supportive expressive Psychostimulants
therapies help people find support and
express emotions. Such therapies include
support groups, counseling, and journal
writing.
Review
Cancer-related fatigue is a distressing,
ongoing tiredness that limits one’s ability to
do day-to-day tasks.
Many cancer survivors have fatigue as a
result of cancer or its treatment.
Fatigue screening helps identify people
with fatigue and assess treatment results.
Your health care provider will identify and
treat the causes of your fatigue.
Learn about patterns of fatigue among
cancer survivors. Monitor your fatigue and
learn ways to conserve your energy.
Physical activity, psychosocial treatments,
and CBT reduce fatigue. Acupuncture,
acupressure, and psychostimulants may
improve fatigue, but more research is
needed.
Sleep is essential for living. Problems problems with sleep or daytime sleepiness. The
with sleep can greatly impact life. This symptoms are distressing or cause a loss of
chapter explains the treatments for sleep ability. Some causes of sleep-wake disorders
problems. are health conditions, medications, and poor
sleep habits. Common types of sleep-wake
disorders are listed in Guide 15.
Guide 15
Common types of sleep-wake disorders
circadian rhythm sleep disorder
A mismatch between sleep-wake cycles and day-night cycles.
hypersomnia
Excessive sleepiness during the day despite getting enough sleep.
insomnia
An inability to fall asleep, stay asleep, or get restful sleep.
insufficient sleep syndrome
A chronic lack of sleep due to unhealthy sleep habits.
narcolepsy
An impaired ability of the brain to control states of sleep and wakefulness.
restless legs syndrome
An intense urge to move the legs that worsens during rest and is partly relieved by movement. Also
called Willis-Ekbom disease.
sleep apnea
Pauses in breathing during sleep due to blocked airflow. Also called obstructive sleep apnea.
Screening and assessment daytime naps. Your provider will ask about any
strategies you use to fall or stay asleep.
Your health care provider may screen for sleep
problems on a regular basis. A brief survey is A sleep study is sometimes needed to measure
used. An assessment is needed if you may sleep. It is also called polysomnography. It
have a sleep-wake disorder. detects sleep-wake disorders like sleep apnea,
narcolepsy, and restless legs syndrome. A full
An assessment includes a health history and sleep study is often done at a sleep center.
an exam of your body. You may also complete Some studies for sleep apnea can be done at
brief surveys about distress, hot flashes, pain, home with a portable device.
and fatigue. Your provider will order blood
tests if you may have low red blood cell counts
(anemia) or hormone levels (hypothyroidism).
You may see a sleep expert for further Treatment that works
evaluation.
Treatment of sleep-wake disorders often has
It is common to complete a sleep diary or wear very good results. Your cancer doctor will treat
a tracking device. These tools are helpful for health conditions that are related to sleep-
assessing sleep patterns. In the diary, you will wake disorders. Such conditions include pain,
record your bedtime, time you fell asleep, and obesity, anemia, heart disease, and hormone
the time you got up for the day. Your diary will problems. Your medications will be adjusted if
also need to include if you woke up during the they affect your sleep. Specific treatments for
night and for how long. Diaries also capture sleep problems are listed in Guide 16.
Polysomnography
A polysomnography is a sleep
study. Sensors will be placed
on your body to detect brain
waves, heart rate, blood oxygen,
breathing, and movement. While
you sleep, a technician will
monitor and record your data. At
the end of the study, the sleep
center doctor will write a report
about your results.
Guide 16
Treatments for sleep problems
• Stick to a regular bedtime and waketime
• Be physically active in the morning, afternoon, or both
• Seek out bright light during the day
• Avoid bright light at night and turn off devices near bedtime
• Don’t eat heavy meals and limit fluids 3 hours before bedtime
Sleep hygiene • Limit caffeine intake during the day and don’t consume caffeine at
least 4 hours before bedtime
• Don’t drink alcohol or consume nicotine before bedtime
• Sleep in a dark, quiet, and comfortable place
• Schedule a time to think about worries well before bedtime
• Don’t look at the clock during the night
• If needed, take 1 nap a day for less than 30 minutes
• Zolpidem
• Zaleplon
• Eszopiclone
Medication for insomnia • Ramelteon
• Temazepam
• Doxepin
• Suvorexant
Your cancer doctor may refer you to another Cognitive behavioral therapy (CBT) is the
provider. You may see a sleep expert or your preferred treatment for insomnia. CBT for
primary care provider for treatment. A sleep insomnia (CBT-I) is a structured program that
expert is especially helpful for these sleep has very good results. Its methods include
issues if they last at least 3 months: stimulus control, sleep restriction, cognitive
therapy, relaxation, and sleep hygiene.
Too much time awake in the middle of
sleep Medications called hypnotics are used to treat
insomnia. They are also called sleep aids
Too much time awake overall
and sleeping pills. They should be used with
Too much sleep (9 or more hours) caution. Hypnotics may make you do activities
while sleeping, such as sleep-driving and sleep-
Narcolepsy
eating. There is a risk of abusing hypnotics.
Circadian rhythm sleep disorder Some hypnotics may cause drug dependence
and withdrawal.
Hypersomnia
Parasomnias, which are abnormal Medications called sedatives are used “off-
behaviors during sleep label” to treat insomnia. They aren’t approved
by the U.S. Food and Drug Administration
Sleep hygiene is a set of healthy sleep habits. (FDA) for this use. Sedatives include
These habits will help you fall and stay asleep. antidepressants, antihistamines, atypical anti-
They include physical activity, daytime light psychotics, and melatonin. NCCN experts do
exposure, and regular sleep patterns. Sleep not recommend sedatives for routine use due
hygiene should not be used alone to treat to a lack of data.
sleep problems. It should be used with other
treatments. Sleep hygiene can help treat many Gabapentin enacarbil and dopamine agonists
types of sleep-wake disorders. are FDA approved and are preferred initial
treatments for restless legs syndrome (RLS).
Losing weight may help people with obstructive Other medications for RLS are opioids and
sleep apnea. It can improve breathing clonazepam. Take iron supplements if you have
during sleep and reduce daytime sleepiness. low iron. Iron can improve symptoms.
Breathing is also improved with a CPAP
machine. CPAP is short for continuous positive
airway pressure. For mild obstructive sleep
apnea, mouthpieces (oral appliances) may
help.
“
Review
Sleep-wake disorders are ongoing
problems with sleep and excessive
daytime sleepiness. You don’t have time to dwell
on things when you’re in it. It
Many cancer survivors have poor sleep
quality. Some have a sleep-wake disorder. changed me and it was borne out of
Cancer, treatment, and related stress may survival.
cause or worsen sleep quality.
You may be asked to complete a short – Yvonne
survey as part of an evaluation of sleep-
Cancer survivor
wake disorders.
To diagnose a sleep-wake disorder, you
may complete a sleep diary or do a sleep
study.
Treatment of sleep-wake disorders often
has very good results.
You may be referred to a sleep expert for
treatment.
Sleep hygiene is a set of healthy sleep
habits that help treat many sleep
problems.
Weight loss, CPAP machines, and
mouthpieces may help reduce obstructive
sleep apnea.
CBT-I is a structured program for insomnia
that has very good results. Insomnia may
be treated with medications but there are
risks.
Gabapentin enacarbil and dopamine
agonists are medicines for restless legs
syndrome (RLS). Iron supplements may
also help improve symptoms if your iron is
low.
Read this chapter to learn about pain disease. It is managed to reduce problems,
among cancer survivors. There are such as:
many treatment options.
Distress, depression, anxiety
Inactivity, disability
Cancer pain syndromes Poor quality of life
Pain is the body’s alarm system that something Many cancer survivors have pain. The type
is wrong. It alerts people to act and teaches and severity of pain differs among them.
people what to avoid. Pain usually stops when More than 1 in 3 survivors have chronic pain
its cause ends or the body heals. after treatment. For many, pain management
is needed. Causes of pain among survivors
Pain is either acute or chronic. Acute pain starts include the cancer and treatment. Pain
suddenly and can often be treated. Chronic syndromes among cancer survivors are listed
pain lasts a long time and is often caused by in Guide 17.
Guide 17
Cancer pain syndromes
neuropathic pain
Pain caused by damage to the nerves. It is often described as a shooting or burning pain.
Sometimes, it is described as numbness and it can cause muscle weakness.
arthralgias, myalgias
Arthralgias are joint pain and can be caused by aromatase inhibitors for breast cancer. Myalgias are
muscle pain.
skeletal pain
Pain that occurs from bone damage. It includes pain caused by spinal bone collapse (vertebral
compression), dead bone (osteonecrosis), and cancer in the bone.
myofascial pain
A type of ongoing muscle pain that is often set off by pressure on trigger points.
post-radiation pain
Pain in an area treated with radiation. It may start soon or years after radiation therapy ends.
“
Create a treatment contract
Prescribe the lowest dose for the shortest
period of time
Monitor results and reassess need for
opioids
Never give up, fight a good fight,
Slowly reduce the amount of opioids to
keep the faith, and believe you will avoid withdrawal
conquer this. You are not alone.
Learn how to safely use opioids. Strategies to
prevent misuse of opioids include medication
– Judith diaries, pill counts, psychological interventions,
Cancer survivor and urine drug testing. Also, learn how to safely
discard unused opioids. Opioids should not be
taken by people who don’t have a prescription. gabapentin and pregabalin. More research
You should never use someone else’s on anticonvulsants for pain among cancer
prescription. survivors is needed.
Guide 18
Pain medications for cancer pain syndromes
• Opioids • Antiresorptives,
• Adjuvant analgesic bisphosphonates
Bone (skeletal) pain
• NSAIDs, COX-2 inhibitors • Muscle relaxers
• Acetaminophen
Guide 19
Non-pharmaceutical management of cancer pain syndromes
• CBT • Acupuncture
Neuropathic pain • Psychosocial support • Cold, heat
• Hypnosis • TENS unit
• Acupressure • Massage
Myofascial pain • Acupuncture • Ultrasonic stimulation
• Physical activity
Initial steps of care SSRIs and SNRIs are two common types of
antidepressants.
Your provider will use the mental health
screening and follow-up questions to guide It may take 2 to 6 weeks for antidepressants
care. Cancer and primary providers will treat to work. Your provider may prescribe a
some mental health issues and ensure your benzodiazepine until an antidepressant starts
safety. For needs beyond their care, they will working. Benzodiazepines treat anxiety.
refer you to a specialist. Initial steps of mental
health care are listed in Guide 20. Medication can cause unwanted effects. Tell
your provider about any new or worsening
symptoms. Abruptly stopping antidepressants
Education
or other medications may cause withdrawal.
Your care team can provide education on
When a medication is no longer needed, your
cancer and cancer survivorship. It’s important
provider will slowly reduce the dose.
to know that feeling distressed is normal. Every
cancer survivor is distressed at some point.
Learning about cancer can help prevent high
levels of uncertainty and stress. If you become Guide 20
anxious or depressed, these conditions can be Initial steps of mental health care by
treated. cancer or primary care providers
Educate on cancer and its treatment to
Medical conditions prevent confusion and distress
Medical conditions can cause or add to mental
health issues. Such conditions include pain, Educate on distress and mental health
among cancer survivors
hormone changes, and heart disease. Your
care provider will identify and treat medical Treat medical conditions that add to mental
conditions. health issues
“
Your cancer or primary care provider may
refer you to a specialist. Specialists include
chaplains, social workers, psychologists,
psychiatrists, and advanced practice clinicians.
Chaplains can help you with religious or
spiritual concerns. Social workers can help
with practical and psychosocial issues. Mental
health providers can diagnose and provide I have mixed emotions on a regular
treatment for mental disorders. basis. On one hand, I’m so happy
and grateful because I found a
treatment that is working, but on
Review the other hand I have to live with
Distress is normal during cancer care. the fear and anxiety for the rest of
Many survivors have a normal fear of a my life. It’s always in the back of
cancer recurrence. my mind.
Distress can lead to or worsen mental
disorders. Anxiety and depressive
disorders are common among cancer – Danika
survivors. Cancer survivor
“
tracking form
cancer.net/survivorship/follow-care-after-
cancer-treatment/asco-cancer-treatment-and-
survivorship-care-plans
Be the Match®
bethematch.org/survivorship
In time you breathe a little easier,
Cancer Hope Network you have less scans, then less
cancerhopenetwork.org/get-support appointments and transition to
Cancer Survivors Network survivorship. I became a survivor
csn.cancer.org when I could buy long term car
OncoLink
Immunotherapy effects oncolink.org/support/sexuality-fertility/sexuality
NCCN Guidelines for Patients:
The Oncofertility Consortium
Immunotherapy Side Effects: CAR T-Cell
oncofertility.northwestern.edu/for-patients
Therapy
NCCN.org/patients/guidelines/cancers.
aspx#immunotherapySECarTCell
Weight management
American Society of Clinical Oncology
Help lines
cancer.net/sites/cancer.net/files/weight_after_
American Cancer Society
cancer_diagnosis.pdf
1.800.227.2345
CA: A Cancer Journal for Clinicians
American Lung Association
Patient Page
1.800.LUNGUSA
acsjournals.onlinelibrary.wiley.com/doi/
pdf/10.3322/caac.21146
American Psychosocial Oncology Society
1.866.276.7443
Centers for Disease Control and
Prevention, Adult BMI Calculator
Be the Match®
cdc.gov/healthyweight/assessing/bmi/adult_
1.888.999.6743
bmi/english_bmi_calculator/bmi_calculator.html
Cancer Support Community
National Heart, Lung, and Blood Institute
1.888.793.9355
nhlbi.nih.gov/health/educational/lose_wt
Leukemia & Lymphoma Society (LLS)
National Institute of Diabetes and
1.800.955.4572
Digestive Kidney Diseases Body Weight
Planner
Livestrong
niddk.nih.gov/bwp
1.855.220.7777
NCCN Contributors
This patient guide is based on the NCCN Clinical Practice Guidelines in Oncology (NCCN
Guidelines®) for Survivorship Version 2.2020. It was adapted, reviewed, and published with help
from the following people:
Dorothy A. Shead, MS Erin Vidic, MA Tanya Fischer, MEd, MSLIS Kim Williams
Director, Patient Information Medical Writer Medical Writer Creative Services Manager
Operations
Rachael Clarke Stephanie Rovito, MPH, Susan Kidney
Laura J. Hanisch, PsyD Senior Medical Copyeditor CHES® Graphic Design Specialist
Medical Writer/Patient Medical Writer
Information Specialist
Notes
Index
ABCDEs of cardiovascular wellness 20, 23 NCCN Cancer Centers 72
acupuncture 15, 44, 58 NCCN Contributors 71
androgen deprivation therapy (ADT) 12, 14, neuropsychological evaluation 32
35
opioid 54
anticonvulsant 14, 55
PDE5 inhibitor 39
antidepressant 14, 39, 55, 61
pelvic physical therapy 38, 40
blood stem cell transplant 42
physical activity 27, 50
blood test 42, 48
physical therapy 28, 33
cancer screening 8
polysomnography 48
chemobrain 31
radiation therapy 18, 21, 26, 31, 35, 42
chemotherapy 12, 18, 21–22, 31, 42
sedative 50
cognitive behavioral therapy (CBT) 33, 35,
stimulants 33, 44
44
surveillance 7–8
cognitive rehabilitation 32–33
survivorship care 7–9
compression garment 28
targeted therapy 18, 35
dilator 37–38
vaginal hormones 37
echocardiogram (ECHO) 21, 42
endocrine therapy 12, 31, 35
gynecomastia 16
heart failure 22–23
hormone therapy 12, 12, 18
hypnotic 50
immunotherapy 18, 35
late effects 8
manual lymphatic draining 28
menopause 12
mirror therapy 58
Survivorship Care
for Cancer-Related
Late and Long-Term
Effects
2020
NCCN Foundation gratefully acknowledges our advocacy supporter Good Days and the following corporate supporters: Incyte
Corporation and Seagen Inc. for helping to make available these NCCN Guidelines for Patients. These NCCN Patient Guidelines were
also supported by an educational grant by Daiichi Sankyo. NCCN independently adapts, updates, and hosts the NCCN Guidelines for
Patients. Our corporate supporters do not participate in the development of the NCCN Guidelines for Patients and are not responsible
for the content and recommendations contained therein
PAT-N-1297-0920