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Page 1: My Cancer Fatigue...Cancer-related fatigue is different than fatigue you had before cancer in that it lasts longer and does not go away with rest. You may experience physical fatigue

Part 1: Decision Aid

My Cancer FatigueACTION PLAN

MyCancerFatigue.ca

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It’s important to talk with your healthcare team about how you feel so they can help you

during and after your cancer treatment. If you have any questions about the

information provided in this pamphlet, please discuss it with a member of your healthcare

team, such as your oncologist, family physician, nurse, psychologist, spiritual health

practitioner, dietitian, or other.

Visit the website for more information and resources:

MyCancerFatigue.caThis pamphlet was developed and approved

by a panel of experts (healthcare professionals, professors, and researchers) from across Canada,

with suggestions and insights from cancer patients.

Panel of Experts:

Scott North, MD, FRCPC, MHPE Shabbir M.H. Alibhai, MD, MSc, FRCPC Kerry S. Courneya, PhD Janet de Groot, MD, FRCPC, MSc Kim Lavoie, PhD, FCPA, FABMR Vera C. Mazurak, PhD John W. Robinson, PhD, R.Psych Josée Savard, PhD Shane Sinclair, PhD Alan So, MD, FRCSC

This Decision Aid is intended for Canadian patients only. This Decision Aid cannot diagnose your condition and should not replace the advice of your healthcare professional. The

information provided in this Decision Aid is not, nor is it intended to be, medical advice or treatment. Always consult your healthcare professional for all health-related matters.

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In this pamphlet: Page1. Introduction 42. My Fatigue 63. My Options 7

• Physical Activity 10• Psychological Interventions 14• Sleep Strategies 18• Spiritual Practices 22• Nutrition 26

4. My Values 305. My Decision 31

The goal of this pamphlet is to provide you with information about cancer-related fatigue. You

can use this information to discuss strategies to manage your fatigue with your healthcare team

and help make decisions about your care.

A list of references is included at the end of this pamphlet.

My Cancer FatigueACTION PLAN

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1. INTrODuCTIONWhat is cancer-related fatigue?Fatigue is one of the most common and difficult symptoms that people with cancer can have, and can be described as:

Cancer-related fatigue is different than fatigue you had before cancer in that it lasts longer and does not go away with rest.

You may experience physical fatigue (feeling weak), emotional fatigue (low mood or motivation), or mental fatigue (poor memory and concentration).

The fatigue/tiredness may prevent you from taking part in your regular daily activities.

How common is cancer-related fatigue?

Most people with cancer or who have recovered from cancer will have fatigue at some point.

It can start at cancer diagnosis and can increase during cancer treatments, such as surgery, radiation, and chemotherapy.

Cancer-related fatigue can range from mild to severe and may gradually lessen over time. The duration varies from person to person. It may also fluctuate or come and go over time. For some people, it may last for months or years after cancer treatment ends.

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What causes cancer-related fatigue?

There are many reasons why you may get cancer-related fatigue. It may be caused by the cancer itself or it may be a side effect of your cancer treatment.

Your fatigue may have other causes, such as anemia, nausea, pain, depression, sleep problems, nutrition problems, or a lack of physical activity.

Usually there is a combination of reasons for cancer-related fatigue.

It is important to talk with a member of your healthcare team so they can evaluate and treat the causes of your fatigue to help you feel better.

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2. My FATIgue

Ask yourself the following questions to help you and your healthcare team learn more about your fatigue:

On a scale of 1 to 10, how bad is my fatigue?

When did my fatigue start?

What makes my fatigue worse?

What makes my fatigue better?

What worries me about my fatigue?

What parts of my life and daily activities are affected by my fatigue?

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3. My OPTIONS

What can I do to manage my fatigue?

The information in this pamphlet can help you think about different strategies to improve your fatigue and choose the ones that could fit into your life to help you feel better.

Evidence means there are positive or good results from medical research studies.

How welldoes it work?

Treatmentoption

Physical activityand exercise

Psychological well-being

Sleepstrategies

Spiritual practices

Nutrition-basedinterventions

Strongevidence

Strongevidence

Moderateevidence

Someevidence

Someevidence

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Notes

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lPart 1: Decision Aid

Physical activity and exercise

Psychological well-being

Sleep strategies

Spiritual practices

Nutrition-based interventions

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PHySICAl ACTIVITy & exerCISeHow can physical activity reduce my fatigue?Too much rest and a decrease in physical activity levels can make fatigue worse!

Research has show that physical activity and movement can help to improve fatigue.

Ways that physical activity can improve fatigue:

•Increasing muscle strength and endurance

•Improving cardiovascular fitness (the ability of the heart and lungs to supply oxygen to your muscles, and the way your muscles use this oxygen for energy and movement)

•Improving your body composition (less fat and more muscle)

•Improving your metabolic function (the way your body works to produce and use energy)

•Reducing inflammation

Physical activity can help improve fatigue by decreasing anxiety and depression, and improving your sleep and appetite.

Improvements will be more noticeable if you are not fit to begin with or not currently exercising.

If you are already exercising, stay as active as possible while you are in treatment and after cancer treatments ends.

Any type of physical activity at moderate levels of intensity (for example, walking, yoga) will help improve your fatigue. You will get best results if you can exercise at least 30 minutes per day, 5 days per week.

Some physical activity is better than none! Even a bit of movement can help. Every little bit counts!

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What are the benefits of physical activity?

Reduce your fatigue and increase your energy

Make daily activities feel easier and less tiring

Help you get things back to normal so that you can feel happier with yourself and your life

Help you feel in control by actively participating in your healthcare plan

Reduce depression and anxiety

Help to get your mind off cancer

Improve your outlook on life and feel better about yourself

May help prevent cancer in the future

Improve your physical fitness and functioning

Improve your muscle strength

Help maintain healthy bones and joints

Reduce arthritis aches and pains

Help improve your immune system

Help keep your memory sharp

Improve how well your heart works

Help control your blood pressure

Help manage your weight

Relieve stress

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exerCISe MyTHS

Myth #1: No pain, no gain!

False: You get many health benefits from moderate level exercises such as brisk walking (like you were late for an appointment); i.e., any exercise that makes you breathe a little harder without feeling very out of breath (exertion versus pain).

Myth #2: You have to exercise for at least 30 minutes at one time to get any health benefit.

False: Getting at least 30 minutes of exercise per day is best to get health benefits, but you can exercise for 10 minutes at 3 different times of the day and still get health benefits.

Myth #3: After age 60, there is no point in exercising.

False: Exercise is helpful for people of all ages! Exercise is actually MORE important the older you get to maintain your strength and function and to continue to do the activities you enjoy.

Myth #4: Exercise will actually cause the cancer to grow.

False: An increase in blood flow from exercise and normal physical movement do not cause cancer cells to spread in the body. In fact, an increase in blood flow may help deliver drugs to the cancer and destroy it.

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When could I be more active or add physical activity into my day?

What are some of the benefits of adding or keeping physical activity in my routine? What can help keep me on track?

What could get in the way of staying physically active? What can I do to overcome these challenges?

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PSyCHOlOgICAl INTerVeNTIONSHow can improving my psychological well-being reduce my fatigue?

Fatigue is commonly associated with emotional upsets, depression (feeling sad, down, or hopeless), and anxiety (feeling nervous or worrying too much).

Research has shown that psychological interventions can improve your mood and well-being and reduce your fatigue.

Types of psychological interventions you could consider include:

•Psychoeducation (education on cancer fatigue)

•Cognitive-behavioural therapy (CBT)

•Behavioural-activation therapy

What are the benefits of psychoeducation?Helps you better understand your fatigue

Helps you cope with your emotions

Provides you with ideas for managing your fatigue so you can plan your daily routine

Teaches you tips for conserving and balancing your energy and activities, and helps you figure out what is most important for you to do each day

Suggests ways to reduce stress and relax

Group education programs may be available in your area. You can share experiences and ideas with other people who have cancer-related fatigue.

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What is cognitive-behavioural therapy (CBT) and what are the benefits?

CBT focuses on how your thoughts, feelings, or behaviours may help or hurt your situation. CBT may help you break the cycle of negative and unhelpful thoughts, upset feelings, and unhelpful thoughts and behaviours and upset feelings that are related to your fatigue.

Helps you overcome discouraging, negative, or scary thoughts in daily life and replace them with thoughts that are more accurate, realistic, and helpful

Helps you cope with emotional or stressful changes caused by your fatigue

Teaches you to be in control of your thinking and beliefs

Helps reduce stress and fatigue

Negative ThoughtsHow we thinkaffects how we

feel and act

unhelpfulBehavioursWhat we do

affects how wethink and feel

upsetFeelings

What we feelaffects how wethink and act

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What is behavioural-activation therapy and what are the benefits? Behavioural activation focuses on replacing negative behaviours with positive and rewarding behaviours.

Helps you figure out which activities are important to you and find ways to do them

Teaches you how to notice when things are good and improving

Helps improve your mood and energy levels

Vicious Cycle ofDistress/Fatigue

Positive Cycleof Activity

BehaviouralActivation

Lowmood,

feel tiredFeel

better

Do moreof whatmatters

Stopdoingthings

Get lessout of

life

Get moreout of

life

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How can psychological strategies fit into my life?

What could be my benefits of participating in psychological interventions, such as education on fatigue, CBT, and/or behavioural-activation therapy?

What could get in the way of trying psychological options? What can I do to overcome challenges?

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SleeP STrATegIeSHow can improving sleep reduce my fatigue?

Sleep difficulties, such as insomnia (trouble falling asleep and/or staying asleep), are common in people with cancer. Sleep disturbances and poor sleep can also contribute to your fatigue.

You may feel the need to rest/nap during the day to recuperate from your fatigue; however, this can lead to a disrupted sleep-wake cycle (throwing off your natural body clock), which leads to sleep difficulties and can actually make your fatigue worse.

Insomnia is a treatable condition that is mainly due to poor sleep habits and inaccurate beliefs about sleep, all factors that can be changed.

Research studies have shown that cognitive-behavioural therapy specific for insomnia (CBT-I) can help improve sleep habits and put your sleep-wake cycle back in sync to improve sleep and reduce fatigue.

Good sleep hygiene practices can also prevent the development of sleep difficulties.

FATIGUE

DESYNCHRONIZATIONOF CIRCADIAN RHYTHMS

SLEEPIMPAIRMENTS REST, NAPS

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What’s the difference between fatigue and sleepiness?

Fatigue and sleepiness have several aspects in common; both are often manifested by a certain decrease in activity.

The sleepy person will tend to do nothing because they have an irresistible urge to close their eyes, lie down, and sleep, while the fatigued person will feel awake, but will not have the strength or energy to undertake something, even if they want to.

It is possible to be fatigued and sleepy at the same time, e.g., late in the evening.

Sleepiness promotes or induces sleep, while fatigue alone does not.

vs

FATIGUE SLEEPINESSLack of energy to do

activities, such as afterintense exercising

or busy day at work

Irrepressible desire toclose eyes/lie down,yawning, nodding,

heavy eyelids, watery eyes, etc.

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What does CBT-I involve?

CBT-I is made up of many parts, including:

•Stimulus control therapy consists of a set of instructions to modify poor sleep behaviours, such as spending too much time in bed and having irregular sleep schedules. The goal of this method is to reassociate the bed and bedroom with sleep and to put your sleep-wake cycle back in sync. The main instructions include going to bed only when feeling sleepy, as opposed to when feeling fatigued.

•Sleep restriction can help you get a solid sleep (sleeping all night without waking up). This is done by limiting time spent in bed to the actual sleep time.

•Cognitive restructuring can help you change your negative thoughts and beliefs about sleep that can make it hard to sleep at night (such as anxious thoughts).

•Sleep hygiene can help you make changes, such as sleeping in a quiet, dark room, so that you can sleep better.

What are the benefits of CBT-I and practicing good sleep habits? Improves your ability to fall asleep and stay asleep

Reduces anxiety, depression, and fatigue

Improves mood and general well-being

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How can better sleep habits fit into my life?

What could be my benefits of better sleep habits? What can help keep me on track?

What could get in the way of keeping up with healthy sleep habits? What can I do to overcome these challenges?

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SPIrITuAl PrACTICeSWhat is spirituality?

Spirituality is a person’s sense of peace, purpose, connection to others, and beliefs about the meaning of life.

Spirituality can mean different things to different people. You may think of yourself as spiritual and religious, or spiritual but not religious. Spirituality may be found and expressed through an organized religion or through other means such as reflective practice, nature, or a connection to those we love.

Spirituality and spiritual practices are as diverse as the persons who believe in them.

There are many types of spiritual practices. Some examples are:

•Meditation

•Prayer

•Spiritual reflection or journaling

•Spiritual communities/gatherings

•Compassion to others

•Mind-body practices, such as yoga, tai chi, and qigong

•Mindfulness-based stress reduction (MBSR), a group program combining meditation practices

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How can spirituality reduce my fatigue?

Many people find strength in spirituality when facing cancer. Research has shown that people with cancer who have a higher sense of meaning/peace are able to enjoy life despite having fatigue.

Spiritual practices, including mind-body practices such as yoga, can also help people cope with and reduce their worries and suffering, which may help to improve their fatigue.

Mindfulness helps you become aware of your thoughts, feelings, and sensations in the present moment without judging yourself. It has been shown to be helpful for fatigue and can help you have greater acceptance of your cancer fatigue and feel more positive.

What are the benefits of spiritual practices?

Help you find sources of spiritual strength to lean on in times of fatigue

Give you hope so you can enjoy life even when you feel very tired

May help improve fatigue and energy levels

Improve mood and general well-being

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What spiritual practices can I include in my life?

What are some of the benefits of including spiritual practices, such as meditation, in my life?

What could get in the way of my spiritual well-being? What can I do to overcome these challenges?

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Notes

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NuTrITIONHow can nutrition impact my fatigue?

After a cancer diagnosis and during treatment, it is normal for people to feel less hungry or not eat much.

Changes in appetite, changes in the way foods taste or smell, treatment side effects, and changes in the way your body uses food can cause problems that impact fatigue, such as:

•Anemia

•Fluid and electrolyte imbalances

•A lack of vitamins, minerals, and other important nutrients

•Unintentional weight loss or weight gain

All these factors can lead to poor nutrition and, without proper nutrients or fuel for the body, you may feel very tired and sluggish.

In most cases, these conditions may be treatable. Eating enough good foods (adequate nutrition), drinking enough water (hydration), and having enough potassium and sodium in your body (electrolyte balance) may help prevent and treat your fatigue.

Research has shown that a diet rich in fruits, vegetables, whole grains, and foods high in omega-3 fatty acids can reduce fatigue.

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What are the benefits of proper nutrition?

Provides strength and vitality

Prevents nutritional deficiencies that can cause fatigue-related symptoms

May prevent weight loss or gain and muscle loss so you have the energy and strength to keep moving

May enhance mood

Increases your ability and energy to exercise and do other daily activities

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NuTrITION MyTHS

Myth #1: Eating sugar feeds cancer.

False: All cells in your body consume sugar as they grow and divide, but eating sugar does not make cancer cells grow faster; your body requires sugar (glucose) for energy.

You should limit foods that have added sugar, such as baked goods, cereal, and candy. Foods with naturally occurring sugar, such as fruit and milk, are better choices.

Myth #2: I should avoid gluten.

False: Unless you have celiac disease, there is no reason to avoid gluten. There is no evidence that gluten lowers energy levels or increases cancer relapse.

Whole grains (many of which contain gluten) have been shown to reduce fatigue and should be part of your diet.

Myth #3: I should only eat organic foods.

False: There is currently no evidence to support the idea that organic foods are healthier and more nutritious than non-organic foods.

You should enjoy fruit, vegetables, and whole grains however you want – fresh, frozen, canned, non-organic, or organic – whatever fits your budget and is easiest to include in your diet. Make sure you wash all fresh fruit and vegetables.

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How can better nutrition fit into my life?

What are some of the benefits of improving my nutrition? What can help keep me on track?

What could get in the way of improving my nutrition? What can I do to overcome these challenges?

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4. My VAlueS Why is improving my fatigue important to me?

What are two benefits that mean the most to me or would help me to become motivated to try some of these strategies?

What are two challenges that would be hard for me to overcome? What can I do to overcome these challenges?

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5. My DeCISION Check off the options you would most likely try to help manage your fatigue. You may choose more than one option.

Please review My Cancer Fatigue ACTION PlAN Part 2: Management guide,

or visit the website (MyCancerFatigue.ca) for tips and ideas for each intervention to help you create your own action plan to

reduce your fatigue and help you feel better.

I would liketo try:

Treatmentoption

Physical activityand exercise

Psychological well-being

Sleepstrategies

Spiritual practices

Nutrition-basedinterventions

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Notes

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The development of these materials was funded by Astellas Pharma Canada, Inc.

XTD1218080EN

Reviewed and endorsed by the Canadian Urological Association, February 2019

Endorsed by Prostate Cancer Canada