Managing side effects

Getting enough sleep is important for maintaining your energy levels, managing fatigue and improving mood. Difficulty sleeping is common among people who have had cancer. It may be caused by pain, breathlessness, anxiety or depression. Some medicines and hormonal changes can make sleep difficult. If you already had sleep problems before cancer treatment, these can become worse.

Ways to improve sleep

• Get up at the same time each morning and avoid daytime naps.
• Exercise regularly but not right before bed.
• If you smoke, quit – smoking can affect your ability to fall and stay asleep.
• Limit or avoid drinking alcohol and caffeine. Avoid spicy food if it gives you indigestion.
• Set up a pre-sleep routine to help you relax. Try to go to bed around the same time most evenings to establish a stable sleep/wake routine.
• Put screens (mobile phone, tablet, computer or TV) away an hour before bedtime and avoid using them in the bedroom.
• Keep the bedroom dark, quiet and a comfortable temperature.
•  If medicines interfere with your sleep, discuss alternatives with your doctor.
• Speak with your GP about whether counselling or cognitive behaviour therapy (CBT) would help.

Listen to our ‘Sleep and Cancer’ podcast episode

Now that treatment is over, you may think you should be full of energy, but this often isn’t the case. Feeling very tired and lacking energy for daily activities (fatigue) is a common side effect of cancer and its treatment. You may have muscle aches and pains, get worn out quickly, have trouble concentrating or find it difficult to do daily activities. Cancer-related fatigue is different from tiredness, as it doesn’t always go away with rest or sleep.

Many people say that fatigue has a big impact on their quality of life in the first year after treatment. You may worry fatigue is a sign that the cancer has come back or that it never really went away. This is usually not true.

Most people find that their energy returns 6–12 months after finishing treatment. However, some people lack energy for years after treatment and their energy levels may never fully recover.

Causes of fatigue

Many cancer survivors don’t tell their doctor about fatigue because they think that nothing can be done about it. However, your treatment team or GP may be able to help. For example, your fatigue may be caused by a low red blood cell count (anaemia), an underactive thyroid, loss of muscle strength and fitness, depression or the side effects of medicines, which your doctor may be able to manage. You may need a referral to a specialist or a fatigue clinic (if available).

How to manage fatigue

• Be realistic about what you can do. Your body is still recovering and it will take time for your energy levels to return.
• Exercise regularly to help boost your energy levels, restore muscle mass and reduce fatigue. Consider seeing an exercise physiologist or  physiotherapist so they can develop a tailored exercise program for you.
• Break tasks up into smaller, more manageable pieces. Focus on doing a little bit each day rather than a lot all at once.
• Plan your day. Set small manageable goals and take regular breaks. Leave plenty of time to get to appointments.
• Adapt your activities. Sit down to talk on the phone or do light chores. Do your shopping online. Talk to an occupational therapist for more tips on reducing fatigue in specific activities.
• If you have children or grandchildren, sit down to play. Try activities like reading, board games, colouring, puzzles and drawing.
• Ask for, and accept, offers of help. Family and friends can help with shopping, school pick-ups or mowing the lawn.
• Say no to things you don’t feel like doing. If you have trouble saying no, ask someone to do it for you.
• Eat nutritious foods and limit alcohol. Aim to eat a healthy, well-balanced diet and drink plenty of water.
• Take regular short breaks throughout the day. Rest when you need to.

Download our fact sheet ‘Fatigue and Cancer’

Listen to our podcast ‘Managing Cancer Fatigue’ 

Pain can have a big impact on your life and prevent you from doing the things you want to do. After treatment, pain may continue for months or years. This is called chronic pain and it affects some cancer survivors. Causes include:

• scars or nerve damage after surgery
• nerve damage from cancer drug therapies leading to numbness and tingling in hands and feet
• irritated, sensitive skin in the area where you had radiation therapy
• joint and muscle pain from hormone therapies
• a build-up of lymph fluid (lymphoedema.

How you manage your pain depends on the type of pain you have. Pain may be a side effect of cancer treatment or it may be caused by an unrelated health issue, such as arthritis.

Managing pain

Learning how to manage your pain may let you return to many of the activities you enjoy and improve your quality of life. Discuss your pain with your doctor so they can try to work out the cause and develop a pain management plan. In cases where no fixable cause of the pain is found, the focus will shift to improving your ability to function despite the pain.

Pain medicines called analgesics are widely used to help reduce pain. Non-steroidal anti-inflammatory drugs or paracetamol are the main drugs used to relieve pain in survivors. While opioids are sometimes prescribed for chronic pain, research shows that using opioids for a long time is not safe. There are other ways to relieve pain.

If your pain is not well controlled, ask your doctor about referring you to a pain management specialist in a multidisciplinary pain clinic.

Ways to relieve pain

• Do some daily stretching and walking to help you deal with the pain. It is important to pace your activities throughout the day, and include rest or
  stretch breaks.
• See a physiotherapist or exercise physiologist. They can develop a program to improve muscle strength and increase your ability to function, which may help relieve pain.
• Talk to a physiotherapist or occupational therapist. They can suggest ways to address physical or practical problems that are causing pain.
• Learn different ways to think about the pain so it has less impact. Some types of talking therapies provided by psychologists and counsellors can help.
• Cognitive behaviour therapy (CBT) has been shown to improve mood, and decrease stress and anxiety.
• Try relaxation techniques, such as deep breathing, hypnotherapy, meditation or listening to music. They may improve how well other pain-relief methods work, help you sleep, and focus your attention on something other than the pain.
• Use massage or hot packs to relieve muscle spasms, stiffness and contractions. Cold packs may be used to numb the pain.
• Acupuncture may help by stimulating nerves to release the body’s natural chemicals, which help reduce pain.
• Try creative therapies such as art therapy or journal writing. These can help you express your feelings and work through the pain.
• Medicines that are normally used for other conditions can help relieve some types of chronic pain. They include antidepressants and steroids.

Download our booklet ‘Understanding Cancer Pain’

Listen to our podcast ‘Managing Cancer Pain’ 

When lymph fluid builds up in the tissues under the skin, it can cause swelling (oedema). This is known as lymphoedema. It can happen if lymph nodes have been removed during surgery or damaged by infection, injury or radiation therapy. Lymphoedema may appear during treatment or months or years later.

Lymphoedema can occur after treatment for many different cancers, but is more common in people treated for gynaecological (vulvar, vaginal, ovarian, uterine and cervical), breast and prostate cancers or melanoma. Whether or not you develop lymphoedema after treatment depends on the location of the cancer, its stage and the type of treatment you had. Not everyone who is at risk will develop it.

Symptoms of lymphoedema

Having lymphoedema can make movement and some types of activity difficult. Swelling usually happens in an arm or leg, but it can also affect other areas of the body. The main signs of lymphoedema include:

• visible swelling
• an aching or tingling feeling
• not being able to fully move the affected limb
• clothing, shoes or jewellery feeling tighter than usual
• pitting of the skin (when gentle pressure leaves a small dent).

How to find a lymphoedema professional

To find a health professional who specialises in the management of lymphoedema, visit the Australasian Lymphology Association’s website. This may be an occupational therapist, physiotherapist or nurse with special training.

How to prevent or manage lymphoedema

• Treat lymphoedema early so you can deal with the problem quickly and avoid symptoms becoming worse.
• If you are at risk of developing lymphoedema, see a lymphoedema practitioner for regular check-ups rather than waiting for signs to appear. They may monitor the amount of fluid in your body using a painless electric charge (bioimpedance spectroscopy).
• Keep physically active to help the lymph fluid flow. Do regular exercise such as swimming, cycling or using light weights.
• Keep the skin healthy and unbroken to reduce the risk of infection. Avoid cuts, scratches, bites and injections in the affected area. If you shave, use an electric razor to minimise cutting the skin.
• Moisturise your skin daily to prevent dry, irritated skin. If you have lymphoedema, ask your lymphoedema practitioner about suitable creams and lotions.
• Protect your skin from the sun.
• Maintain a healthy body weight. Being overweight can be a risk factor for developing lymphoedema.
• Avoid wearing jewellery or clothing that puts pressure on the affected area or leaves marks on your skin.
• Take care cutting your toenails or see a podiatrist to look after your feet.
• Wear a professionally fitted compression garment, if advised by your lymphoedema practitioner.
• Seek medical help urgently if you think you have an infection in the affected area.

Download our fact sheet ‘Understanding Lymphoedema’

Many cancer survivors say they have difficulty concentrating and remembering things. This is called cancer-related cognitive impairment. Other terms used to describe this include “chemo brain” and “cancer fog”. These changes may make you feel anxious, upset or frustrated.

Thinking and memory changes may be caused by the cancer or cancer treatments, medicines, anxiety or depression, or other health issues. These problems usually improve with time, although for some people it may take a year or more to see improvements. Tell your doctor about any thinking or memory problems you are having, and if they are affecting your day-to-day life or your work.

Managing changes in thinking and memory

• Get plenty of sleep. Deep sleep is important for memory and concentration.
• Use a diary or online calendar to keep track of appointments or set reminders on your phone.
• Carry a small notepad or download an app to your phone so you can jot down things you need to remember.
• Use your brain as much as you can – learn a language or musical instrument, do crosswords and puzzles, take up a new hobby.
• Do some gentle exercise each day. This can help you feel more alert.
• Do tasks one at a time rather than multi-tasking. Use a whiteboard to help plan your day.
• Put personal items (e.g. wallet, keys) in a dedicated place at home and at work so you can find them easily.

Download our fact sheet ‘Understanding Changes in Thinking and Memory’

Listen to our podcast ‘Brain Fog and Cancer’

Having tingling (“pins and needles”) or numbness in the hands or feet is a common side effect of some types of chemotherapy drugs. This is called peripheral neuropathy. It may last for a few months after treatment finishes or it may be permanent. In some cases, peripheral neuropathy can get worse a few months after chemotherapy has finished.

The impact of peripheral neuropathy varies from one person to another. It can be painful, annoying and frustrating and, for some people, make it hard to return to hobbies and other activities. Although there is no proven treatment to repair nerve damage, there are some medicines that can help you deal with the symptoms.

Taking care with numb hands or feet

• See a physiotherapist or occupational therapist for exercises to help you carry out your daily activities.
• Test the water temperature with your elbow before putting your hands or feet in to avoid burns.
• Use gloves while doing housework or gardening, a thimble when sewing and oven mitts when cooking.
• Wear well-fitting shoes with non-slippery soles.
• Clear walkways of hazards and remove loose rugs.
• Use non-slip rubber mats in the shower and bath.
• Be careful carrying things as you may have a greater risk of dropping them.
• Regularly check your feet for minor injuries or see a podiatrist.
• If feeling in your feet is severely affected and you can’t feel the pedals in the car, ask someone else to drive for you.

Download our fact sheet ‘Understanding Peripheral Neuropathy and Cancer’

Cancer survivors can experience a range of other physical issues after treatment. Some common side effects are discussed below. If you would like more information about managing these or any other issues, call Cancer Council 13 11 20.

Balance or mobility problems

Surgery or cancer treatment may have affected your balance or ability to walk or move around. Balance training guided by an exercise physiologist, physiotherapist or occupational therapist may help improve your balance and muscle strength.

Bowel or bladder changes

Changes to how your bowel or bladder works can be very distressing and have a significant impact on quality of life. Some medicines and cancer treatments can cause constipation, diarrhoea or incontinence. After treatment, some people have a stoma that allows urine (wee) or faeces (poo) to be collected in a bag. These changes may be temporary or ongoing, and may require specialised help or products. If you have any of these issues, talk to your GP, specialist doctor, specialist nurse or dietitian. Drinking more water and changing what you eat may also help.

Incontinence – This is when a person is not able to control their bladder or bowel. Temporary or permanent incontinence can be a side effect of treatment for cancer of the bladder, bowel, prostate, penis, ovaries, uterus, cervix or vagina. For many people, incontinence is an embarrassing problem. There are ways to better manage or perhaps even cure incontinence, for example, a physiotherapist can teach you exercises to strengthen your pelvic floor muscles. For more information and support, visit the National Continence Helpline or call them on 1800 33 00 66.

Radiation proctitis – Radiation therapy to the pelvic area can damage the lining of the rectum, causing inflammation and swelling known as radiation proctitis. Your treatment team will try to reduce the risk of developing radiation proctitis. It is usually a short-term side effect but may be ongoing in some people. Radiation proctitis can cause a range of symptoms including blood in bowel motions; frequent passing of loose, watery faeces (diarrhoea); the need to empty the bowels urgently; and loss of control over the bowels (faecal incontinence).

The risk of developing radiation proctitis is low, but you may develop some of these symptoms for other reasons. Let your treatment team know if you develop any of these symptoms. They can refer you to a bowel care nurse for support. If you have ongoing bowel problems, your treatment team may refer you to a gastroenterologist.

The blood vessels in the bowel and bladder can become more fragile after radiation therapy to the pelvic area. This can cause blood to appear in your urine (wee) or faeces (poo), months or even years after treatment. Always seek advice from your specialist or GP if you notice new or unusual bleeding. Keep in mind that it may not be related to your treatment. 

Heart health

Radiation therapy to the chest area and some types of chemotherapy may damage the heart muscle and lead to an increased risk of heart problems after treatment. Risk factors include certain types of drugs, such as anthracycline chemotherapy drugs and some targeted therapies; radiation therapy combined with chemotherapy (chemoradiation); having treatment at a younger age; diabetes; high blood pressure (hypertension); obesity; and smoking.

If you have received high-risk chemotherapy or targeted therapy drugs, radiation therapy to the chest or whole body, or combined radiation therapy and chemotherapy, talk to your doctor about your heart health, the symptoms to look out for, and whether you need regular heart checks. If you develop heart problems later in life, make sure you let your doctors know about the cancer treatment you had.

Regular exercise, managing your cholesterol, blood pressure and weight, and stopping smoking can help you look after your heart health.

Bone density loss (osteoporosis)

Cancer and its treatment, particularly radiation therapy, can have long-term effects on your bone strength. Menopause and some types of hormone therapy may also cause bones to weaken and break more easily. Talk to your doctor about having a bone density test or taking medicine to prevent your bones from becoming weak.

Regular weight-bearing exercise (e.g. brisk walking), eating calcium rich foods (e.g. yoghurt, milk, tofu, green vegetables), getting enough vitamin D, limiting alcohol and not smoking will also help keep your bones strong. For more information, visit Healthy Bones Australia or call them on
1800 242 141.

Hearing problems

Radiation therapy to the head or neck and some chemotherapy drugs can affect your hearing. Some people lose the ability to hear high-pitched sounds, or develop a constant ringing in their ears known as tinnitus. These problems may get better when treatment ends or they may be permanent. Tell your GP if you notice any change in your hearing or if these symptoms don’t go away.

Mouth or teeth problems

You may have mouth sores or tooth decay, find it difficult to swallow, or have a dry mouth. These problems can affect your ability to eat, drink, manage your weight or talk. Depending on the type of cancer and treatment, these problems may be temporary or ongoing.

It may help to see a dietitian or speech pathologist. It is important to have regular dental check-ups after cancer treatment, especially if you had surgery or radiation therapy to the head or neck region.

Download our fact sheet ‘Mouth Health and Cancer Treatment’

Treatment for cancer can change how your body looks and works. How you feel about yourself (your self-esteem) may be affected by:

• removal of a body part and use of a prosthesis
• visible scars and skin tightness
• hair loss or hair growing back differently
• trouble speaking
• problems with eating or drinking
• breathing changes or shortness of breath
• weight loss or gain
• bowel or bladder changes
• changes to your sex life and intimacy
• early menopause or infertility
• a sense of feeling prematurely old.

You may be self-conscious about any changes. It will take time to get used to seeing and feeling the differences in your body. Many cancer survivors say they feel angry and upset by the changes caused by the cancer and its treatment.

You may worry about how your family and friends will react, and whether your partner or a potential partner will find you physically attractive. It may help to let others know how you are feeling. Family and friends probably want to provide support and reassurance that they still love you. Hearing what they have to say may boost your confidence.

If you don’t feel comfortable talking to friends or family, consider speaking to your health care team, a psychologist or a counsellor. It may help to talk to someone who has had a similar experience. Call Cancer Council 13 11 20 for information on peer support programs.

Adjusting to changes in appearance

• Be gentle with yourself and acknowledge your feelings.
• Give yourself time to get used to any physical changes. Some changes may improve with time.
• Focus on yourself as a whole person (body, mind, personality), not just the part of you that has changed.
• Talk openly about what has changed. Some people might be avoiding you because they don’t know what to say.
• Do activities that you enjoy or make you feel good about yourself, such as walking, listening to music, working or studying, having a massage, relaxing outside or volunteering.
• Buy some new clothes or accessories that make you feel comfortable and more confident about the way you currently look.
• Book into a free Look Good Feel Better workshop. Call 1800 650 960 or visit lgfb.org.au.
• For practical suggestions about dealing with physical changes, call Cancer Council 13 11 20.

Treatments for some types of cancer can directly affect your physical ability to have sex or to enjoy it. More generally, many cancer treatments can affect your desire to be intimate with others. These changes may be temporary or ongoing and can be difficult to deal with.

Some people say they were not prepared for the sexual changes caused by treatment. Others say they avoid all forms of intimacy, including hugs, kisses and sharing feelings, because they’re afraid this may lead to sex when they don’t feel physically up to it.

You may not even be aware that you aren’t taking an interest in sex or being as intimate as you were before. If you have a partner, they may feel confused or uncertain about how to react. Talk openly with your partner about how you’re feeling and any fears you have about sex. Ask your partner how they’re feeling – they may be worried about hurting you or appearing too eager. You may want to ask your partner to do things differently or talk about other ways of being intimate.

Some people worry that they will never be able to enjoy sex again. Most people can have a fulfilling sex life after cancer, but you may need to find different ways to give and receive sexual pleasure. Like any new skill, this will take time and practice. Some people say that because they try new things, their sex lives actually end up being much better after cancer.

For most people, sex is more than arousal, intercourse and orgasms. It involves feelings of intimacy and acceptance, as well as being able to give and receive love. Although sexual intercourse may not always be possible, closeness and sharing can still be part of your relationship.

How cancer treatment can affect sexuality

General

• reduced interest in sex (low libido)
• tiredness and fatigue
• changed body image
• feeling sexually unattractive
• incontinence
• painful intercourse
• depression or anxiety
• strain on or changes to your relationships

Female

• trouble reaching orgasm
• vaginal dryness
• shorter and narrower vagina
• loss of sensation
• pelvic pain
• menopausal symptoms

Male 

• trouble getting or keeping an erection (erectile dysfunction or impotence)
• changes in ejaculation, such as dry orgasm

Managing changes in your sex life

• Seek professional advice and support. Talk to your doctor or nurse or ask for a referral to a sex therapist or counsellor. They can suggest ways to manage changes that affect your sex life.
• Try hormone creams and vaginal moisturisers to help relieve vaginal discomfort and dryness.
• Ask your doctor about medicines to help with erection problems.
• If surgery or radiation therapy has narrowed or shortened the vagina, you may be advised to use vaginal dilators to help keep the walls of the vagina open and supple. Using dilators can be challenging. Your doctor, nurse or physiotherapist can tell you where to get dilators and how to use them.
• Show affection by touching, hugging, massaging, talking and holding hands.
• Be intimate at the best time for you (e.g. when your pain is low or energy levels high).
• Talk to your GP if your low libido might be related to depression.
• Spend more time on foreplay and try different ways of getting aroused. Do whatever makes you and your partner feel good.
• Use a water-based or silicone-based lubricant during sex. Avoid products with perfumes or colouring to reduce irritation.
• Try different positions during sex to work out which is the most comfortable for you and to control penetration.
• If sexual penetration is painful or difficult, explore other ways to feel pleasure.
• If you feel comfortable, stimulate yourself. This may reassure you that you can still feel aroused.

Download our booklet ‘Sexuality, Intimacy and Cancer’ 

Listen to our podcast episode ‘Sex and Cancer’

Menopause means the ovaries no longer produce eggs and periods stop. Menopause is a natural and gradual process that starts between the ages of 45 and 55. Some cancer treatments, including certain chemotherapy drugs, radiation therapy to the pelvic area, hormone therapy and surgery to remove the ovaries (oophorectomy), can cause early menopause.

If you are younger, reaching menopause much earlier than expected may affect your sense of identity or make you feel older than your age or friends. If your family is complete or you didn’t want children, you may still have mixed emotions or worry about the impact of menopause on your relationship.

When cancer treatment causes early menopause, the impact on how you feel, your body image and your relationships can be significant. It may take time to accept these changes. Talking to your GP, a family member, friend or counsellor may help.

Symptoms of menopause

Most menopause symptoms are related to a drop in your body’s oestrogen levels. When menopause occurs suddenly because of cancer treatment, symptoms may be more severe because the body hasn’t had time to get used to the gradual decrease in hormone levels. Symptoms may include a dry or tight vagina; loss of interest in sex (low libido); hot flushes and night sweats; aching joints; trouble sleeping; dry or itchy skin; and feeling more anxious or overwhelmed.

Many of these symptoms will eventually pass, although this may take months or a few years. Some women who have already been through  menopause find that these symptoms return during or after treatment.

Side effects of androgen deprivation therapy

Males who have androgen deprivation therapy (ADT) to treat prostate cancer may experience side effects such as hot flushes, erection problems, mood changes, fatigue, loss of muscle strength, loss of bone density (osteoporosis), high cholesterol and weight gain.

Studies show that regular exercise can help manage the side effects of ADT. Our ‘Exercise for People Living with Cancer’ booklet includes examples of aerobic, flexibility and strength-training exercises. It may also help to speak to a dietitian for advice on healthy eating.

For more information, talk to your specialist, GP or a sex therapist and see our information on Prostate Cancer.

Ways to manage menopause symptoms

• Meditation and relaxation techniques may help reduce stress and lessen symptoms.
• Maintain a healthy weight and eat a healthy diet with lots of fresh fruit, vegetables and wholegrains.
• Regular exercise can help improve mood, heart health, bone and muscle strength, and energy levels.
• Try cognitive behaviour therapy (CBT) . This has been shown to improve menopausal symptoms, including anxiety, sleep, hot flushes and sexual issues.
• Check your cholesterol levels as they can rise after menopause, increasing your risk of heart disease and stroke. If your levels are high, talk to your doctor about lifestyle changes or cholesterol-lowering drugs.
• Menopause can increase your risk of developing thinning of the bones.
• Menopause hormone therapy (MHT) can help reduce symptoms of menopause, but may not be recommended for some women who had  hormone-dependent cancers, such as breast or ovarian cancer. Talk to your doctor about the risks and benefits of MHT for your situation.
• If you need to avoid products containing oestrogen, talk to your doctor about non-hormonal medicines that may help with menopausal symptoms such as hot flushes and night sweats.
• If vaginal dryness is a problem, take more time before and during sex to become aroused and for the vagina to become more lubricated. Use a water-based or silicone-based lubricant that has no added perfumes or colouring.
• For more information, talk to your doctor, ask for a referral to a specialist menopause clinic or visit Australasian Menopause Society.

Some cancer treatments can cause temporary or permanent infertility (inability to conceive a child). Some people are able to get pregnant or get their partner pregnant after finishing cancer treatment. Other people take steps to preserve their fertility before treatment starts by storing eggs, sperm or embryos.

If you are thinking about trying to get pregnant after treatment, talk to your cancer specialist about the impact that your treatment might have on your health during pregnancy. Depending on the treatment you’ve had, they may advise you to wait between six months and two years before trying to conceive. Discuss the timing and suitable contraception with your specialist. If you do get pregnant, you may need careful monitoring during the pregnancy. It can be helpful to ask your obstetrician to talk with your cancer specialist.

If you are told your infertility is permanent, you may feel a great sense of loss and grief, even if your family is complete. You may feel angry, sad or anxious that the cancer and its treatment caused these changes to your body or your plans for the future. Talking to a psychologist or fertility counsellor about how you are feeling might help.

If you have trouble conceiving after cancer treatment or would like to learn about ways to improve your chances of getting pregnant, ask your doctor for a referral to a fertility specialist. 

Download our booklet ‘Fertility and Cancer’