Diagnosed

Managing Side Effect

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.
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 quit smoking info line 03-2630 6670.
  • 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 NCSM’s Resources and Wellness Centre at 03-2698 7300 to get in touch with a volunteer who has had the same type of cancer and can share their story.
  • Consider joining a support group. Call NCSM’s Resources and Wellness Centre at 03-2698 7300 to find out 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.
Some chemotherapy drugs affect the bone marrow, which is the soft and spongy material inside the bones. The bone marrow makes three types of blood cells:
  1. Red blood cells: carry oxygen throughout the body
  2. White blood cells: fight infection
  3. Platelets: help blood to clot and prevent bruising.                        
The bone marrow's job is to maintain normal levels of blood cells (your blood count) to keep you fit and healthy. When chemotherapy affects the bone marrow, your blood count is reduced. The count may fall with each treatment. This can cause problems such as anaemia, infections and bleeding problems, depending on the type of blood cell affected. Your health care team will do regular blood tests to make sure your blood cells return to normal levels before your next treatment.
 
Anaemia
A low red blood cell count is called anaemia. This can make you feel tired, lethargic, dizzy or breathless. You may need a blood transfusion to build up your red blood cells and treat the anaemia. Eating a nourishing diet with foods rich in iron and B vitamins is also important if you're anaemic. Wholegrain breads and cereals, lean meat and green leafy vegetables are good sources of iron and vitamin B.
 
Infections
If white blood cell numbers drop during chemotherapy treatment, it can make colds and flu harder to shake off. Scratches and cuts may get infected easily or take longer to heal.
 
See your doctor if you're unwell – even if you just have a cold. Sometimes doctors recommend taking antibiotics as a precaution against infection. If you're having chemotherapy in winter, check with your doctor about having the flu vaccine.
 
You may have an injection of granulocyte-colony stimulating factor (G-CSF) after chemotherapy if your doctor thinks it will be useful for you. It increases the number of neutrophils, which are a type of white blood cell that help protect against infection. If G-CSF is given, your doctor or nurse will speak to you about possible side effects. Some people may experience bone pain or tenderness at the injection site or show signs of an allergic reaction.
 
When to contact your doctor
Contact your doctor urgently if any of the following occur:
  • Chills or sweats
  • A temperature of 38°C or more
  • Persistent or severe vomiting
  • Severe abdominal pain, constipation or diarrhoea
  • Unusual bleeding
  • Tenderness, redness or swelling around the site of the intravenous chemotherapy device
  • Any serious unexpected side effects or sudden deterioration in health. 
Also, contact your GP or treating specialist if you experience:
  • Sweating, especially at night
  • Sore throat
  • Mouth ulcers
  • Burning or stinging on passing urine easy bruising.
Tips
  • Keep a thermometer at home to check your temperature.
  • Some people having chemotherapy prefer to avoid crowded places such as shopping centres or public pools to reduce the risk of picking up an infection. This isn't always practical, so use your common sense.  
  • Wash your hands with soap and water before preparing food and eating, and after using the toilet.
  • Use separate boards and utensils for raw and cooked foods, and clean thoroughly with hot, soapy water.
  • Leftover food should be stored in airtight containers in the fridge as soon as possible.  
  • Store raw and cooked foods separately.
  • Try to eat freshly cooked or freshly prepared foods.
  • Don't eat food or drinks past their use-by or best before dates.
  • Wash fruits and vegetables well, or peel where possible.
  • Avoid pre-made sandwiches, salads and takeaway foods; soft cheeses; raw or rare fish, meat and eggs; unpasteurised dairy products and soft-serve ice-creams.
  • Avoid people who are unwell, especially if they have the flu, conjunctivitis, measles, mumps, a cold sore or chickenpox.
Bleeding problems
A decrease in platelets can cause you to bleed for longer than normal after minor cuts or scrapes, or to bruise more easily. You may need a platelet transfusion if they're low.
 
Tips
  • Be careful when using scissors, needles, knives or razors. Small cuts or nicks can harbour germs where an infection can start.
  • Use an electric razor to minimise the chance of nicking yourself.
  • Use a soft toothbrush to avoid irritating your gums.
  • Wear thick gloves when gardening to avoid injury, and to prevent infection from soil, which contains bacteria.
  • If you bleed, apply pressure for about 10 minutes and bandage, if appropriate.  
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 NCSM’s Resources and Wellness Centre on 03-2698 7300 for information on support services.
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.
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.
Hair loss (also called alopecia) can be a side effect of cancer treatment. Not all cancer treatment causes hair loss. The information provided is a guide only and does not replace the advice of health professionals at your treatment centre.

Cancer treatment and hair loss
Hair growth takes place in the cells of the hair follicles (roots). Healthy hair follicles divide every one to three days, and new hair cells form and build the hair shaft in a cyclical pattern of growth and rest. Treatments that affect the rapidly dividing cancer cells also affect other rapidly dividing cells, such as the hair follicles. Ask your doctor if the drugs you are receiving are likely to cause hair loss.

Chemotherapy and hair loss
Chemotherapy is the use of drugs to reduce or stop the abnormal growth of cancer cells. Not all of them cause hair loss. Chemotherapy drugs are usually given in cycles (sometimes weekly or every two or three weeks) and the amount of hair loss depends on the type of drug, the dose and the timing of treatment.

Hair loss can occur anywhere on the body including the scalp, eyebrows, eyelashes, chest, underarms, pubic area and the moustache and beard areas in men. Eyelashes and eyebrows may take longer to fall out.

Chemotherapy causes the hair to break off at or near the scalp. Shortly before the hair falls out you might feel some scalp irritation, discomfort or itchiness. You may notice hair on your pillow and sheets and when you brush or wash it. The hair may fall out over a very short period of time (days). It is common for hair loss to begin about 2–4 weeks after starting treatment.

Radiotherapy and hair loss
Radiotherapy is the use of high energy x-rays to stop cancer cells from growing and multiplying. Normal cells in the path of the beam will also be affected and this can include the hair follicles.
Hair will only fall out in the area of the body being treated. For example, if you are having radiotherapy to your head you will probably lose some hair from your scalp. If the area being treated includes an armpit or your chest, then it is only hair in these regions that is likely to fall out.

Tips:
  • Keep your hair and scalp very clean.
  • Use a mild shampoo like baby shampoo. If you want to use lotion on your head, use Sorbolene. Check with your nurse before using any other hair or skin care products. 
  • Comb or brush your hair gently using a large comb or hairbrush with soft bristles.
  • Wear a light cotton turban or beanie to bed if you're cold at night, or to collect hair.
  • Use a cotton, polyester or satin pillowcase, as nylon can irritate your scalp.
  • If you prefer to leave your head bare, protect it against sunburn and the cold.
  • Make an appointment with a hairdresser who can make your hair look as good as possible even if it's thin or patchy. 
  • Avoid perms and dyes, and limit the use of hair dryers, rollers and harsh products.
  • If your eyelashes fall out, wear glasses or sunglasses to protect your eyes from the sun and dust while outside.
  • Tell your nurse or doctor if the skin on your scalp is very sensitive, or if you have a lot of discomfort and itchiness.
  • Wear a wig, toupee, hat, scarf or turban. Do whatever feels the most comfortable and gives you the most confidence.
  • Some hospitals or treatment centres have a wig library where you can borrow a wig if you need one. Ask your doctor or nurse for more information.
  • If you want to purchase a wig and you have private health insurance, check with your fund to see if you're eligible for a rebate.
Information Reviewed By:
Dr Mark Wong, Staff Specialist, Medical Oncology, Westmead Hospital, NSW; Annie Angle, Oncology Nurse, Cancer Council Victoria; Karen Hall, Clinical Nurse, Cancer Services Division, Flinders Medical Centre, SA and Helpline Consultant, Cancer Council South Australia; Ann Hobday, Consumer; and Cecilia van Raders, Helpline Consultant, Cancer Council Queensland.