Chapter 2

What to expect after treatment?

Managing side effects and their symptoms

Unpack this topic

Look up and not down; look out and not in; look forward and not back . . . .

Your cancer treatment is over. Now you can begin to think about what lies ahead for you. During this post-treatment period, and depending on your diagnosis and the treatment you received, you may experience what are called late or long-term side effects. Some of these effects can be painful or troublesome. In many cases, however, they are temporary, or they can be successfully managed.

After your treatment is complete, it is important to be aware of the potential side effects you could face and to maintain communication with your healthcare team. At assessment and follow-up appointments, your doctor will most likely tell you more about what to expect at this stage, and what signs you should look out for (if any) in your particular case.

This chapter presents the most common side effects—and their symptoms—you may encounter after treatment, information on how to manage them, and services you may find useful.

Section 1

After-treatment late and long-term side effects

With treatment over, you may be anxious to get back to normal life. However, you may be finding this difficult as a result of side effects that you are experiencing. It is important to be aware of what is happening or may happen to your body, so that you can take the necessary steps to manage any real or possible side effects.

Try to get into the habit of thinking about the state of your health on a regular basis. For example, pay attention if you are experiencing forgetfulness, headaches, pain, difficulties concentrating, or anything else that affects your health and wellbeing. Being aware of any side effects can make a difference in how well they can be managed and, ultimately, to your recovery.

There are many possible side effects that can affect the body and mind after treatment, but not everyone will experience them in the same way. Someone who had the same diagnosis and treatment as you may not have the same physical, emotional or psychological reactions to treatment. Your situation is unique to you.

There are side effects that can occur immediately after treatment, and there are also late-term effects that can arise in the months following treatment. Symptoms of side effects can pass relatively quickly or may have to be managed for a longer period of time, sometimes for years. This is why it is important to know what to look out for in order to be able to recognize and deal with any side effects successfully.

Key points to keep in mind in general when dealing with side effects and their symptoms:

Track your health after treatment in a daily journal (also called a symptom diary – see below). Having a ‘health history’ written down will help you keep track of side effects and symptoms so that they can be addressed and managed as early as possible.
Consult with your medical team if you feel that a symptom or side effect is preventing you from returning to work. Also check with your insurance company and/or the Régie des Rentes du Québec to see if you are eligible for long term disability. For more information, go to Chapter 5: Back to work.
Understand that side effects can be very different from person to person. They can present themselves right at the end of treatment, or months and even years later (late effects). The length of time they last also varies. For some people they improve quickly, while for others the effects are long term.
Minimize the disruption of long-term effects to daily life by developing habits and routines to manage them as effectively as possible.

How to use a symptom diary

Tracking your symptoms in a symptom diary (also called a daily journal) is a very useful way to help you and your healthcare team better understand any side effects that you are experiencing. If you can see a pattern over a number of days about what makes your symptom better or worse, such as pain, it can help you self-manage your symptom more effectively. This record will also help your doctor develop the best possible treatment plan for you.

Record the date and time that the symptom affects you. You may have more than one entry in each day, depending on the symptom. Below is a list of the kinds of questions you could ask yourself. Try to include as many details as possible.

How bad was it? (on a scale of 0-10: 0=none; 10=worst possible)
How long did it last?
Is it there all the time or does it come and go?
What were you doing when it happened? (e.g., exercising, eating)
What did it feel like? (e.g., pain could be aching or throbbing)
Is there anything you did that made it feel better? How well did this work?
Is there anything you did that made it feel worse?
Do you have any other physical problems with this symptom? (e.g., dizziness)
Does this symptom interfere with your everyday life or emotional welbeing in any way?

Section 2

What are the possible side effects?

The following is a list of some of the common side effects that are possible after cancer treatment. Side effects depend on the type of cancer and the type of treatment experienced, and on the individual’s response to treatment. Even people who had the same treatment may not have the same experience with side effects. Talk to your doctor if side effects, like the ones described in this section, are seriously affecting your life post-treatment, or if anything else does not seem normal to you.

Fatigue

What is it?

You are probably familiar with cancer-related fatigue—this is the most common side effect experienced by people going through cancer treatment. Perhaps you had to deal with it yourself during your treatment. Now, however, you may have to take a step back from that experience to consider if fatigue seems to be continuing since your treatment ended—and if it is, how it is affecting you.

Similar to fatigue during treatment, with post-treatment fatigue you can feel extremely tired and without energy, both in body and mind. This side effect occurs most often during the first year after the end of treatment. It can improve quickly or continue for a few years. It may also not feel the same all the time—some days it may be quite severe and other days very mild. The length of time it lasts and how it feels can vary from person to person.

Fatigue can generally be described in three ways:

Mild fatigue. You feel a bit of fatigue, but are still able to perform your regular daily activities, such as cooking, cleaning, or going to work.
Moderate fatigue. Fatigue is present, causing you moderate distress. It is difficult for you to perform your daily activities, and you have trouble with activities that require more energy, such as climbing stairs or walking.
Severe fatigue. Fatigue is strong and always present, causing you high levels of distress. You cannot perform regular daily activities and you feel the need to rest or sleep all day. When resting, you sometimes feel some of the following symptoms: sudden fatigue, shortness of breath, rapid heart rate.

If you are concerned about this side effect, you may wish to talk to someone in your healthcare team. If you would rate your fatigue as ‘severe’, you should talk to your healthcare team as soon as possible.

Why does it happen?

Many things can cause cancer-related fatigue, or add to the fatigue experienced post-treatment:

Cancer therapies, including surgery and hormone therapy.
After treatment side-effects such as anemia, a weakened immune system, or hormonal changes.
Medications, such as pain relievers.
Poor nutrition or dehydration.
Lack of sleep.
Pain.
Depression or anxiety.
Emotional distress.
Not enough physical activity.
Other health problems.

Fatigue is the most common side effect of radiotherapy. Although most patients experience mild fatigue, patients who receive radiation to the brain tend to experience more severe fatigue, as well as sleepiness.

How do I manage it?

There are many things you can do during your recovery that can help reduce the severity of fatigue symptoms. Just as there can be different causes for cancer-related fatigue, there are different actions you can take to help improve these symptoms.

The website My Cancer Fatigue (www.mycancerfatigue.ca/Home/MyActionPlan) can help you develop an action plan for managing your fatigue. The topics highlighted for managing fatigue are physical activity, sleep strategies, nutrition, spiritual practices and psychological interventions. You can create your own action plan using some or all of the tips, worksheets and tools suggested—depending on your individual situation—to help you move forward. The site also includes a list of resources for all of the provinces.

In general, coping strategies for cancer-related fatigue include the following:

► Use your energy wisely. You may feel that you don’t have enough energy to get through the day, but this can be improved by planning and prioritizng. Think about what is most important to you, and keep your energy for those activities. Plan your day so that you are active when you usually have more energy, and adjust some of your activities. Here are some examples:

Sit on a stool while cooking rather than standing up for an extended period of time.
Organize to have your shopping delivered to your home instead of carrying your own bags.
Ask those close to you for help with household chores or childcare.
Rest or take naps between activities.

Support groups for patients post-treatment can offer many tips and strategies to help you make the most of your energy and organize your daily activities to reduce fatigue. Many cancer centres have programs for people who have completed cancer treatment. Check the cancer centre where you received treatment to see what’s available. See Chapter 2: What to expect after treatment / Section 7: Programs to help you move forward.

► Stay physically active. Did you know that one of the best ways to cope with fatigue is by being active? It may sound confusing, but it has been proven that an effective way to increase energy levels is to be physically active, not just to rest. Begin at a pace that is comfortable for you, and aim for what the experts recommend: 30 minutes of moderate exercise most days of the week. You can start slowly with an activity like walking around the block for 10 minutes, and move on to other activities that you enjoy as your strength and endurance increase. Eventually you can mix things up a bit to get both aerobic activity and strength training into your routine. For more information on physical activity, see Chapter 4: Regaining function / Section 3: Physical Activity.

The level of post-treatment fatigue will vary from one person to the next. Listen to your body, include activities in your daily routine, and allow yourself the time you need to rest. Over time, you will come to understand your body and be able to manage your energy levels.

► Get a good night’s sleep. If you are having trouble falling asleep or sleeping well once you do get to sleep, you are not alone. Small changes in sleep habits can go a long way to improving your quality of sleep. Here are some strategies that may help:

Go to bed when you feel sleepy—your body will let you know when it’s time for bed.
Relax before bedtime by doing an activity that you enjoy – read a book, listen to music, meditate, take a warm bath. It is best to turn off the TV or computer at least 1 hour before bedtime.
Get your planning or problem solving done in the early evening.
Get up and do a relaxing activity if you can’t fall asleep after 20 to 30 minutes.
Use your bedroom only for sleep and intimacy.
Wake up at the same time every day. Open the curtains and let natural light into your space.
Limit your intake of alcohol and caffeine (from beverages and food such as chocolate) especially in the afternoon and evening.
Limit napping during the day. Napping for less than 1 hour during the afternoon (between 12 and 3) may help you have more energy, and probably won’t interfere with sleeping at night. If possible, take a nap or rest in a room other than your bedroom.

For more information on how to sleep better, check out the sleep strategies at My Cancer Fatigue www.mycancerfatigue.ca/Home/SleepStrategies.

► Manage stress. Although it’s always easier said than done, try to manage any stress you have as best as you can. Stress can contribute to feelings of tiredness—reducing stress can, in turn, reduce fatigue. Talking about your concerns and emotions can often help reduce stress. You can speak with a friend, a professional, or contact a post-treatment support group where you can speak with other people who are going through the same experiences as you. Many cancer centres have programs for people who have completed cancer treatment. Check the cancer centre where you received treatment to see what’s available. See Chapter 2: What to expect after treatment / Section 7: Programs to help you move forward.

Stress-reducing activities may also help with fatigue. Exercise, relaxation techniques, breathing exercises, meditation and complementary therapies—such as massage, yoga, music therapy, reiki and healing touch—may help reduce stress levels and improve your emotional health. For more information, see Chapter 2: What to expect after treatment / Section 6: Complementary therapies.

► Eat well. Good nutrition, which means eating a variety of healthy foods and drinking enough water to stay hydrated, will go a long way to help improve your energy levels. For more information, and tips and strategies, see Chapter 4: Regaining function / Section 2: Nutrition.

► Know when to ask for help. If you are experiencing any of the following symptoms as well as fatigue, you should talk to your healthcare team.

Dizziness or unusual falling.
Loss of appetite.
Unexplained or continual bleeding.
Sudden rapid heartbeat, or shortness of breath.
Feelings of being unable to cope, of anxiety, or of being depressed.

Top tips

Pace yourself and prioritize activities. Give yourself time to rest during the day.
Aim to be active for 30 minutes a day with an activity you enjoy.
Relax before bedtime to improve your quality of sleep.
Manage stress. One way to do this is by focusing more on the things you can control.
Speak to others who have been through this experience. Check out support groups in your community.
Eat a balanced diet.

Tips for talking to your healthcare team about fatigue

Use the descriptions above (mild, moderate, severe) to rate and describe your fatigue when speaking to you healthcare team.
Try to explain as clearly as you can how you’ve been feeling and what the symptoms are that you’ve been experiencing. Think about when your fatigue began, how bad you feel it is, how it’s affecting your life, and what you have tried to do about it.
Ask questions about the possible causes: medications, pain, stress, diet and hydration—anything and everything that could affect your energy levels.
Also ask about the best ways for you to deal with it. Depending on your particular issues, exercise and relaxation techniques may work. It is also possible that your doctor will refer you to a specialist, such as a physiotherapist, dietitian, or psychologist for professional help.
Start a daily journal to track your fatigue. For more information on how to use a symptom diary, see Chapter 2: What to expect after treatment / Section 1: After treatment late and long-term side effects / Heading: How to use a symptom diary.

Memory and concentration issues

What is it?

‘Brain fog’ (or ‘chemo brain’ as many patients call it) is another common side effect of cancer treatment. This term refers to memory or concentration problems, such as difficulties finding a word, remembering something you recently learned or concentrating for any length of time. Memory and concentration issues are also known as ‘cognitive difficulties’ or ‘cognitive dysfunction’. If you are concerned about these symptoms, you may wish to have a discussion with someone in your healthcare team.

Why does it happen?

The main cause of post-treatment cognitive difficulties is still unknown. It is also not understood why some patients have cognitive problems and others do not. However, it seems that people who have had chemotherapy or head and neck radiation treatment have a higher risk of cognitive difficulties. Other factors that may increase risk include (but are not limited to): hormone therapy; immunotherapy or other medications; fatigue or sleep problems; anxiety or depression; or nutritional imbalances.

How do I manage it?

Cognitive problems may disappear over time or they may last for years. However, depending on their severity and the factors causing them, you may be able to improve memory or concentration problems with organizational strategies, lifestyle adaptations or cognitive exercises. For more information, tips and expert advice, go to Chapter 2: What to expect after treatment / Section 4: Coping with cognitive changes.

Pain

What is it?

There are different types of pain that can develop after cancer treatment. This pain can range from mild to severe, and it can be temporary or last for longer periods of time. The experience of pain is very personal—people feel and tolerate pain differently. If you experience any pain after your treatment is over, you should discuss it with your doctor.

Some types of post-treatment pain include:

Bone pain—aching or pulsing pain.
Piercing or sudden pain.
Pain due to nerve damage—burning, shooting pains or tingling.
Visceral pain—a dull or squeezing pain that comes from the organs inside the body (difficult to identify).
Painful scars from surgery.
Pain that feels like it is in a part of the body that is no longer there, such as a missing limb. This is called ‘phantom pain’.

Pain can generally be described in three ways:

Mild pain. You have some pain but can perform your regular daily activities, such as bathing, cooking, cleaning or going to work.
Moderate pain. It is difficult for you to do your regular daily activities, which is causing you some distress. If you take medication for the pain, it does not always bring you relief.
Severe pain. You are in pain all the time, and it is causing you a lot of distress. You cannot do any of your regular daily activities. Your muscles may also feel weak.

Why does it happen?

Post-treatment pain can happen for a number of reasons.

Radiation treatment can cause skin sensitivity that can last for several months.
Chemotherapy, radiation treatment, and surgery can damage nerves (a condition called neuropathy), which can cause pain, commonly in the hands and/or feet.
Steroid medication can cause bone pain.
Surgery scars can be painful.
‘Phantom pain’ from a missing limb is also real pain.
Pain can be made worse by stress, anxiety, and emotional upheaval.

How do I manage it?

If you are experiencing any pain after cancer treatment, talk to your doctor so that they can identify the source of the pain and recommend the appropriate pain relief therapy for you. Treating pain effectively can positively impact your quality of life. You’ll be able to enjoy your activities and sleep better at night, which are all essential to your recovery. Below are some strategies for pain management.

► Pain Medication. If you are prescribed pain medication, carefully follow the instructions about how much to take and when to take it. Make sure that you follow up regularly with your doctor so that your medication can be adjusted if your pain changes in any way. Talk to your doctor and pharmacist if you are taking any medication for pain that has not been prescribed by your doctor. If your pain continues even with medication, your doctor may refer you to a pain management specialist.

► Physical Therapy. Physical therapy may help with pain relief. A physical therapist can advise you on how your pain may be relieved through a variety of techniques, such as massage, heat or cold therapy, or exercise.

► Complementary therapies. You may also want to find out about how complementary therapies—such as acupuncture, meditation, relaxation and hypnosis—which may be able to help reduce your pain. For more information, see Chapter 2: What to expect after treatment / Section 6: Complementary therapies.

► Exercise. Although it may be surprising, exercise can actually help relieve certain types of pain—especially the overall aches and pains, and fatigue that people can experience after treatment. Gentle activities such as walking, swimming, yoga, and simple stretching exercise may be helpful. Talk to your healthcare team before you start an exercise program or a new activity, to make sure it is appropriate for your situation. For more information on physical activity, see Chapter 4: Regaining function.

► Relaxation techniques. Doing relaxing activities that you enjoy is a well-known coping strategy, including for pain management. It could be listening to music, enjoying nature, reading a good book—whatever helps you relax. Meditation and breathing exercises may be another helpful option, as well as talking about your pain with people you trust. Stress can aggravate pain, so anything that helps you feel relaxed is a positive step. For more details on how to practise deep abdominal breathing exercises, visit www.healthlinkbc.ca/health-topics/uz2255.

► Pace yourself. Organize your activities to make them as easy as possible for you to handle. Don’t take on too much and try to keep tasks short.

► Know when to ask for help. Speak with your healthcare team immediately if you experience any of the following symptoms:

Pain is getting worse or not going away.
You have a new pain.
It is painful when you take a deep breath.
You have sudden leg weakness, especially if the pain is in your back.

Tips for talking to your healthcare team about pain

Use a scale, such as 1-10: 1=hardly any pain, 10=worst possible pain.
Be as precise and clear as you can when you describe your pain: sharp, dull, gnawing, steady, stabbing, etc.
Explain how your pain has affected your daily activities. What does it prevent you from doing? What does it make it difficult for you to do?
Explain when your pain started, ended (if this applies to you), and what makes it less or more severe.
List your medications.
Start a daily journal to track your pain. For more information on how to use a symptom diary, see Chapter 2: What to expect after treatment / Section 1: After treatment late and long-term side effects / Heading: How to use a symptom diary.

Peripheral neuropathy

What is it?

Peripheral neuropathy (also known simply as neuropathy) occurs when the nerves in the body are damaged. Damaged nerves do not send and receive messages to and from the spinal cord and brain to the rest of your body properly. Neuropathy can develop during or after your treatment and it can last for a very short time or for months. In some cases, it can be permanent.

The first signs of neuropathy generally begin in the fingers and toes. Common signs and symptoms include:

Tingling or numbness.
Stabbing or burning pain.
Sensitivity to touch.
Sensitivity to heat and cold.
Loss of balance.
Difficulty walking.
Difficulty picking up small objects.

Why does it happen?

Some cancer treatments can damage the nerves. Certain chemotherapy drugs increase the risk of developing neuropathy. Post-treatment neuropathy can also be made worse by pre-existing conditions, such as diabetes or alcoholism, which carry their own risk of nerve damage.

How do I manage it?

If you experience any of the symptoms of neuropathy, you should speak to your doctor as soon as you can. Your doctor will be able to plan a treatment that is appropriate for you.

Before you see your doctor to discuss your neuropathy, track your symptoms and feelings in a daily journal for at least a week.

Record differences in tingling, numbness, balance, pain, and sensitivity to heat and cold.
Think about the number of times your neuropathy interrupted your daily life.
Track any sleep problems or changes to your normal sleep patterns.
Also note the following about your neuropathy:
- How it makes you feel emotionally—e.g., sad, down, anxious, doesn’t bother you.
- How it affects you physically—e.g., loss of balance, inability or difficulty completing tasks or normal daily activities.
- How it affects your social life—e.g., avoid certain activities.

Strategies for managing neuropathy include:

Pain relievers—topical creams, patches, or oral medication.
Physical therapy and exercise—to help with balance and strength.
Occupational therapy—to help improve coordination, and to help make your home environment safe for you.
Acupuncture—to help relieve symptoms.

It is also important to protect your hands and feet from extreme heat or cold, and from sharp objects. For example, it may be a good idea to wear gloves and warm socks on a cold day although your hands and feet may not feel cold. You may want to wear work gloves and shoes when working around the house to protect yourself from cuts and injuries.

When it looked like the neuropathy symptoms in my feet were going to be permanent, I was a bit discouraged. I was expecting them to go away eventually and it was difficult to accept that they wouldn’t. My toes always feel like they’re a bit frozen and they are sensitive—if I stub my toe it’s very painful. But I focus now on how to work with it—it’s easier than being angry about it.

Lymphedema (swelling)

What is it?

Lymphedema is swelling resulting from the build-up of fluid in body tissue, most commonly in the arms, legs or neck. People most at risk for lymphedema are those who have had lymph nodes removed during surgery (for example, breast cancer patients often have lymph nodes removed under their arm during surgery) and those who have had radiotherapy to treat breast or prostate cancer, melanoma of the arms or legs, or gynecological cancer (e.g., ovarian, uterine).

Lymphedema can be mild and improve quickly, or painful and last longer. It can occur right after surgery, or it can develop several months or years after treatment. In addition to swelling, signs and symptoms of lymphedema include redness and pain. Fever could indicate that there is also an infection present. If you are concerned about any of these symptoms, you may wish to have a discussion with your healthcare team.

Why does it happen?

The removal of lymph nodes and radiotherapy, as well as the cancer itself in some cases, can damage the lymphatic system. The lymphatic system is basically a series of tubes, similar to blood vessels, that helps drain and circulate fluid throughout the body. If the system is damaged, fluid can collect in places where it shouldn’t. Injury to the skin of the affected area (e.g., arm), such as a cut, burn or an insect bite, can increase the risk of lymphedema developing.

Although lymphedema can occur in up to 30% of patients treated for breast cancer, it is important to remember that most patients won’t develop lymphedema, and the majority of those who develop it will only have a mild form.

How do I manage it?

Talk to your doctor about ways in which you can minimize the risk of developing lymphedema, and how you can relieve the pain and discomfort caused by the swelling if it does develop. You should always contact your doctor at the first sign of infection (e.g., fever).

Some strategies for managing lymphedema include:

Keep your skin clean and moisturized. This can help reduce the risk of bacteria getting into damaged skin and causing an infection.
Wear gloves during activities that could damage the skin, to avoid cuts and burns that may cause an infection.
Avoid getting injections or blood tests in the area that is affected, even if there is no swelling.
Do exercises that will encourage circulation and help your body to drain the fluid. A therapist can give you advice about this, but examples include raising your arms or legs.
Try regular massage therapy. Special massages, called manual lymphatic drainage technique (provided by a licensed therapist), encourage circulation to help reduce swelling.
Use compression garments. Compression garments may help relieve symptoms or control lymphedema. Garments should be fitted by a specialist.

Lymphedema therapy

Below is a sample of the services available for lymphedema therapy in a sampling of provinces. Use it as a guide to look for more information, or for information and services in your particular area. Ask in advance if these services are covered by your provincial healthcare plan, and verify what services are covered under your private insurance plan.

By referral

Quebec/Montreal

The Lymphedema Support Centre of the Quebec Breast Cancer Foundation: muhc.ca/cancer/page/lymphedema-support-centre-breast-cancer-foundation-quebec. This is the only medical centre in Quebec that specializes in the evaluation and treatment of lymphedema resulting from breast cancer. The centre offers evaluation, consultation and referral services for those affected with primary or secondary lymphedema. Services are available upon referral by a doctor.
The Jewish General Hospital Lymphedema Clinic at the Segal Cancer Centre: www.jgh.ca/care-services/segal-cancer-centre/lymphedema-clinic. Available to patients of the hospital.
MUHC Breast Clinic Lymphedema Services: www.mcgill.ca/lymphedema-research/lymphedema-services-offered-mcgill-teaching-hospitals. Provides a lymphedema prevention and therapy program to patients of the Breast Clinic of the MUHC and Royal Victoria Hospital.

Ontario/Toronto

Sunnybrook Health Sciences Centre: sunnybrook.ca/content/?page=occ-lymphedema. The Odette Cancer Centre provides general information sessions and individual assessments to its patients on how to manage lymphedema after referral by a physician.
St. Joseph’s Health Centre: stjoestoronto.ca/areas-of-care/outpatient-rehab. Occupational therapy is provided for patients having a referral from a St. Joseph’s oncologist or family physician.
Lymphedema Association of Ontario: www.lymphontario.ca/Hospital-Based-Clinics. This page lists all hospital-based lymphedema clinics in Ontario as well as each clinic’s specialty and what type of referral is needed.

Alberta/Calgary

Alberta Health Services—Rehabilitation Oncology services: www.albertahealthservices.ca/findhealth/Service.aspx?id=1026510&serviceAtFacilityID=1122959. Provides information on self-management, compression bandages, and tips for exercise. By referral.
Alberta Lymphedema Association: albertalymphedema.com/clinics. List of ALA-approved lymphedema treatment clinics around the province.

British Columbia/Vancouver

BC Cancer: www.bccancer.bc.ca/health-info/types-of-cancer/breast-cancer/lymphedema. Provides information on lymphedema and how to contact approved clinics and physiotherapists for lymphedema treatments.
BC Lymphedema Association–Vancouver Lymphedema Clinic: bclymph.org/page-1834135. Provides information on which services related to lymphedema are offered and how to contact the clinic.

Private services

Quebec/Montreal

The Lymphedema Association of Quebec: en.infolympho.ca. Provides information, support and clinical resources, as well as a list of certified lymphedema therapists.

Ontario/Toronto

Foundation Physiotherapy and Wellness: foundationphysio.com/physiotherapy-services/lymphedema. This clinic assesses each patient to create a tailored treatment plan for lymphedema. The focus is on massage drainage and exercise.
Markham Lymphatic Centre: markhamlymphaticcentre.com. Promotes different treatment plans for each patient by combining physiotherapy, massage therapy, and diets.

Alberta/Calgary

Physiotherapy Alberta—Lymphedema: www.physiotherapyalberta.ca/xchange/evidencebasedpracticeresources/physiotherapyworks/lymphedema. Provides detailed information on lymphedema and the different types of treatment.
- All verified physiotherapists can be found here: www.physiotherapyalberta.ca/physiotherapists/physiotherapist_listings. Physiotherapists can be filtered by specialty—select ‘lymphedema’ in the ‘Conditions Treated’ section.

British Columbia/Vancouver

Northview Health and Wellness Centre: www.northviewhealth.com/massage-therapy/lymphedema/about. Provides information of the different types of lymphedema and which services are offered at the centre.

Compression garments

Quebec/Montreal

The Régie de l’assurance maladie du Québec (RAMQ): www.ramq.gouv.qc.ca/en/citizens/aid-programs/compression-garments-lymphedema. Provides a compression garments program for the treatment of lymphedema. Coverage is available for those with primary or secondary lymphedema.

Ontario/Toronto

Government of Ontario: www.ontario.ca/page/garments-pumps-and-braces. Provides information on how to obtain lymphedema compression garments and pumps and financial assistance for these medical expenses.

Alberta/Calgary

Government of Alberta : open.alberta.ca/publications/aadl-program-manual-n#summary. Full manual on costs covered for lymphedema treatments and compression garments, as well as eligibility criteria.

British Columbia/Vancouver

BC Lymphedema Association: bclymph.org/page-715840. Information on the types of compression garments and where to buy them.
Government of British Columbia: www2.gov.bc.ca/assets/gov/health/health-drug-coverage/pharmacare/p_oinfosheet.pdf. Information on the PharmaCare Prosthetic & Orthotic Program, and what is covered by this plan.

Mouth and teeth problems

What is it?

Depending on the type of cancer involved, mouth or teeth problems may develop after treatment. Problems can include dry mouth, more cavities than normal, changes in, or loss of, sense of taste, discomfort or pain in the gums, stiffness in the jaw, and infection. These issues often improve quickly, or they may go away slowly over a longer period of time. In some cases, they may be permanent.

Why does it happen?

Radiation or surgery of the head or neck may interfere with the normal functioning of the salivary glands (that produce the saliva in your mouth), which affects the ability of your mouth to stay hydrated. This lack of normal hydration can lead to mouth and teeth problems. Some types of chemotherapy, as well as bone marrow transplants, may also cause these problems.

How do I manage it?

Speak with your doctor if you are experiencing any of the mouth or teeth issues described above.
Make an appointment to see your dentist when you complete your cancer treatment to get advice about dental health.
Drink lots of water to help keep your mouth hydrated.
Try increasing your saliva by chewing sugarless gum. There are also saliva substitutes that can help hydrate your mouth.

Weight gain and loss

What is it?

Many people experience weight gain and/or weight loss during cancer treatment, although weight loss is more common.

Why does it happen?

There are a number of reasons why people may gain weight during cancer treatment, such as:

Hormone therapy medications. These can slow down your metabolism (how your body breaks down food) so that calories can’t be burned by the body as quickly as normal.
Chemotherapy drugs that can cause fluid retention.
Steroid medications that can increase fatty tissue.
Eating more food due to cravings, anxiety, or to control nausea.
A decrease in activity because of loss of energy.

Some people who gain weight during treatment find it difficult to lose when treatment is over.

I had lost all the weight that I gained from the steroids and now, for some reason, it’s all back.

Weight loss may result from a reduced appetite and a lack of interest in food, which is common for many patients during treatment. A lack of appetite may result from a change in metabolism because of medication, or from other side effects of treatment such as nausea, loss of taste, or pain.

How do I manage it?

Because you did not gain weight under normal circumstances, the way in which you will approach losing weight may be different from other weight loss programs. You may want to speak to your doctor, nutritionist or dietitian about the best ways for you to manage a healthy weight. Remember to be patient with yourself, and focus on the things that you can control, such as a healthy diet that will interest you.

If you need to regain your appetite and put on some weight, speak to your doctor, nutritionist or dietitian in this case as well—you may have digestion problems due to your treatment that need to be addressed. There are also a number of strategies that you can try to help make food interesting again:

Begin by eating foods that you like in small quantities.
Light physical activity, such as walking, before you sit down for a meal may help increase your appetite.
If you have difficulty swallowing, drinking small amounts of water while eating, eating softer foods such as bananas, soups and applesauce, or putting hard foods through a blender, should help make eating easier.

Find more information on nutrition in Chapter 4: Regaining function.

Weight gain or weight loss can be worrisome for some patients. If this is a preoccupation for you, know that you can request to see your cancer centre’s nutritionist for a post-treatment consultation.

Incontinence (loss of bladder and bowel control)

What is it?

The loss of control of bladder or bowel function can persist after treatment. These issues are among the most unwelcome and bothersome for people who are trying to return to their normal daily lives.

Why does it happen?

Treatment for cancers such as bladder, prostate, colon, rectal and ovarian (among others) can affect the normal functioning of the bladder or bowels, which can result in a lack of control. You may find that you need to go to the bathroom suddenly or often. In some cases, surgery may result in complete incontinence.

How do I manage it?

Speak with your doctor if you have any bladder or bowel difficulties, or if you’ve experienced any changes in bladder or bowel function. There are also a number of strategies that may help you manage or reduce the symptoms and awkwardness of these issues. These include:

Kegel exercises (www.canadiancontinence.ca/pdfs/pelvicmuscleexercises.pdf).
Medication.
Incontinence pads and other hygiene products.
Adjusting your diet—a lot of foods can make loose bowels worse.
Emptying your bladder more often.
Creating a schedule for your outings and activities, and noting where toilets are located.
Support groups. These can help you cope with incontinence and the stress that comes with this side effect, or if you need help coping with an ostomy. (See Chapter 2: What to expect after treatment / Section 3: Managing an ostomy after colorectal surgery.)

The following websites may also be helpful:

The Canadian Continence Foundation: www.canadiancontinence.ca.
Ileostomy/Colostomy Association of Montréal: www.aicm-montreal.org.
Alberta Health Services – Continence Clinic: www.albertahealthservices.ca/findhealth/service.aspx?Id=1059601.
BC Cancer – colostomy, urostomy, ileostomy websites: www.bccancer.bc.ca/our-services/services/library/recommended-websites/managing-symptoms-and-side-effects-websites/colostomy-urostomy-ileostomy-websites.

Hormone therapy symptoms

WOMEN

What is it?

Hormone therapy (also known as endocrine therapy) is a type of cancer treatment that is used to slow down or stop the growth of cancer cells by blocking hormones that stimulate the tumours. It is commonly used to treat breast cancer. Certain breast cancers are sensitive to the hormone estrogen, for example. Reducing the level of this hormone in the body can interfere with the growth of breast cancer. Hormones are chemicals that are made in different parts of the body to help carry out certain actions. For example, the ovaries make estrogen and progesterone, which help with reproduction.

Hormone therapy may be used alone or in combination with other treatments. The type of hormone therapy you receive will depend on the type of cancer you have—and the side effects, or symptoms, will depend on the hormone therapy. Symptoms will also depend on your individual response to treatment.

Many of the symptoms of hormone therapy are similar to the symptoms of menopause. There are two main types of drugs used in hormone therapy for breast cancer: tamoxifen (and similar drugs) and aromatase inhibitors. These drugs can cause different symptoms—talk to your doctor about which ones might be important for you. Hormone therapy symptoms include:

Hot flashes. Some women also experience anxiety and heart palpitations.
Night sweats.
Vaginal dryness.
Irregular periods (premenopausal women).
Fatigue.
Headache.
Weight gain.
Muscle aches and joint pain.
Nausea.
Mood changes.
Depression.
Less interest in sex.

Rare complications connected to tamoxifen include blood clots and uterine cancer. Talk to your doctor to find out what you should know about these complications.

Why does it happen?

Hormone therapy reduces the normal level of certain hormones in the body by blocking their production. Symptoms result from this change in hormone levels.

How do I manage it?

There are many strategies you can try to help manage symptoms related to hormone therapy (and menopause). Regular physical activity can help reduce many of the symptoms, including hot flashes, fatigue, weight gain and mood changes. If symptoms are seriously inferring with your life and self-management strategies do not give you enough relief, talk to your doctor. It might be possible to change your medication to one that causes fewer symptoms for you.

► Hot flashes and night sweats. Some women also experience heart palpitations with this symptom.

Drink lots of water throughout the day. Also, drinking cold water can help reduce your body temperature.
Avoid anything that seems to trigger your hot flashes, such as alcohol, caffeine or spicy foods.
Lower room temperatures or use a fan, particularly in your bedroom.
Wear clothes that let your skin breathe—such as loose-fitting items and those made of natural fabrics like cotton.
Dress in layers so that you can easily remove clothes if you get too warm.
Use cotton sheets.
Take a cool shower or bath before bed.
Keep a cold pack under your pillow at night. During a hot flash, you can turn the pillow over to cool your face.
Exercise regularly.
Use a cold water spray to help lower your skin temperature.
Manage stress as much as possible. Try stress-reducing activities like meditation, deep-breathing exercises, yoga or massage therapy.
Talk to your doctor about medication options if your hot flashes are frequent and intense.

► Fatigue.

Exercise regularly.
Eat a healthy diet.
Get a good night’s sleep.
Use your energy wisely. Plan and prioritize your activities so that you’re active when you have the most energy during the day. Also plan your activities so that you don’t have to rush.
Take breaks during the day.
Manage stress. Stress can contribute to feeling tired, and anything that helps reduce your stress, will, in turn, help reduce fatigue. Deep-breathing exercises, yoga, meditation and massage therapy are commonly used to help reduce stress.

For more information on managing fatigue, including tips on how to sleep well, see the topic ‘Fatigue’ in this section (Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Fatigue).

► Thinning hair.

Use gentle shampoos and conditioners.
Comb or brush your hair gently to avoid breakage.
Let your hair dry naturally after washing, or use the cool setting on the dryer.
Avoid hair straighteners and curling irons.
Wear a hat when you’re out in the sun to protect your head and scalp.
If you colour your hair, try using a natural (vegetable) dye rather than a chemical one.

► Vaginal dryness. A non-hormonal vaginal moisturizer can help with dryness, itching and irritation. If you are unsure about which product to choose, ask your doctor.

► Less interest in sex. If you are experiencing vaginal dryness, a vaginal moisturizer (non-hormonal) or lubricant can help make it easier to have sex. If you are unsure about which product to choose, ask your doctor. For more information about sexual changes related to hormone therapy or menopause, see the topic ‘Changes in sexuality and intimacy’ in this section (Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Changes in sexuality and intimacy).

► Muscle aches and joint pain. Over-the-counter pain killers or a topical anti-inflammatory may help relieve these symptoms. Talk to your doctor or pharmacist to find out about options.

► Nausea and vomiting. This is a less common side effect of some hormone therapies.

Drink lots of liquids through the day (6–8 glasses), especially water.
Try carbonated drinks, like soda water or ginger ale, to settle your stomach.
Trying eating bland foods, like toast, crackers and cereal.
Eat frequent, small meals instead of 3 large meals a day.
Avoid spicy, sweet or greasy foods.
Eat slowly and take time to digest your food.

► Mood changes. This can include irritation, anxiety, sadness, anger or just feeling more emotional than usual.

Get a good night’s sleep.
Eat well.
Exercise regularly. A healthy diet and regular exercise can also improve fatigue and energy levels, which can have a positive impact on mood and reduce anxiety.
Find ways to relax and reduce your stress. This could be a physical activity, a hobby, meditation, getting a massage, reading a book or getting together with friends—anything that helps you relax and gets your mind off cancer.
Face your feelings. Talk to someone you trust about how you feel, or speak to your healthcare team about a referral to a professional, like a psychologist, who can help you cope with your feelings. You could also try writing your thoughts down in a journal—many people find this a very helpful way to express difficult feelings.

► Depression. Talk to your doctor if you feel that you may have symptoms of depression. Depression is a serious problem, not a failure to cope. Your doctor can help you with treatment options, including medication and counselling. You may also want to consider joining a support group—sharing your feelings with others who are going through similar experiences can also be helpful.

For more information on managing moods and depression, see Chapter 3: Emotions, fears and relationships.

For more information on any of the following topics, see the chapter and section indicated.

Healthy diet: Chapter 4: Regaining function / Section 2: Nutrition.
Exercise: Chapter 4: Regaining function / Section 3: Physical activity.
Weight gain: Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Weight gain.

Osteoporosis risk

Women who are taking, or have taken, certain hormone therapy drugs, such as aromatase inhibitors, are at a higher risk of developing osteoporosis. Osteoporosis occurs when the body loses bone mass or doesn’t make enough bone to replace the loss. As a result, bones become weaker and can break more easily. Lowering the levels of the body’s natural hormones—as happens with hormone therapy—can result in a loss of bone mass.

If you are on hormone therapy, or have received it at any point in your treatment, talk to your doctor about your risk of osteoporosis—your doctor may suggest a bone density test to check this risk. If your doctor finds that you have lost bone mass, you may be prescribed a medication to slow down or improve this problem. Also ask about strategies to reduce the risk of osteoporosis. These may include increasing vitamin D and calcium (through diet or supplements) and weight-bearing exercises. Avoiding tobacco and alcohol is also recommended, as these items increase risk.

MEN

What is it?

Hormone therapy is a type of cancer treatment that is used to slow down or stop the growth of cancer cells by blocking hormones (androgens) that stimulate the tumours. It is commonly used to treat prostate cancer. Prostate cancer can be stimulated by the hormone called testosterone—which is a male sex hormone and the most abundant male hormone. Most of testosterone is produced in the testicles—a small amount is also produced by the adrenal gland. Decreasing the level of testosterone in the body can interfere with the growth of prostate cancer. The lack of testosterone will lead to a castration status that is usually reversible several months after the hormone therapy is discontinued. Hormones are chemicals that are made in different parts of the body to help carry out certain actions. For example, testosterone is involved in reproduction.

Hormone therapy for prostate cancer is usually called androgen deprivation therapy (ADT). See also the topic ‘Hormone deprivation symptoms’ in this section (Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Hormone deprivation symptoms).

Hot flashes. Some men also experience anxiety and heart palpitations.
Swelling of the breasts.
Breast tenderness.
Less interest in sex.
Erectile dysfunction (difficulty having or keeping an erection).
Fatigue.
Nausea.
Mood changes.
Depression.
Loss of muscle mass and physical strength.
Weight gain.
Muscle aches and joint pain.
Skin rash.

Why does it happen?

Hormone therapy reduces the normal level of certain hormones in the body by blocking their production. Symptoms result from this change in hormone levels.

How do I manage it?

In many cases, symptoms associated with hormone therapy (the castration status) will improve several months after the treatment ends. Symptoms can also change at different times during your treatment. If symptoms are seriously interfering with your life and self-management strategies do not give you enough relief, talk to your doctor. It might be possible to change your medication to one that causes fewer symptoms for you.

► Hot flashes. This is one of the most common symptoms, affecting up to 75% of men receiving hormone therapy. Some men also experience heart palpitations with this symptom. Strategies to help manage hot flashes include:

Drink lots of water throughout the day. Also, drinking cold water can help reduce your body temperature.
Avoid anything that seems to trigger your hot flashes, such as alcohol, caffeine or spicy foods.
Lower room temperatures or use a fan, particularly in your bedroom.
Wear clothes that let your skin breathe—such as loose-fitting items and those made of natural fabrics like cotton.
Dress in layers so that you can easily remove clothes if you get too warm.
Use cotton sheets.
Exercise regularly.
Use a cold water spray to help lower your skin temperature.
Manage stress as much as possible. Try stress-reducing activities like meditation, deep-breathing exercises, yoga or massage therapy.
Talk to your doctor about medication options if your hot flashes are frequent and intense.

For more detailed information on managing hormone therapy symptoms, see the topic ‘Hormone deprivation symptoms’ in this section (Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Hormone deprivation symptoms).

Osteoporosis risk

Men who have received certain hormone therapies for a relatively long period (usually more than 24 months) are at a higher risk of developing osteoporosis. Osteoporosis occurs when the body loses bone mass or doesn't make enough bone to replace the loss. As a result, bones become weaker and can break more easily. Lowering the levels of the body’s natural hormones—as happens with hormone therapy—can result in a loss of bone mass.

If you are on hormone therapy, or have received it at any point in your treatment, talk to your doctor about your risk of osteoporosis—your doctor may suggest a bone density test to check this risk. Also, ask your doctor about strategies to reduce the risk of osteoporosis. These may include increasing vitamin D and calcium (through diet or supplements) and weight-bearing exercises. Avoiding tobacco and alcohol is also recommended, as these items increase risk. If your doctor finds that you have lost bone mass after long-term hormonal therapy, you may be prescribed a medication to slow down or improve this problem.

Menopause symptoms (women)

What is it?

Some women who undergo chemotherapy, radiation therapy to the pelvis, or hormone therapy, experience menopause symptoms, such as irregular periods, hot flashes, vaginal dryness, weight gain, irritability or other mood changes. These symptoms can be more severe than when menopause occurs naturally with age. In addition, menopause that is brought on by cancer treatment can put women at a higher risk of osteoporosis and heart problems. Talk to your doctor if you are concerned about these side effects.

Why does it happen?

Menopause symptoms normally occur between the ages of 45 and 55 when a woman’s body produces less estrogen and progesterone hormones. Women can experience early menopause when hormone production is reduced due to treatments such as chemotherapy, radiation treatment in the pelvic area, and hormone therapy. For information on hormone therapy symptoms, see Chapter 2: What to expect after treatment / Section 2: What are the possible side effects / Heading: Hormone therapy symptoms.

How do I manage it?

Many of the strategies for managing menopause symptoms brought on by cancer treatment are the same as for managing these symptoms in general:

► Hot flashes and night sweats. Some women also experience heart palpitations with this symptom.

Drink lots of water throughout the day. Also, drinking cold water can help reduce your body temperature.
Avoid anything that seems to trigger your hot flashes, such as alcohol, caffeine or spicy foods.
Lower room temperatures or use a fan, particularly in your bedroom.
Wear clothes that let your skin breathe—such as loose-fitting items and those made of natural fabrics like cotton.
Dress in layers so that you can easily remove clothes if you get too warm.
Use cotton sheets.
Take a cool shower or bath before bed.
Keep a cold pack under your pillow at night. During a hot flash, you can turn the pillow over to cool your face.
Exercise regularly.
Use a cold water spray to help lower your skin temperature.
Manage stress as much as possible. Try stress-reducing activities like meditation, deep-breathing exercises, yoga or massage therapy.
Talk to your doctor about medication options if your hot flashes are frequent and intense.

► Fatigue.

Exercise regularly.
Eat a healthy diet.
Get a good night’s sleep.
Use your energy wisely. Plan and prioritize your activities so that you’re active when you have the most energy during the day. Also plan your activities so that you don’t have to rush.
Take breaks during the day.
Manage stress. Stress can contribute to feeling tired, and anything that helps reduce your stress, will, in turn, help reduce fatigue. Deep-breathing exercises, yoga, meditation and massage therapy are commonly used to help reduce stress.

For more detailed information and strategies for managing fatigue, including tips on how to sleep well, see the topic ‘Fatigue‘ in this section (Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Fatigue).

► Thinning hair.

Use gentle shampoos and conditioners.
Comb or brush your hair gently to avoid breakage.
Let your hair dry naturally after washing, or use the cool setting on the dryer.
Avoid hair straighteners and curling irons.
Wear a hat when you’re out in the sun to protect your head and scalp.
If you colour your hair, try using a natural (vegetable) dye rather than a chemical one.

► Vaginal dryness. A non-hormonal vaginal moisturizer can help with dryness, itching and irritation. If you are unsure about which product to choose, ask your doctor.

► Muscle aches and joint pain. Over-the-counter pain killers or a topical anti-inflammatory may help relieve these symptoms. Talk to your doctor or pharmacist to find out about options.

► Mood changes. This can include irritation, anxiety, sadness, anger or just feeling more emotional in general.

Get a good night’s sleep.
Eat well.
Exercise regularly. A healthy diet and regular exercise can also improve fatigue and energy levels, which can have a positive impact on mood and reduce anxiety.
Find ways to relax and reduce your stress. This could be a physical activity, a hobby, meditation, getting a massage, reading a book or getting together with friends—anything that helps you relax and gets your mind off cancer.
Face your feelings. Talk to someone you trust about how you feel or speak to your healthcare team about a referral to a professional, like a psychologist, who can help you cope with your feelings. You could also try writing your thoughts down in a journal—many people find this a very helpful way to express difficult feelings.

► Depression. Talk to your doctor if you feel that you may have symptoms of depressed. Depression is a serious problem, not a failure to cope. Your doctor can help you with treatment options, including medication and counselling. You may also want to consider joining a support group—sharing your feelings with others who are going through similar experiences can also be a big help.

For more information on managing moods and depression, see Chapter 3: Emotions, fears and relationships.

For more information on any of the following topics, see the chapter and section indicated.

Healthy diet: Chapter 4: Regaining function / Section 2: Nutrition.
Exercise: Chapter 4: Regaining function / Section 3: Physical activity.
Weight gain: Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Weight gain.

In addition:

Plan to meet with your gynecologist to find out about approaches that are best suited to reduce menopause symptoms in someone who has gone through cancer treatment. For example, women who have had certain types of breast cancer cannot take hormone replacement therapy (HRT) to manage menopause symptoms.
Ask your doctor about strategies to reduce the risk of heart problems.
Ask your doctor if it is still necessary for you to use birth control if your period stopped when you started cancer treatment, which often happens in young women. It is also possible that with time your period will start again.

Chemotherapy can bring about sudden menopause or similar symptoms. Don’t hesitate to speak about your symptoms with your oncologist or family doctor.

Osteoporosis risk

Early menopause is a risk factor for osteoporosis. Osteoporosis occurs when the body loses bone mass or doesn’t make enough bone to replace the loss. As a result, bones become weaker and can break more easily. Your doctor may recommend a bone density test to check for osteoporosis. Also, ask your doctor about strategies to reduce the risk of osteoporosis. These may include increasing vitamin D and calcium (through diet or supplements) and weight-bearing exercises. Avoiding tobacco and alcohol is also recommended, as these items increase risk. If your doctor finds that you have lost bone mass, you may be prescribed a medication to slow or improve this problem.

Hormone deprivation symptoms (men)

What is it?

Hormone deprivation symptoms are common for men who get hormone therapy to treat prostate cancer. Hormone therapy for prostate cancer is also called androgen deprivation therapy (ADT). Androgens are hormones that are necessary for male sexual and reproductive function. However, they can also cause prostate cancer cells to grow. ADT is used to slow down or stop the growth of cancer cell. See also ‘Hormone Therapy Symptoms’ in this section for more information (Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Hormone therapy symptoms).

Hormone deprivation symptoms depend on the drug or treatment used to lower the levels of androgens, as well as your individual response to treatment. Not all men will have the same symptoms even if they are receiving the same treatment. Common hormone deprivation symptoms include:

Hot flashes. Approximately 75% of men who receive ADT for prostate cancer experience hot flashes. Hot flashes are sudden feelings of warmth that are mostly felt over the head and upper body. They are often accompanied by skin redness and sweating. Hot flashes can be mild and occur occasionally, or they can be intense and happen many times day. Some men also experience heart palpitations with this symptom. Hot flashes usually stop within 6-8 months after treatment ends.
Swelling of the breasts.
Breast tenderness.
Loss of interest in sex.
Erectile dysfunction (difficulty having or keeping an erection).
Fatigue.
Nausea.
Mood changes (such as anxiety, sadness, frustration or anger.)
Depression.
Loss of muscle mass and physical strength.
Weight gain.
Muscle aches and joint pain.
Skin rash.

Some patients on hormone therapy for prostate cancer have reported problems with concentration and/or memory. If this is a concern for you, speak to someone in your healthcare team. It is possible that the red cells in your blood (hemoglobin) may decrease leading to anemia.

Why does it happen?

ADT works by lowering the levels of androgens in the body, such as testosterone, that can fuel cancer cells. However, changing the normal levels of these hormones can also cause a wide range of symptoms.

How do I manage it?

The symptoms associated with ADT are a normal part of this treatment. In many cases, symptoms will improve when ADT ends. There are also a number of strategies you can try during treatment to manage symptoms. In general, a healthy diet, regular exercise and quality sleep are recommended for dealing with most of the symptoms.

► Hot flashes.

Drink lots of water throughout the day. Also, drinking cold water can help reduce your body temperature.
Avoid anything that seems to trigger your hot flashes, such as alcohol, caffeine or spicy foods.
Lower room temperatures or use a fan, particularly in your bedroom.
Wear clothes that let your skin breathe—such as loose-fitting items and those made of natural fabrics like cotton.
Dress in layers so that you can easily remove clothes if you get too warm.
Use cotton sheets.
Exercise regularly.
Use a cold water spray to help lower your skin temperature.
Manage stress as much as possible. Try stress-reducing activities like meditation, deep-breathing exercises, yoga or massage therapy.
Talk to your doctor about medication options if your hot flashes are frequent and intense.

► Breast tenderness and/or swelling. If you develop severe breast tenderness or swelling, speak to your doctor.

Wear loose-fitting clothes for maximum comfort.
To decrease visibility, wear form-fitting clothing under outer layers.
Consider counselling for advice on how to cope with these changes. You might also find the section on body image issues in Chapter 3 helpful (Chapter 3: Emotions, fears and relations / Section 4: Body image concerns).

► Sexuality: loss of desire and/or erectile dysfunction. Talk to your doctor if these symptoms are affecting your life. For more information, see the topic ‘Changes in sexuality and intimacy’ in this section (Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Changes in sexuality and intimacy).

► Fatigue.

Exercise regularly.
Eat a healthy diet.
Get a good night’s sleep.
Use your energy wisely. Plan and prioritize your activities so that you’re active when you have the most energy during the day. Also plan your activities so that you don’t have to rush.
Take breaks during the day.
Manage stress. Stress can contribute to feeling tired, and anything that helps reduce your stress, will, in turn, help reduce fatigue. Deep-breathing exercises, yoga, meditation and massage therapy are commonly used to help reduce stress.

► Muscle aches and joint pain. Over-the-counter pain killers or a topical anti-inflammatory may help relieve these symptoms. Talk to your doctor or pharmacist to find out about options.

► Mood changes. This can include irritation, anxiety, sadness, anger or just feeling more emotional than usual.

Get a good night’s sleep.
Eat well.
Exercise regularly. A healthy diet and regular exercise can also improve fatigue and energy levels, which can have a positive impact on mood and reduce anxiety.
Find ways to relax and reduce stress. This could be a physical activity, a hobby, meditation, getting a massage, reading a book or getting together with friends—anything that helps you relax and gets your mind off cancer.
Face your feelings. Talk to someone you trust about how you feel, or speak to your healthcare team about a referral to a professional, like a psychologist, who can help you cope with your feelings. You could also try writing your thoughts down in a journal—many people find this a very helpful way to express difficult feelings.

For more information on managing moods and depression, see Chapter 3: Emotions, fears and relationships.

For more information on any of the following topics, see the chapter and section indicated.

Healthy diet: Chapter 4: Regaining function / Section 2: Nutrition.
Exercise: Chapter 4: Regaining function / Section 3: Physical activity.
Weight gain: Chapter 2: What to expect after treatment / Section 2: What are the possible side effects? / Heading: Weight gain.

Osteoporosis risk

Men who have received ADT for a relatively long period (usually more than 24 months) are at a higher risk of developing osteoporosis. Osteoporosis occurs when the body loses bone mass or doesn’t make enough bone to replace the loss. As a result, bones become weaker and can break more easily. Lowering the levels of the body’s natural hormones—as happens with ADT—can result in a loss of bone mass.

If you are on ADT, or have received it at any point in your treatment, talk to your doctor about a bone density test to evaluate your risk of osteoporosis. Also, ask your doctor about strategies to reduce the risk of osteoporosis. These may include increasing vitamin D and calcium (through diet or supplements) and weight-bearing exercises. Avoiding tobacco and alcohol is also recommended, as these items increase risk. If your doctor finds that you have lost bone mass after long-term hormonal therapy, you may be prescribed a medication to slow down or improve this problem.

Changes in sexuality and intimacy

What is it?

Sexuality is a part of everyday life, like breathing, eating and sleeping. It includes the desire to be close and intimate with another person as well as the act of sex itself. Cancer treatment can affect this part of life, and may change sexual desire and sexual function in the short or long term, for both men and women.

Why does it happen?

The desire for sex and the ability to engage in sexual activity can be affected by both physical and emotional changes to the body because of treatment.

Changes to the body or sex organs. Sexual desire can be affected when a person is not feeling good about the changes to their body because of treatment, such as in the case of scars, weight change, a mastectomy, loss of a limb, or an ostomy, for example. Also, some treatments may change the function of the sex organs. Men who have had prostate cancer, or cancer of the penis or testes, may experience erectile dysfunction (unable to have or keep an erection) because of nerve or blood vessel damage. Some women may experience pain during intercourse or a decrease in sensation due to surgery or treatment in the genital area.
Hormone therapy. Hormone therapy, which is commonly used to treat breast and prostate cancer, can reduce sexual desire and make it difficult to engage in sexual relations. For men, this treatment is also called androgen deprivation therapy.
Menopause symptoms. For women, side effects such as vaginal dryness and hot flashes, which can result from early menopause brought on by treatment, can reduce sexual desire, or make it more difficult to engage in sexual relations.
Emotional issues. Some people may also be dealing with challenging emotions after treatment. Feeling stressed, anxious or depressed can affect sex drive.
Medications. Some medications, such as hormone therapy, can have an effect on sexual desire.
Side effects. Treatment side effects, such as fatigue, pain, and incontinence, can get in the way of sexual activity and intimacy.

How do I manage it?

Intimacy is an important part of life. Sharing your feelings with your partner can make a big difference in helping to successfully include any changes related to sexuality into your intimate life. By speaking honestly, you and partner will be more able to talk through your concerns and find new ways to connect physically. Some of the things you can bring up include: sharing your fears or worries, telling your partner about any pain you are experiencing, and talking about trying different ways to be intimate.

If you feel your emotions may be causing the changes to your sexuality, it may also be helpful to speak with a counselor or psychologist. If talking about sex with your partner is difficult, a sex therapist may be able to help you and your partner to speak more openly, and to find solutions. Speak to a trusted member of your healthcare team who should be able to find you the appropriate help you may need. It may also be worth discussing any of the following issues with a professional:

Women. You can ask your doctor about the various options that may be available to you if you are experiencing vaginal dryness and irritation, such as lubricant, creams, and vaginal dilators.
Men. There are many different approaches available for men affected by erectile dysfunction, such as medication, counseling, and assistive devices.
Women and men. Kegel exercises can help with muscle weakness in the genital area (www.canadiancontinence.ca/pdfs/pelvicmuscleexercises.pdf).

For more detailed information on sexuality and cancer, see the publication from the Canadian Cancer Society: www.cancer.ca/~/media/cancer.ca/CW/publications/Sex intimacy and cancer/32061-1-NO.pdf.

Top tips

Key points to keep in mind in general when dealing with side effects and their symptoms:

Track your health after treatment in a daily journal (also called a symptom diary). Having a ‘health history’ written down will help you keep track of symptoms and side effects so that they can be addressed and managed as early as possible. For more information on how to use a symptom diary, see Chapter 2: What to expect after treatment / Section 1: After treatment late and long-term side effects / Heading: How to use a symptom diary.
Consult with your medical team if you feel that a symptom or side effect is preventing you from returning to work. Also check with your insurance company and/or the Régie des Rentes du Québec to see if you are eligible for long term disability. For more information, go to Chapter 5: Back to work.
Understand that side effects can be very different from person to person. They can present themselves right at the end of treatment, or months and even years later (late effects). The length of time they last also varies. For some people they improve quickly, while for others the effects are long term.
Minimize the disruption of long term-effects to daily life by developing habits and routines to manage them as effectively as possible.

Section 3

Managing an ostomy after colorectal surgery

If you have experienced certain colon and rectal cancers requiring the removal of part of your digestive tract, you may have woken up from surgery with a significant change to your body. The surgeon may have had to create an opening in your stomach for waste to leave your body. This opening is known as an ostomy (also called a stoma).

There are different types of ostomies, but they all have the same basic function— to reroute your digestive system so that you eliminate waste from your body from the ostomy instead of your anus. There are two main types of ostomies:

A colostomy is usually on the lower left side of your stomach, a few inches from your belly button. This type is usually used when the lower part of the colon (the rectum and/or the anus) is removed. The waste will likely be similar to the formed stools (poo) that you had before the surgery.
An ileostomy is generally on the right side, and slightly higher up on the stomach. This type is usually used when the surgeon has to remove a section of the colon further up in the digestive tract. An ileostomy will usually involve looser, watery stools, and they will occur more often.

Making the adjustment

Becoming an ostomate (someone who has an ostomy) involves a major adjustment to your life. It not only affects the functioning of your digestive system and how you have to take care of this—it can also impact your lifestyle and how you feel about your body. This new reality can be frightening and depressing, and a lot to handle on top of your cancer diagnosis. Some patients may experience symptoms of depression, and even post-traumatic stress disorder (PTSD) after their surgery. It is important to express your concerns with your doctors, nurses, and support staff, including mental health experts. You may also find it useful to talk to people who have gone through the same experience and find out how they coped and adjusted (see Chapter 2: What to expect after treatment / Section 3: Managing an ostomy after colorectal surgery / Heading: The ostomate community).

The first few nights in the hospital after my surgery were extremely difficult. I remember having a nightmare that I was literally unravelling from the inside. The nurses were so helpful—they were always there, and got me a consultation with a psychiatrist to support me as I adjusted to this new reality. I have continued to work with a therapist to help me through the transition.

You will have discussed with your doctor whether your ostomy will be temporary or permanent. Some ostomies will eventually be reversed once the colon heals. While both situations present challenges, the most important thing to remember is that despite the time and effort a new ostomy will require, this amazing surgical technique is likely to have saved your life. It can help you to remember that fact in the rougher days ahead.

It may also be helpful to know that, unless you tell someone, it is unlikely anyone will notice your ostomy. Ostomy pouches are flat and difficult to see under clothing, including bathing suits. In most cases, you will be able to eat whatever you want, and pursue the same activities—including sports—that you enjoyed before surgery. People with ostomies also have active sex lives. Try to be patient with yourself and the process. Give yourself time to become familiar with the adjustments that come with having an ostomy and to develop a level of comfort with this new part of your life.

I recall when I first spoke to my surgeon about the need for a colostomy, I was unsure and frightened. I felt alone. Then I got a call from my father, who told me that my uncle had a colostomy for 30 years, as did one of his close friends. Not only did I start to feel more reassured, but I began to see I was part of a community, and the ostomy did not have to define the rest of my life. Heck, if I didn’t even know my uncle was an ostomate, I could decide if I wanted to share it with people, or not. Slowly, I felt more in control of the situation.

Emotional impact

As with any radical change to our bodies, we must also come to terms with the feelings and emotions that accompany our new reality. Feelings of grief and mourning are very common, and they can be powerful and troubling—but they are also an important part of the healing process. It is important not to push those feelings aside, but to acknowledge and work through them. It is also important to embrace the support of family, friends, mental health professionals, and others who have gone through the same experience. Your healthcare team, including your WOC nurse, can point you toward resources like psychologists and social workers, to help you process these strong emotions. Grieving the life you led before your cancer is a natural process for many, and an ostomy can be a constant reminder of the impact of your disease. It can also be a symbol of your strength and resilience as you move forward in your recovery.

There are many things you can do to help identify and manage all these emotions. Journaling—the practice of writing down your thoughts and feelings—can be very helpful. Some find activities such as painting, meditation, listening to music, reading and cooking can help them work through their thoughts and emotions, and practice being in the moment. Others find comfort in more physical activities, like yoga, tai-chi, exercise and even simply walking in nature. The key is to find something that helps you to focus on your present, and not to become caught up in worries about the future, or regrets about the past. These activities and strategies, and many others you will discover, can help remind you that you are here in the world now, with all the emotions that go along with being alive.

With so much to deal with in terms of my surgery, drugs and tubes and wounds and all that, it almost seemed as if my ostomy was the last thing I wanted to deal with. I didn’t want anyone to see it, and I think that was partly about me not really wanting to acknowledge it was even there! But as I worked with my nurses to change my pouch, to understand the function, I began to take back some control. Still, I needed, and continue to need, a lot of support to work through this.

Our body image—the ways we imagine our own bodies—is fundamental to our emotional state. Remember that it is your choice when and with whom you will choose to share the experience of having an ostomy. Your relationship with your body can be complex. You will most likely have not so good days when you may want to hide away, or just take a break. But you will also have good days when you feel strong and beautiful, because you are. We all have the opportunity to focus on the beautiful side of things. Some days will be brighter—but not all days will feel this way. Try to bring appreciation and gratitude into your life as much as you can, and acceptance will gradually come. This is what being alive is all about.

Managing your ostomy

Living life with an ostomy involves understanding the functions, products, and finances involved. With an ostomy, there are no muscles to control when you have to ‘go’—which means that the waste needs somewhere to go even if you’re not near a bathroom. There are two basic systems for handling this, involving one or two pieces. You will discover what works best for you, and you should feel comfortable trying out all kinds of different solutions and products before making a decision.

The one-piece system is an ostomy pouch (or bag) that attaches directly to your body.
The two-piece system separates the ‘wafer’, ‘baseplate’, or ‘skin barrier’—which sticks to your body—and the ostomy pouch, which attaches to the baseplate and can be replaced separately.

With an ileostomy, you will generally need to change your wafer every 3–5 days. With a colostomy you will usually be able to use a wafer that will last 5–7 days. Either way, you will want to empty or change your pouch when it is about 1/3 full to avoid leaks. When you feel that it starts to get a little heavy or uncomfortable, it’s time for a change!

Your healthcare team and/or WOC (wound, ostomy and continence) nurse will instruct you about what you need to know in more detail about caring for your ostomy—including emptying and replacing the pouch, and cleaning and protecting the skin around it. It may take some practice and time to become comfortable with the procedures and to find what works best for you. You may find it helpful to reach out to the companies that provide ostomy supplies, in order to get sample products to try out and see what makes you feel most comfortable. For more information about ostomy supplies, see Chapter 2: What to expect after treatment / Section 3: managing an ostomy after colorectal surgery / Heading: Ostomy supplies.

Passing gas

Passing gas with an ostomy might be a little noisier than you were used to before your surgery—however, with a well-fitted pouch, there won’t be any odour as the pouch contains the gas. Some pouches are also fitted with a filter that will allow gas to pass but eliminate the odour. Just like before your ostomy, you can usually feel when you are about to pass gas. Placing your hand discretely over your ostomy will generally muffle any sounds.

If you find that you are passing a lot of gas and your pouch does not have a filter, you may notice your pouch getting bigger, almost like a balloon. The simple solution is to head to your nearest bathroom and ‘burp’ your pouch by detaching it from the wafer to allow the gas to escape. This works only with a two-piece system—a one-piece system will usually require a filter.

Pancaking

Another common concern with colostomies and ileostomies is what ostomates call ‘pancaking’. This term is used to describe what happens when stool does not fall to the bottom of the pouch, but instead gets stuck around the ostomy. This can cause stool to get behind the wafer or baseplate, and cause skin irritation or a leak. There are lots of tips and tricks available to avoid this issue, but the most common is to use a lubricating and deodorizing liquid in your pouch to help the stool slide down.

Possible complications

There are a number of issues that can affect the functioning of your ostomy. The two most common are blockages and hernias.

A blockage can occur as a result of food becoming stuck in the intestinal tract. Blockages can be scary, but they are generally quite easy to deal with, even at home. Symptoms of a blockage might include:

Pain in your stomach or abdomen.
No output, or output that is very watery and loose.
Nausea or vomiting.
A swollen, hard belly.

Many blockages can be eased by trying the following:

Stop eating solid food until the blockage eases.
Drink plenty of fluids, especially warm liquids like tea that can help move things along.
Bring your knees up to your chest and roll from side to side.

Contact your healthcare team if these strategies don’t improve the blockage or if you are at all concerned.

A parastomal hernia is another common occurrence with ostomies. A hernia means a portion of your intestines protrudes (sticks out) from your abdomen, creating a lump near or behind the ostomy. The ostomy weakens the abdominal wall, which increases the risk for a hernia. Hernias are not usually dangerous, but they can cause unattractive bulges. They can also make it difficult to fit your wafer or baseplate to your stomach, which can cause leaks. If a hernia is causing you pain or discomfort, contact your doctor—it can often be taken care of quickly.

Ostomy supplies

There are three major providers of ostomy products in Canada:

Hollister: www.hollister.ca/en-ca/products/ostomy-care-products
Convatec: www.convatec.ca/contact-us
Coloplast: www.coloplast.ca

Each of these companies provides new ostomates with samples of different products. They also have WOC nurses on staff to help support you. Some of the retailers that supply ostomy products will also provide support and samples. In many cases, companies will ship supplies to your door, making it easier if you feel uncomfortable shopping for these items in person. Speak with your healthcare team for recommendations.

Financial support

The cost of ostomy care products can be a financial concern for some people. Public health plans provide support, as well as private insurers. Contact your insurance company early in the process to find out what is covered under your plan. The website VeganOstomy provides a list of government grants and support available in various locations across Canada: www.veganostomy.ca/ostomy-supply-costs-canada.

The ostomate community

Like many cancer patients, ostomates have come together to form a supportive and active community, both with regular meet-ups and events and online. One of the great benefits of building a strong relationship with the ostomate community, is the advice and support you will receive as you begin to navigate the world of products to manage your new ostomy.

Here are just a few of the many online communities for ostomates:

Ostomy Canada Society: www.ostomycanada.ca
United Ostomy Associations of America: www.ostomy.org
Ostomy Connection: ostomyconnection.com
Inspire Ostomy Support Group: www.inspire.com/groups/ostomy
Vegan Ostomy: www.veganostomy.ca
Newbie Ostomy: newbieostomy.com

Section 4

Coping with cognitive changes

The terms ‘brain fog’ and ‘chemo brain’—for those who have had chemotherapy—describe symptoms of cognitive changes that can occur with cancer treatment. ‘Cognitive’ refers to mental activities such as thinking, understanding, organization and memory. The exact reasons for these changes are not clear. Experts are still studying what causes cognitive changes with cancer treatment. Also, some people who have undergone cancer treatment are not noticeably affected by cognitive changes at all.

Cognitive changes and their symptoms

Cognitive changes and their symptoms can be experienced in many different ways. In general, though, people who have experienced cognitive changes with cancer treatment describe it basically as thinking more slowly and less effectively. They find that they cannot study, read, or watch an entire movie as they used to without getting tired. Difficulties sleeping are also common. These changes can affect life on a daily basis, at home and at work, by interfering with the ability to do or complete everyday tasks and activities. However, most of the time cognitive changes experienced because of treatment are not permanent.

If you feel you are experiencing cognitive changes, notify your doctor as soon as possible. Your doctor can help you find solutions to manage these symptoms. Write down anything that seems different or unusual to you in a daily journal, even if it seems like you’ve made a simple mistake. This will help you when you are discussing the situation with your doctor. Depending on your doctor’s evaluation of your symptoms, you may be referred to a cognitive specialist.

Cognitive changes can appear during cancer treatment, suddenly right after treatment, or gradually after treatment as a late side effect.

Sudden cognitive changes

Sudden cognitive changes usually last only for a short time for most people. Symptoms include:

Difficulty concentrating and understanding things.
Changes in sleep.
Feeling agitated.
Confusion.
Memory loss.

Gradual cognitive changes

Gradual cognitive changes develop slowly over time—sometimes not appearing until after treatment—and can last longer (long-term side effect). Gradual cognitive changes are not always reversible, but there are techniques and strategies that can be used to reduce their effect on function and daily life. Symptoms of gradual cognitive changes include:

Memory problems.
Difficulty with multi-tasking.
Difficulty with problem solving.
Difficulty making decisions.
Personality changes.
Trouble with organization.
Problems with following directions.
Confusion.

Managing cognitive changes

If you are dealing with cognitive changes, it is best to try to be as relaxed as possible—stress can make the symptoms worse. It may also help to talk to people you trust about what you are experiencing, such as friends, family or a professional. Although cognitive issues can be very challenging, try to stay optimistic. In general, these kinds of changes are temporary and can be managed effectively.

There are digital tools (smartphone apps) for lists, notes, diaries, etc., which can help you keep track of things if you are having memory issues or difficulty organizing the details of everyday life. Some examples include:

Evernote (evernote.com).
Any.Do (www.any.do).
Remember the milk (www.rememberthemilk.com).
Monday.com (monday.com).
Google Tasks (apps.apple.com/us/app/google-tasks-get-things-done/id1353634006).

See the ‘top tips’ below for more coping techniques.

The loss of concentration caused by chemotherapy treatment is normal and reversible, but can be frustrating for patients. Give yourself time, and trust that you will get better. If needed, your doctor or pivot nurse can refer you to a post-chemotherapy rehabilitation clinic.

Top tips

Exercise your brain. Cognitive exercises are recommended to help improve cognitive ability. These include crosswords, puzzles, painting, playing an instrument or learning a new hobby. See www.aarp.org/health/brain-health/brain_games.html for more examples.
Prepare your day in advance and organize what you need to do for that particular day.
Maintain a regular daily routine. Don’t try to fit too many things into your day and avoid multi-tasking.
Write everything down. Work with lists and reminders in your agenda or smartphone. Highlight important information and emergency contacts. Put sticky notes in your home or office in strategic places where you will see them—to remind you to take out the trash, go grocery shopping, email an important document, etc.
Try new methods to memorise things—such as singing the thing you need to remember or repeating it several times.
Consult an occupational therapist. For people facing ‘brain fog’ at work, an occupational therapist, or a rehabilitation consultant, can help guide you through your return to work and help you maximise your skills. Ask your doctor if a referral is possible, and find out if your insurance provider offers coverage for this kind of therapy. For more information on available services, see Chapter 2: What to expect after treatment / Section 7: Programs to help you move forward.
Find out about work options. Talk to your employer about the best ways for you to work, including the possibility of working from home or part-time. Plan to return to work gradually, one step at a time. For more information, refer to Chapter 5: Back to work.
Consider cognitive training. For people dealing with long-term cognitive changes, it may be helpful to get rehabilitation and cognitive training from a professional.

Section 5

Managing side effects with healthy living

Nutrition, physical activity, sleep and emotional balance are key areas to focus on to help effectively manage side effects.

Nutrition

Nutrition is central to your recovery. Feeding and hydrating yourself well results in better physical and mental health. It can also help minimize side effects, such as fatigue, anemia, and digestive problems. Good nutrition includes eating a healthy balance of fruits, vegetables, proteins and whole grains. If you have specific needs or require a special diet, talk to your doctor, a nutritionist or a dietician. For more information about nutrition, see Chapter 4: Regaining function / Section 2: Nutrition.

Physical activity

Physical activity produces chemicals in the body that stimulate the brain and promote wellbeing. By being active, you can help improve many symptoms such as pain, fatigue, anxiety and depression. In certain cases, physical activity may also help you prevent them. Physical activity can include anything from walking and yoga to aerobics and jogging—whatever you feel capable of doing. Even mild physical activities like walking may help reduce stress and anxiety caused by side effects. Yoga uses a combination of breathing exercises, meditation, and poses to stretch and flex various muscle groups. Researchers have found that yoga may relieve chronic pain, headaches, and insomnia. Before you start an exercise program or try a new activity, you should check with your healthcare team to make sure it’s appropriate for your situation. For more information about nutrition, see Chapter 4: Regaining function / Section 4: Physical activity.

Mental activity

If you are dealing with cognitive side effects—difficulties with concentration, memory, organization, etc.—it is important to exercise your mind as well as your body. Find out more about cognitive exercises in Chapter 2: What to expect after treatment / Section 4: Coping with cognitive changes / Heading: Top tips.

Sleep

Sleeping well, and for as long as you need to feel rested, will help improve your ability to focus and concentrate during the day. For more information on sleeping well, see Chapter 2: What to expect after treatment / Section 2: What are the possible side effects / Heading: Fatigue / Sub-heading: How do I manage it?

Emotional balance

It is important to pay attention to your emotional wellbeing when you look at how to best manage your side effects and symptoms. During and after treatment, you may find that your emotions change more—and more often—than usual. It is not uncommon to feel relief about finishing cancer treatment and anger about having to go through cancer treatment all in the same day. Depending on your experience, your emotions may be more positive (grateful to be alive) or they may be mostly negative (anxious for the future)—it’s all normal. Talking about your emotions may be an effective way to develop a balance for all the feelings you may be experiencing, and to allow you to express and acknowledge them. This can be an important step in understanding all of these feelings, and in giving you a chance to work on them, if needed. You may also benefit from support groups at this point in your life.

For more information about feelings and emotions after treatment and support resources, see Chapter 3: Emotions, fears, and relationships.

Communication

Communication can also be a significant part of healthy living and managing side effects. It is not only important to communicate effectively with your family and friends about what you are going through physically and emotionally, but also with your doctor and healthcare team. By letting them know what is bothering you, and describing your issues as accurately as possible, they will be able to provide you with the best possible support.

How to speak effectively with your healthcare team about side effects

Your treating doctor is the best person to advise you about the possible symptoms and effects of your particular treatment. ‘Treating doctor’ refers to the doctor who is most responsible for your care at this time. This might be your oncologist, or it could be your family doctor if you’ve returned to regular care. They are also able to evaluate the effects of your treatment in terms of your specific health situation. Prepare yourself in advance to speak to your doctor about your side effects and how to manage them, by thinking about the details of what you have been experiencing. The goal is to be well prepared so that you can meet the challenges of potential side effects by understanding the causes and planning how to manage them.

The following are some suggestions about how to communicate effectively with your doctor:

Use a daily journal to keep track of any effects and symptoms you notice. Note in your journal how these symptoms are affecting your life. Be as detailed as possible. You can then use this information to summarize clearly what you have been experiencing for your doctor. For more information on how to use a symptom diary, see Chapter 2: What to expect after treatment / Section 1: After treatment late and long-term side effects / Heading: How to use a symptom diary.
Bring your journal with you when you see your doctor. To help you describe your symptoms, ask yourself the following three questions, according to your situation. Write down your answers.
1. Are my _____________ problems getting in the way of enjoying my life? If yes, how?
2. How bad are these problems?
3. Which symptoms are the most stressful?

To also help with your discussion with your doctor about side effects:

Ask about other signs and symptoms to watch out for and how to manage them.
Ask about specialist(s) that could be recommended to treat the side effect(s), and if a referral is possible.
If you have returning to regular care with your family doctor, inform them about your treatments. Bring a list of all the treatments and medications you have received so far to your next appointment.

Section 6

Complementary therapies

Complementary therapies are treatments that are used in addition to conventional medical treatment. These types of therapies usually use a holistic approach, which means they consider the whole person in evaluation and treatment, not only a symptom or the part of the body that is affected. The goal of complementary therapies is to help improve the individual’s overall physical and emotional health. Talk to someone in your healthcare team if you are interested in using a complementary therapy to help manage your side effects, to make sure it is appropriate for you.

Research has found that complementary therapies may help relieve some side effects and symptoms of cancer treatment. Some common examples of these therapies include:

Acupuncture. Acupuncture uses very tiny needles and/or pressure (acupressure) to stimulate points on the body. This is thought to release chemicals in the brain, such as beta-endorphin and serotonin, that may help relieve pain. Acupuncture may also help reduce chemotherapy-induced nausea and vomiting, as well as help relieve hot flashes, dry mouth, headaches, fatigue, sleep problems, appetite loss, diarrhea, constipation, weight changes, anxiety, swallowing difficulties and lymphedema.
Massage. Massage may be very helpful to reduce pain, tension, stress, anxiety, depression, sleep problems and fatigue.
Meditation. Meditation is a way of focussing attention to calm the mind and relax the body. It may help decrease chronic pain, and has been seen to improve mood and other aspects relating to a person’s quality of life. There are many different types of meditation—it can be done alone or guided by someone else in a group setting.
Music therapy. In music therapy, a therapist who is familiar with the emotional and physical concerns of the patient uses music to help the patient develop a sense of general wellbeing and to help move through recovery.

For more information about complementary therapies, see the Canadian Cancer Society at www.cancer.ca/en/cancer-information/diagnosis-and-treatment/complementary-therapies/?region=qc. For information on available resources in the community, see Section 7 below.

Section 7

Programs to help you move forward

Programs and support groups can be very effective in helping people understand and manage side effects after cancer treatment. It is also important to remember that it may be easier to maintain an emotional balance during your recovery if you are supported by professionals and people who have had similar experiences, as well as by family and friends. Below is a sample of the kinds of resources available in general and in some provinces. Use it as a guide to find more information or information in your area.

For lymphedema support services, see Chapter 2: What to expect after treatment / Section 2: What are the possible side effects / Heading: Lymphedema.

For more information on programs, services, support groups, psychosocial support and/or educational information, also check out the last section of Chapters 3, 4, 6 and 7.

Community services

Canadian Cancer Society (CCS): www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/?region=qc. Includes a detailed list of possible side effects and symptoms, how to manage them, and who to contact if you need help. The CCS can also help you find access to free or private specialists to help you with symptom management, as well as accredited complementary therapies: www.cancer.ca/en/cancer-information/diagnosis-and-treatment/complementary-therapies/?region=qc. You can also use the online Community Services Locator: csl.cancer.ca/en.

Quebec/Montreal

Carrefour Multisports Programme Activie: www.lavalensante.com/soins-et-services/liste-des-soins-et-services/cancer/ressources-daide-et-dinformation/groupes-de-soutien. Partnership between Hôpital de la Cité-de-la-Santé in Laval and Carrefour Multisports. This rehabilitation program, directed by a kinesiologist, helps people regain function after cancer treatment. The program is for Hôpital Cité-de-la-Santé patients, but if you reside in Laval or north of the island of Montreal you may be able to join if there is space available.
Cedars Cansupport (MUHC): www.cansupport.ca. Provides a wide variety of support programs at no charge, such as educational and practical services, support groups and complementary therapies. Services and workshops include massage therapy, meditation, yoga, art and drama therapy, reiki, as well as the ‘Look Good Feel Better’ program and the ‘Brain Fog’ program.
Quebec Cancer Foundation: www.fqc.qc.ca. Offers physiotherapy and rehabilitation services for post-treatment patients, up to one year.
Fondation Virage (Hôpital Notre Dame): viragecancer.org/services/activites/kinesiologie. Offers a personalized exercise program to work with people who have completed treatment. The program includes assessment and individual follow-up with a physiotherapist and group classes.
Happy Tree Yoga: www.happytreeyoga.com. The gentle yoga classes are complementary for people undergoing, or recovering from, cancer treatment.
Hope & Cope Wellness Centre–Lou’s House (Jewish General Hospital): www.hopeandcope.ca/wellness. Offers different programs and support groups that range from practical services, complementary therapies, exercises and rehabilitation to peer mentoring.
- Rehabilitation–ActivOnco program. Provides a physiotherapist team and exercise physiologists for people living with cancer, or up to one year after diagnosis. Rehabilitation can help to cope with some side effects as fatigue, nausea, swelling, pain and physical changes.
- Nutrition: The Wellness Centre offers an 8-week series on weight loss called ‘Eating well as part of a healthy lifestyle‘, which covers nutrition and exercise for people who have finished their cancer treatment.
- Complementary therapies: Stress reduction courses (meditation, relaxation, exploration) and creative arts (choir, DIY, painting, etc.) are provided as a way to express feelings and emotions.
West Island Cancer Centre. wicwc.com. Offers free services up to one year after cancer treatment, including private counseling, reflexology, healing touch and acupressure.

Ontario/Toronto

Wellspring: wellspring.ca/online-programs. A community-based cancer support network, with locations across Canada. Post-treatment resources include support groups and meditation sessions focused on healing mind and body. (Also available in Calgary, Edmonton, Nova Scotia, and PEI.)
Toronto Physiotherapy: torontophysiotherapy.ca/services/cancer-rehabilitation. Offers cancer-specific rehabilitation services for common side-effects of cancer treatments. Can accept certain insurances and qualifies as a medical expense on tax returns.
De Souza Institute, Cancer Chat Canada: cancerchat.desouzainstitute.com/calendar. Organizes support group sessions on specific topics, including post-treatment concerns.
Princess Margaret Cancer Centre: www.uhn.ca/PrincessMargaret/PatientsFamilies/SpecializedProgramServices/PatientEducationClasses. Provides workshops on different topics relevant to the cancer treatment process, and include classes on managing side-effects and nutrition and lifestyle.
Heart Place Cancer Support Centre: hearthplace.org/adult-programs. Offers programmes for both adults and children in cancer care and having finished treatment. In addition to one-on-one support, they offer classes and activities ranging from emotional wellness to lifestyle wellness (exercise, art therapy).
Sunnybrooke Health Sciences Centre: sunnybrook.ca/content/?page=occ-patient-family-support. The ‘Patient and Family Support Program’ offers services related to nutrition and exercise, financial help and rehabilitation. Some services require a referral while others are available to all.

Alberta/Calgary

Wellspring: wellspring.ca/online-programs. A community-based cancer support network, with locations across Canada. Post-treatment resources include support groups and meditation sessions focused on healing mind and body. (Also available in Toronto, Edmonton, Nova Scotia, and PEI.)
Alberta Health Services, After Treatment: www.albertahealthservices.ca/cancer/Page16324.aspx. Lists resources available to those seeking information and guidance on life after cancer treatment. Available to all, not specific to Albertans.
Alberta Health Services, Supportive Care: www.albertahealthservices.ca/cancer/Page16325.aspx. Describes services available to help with post-cancer treatment issues, physical and psychological. Note: ‘Rehabilitation Oncology’ requires a referral, but ‘Psychosocial Oncology’ and ‘Other Wellness Supports’ is open to everyone.
MyHealth Alberta: Living Your Best Life Video Series: myhealth.alberta.ca/Alberta/Pages/living-your-best-life.aspx. A collection of videos from medical professionals and cancer survivors on the topic of ‘Living Well’ after cancer. What it means, how to achieve it, and what the latest cancer research data is saying about it. Includes how to cope with certain long-term side-effects of cancer treatment.
MyHealth Alberta: myhealth.alberta.ca/health/pages/conditions.aspx?Hwid=tv4450 Specifically about body image issues after cancer treatment. Discusses common topics and provides information on how to join a support group.

British Columbia/Vancouver

Inspire Health: www.inspirehealth.ca/programs/clinical-services. For patients finished (or nearing the end of) treatment. Provides consultations with health professionals in different fields, including nutrition, exercise, clinical and medical. Also provides acupuncture sessions for side effects from chemotherapy.
BC Cancer—Support Programs: www.bccancer.bc.ca/our-services/services/support-programs. Programs include a variety of topics and activities, such as support circles and music therapy sessions, as well as a Chinese Mindfulness Program (available in Cantonese and Mandarin).
BC Cancer—Supportive Care: www.bccancer.bc.ca/our-services/services/supportive-care#Services. Services provided by professionals to treat specific side-effects of cancer treatments and help assist with physical and psychological rehabilitation. Topics include nutrition, spiritual health, and family counselling. Some services require referrals, such as physiotherapy, psychiatry, and speech language pathology.

Private services

Quebec/Montreal

McGill Comprehensive Health Improvement Program (CHIP): www.chiprehab.com/english/main.html. Health professionals from the McGill University teaching hospitals work with recovering patients to help them improve long-term health and quality of life through exercise, nutrition and psychosocial programs. Check with your insurance company about coverage or contact the program office to find out about financial assistance.
Cliniques d’Évaluation et de Réadaptation—post-cancer treatment program : physiotherapieuniverselle.com/services/vitalite-post-cancer. Private clinics dedicated to interdisciplinary occupational rehabilitation. They offer ‘Vitality’, a post-cancer treatment program that includes: physical and cognitive rehabilitation, psychological counseling, occupational therapy for return to work, personalised exercise programs, and workshops on various themes of interest to people in recovery. The professionals at the clinic work in communication with treating doctors, insurance companies, and employers.
Montreal Therapy Centre: www.montrealtherapy.com. Provides individual, couples and family counseling. Sliding fee scale rates determined by gross salary income.
The Argyle Institute: www.argyleinstitute.org. Provides individual, couples and family counseling. Rates are determined by household income.

Ontario/Toronto

Toronto Central Regional Cancer Care Program in Association with Cancer Care Ontario: www.trcp.ca/en/supportive-palliative/Documents/trcpexerciseservices_toronto.pdf. A list of exercise and rehabilitation services and programs.
Toronto Physiotherapy: torontophysiotherapy.ca/services/cancer-rehabilitation. Provides tools and techniques to manage short-term and long-term effects of surgery, radiation and chemotherapy.
CBT Associates: www.cbtassociates.com/coping-with-cancer. Provides psychosocial support for mental health issues and concerns for those coping with cancer.
Toronto Psychology Clinic: torontopsychology.com. Provides individual or couples counselling, with varying rates.
Main St. Psychological Centre: www.mspc.ca/our-services. This clinic offers individual or family counselling, with rates varying according to the qualifications of each therapist.

Alberta/Calgary

Leading Edge Physiotherapy: leadingedgephysio.com/services/cancer-rehabilitation. Provides a wide range of services to help with cancer rehabilitation, including improving strength and mobility, return to work, return to sport, fatigue management and lymphedema therapy.
Refresh Counselling: refreshcounselling.ca. Offers individual, family, and youth counselling. Sliding scale fees are available.
Alberta Counselling: albertacounselling.ca. Offers individual, family, and youth counselling.

British Columbia/Vancouver

UBC Physical Therapy and Research Clinic: physioclinic.med.ubc.ca. Offers services in cancer rehabilitation.
Counselling BC: counsellingbc.com/counsellors/practice/cancer-care-and-support-106. Provides a list of psychologists specializing in support for cancer patients. Fees vary according to the psychologist.
Vancouver Psychology Centre: www.vancouverpsychologycentre.com. Offers individual, family, and youth counselling. Fees vary according to specialties.

By referral

It is also helpful to speak to your doctor about symptom management, and possible referrals to specialists who may be able to help you. Ask if visits to these specialists are covered under your provincial healthcare plan, and verify what services are covered under your private insurance plan. The following is a sample of clinics and programs available in some provinces to post-treatment patients by referral from their oncologist. Use it as a guide to look for more information or for services available in your area.

Quebec/Montreal

The McGill Cancer Nutrition – Rehabilitation Program: www.mcgill.ca/oncology/divisions-programs/cancer-nutrition-rehabilitation. Available at the Jewish General Hospital and the MUHC. Provides nutritional counseling and physical rehabilitation to help manage common symptoms associated with cancer.
The Cancer Rehabilitation and Cachexia Clinic at the MUHC: www.muhc.ca/cancer/page/cancer-rehabilitation-and-cachexia-clinic. Provides rehabilitation, nutritional counseling, and psychosocial services.

Ontario/Toronto

UHN Toronto Rehabilitation Institute - HEALTh Program: www.uhn.ca/TorontoRehab/Clinics/HEALTh?utmsource=https://www.uhn.ca/torontorehab/patientsfamilies/clinicstests/health&utmmedium=404&utmcampaign=redirects. For women being treated for, or recovering from, breast cancer. Program includes support through kinesiologists, a dietician and a social worker, as well exercise programs and education.

Alberta/Calgary

Alberta Health Services—Rehabilitation Oncology: www.albertahealthservices.ca/cancer/Page17173.aspx. Provides help and information for cancer rehabilitation from occupational therapists, psychiatrists, physiotherapists and speech language pathologists.

British Columbia/Vancouver

BC Cancer—Rehabilitation Supportive Care: www.bccancer.bc.ca/our-services/services/supportive-care#Services. Services provided by professionals to treat specific side-effects of cancer treatments and help assist with physical or psychological rehabilitation. Topics include nutrition, spiritual health, and family counselling. Some services require referrals, such as physiotherapy, psychiatry, and speech language pathology.

Additional information about side effects after cancer treatment

Canadian Cancer Society: www.cancer.ca.
Life after cancer: www.cancer.ca/en/cancer-information/cancer-journey/life-after-cancer/?region=qc.
Late and long-term effects of treatment: www.cancer.ca/en/cancer-information/diagnosis-and-treatment/treatment/?region=qc.
Detailed information of symptoms, their causes and management: www.cancer.ca/en/cancer-information/diagnosis-and-treatment/managing-side-effects/?region=qc.
Treatment of pain: www.cancer.ca/en/cancer-information/diagnosis-and-treatment/pain/?region=qc.
Complementary therapies: www.cancer.ca/en/cancer-information/diagnosis-and-treatment/complementary-therapies/?region=qc.

Quebec/Montreal

Quebec Cancer Foundation: fqc.qc.ca/en/information/after-cancer/medical-follow-up.

Ontario/Toronto

UNH Princess Margaret Cancer Centre - Getting Back on Track: www.uhn.ca/PrincessMargaret/PatientsFamilies/Specialized_Program_Services/Getting_Back_On_Track?utm_source=health_info_landing_page&utm_campaign=inbound.
UNH Princess Margaret Cancer Centre - Patient Education: www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Cancer_Related_Brain_Fog.pdf.

Alberta/Calgary

MyHealth Alberta: Living Your Best Life Video Series: myhealth.alberta.ca/Alberta/Pages/living-your-best-life.aspx. A collection of videos from medical professionals and cancer survivors on the about living well after cancer. Includes how to cope with certain long-term side-effects of cancer treatment.

British Columbia/Vancouver

BC Cancer: www.bccancer.bc.ca/health-info/coping-with-cancer/life-after-cancer. Includes a section on experiences after treatment, including physical and emotional side-effects, and provides links to additional information.