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Treatment side effects

Friday 30 March, 2012

It can take time to get over the side effects of cancer treatment. Side effects vary depending on the type of cancer you had, its stage and the treatment you were given. The changes can be both physical and emotional.

Some problems resolve quickly; others can take weeks, months or even years to improve. Your body will cope with the treatment and recovery in its own way. It is best not to compare yourself to others. Common side effects include:

feeling very tired (fatigue)
pain
loss of self-esteem and confidence
changes in sexuality
menopausal symptoms for women
fertility problems
swelling in the limbs (lymphoedema)
cognitive changes (sometimes called chemo brain)
changes in bladder and bowel functioning
problems with eating or drinking
weight loss or gain
mouth and teeth problems
bone loss (osteoporosis)
hair loss or other physical changes
sleeping difficulties.

Research has found that 20% of cancer survivors have ongoing side effects 1 to 5 years after diagnosis.

For some people there may be permanent or late side effects. Late effects are problems that develop a long time after treatment finishes. If you're concerned about a new side effect, talk to your doctor.

It can be difficult to deal with any change in how your body looks, feels or functions. Other people may not understand how much these changes affect your day-to-day living, especially if it has been a few months or years since your treatment has finished. This can be frustrating and make it harder to cope with the side effects.

This section outlines many side effects common to cancer survivors and offers suggestions on how to cope with them. For further information and support call Cancer Council Helpline 13 11 20.

Fatigue

Fatigue, or feeling exhausted and lacking energy for day-to-day activities, is the most common side effect of cancer treatment. It can be caused by the physical and emotional effects of diagnosis and treatment. Fatigue differs from normal tiredness as it often doesn't go away with rest or sleep.

Now that treatment is over, you may think you should be full of energy, but this often isn't the case. Many survivors say that fatigue has a big impact on their quality of life in the first year after treatment.

Most people get their energy back 6 to 12 months after treatment. However, some people lack energy for years after treatment and their energy levels may never fully recover.

Many survivors worry fatigue is a sign that the cancer has come back or that it never really went away. This is usually not true.

Symptoms of fatigue

People living with cancer have described fatigue as overwhelming, unbelievable, debilitating and frustrating. Symptoms include:

a lack of energy - you may want to stay in bed all day
difficulty sleeping (insomnia)
finding it hard to get up in the morning
feeling anxious or depressed, particularly if fatigue persists
muscle pain - you may find it hard to walk or climb stairs
feeling breathless after light activity, such as having a shower or making the bed
difficulty concentrating, even watching TV or talking to someone
finding it hard to think clearly or make decisions easily
little or no interest in sex (low libido).

You may worry that your friends or family won't believe you or think that you are complaining too much if you keep saying how tired you feel. They may not appreciate the long-term effects of fatigue. It's common for relationships to change if people feel misunderstood. Talking to family and friends about how you feel may help them to understand.

Fatigue and its symptoms may also sometimes be signs of depression. If you have a persistent low mood, talk to your doctor. Treating depression may help you feel less tired and give you more energy.

Managing fatigue

Many cancer survivors don't tell their doctor about fatigue because they think that nothing can be done about it. However, there may be things that your treatment team can suggest that might help.

For example, if your fatigue is caused by low red blood cells or the side effects of drugs, your doctor may be able to treat the cause.

For some people, fatigue is linked to low moods or depression, which can be treated separately.

The tips below may help you. These suggestions might not work for everyone, but you may find that small changes make you feel better. Talk to your health professionals for more suggestions.

Set small, manageable goals. Focus on doing a little bit each day rather than a lot in one go.
Ask for help. Get a friend to help with school pick-ups, shopping or running errands.
Plan your day so you can do the activities that are most important to you at the time of day when you have the most energy.
Take rest breaks between activities.
Do things slowly so that you don't use too much energy as you go. Leave plenty of time to get to appointments.
Try activities to help you relax, reduce stress and take your mind off how tired you feel. For example, you might walk on the beach, sit in a peaceful setting, do some gardening, have a long bath or listen to some music.
Say no to things that you don't feel like doing. It's okay not to please others all the time.
Have realistic expectations. As soon as treatment finishes, don't expect to be able to instantly do all the things you used to do before the cancer. Your body is still recovering and it will take time for your energy levels to return.
Do some regular light exercise, which can boost energy levels and make you feel less tired. A short walk may help to restore your energy without exhausting you. Talk to your health care team about suitable activities.
Smoking reduces your energy. If you smoke, talk to your doctor about quitting or call the Quitline on 13 7848.
Save your energy. Sit down to talk on the phone or do chores, such as cutting up vegetables, ironing or loading the washing machine. Sit down to put wet clothes on hangers and use a trolley to transport them to the clothesline. Leave chairs around the house so that you can sit when you feel tired.
If you have children, play with them sitting or lying down. Board games, puzzles and drawing are good activities.
Eat nutritious meals and snacks throughout the day.
Go to the shops during quieter times or do your shopping online.
Call 13 11 20 to get in touch with a Cancer Connect volunteer who has had the same type of cancer and can share their story.
Consider joining a support group. Cancer Council Helpline can talk to you about support groups that may suit you. Talking about your feelings may ease the burden of fatigue, and you can hear how other people in similar situations have managed.

'I conserve energy at the supermarket by putting small articles into two baskets that I place inside the shopping trolley. When I get to the checkout, I put the basket onto the counter instead of having to stretch and dig in the trolley for small articles.' - Ann

Pain

Some people experience pain after cancer treatment. Pain can prevent you from doing the things you want to do, which has a big impact on your life. Controlling the pain may allow you to return to many of the activities you enjoy.

Chemotherapy and surgery can injure nerves and cause pain and numbness in certain areas of your body. Your skin may be very sensitive in the area you received radiotherapy; this can last for a few months. Scars from surgery can also hurt for a long time.

Whatever type of pain you have, there are usually many ways to manage it. If your pain lasts for a long time or is constant, avoid waiting until it is out of control before doing something about it. Taking medication regularly is the best way to prevent pain from starting or getting worse. Some people call this ‘staying on top of the pain'. It may mean you can use lower doses of pain relief than if you wait until the pain gets worse.

Common pain-killing medications

Pain-killing drugs, called analgesics, are available to treat different types and levels of pain.

Mild pain: paracetamol or non-steroidal anti-inflammatory drugs
Moderate pain: mild opioids such as codeine
Strong pain: opioids such as morphine.

Your doctor may also prescribe other drugs. For example, medications normally used to treat depression or epilepsy have been found to be helpful for some types of pain. Although you may not have depression or epilepsy, taking these drugs may make it possible to control the pain with a lower dose of opioids.

Will I become addicted to pain-killers?

People taking opioids at the levels necessary to relieve pain are not at risk of addiction, unless they have had addiction problems in the past. However, it's common to experience symptoms of withdrawal when you stop taking a drug. For this reason, your doctor will gradually reduce your dosage. If you're concerned about drug dependence, talk to your doctor.

Will the pain-killers make me drowsy?

This is unlikely if you take the medication as your doctor prescribes. You may feel drowsy at first, but this usually wears off within a couple of days. If it doesn't, talk to your doctor. Your dosage may need to be adjusted.

Let your doctors know how pain is affecting your day-to-day life, as this helps them plan the best treatment for you. Your pharmacist may also be able to suggest ways to relieve the pain.

Other methods of pain relief

For some people, pain can be relieved without taking tablets. Some people have surgery or have an anaesthetic injected into their body (nerve block). Doctors usually use these methods if nothing else is effective.

Seeing a physiotherapist or occupational therapist may help you address physical or practical problems that are making you uncomfortable.

Some people use complementary therapies. These therapies may enhance your general well-being and help you cope better with pain. They may also increase your sense of control over the pain, improve your mood, and decrease your stress and anxiety.

Relaxation techniques, such as deep breathing, meditation or listening to your favourite music may help you sleep at night, give you more energy, reduce your anxiety and make other pain-relief methods work better. Mindfulness and meditation use breathing techniques to quieten the mind. This may help you to focus on the present.
A relaxing massage may relieve muscle spasms and contractions.
Applying hot or cold packs to areas may provide good relief.
Distraction involves focusing your attention on something other than the pain. For example, you can listen to music or do something creative, such as paint a picture.
Other therapies, such as acupuncture, may stimulate the brain, relieve your pain and help you relax.

Let your doctor know about any complementary therapies you are using or thinking about trying. Some therapies may not be appropriate depending on your situation. For example, your doctor may advise against a strong, deep tissue massage if you had surgery or bone problems during treatment. Always let the complementary therapist know that you have had cancer.

If you would like more information and support to cope with your pain, contact the Helpline.

Changed body image

Treatment for cancer can change the way your body looks and how it works. This may affect how you feel about your body (your self-esteem).

Your self-esteem may be affected by:

speech difficulties
eating and drinking problems
breathing changes
weight loss or gain
changes to your appearance (e.g. mastectomy or oral surgery)
hair loss or hair growing back differently
bladder and bowel changes (e.g. colostomy or ileostomy)
intimacy and sex life
infertility.

It will take time to adjust physically and emotionally to these changes. Many cancer survivors say they feel angry and upset by the changes the cancer and its treatment have caused.

It's natural to worry about how your family and friends will react, and whether your partner or a potential partner finds you physically attractive. It may help to let others know how you're feeling. They probably want to support you and reassure you that they still love you and see you in the same way as they did before the diagnosis. Hearing what they have to say may boost your confidence.

If you don't feel comfortable talking to friends or family about how you feel, consider speaking to your health care team or a professional counsellor. You may also find it valuable to talk to someone who has had a similar experience. Call Cancer Council Helpline 13 11 20 for information on support services.

Look Good...Feel Better program

This free program teaches techniques to help restore appearance and self-esteem. It's for people having cancer treatment, but may also be available to people who have recently completed treatment. For more information and to learn if you are eligible for the program, call 1800 650 960 or visit www.lgfb.org.au.

Sexuality and intimacy

Cancer and its treatment may affect your sexuality and intimacy in physical and emotional ways. Some people don't feel any differently sexually after treatment, but if you do, it can be hard to deal with. These changes may be temporary or ongoing.

Anyone who has had cancer treatment may have sexual concerns, but those most likely to experience long-term problems include:

women treated for breast or gynaecological cancers
women who experience early menopause
men treated for testicular or prostate cancer
people treated for rectal or lower bowel cancer
people who have a stoma because of their treatment.

Cancer Council has more information on how cancer treatments can affect sexuality and intimacy. Call the Helpline on 13 11 20.

Types of problems you may have

Cancer and its treatment may change your appearance and your sexual response. Hormone levels or the nerves supplying the genital area may have been affected, causing physical problems such as vaginal dryness or erectile dysfunction. This can affect your desire for sex.

You may feel less sexual because you look different or feel less attractive. Some people feel embarrassed and upset by changes to their body and don't want their partner to see them naked.

Some people say they were not prepared for the sexual changes caused by treatment. Others say that they avoid all forms of intimacy including hugs, kisses and sharing feelings, in fear that it may lead to sex when they don't want it. Some people worry that they will never be able to have an intimate relationship again.

If the cancer treatment has affected your ability to have children, this may also change the way you feel about having sex.

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, this can be confusing for them and it may make them feel uncertain about how to react.

See our sexuality and cancer section for more information. You may find it helpful to talk to someone about sexual concerns. But not everyone finds it easy to talk to someone close to them. If you would like to talk to someone outside your own friends and family, call the Cancer Council Helpline on 13 11 20. They will be able to talk things through at your pace and may be able to reassure you about your concerns.

Menopause

Menopause means a woman's ovaries no longer produce eggs and her periods stop. The average age for a woman to experience natural menopause is 52.

Menopause after treatment for cancer may be temporary or permanent. Whether your periods stop temporarily or permanently, you may experience menopausal symptoms. Cancer treatments that can cause menopause include certain chemotherapy drugs, radiotherapy to the pelvic area, hormone treatment and surgery to remove the ovaries (oophorectomy).

Men who are taking hormone treatment or have had their testicles removed may experience menopausal symptoms similar to women. It may help to read this section.

For women who want children, menopause can be devastating. Even if your family is complete or you didn't want children, you may have mixed emotions and worry about the impact on your relationship. Some women find menopause difficult because they feel it has taken away a part of their identity as a woman. See the section on fertility problems for further information.

Symptoms

While natural menopause can be a difficult time for a woman, it may be more difficult if menopause happens suddenly because of cancer treatment.

Symptoms may be severe because the body hasn't had time to get used to the gradual decrease in hormone levels. You may experience hot flushes, mood swings, trouble sleeping, tiredness and vaginal dryness. Many of these symptoms will eventually pass, though it can take months or a few years.

You are also at risk of developing weak and brittle bones (osteoporosis). Ask your doctor how to manage this condition.

Tips

Hormone replacement therapy (HRT) can help reduce symptoms. However, this may not be recommended because studies have shown that using HRT with oestrogen and progestogen for longer than five years can increase the risk of some diseases, such as breast cancer.
Talk to your doctor about non-hormone medications that might help with symptoms such as hot flushes.
Use oestrogen, contained in creams or pessaries, to relieve vaginal dryness. Moisturisers without oestrogen can also be used.
Eat a healthy diet with lots of fresh fruits and vegetables, and wholegrains. Ask your doctor if you want advice about diet modifications or herbal remedies.
Extra lubrication may make intercourse more comfortable. Choose a water or silicone-based gel without perfumes or colouring to reduce irritation (e.g. Sylk® or Pjur®).
Take more time before and during penetration to help the vagina relax and become more lubricated.

Fertility problems

Some cancer treatments can cause temporary or permanent infertility (inability to conceive a child).

Although chemotherapy and radiotherapy reduce fertility, it may still be possible for women to become pregnant after treatment, or for men who have had treatment to father a child.

Your doctor may suggest you wait a certain period of time before trying to conceive. For example, some people wait for a year or two to give their body time to recover, and allow eggs and sperm to become healthy again. Some form of contraception must be used during this time.

If you are told you'll be permanently infertile, you may feel a great sense of loss and grief. You might be devastated that you won't have your own children or additional children, and you may worry about the impact of infertility on your relationship. Even if your family is complete, you may be distressed.

Infertility may make you feel that you have lost control of what you wanted in your life. You may feel very angry, sad or anxious that the cancer and its treatment caused these changes to your body. Talking to a counsellor about how you are feeling might help.

If you have trouble conceiving after cancer treatment, ask your doctor for a referral to a fertility specialist.

Lymphoedema

Lymphoedema is a swelling of part of the body, usually a limb such as the arm. It may occur after lymph nodes are removed during surgery, or if they are damaged by other treatment. When lymph nodes do not drain lymph fluid properly, it causes fluid build-up and swelling.

Signs of lymphoedema include redness; swelling; skin warmth; a feeling of pain, heaviness or fullness in the arm; and tingling in the fingers.

Symptoms are better managed if treated early. For example, if you have swelling, it may be reduced by wearing a professionally fitted elastic sleeve. You can also have massage treatment from a trained lymphoedema drainage therapist, physiotherapist, nurse or occupational therapist. A directory of lymphoedema practitioners is available at www.nlpr.asn.au.

Infection can make the symptoms worse. To prevent infection in the affected arm:

keep the skin moisturised
avoid sunburn
avoid cuts, burns and insect bites
avoid using blood pressure cuffs and having injections.

Lymphoedema can take months or years to develop - some people who are at risk never develop it.

Some hospitals have specialist physiotherapists who can help reduce your risk of developing lymphoedema. You can do simple exercises such as shoulder rolls, elbow bends and hand clenching.

For more information see the Lymphoedema Association of Australia website. You can also contact Cancer Australia (1800 624 973) for a copy of the booklet Lymphoedema - What You Need to Know.

'I had some lymphoedema in my right arm. This causes me little trouble unless it is a particularly hot day or if
I have exercised too much. I have regular massages to keep the fluid moving.' — Amanda

Cognitive problems

After treatment many people say they have difficulty concentrating, focusing and remembering things. This usually happens after chemotherapy, so cancer survivors call it chemo brain. However, other treatments (e.g. hormone therapy and radiotherapy) and side effects such as fatigue or depression can also affect how well you function.

Researchers are looking into what causes the memory and concentration problems that some patients have after treatment. Chemo brain usually improves, but it may take a year or more.

Tips

Use your mobile phone,a calendar or daily planner to keep track of tasks, appointments, social commitments, birthdays etc.
Plan your activities so you do things that require more concentration when you are more alert, e.g. mornings.
Set aside time each day to read and respond to emails.
If you are working and have your own office, close the door when you don't want to be interrupted.
Put personal items (e.g. wallet, keys) in a dedicated place at home and at work so you don't misplace them.
Let phone calls go through to your answering machine or voicemail. You can listen to them and think about how you will respond when you feel ready.
Make notes of things you have to remember, e.g. a shopping list or where you parked the car.
Do tasks one at a time rather than multi-tasking.
Get plenty of sleep and exercise. Deep sleep is important for memory and concentration, and getting some physical activity every day will help you sleep better. [end]

'I've returned to work in my full-time role. I'm probably at 90% of what I used to be. I'm aware that I can't overdo it.
I need to get a lot of rest and take it easy in the evening so I can be productive the next day.' - John

Feeling down or depressed

Feeling low or depressed after treatment finishes is common. Some people may feel fine at first and then start to feel sad or down a few weeks, months or even years later.

Feeling down

Knowing why you feel low can help you to work your way through your feelings. Some people feel sad or depressed because of the changes that cancer has caused. Others become very down because they are frightened about the future. They may wonder if the cancer will come back, if they will be able to work again and how their family will cope if they can't earn enough money.

Support from family and friends or health professionals may help you cope better during these periods.

Depression is more than feeling down for a few days. It may mean you feel in a low mood most of the time, or your sadness lasts two weeks or more.

Signs of depression

If you have one or more of these symptoms for a few weeks or more, you should see your GP:

feeling very sad and low most of the time
loss of interest in and pleasure in normal activities
having negative thoughts about yourself a lot of the time
eating more or less than usual
weight gain or loss
feeling very tired most of the time
having trouble concentrating
loss of interest in sex (low libido)
changes in your sleep habits, e.g. not being able to fall asleep, waking in the early hours of the morning or sleeping much more than usual
feeling restless, agitated, worthless, guilty, anxious or upset
having very little or reduced motivation
being extremely irritable or angry
thinking that you are a burden to others or feeling guilty
a desire to self-harm
a desire to kill yourself.

These are not only the symptoms of depression; some can be caused by other medical conditions. Talk to your doctor about how you are feeling.

Getting help with depression

Depression won't go away by itself – it needs specific treatment. There are many effective treatments for depression, and they don't necessarily include medication. Treatment for depression may include therapy provided by a GP, trained psychologist, psychiatrist or counsellor. Tackling depression early may mean that you can deal with problems quickly and avoid symptoms becoming worse.

In addition to getting professional help to treat depression, the tips on the following pages may help you.

Tips

Take care of yourself. Eat a well-balanced diet with lots of fresh fruit and vegetables and drink plenty of water.
Set small and achievable goals. Remember to not expect too much from yourself.
Get regular exercise. Studies have shown that being active helps lift a person's mood and improves fatigue.
Share your feelings with someone close to you. Just having them know exactly how you feel may help you feel less alone.
Go out and do something you enjoy. A change of scenery can often make you feel better. Spend time outside in the fresh air. Schedule a pleasant event or daily activity.
Review your priorities.
Try not to judge yourself too harshly. Self-criticism can lead to more feelings of hopelessness.
List activities you used to enjoy and plan to do one of these activities each day.
Write down how you're feeling or express yourself in painting, drawing, music or singing.
Get up at the same time each morning, regardless of how you feel.
Try a complementary therapy, such as massage, yoga, hypnosis, acupuncture and reflexology.

Herbal products to treat depression

Some people who have recovered from cancer are interested in using herbal products to treat depression. Though these products are labelled as natural, it doesn't always mean that they are safe. Some can have serious side effects and may interact with other drugs that you are taking.

Two herbal products that are commonly used to treat depression are St John's wort and Ginkgo biloba. Some research suggests that these herbs may help lift mood for some people, however other research has not found this to be the case. Both have side effects and should not be taken along with any other anti-depressant drugs. St John's wort also interacts with many other standard medications.

Check with your doctor before using any herbal products. You can also call Cancer Council Helpline 13 11 20 for more information about complementary therapies.