Treatment side effects

Tuesday 1 April, 2014

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On this page: Fatigue | Pain | Tingling or numbness in the hands and feet | Lymphoedema | Memory and cognitive problems | Other physical problems | Changed body image | Sexuality and intimacy | Menopause | Fertility problems 


It can take time to recover from the side effects of treatment. Side effects can be both physical and emotional and vary depending on the cancer type and stage, and the treatment you had.

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

Common side effects include:

  • feeling very tired (fatigue)
  • pain
  • loss of self-esteem and confidence
  • changes in sexuality and sexual function
  • menopausal symptoms for women
  • fertility problems
  • persistent swelling (lymphoedema)
  • forgetfulness or memory problems (chemo brain)
  • changes in bladder or bowel functioning
  • problems with eating or drinking
  • weight loss or gain
  • mouth or teeth problems
  • bone density loss (osteoporosis)
  • hair loss or changes
  • sleeping difficulties
  • numbness or tingling in feet or hands (peripheral neuropathy)
  • muscle aches and pains

Some people experience late side effects. These are problems that develop months or years after treatment finishes. They may result from scarring to parts of the body or damage to internal organs. If you are concerned about a new side effect, talk to your doctor.

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 13 11 20.

Fatigue

Fatigue, or feeling exhausted and lacking energy for daily activities, is a common physical side effect of cancer treatment.

Now that treatment is over, you may think you should be full of energy, but often this isn’t the case. If you were unable to be active during treatment, you may have experienced a loss of muscle and fitness. This could contribute to your fatigue. Many people say that fatigue has a big impact on their quality of life in the first year after treatment.

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.

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 have described fatigue after cancer treatment as overwhelming, debilitating and frustrating. Symptoms include:

  • 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 • reduced mobility and loss of muscle strength (weakness)
  • breathlessness after light activity, such as making the bed
  • difficulty concentrating
  • finding it hard to think clearly or make decisions
  • having little or no interest in sex (low libido).
Managing 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 may be able to help. For example, your fatigue may be caused by low red blood cells (anaemia), an underactive thyroid gland, depression or the side effects of drugs, which your doctor may be able to address.

The tips below may help you. Not all suggestions will work for everyone, but you may find that small changes make you feel better. Talk to your health care team for more suggestions.

"A lot of rest, and doing Pilates and other exercise has helped my ongoing well-being." – Donna 
How to manage fatigue
  • Set small, manageable goals – Focus on doing a little bit each day rather than a lot all at once.
  • Ask for help – Get a friend to help with school pick-ups, shopping or mowing the lawn.
  • Plan your day – Make a task list and do the activities that are most important to you when you have the most energy.
  • Take it slow – Work at your own pace and take regular breaks.
  • Relax – Try calming activities like walking on the beach, sitting in a peaceful setting, spending time in the garden, having a long bath or listening to music.
  • Leave plenty of time to get to appointments.
  • Be realistic – Don’t expect to be able to instantly do everything you used to do. Your body is still recovering and it will take time for your energy levels to return.
  • If you have children, sit down to play. Try activities like reading, board games, puzzles and drawing.
  • Say no to things that you don’t feel like doing.
  • Regular light exercise can boost energy levels and reduce fatigue. Try short walks, pilates or tai chi. A physiotherapist or exercise physiologist can develop a suitable rehabilitation program. Talk to your GP before starting a new exercise program.
  • Smoking reduces your energy. If you smoke, talk to your doctor about quitting, call the Quitline on 13 QUIT (13 78 48).
  • Take it easy – 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 daily activities.
"I had no idea that I would still be feeling tired months after finishing treatment. I didn’t know how to make it better and I was scared that’s how it would be; that I wouldn’t go back to normal, that I would never go back to having energy again." – George
Sleep disturbance

Difficulty sleeping is common among people who have had cancer. Sleep can be affected by symptoms related to the cancer treatment as well as environmental, physical and psychological factors. People who have pre-existing sleep problems can have additional sleep difficulties after their cancer diagnosis.

Managing sleep disturbance
  • Only go to bed when tired.
  • Get up at the same time each morning, including weekends.
  • Do not take daytime naps.
  • Reduce/eliminate the use of alcohol, caffeine, nicotine or certain food (e.g. spicy food).
  • Exercise regularly.
  • Avoid looking at the clock throughout the night.
  • Ensure the room is dark, quiet and a comfortable temperature.
  • Set up a pre-sleep routine to help you to relax.
  • If medication interferes with your sleep, discuss alternatives with your doctor.
  • Order a free copy of Cancer Council's relaxation CD

Pain

Pain can have a big impact on your life and prevent you from doing the things you want to do.

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

Controlling the pain may allow you to return to many of the activities you enjoy. Discuss your pain with your doctor so that the cause of the pain can be worked out and the best treatment plan developed. How you manage your pain depends on the type of pain you have. If your pain lasts for a long time or is constant, do something about it before it gets out of control.

Taking medication regularly is often 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.

Let your doctors know how pain is affecting your day-to-day life, as this helps them plan the best treatment for you. A referral to a pain specialist or physiotherapist may help, or your pharmacist might be able to suggest ways to manage the pain. 

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 help for some types of pain. 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 as prescribed by their doctor are generally not at risk of addiction, unless they have had addiction problems in the past. However, you may experience withdrawal symptoms when you stop taking a drug. For this reason, your doctor will reduce your dosage gradually. Talk to your doctor if you are concerned about drug dependence.

Will the pain-killers make me drowsy?

You may feel drowsy when you first start taking the medication, but this usually wears off within a couple of days. If the drowsiness continues, talk to your doctor. They may be able to adjust your dosage or change your medication.

Other methods of pain relief

For some people, pain can be relieved without taking tablets. Some people have surgery or an anaesthetic injected into their body (nerve block).

A physiotherapist or occupational therapist can suggest exercises or postural changes to address physical or practical problems that are causing your pain.

The following therapies may also help to 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 music may improve the effectiveness of other pain-relief methods, help you sleep and focus your attention on something other than the pain. Mindfulness and meditation use breathing techniques to quieten the mind and help you focus on the here and now.
  • Massage may relieve muscle spasms and contractions. Call Cancer Council 13 11 20 for a free copy of Massage and Cancer .
  • Applying hot or cold packs to areas of your body may provide relief.
  • Acupuncture may help by stimulating the nerves to release the body’s own natural chemicals, which help reduce pain or regulate the brain and other functions.
  • Other therapies, such as hydrotherapy and Transcutaneous Electrical Nerve Stimulation (TENS) may also assist with pain relief. See a physiotherapist for more information.
  • Let your doctor know about any complementary therapies you are using or thinking about trying. Some therapies may not be appropriate. For example, your doctor may advise against a strong, deep tissue massage if you had surgery or bone problems during treatment. Always let your treating therapist know that you have had cancer. For more information call Cancer Council 13 11 20 for a free copy of Overcoming Cancer Pain.

Tingling or numbness in the hands or feet

Tingling or numbness in the hands or feet (peripheral neuropathy) is a common side effect for people who have had chemotherapy, and may last for some time after treatment finishes. Peripheral neuropathy can be annoying and frustrating, and may make it difficult for you to return to normal hobbies and activities. It may help to talk to your GP, or see an occupational therapist.

The lack of feeling in your hands and feet can cause safety problems. Protect yourself around the home by following these precautions:

  • check your water temperature in your home to avoid burns
  • use protective gloves while washing dishes
  • wear cotton socks
  • clear walkways and avoid the use of rugs
  • install rubber mats in showers and baths to prevent slipping.

Lymphoedema

Lymphoedema is swelling that occurs in soft tissue, usually a limb such as the arm or leg, after lymph nodes have been removed during surgery, or damaged by infection, injury, or other treatment such as radiotherapy. The likelihood of developing lymphoedema after treatment depends on the extent of the surgery, your cancer treatment and your body weight. Lymphoedema may be permanent, but it can usually be managed, especially if treated early. Signs of lymphoedema include persistent swelling, which may be associated with new feelings of heaviness, tightness, aches, or pins and needles.

Some hospitals have specialist lymphoedema physiotherapists or occupational therapists who can help to manage lymphoedema. They can provide advice on lymphatic drainage massage and exercises and can teach you simple exercises to reduce your risk.

For more information visit the Lymphoedema Association of Australia website or call Cancer Australia (1800 624 973) for a copy of 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
Managing your lymphoedema risk
  • Avoid cuts, scratches, bites and injections in your affected limb.
  • Use sunscreen to protect your skin from sunburn.
  • Regularly moisturise your skin to prevent dryness and irritation, which can lead to infection.
  • Avoid constrictions to your limb (e.g. don’t apply blood pressure cuffs to the affected limb).
  • Maintain a normal body weight.
  • Take care cutting your toe nails or get a podiatrist to cut them.
  • Engage in activities like swimming, bike-riding or using light weights to aid the flow of lymph fluid.
  • Treat lymphoedema early so that you can deal with the problem quickly and avoid symptoms becoming worse.
  • Lightly massage the affected area to help move fluid back towards the heart.
  • Avoid exposure to heat.
  • Wear a professionally-fitted compression sleeve or stocking when travelling, if advised by your physiotherapist or occupational therapist.
  • Visit the Australasian Lymphology Association, or ask your doctor to refer you to a lymphoedema therapist in your area.
  • Raise your legs if watching TV and avoid sitting for long periods.
  • Seek medical help urgently if you have lymphoedema and experience redness, swelling, throbbing or pain in your limb as these can be signs of infection which requires urgent treatment.
  • Remember, lymphoedema can take months or years to develop and not everyone who is at risk will develop it.

Memory and cognitive problems

Many cancer survivors say they have difficulty concentrating, focusing and remembering things. This is often called ‘chemo brain’, as it is common after chemotherapy. However, some cancer survivors who did not have chemotherapy also report similar problems.

These memory and cognitive problems can also be caused by:

  • fatigue
  • emotional concerns, such as stress, anxiety or depression
  • radiotherapy to the head, neck or whole body
  • hormone therapy
  • immunotherapy
  • other medications
  • infections
  • vitamin or mineral deficiencies, such as iron, vitamin B or folic acid
  • other health problems, including anaemia
  • brain surgery
  • tumours, cancer or metastases in the brain.

‘Chemo brain’ usually improves with time, sometimes taking a year or more. Researchers still aren’t sure exactly what causes the memory and concentration problems experienced by some cancer survivors, but there is ongoing research to try to find out.

Tell your doctor about any memory or cognitive problems you are having. Ask for a referral to a health care professional such as an occupational therapist who can advise you on strategies to overcome these difficulties and improve memory.

Managing memory problems
  • Use your mobile phone, 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.
  • Discuss these problems with your partner, family or workplace and ask for their support or assistance.
  • Let phone calls go through to your answering machine or voicemail. You can listen to them when ready and prepare how you will respond.
  • Do tasks one at a time rather than multi-tasking.
  • If you are working and have your own office, close the door when you don’t want to be interrupted.
  • Make notes of things you have to remember, e.g. a shopping list or where you parked the car.
  • Set aside time each day to read and respond to emails.
  • Put personal items (e.g. wallet, keys) in a dedicated place at home and at work so you don’t misplace them.
  • Do some physical activity every day to help you sleep better. Deep sleep is important for memory and concentration.

Other physical problems

Cancer survivors can also experience a range of other physical problems after treatment.

Bowel or bladder changes

Changes to how your bowel or bladder works can be very distressing and difficult to adjust to. Some medications and cancer treatments can cause constipation, diarrhoea, or incontinence of the bowel or bladder. Some people have a stoma because of their treatment. These changes may be temporary or ongoing and may require specialised help or products.

For more information and support, call the National Continence Helpline on 1800 330 066 or visit www.continence.org.au or www.bladderbowel.gov.au.

Heart problems

Sometimes radiotherapy to the chest and heart area leads to an increased risk of heart problems after treatment. Risk factors for radiation-associated heart damage include:

  • radiotherapy combined with chemotherapy
  • younger age at treatment
  • diabetes
  • high blood pressure (hypertension)
  • obesity
  • smoking.

If you have received radiotherapy to the chest or whole body, or combined radiotherapy and chemotherapy, talk to you doctor about your heart health.

Mouth or teeth problems

You may have problems with your mouth or teeth, or find it difficult to swallow. 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.

Balance or mobility problems

Surgery or cancer treatment may have affected your balance or ability to walk or move around. A physiotherapist or occupational therapist may be able to assist with these problems.

Hearing problems

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. Tell your GP if you notice any change in your hearing or if these symptoms don’t go away. If you would like more information about managing these or any other problems, call Cancer Council 13 11 20. 

Changed body image

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

  • changes to your appearance (e.g. from surgery)
  • hair loss or hair growing back differently
  • speech difficulties
  • problems with eating or drinking
  • breathing changes or shortness of breath
  • weight loss or gain
  • bladder or bowel changes (e.g. colostomy, ileostomy or nephrostomy)
  • changes to your sex life and intimacy
  • infertility.

It will take time to adjust to these changes physically and emotionally. 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 still find you physically attractive. It may help to let others know how you are feeling. They probably want to provide support and reassurance that they still love you, and 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 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 support services.

Look Good...Feel Better program

This is a free community service program dedicated to teaching people how to manage the appearance-related side effects caused by cancer treatment. Workshops are offered throughout Australia. See information about upcoming Look Good...Feel Better workshops.

Sexuality and intimacy

Cancer and its treatment may affect your sexuality and intimacy in physical and emotional ways. These changes may be temporary or ongoing and can be difficult to deal with.

Sexual difficulties can affect any cancer survivor, but those most likely to experience long-term sexual problems include:

  • women treated for breast or gynaecological cancers
  • women who experience early menopause
  • men treated for testicular or prostate cancer
  • people treated for cancer of the rectum or lower bowel
  • people who have had head and neck surgery
  • people who have a stoma because of their treatment.

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 this 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.

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 be confused or feel uncertain about how to react.

Talk openly with your partner about how you’re feeling, what you want and any fears you have about sex. Ask your partner about how they are 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.

Common sexual problems after cancer treatment
General
  • Loss of interest in sex
  • Tiredness and fatigue
  • Changed body image (due to scarring, loss of a body part or changes in weight)
  • Infertility
  • Pain
  • Depression or anxiety
  • Relationship changes or pressures
Men
  • Erectile dysfunction
  • Ejaculation problems
Women
  • Difficulty reaching orgasm
  • Vaginal dryness
  • Reduced vaginal size
  • Loss of sensation
  • Pelvic pain
  • Menopausal symptoms
Useful resources
Managing sexual difficulties
  • Seek professional advice and support. Talk to your doctor (with or without your partner). A referral to a sex therapist or physiotherapist may help.
  • Show affection by touching, hugging, massaging, talking and holding hands.
  • Spend more time on foreplay and try different ways of getting aroused: shower together, have a weekend away, watch a romantic or erotic movie, wear something sexy. Do whatever makes you feel relaxed and good about yourself.
  • Try different positions during sex to work out which position is the most comfortable for you.
  • Use a water or silicone-based lubricant during sex. Avoid products with perfumes or colouring to reduce irritation (e.g. Sylk® or Pjur®). Some women who have had radiotherapy or surgery may be advised to use a dilator to keep their vagina open and supple.
  • Ask your doctor if medication can help with sexual problems, e.g. difficulty getting or maintaining an erection.
  • Do some physical activity to boost your energy and mood.
  • Dance with your partner. The physical closeness may help arouse sexual desire.
  • Be intimate at a time best for you (e.g. when your pain is lowest or your energy levels are higher).
  • Take some pain relief medication before having sex if you have ongoing issues with pain.
  • Try shorter lovemaking sessions.
  • If you feel comfortable, stimulate yourself. This may reassure you that you can still enjoy sex. Or you may want to stimulate your partner and help them reach orgasm, even if you don’t want any stimulation for yourself.

Menopause

Menopause means that a woman’s ovaries no longer produce eggs and her periods stop. The average age for a woman to experience natural menopause in Australia is 51.

Some cancer treatments, including certain chemotherapy drugs, radiotherapy to the pelvic area, hormone treatment and surgery to remove the ovaries (oophorectomy), can cause symptoms of menopause. These symptoms can be temporary or permanent.

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

Symptoms

When menopause occurs suddenly as a result 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 hot flushes, mood swings, trouble sleeping, tiredness and vaginal dryness. 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.

Menopause also increases your risk of developing thinning of the bones (osteoporosis). Ask your doctor how to manage or prevent this. 

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

 

Managing menopause symptoms
  • Hormone replacement therapy (HRT) 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. For more information and non-hormone alternatives, talk to your specialist.
  • Ask your doctor for advise about diet modifications or herbal remedies
  • Maintain a healthy weight and eat a healthy diet with lots of fresh fruits and vegetables, and whole grains.
  • See more tips about sexuality and intimacy.
  • See your doctor about trying an oestrogen cream, which may relieve vaginal dryness.
  • If vaginal dryness is a problem, take more time before and during sex to help the vagina relax and become more lubricated.

Fertility problems

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

Although chemotherapy and radiotherapy can reduce fertility, women may be able to become pregnant after treatment, and men may still be able to father a child.

Your doctor may suggest you wait a certain period of time before trying to conceive, in order to give your body time to recover, and allow eggs or sperm to become healthy again. Some form of contraception must be used during this time.

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 counsellor about how you are feeling might help.

Call Cancer Council 13 11 20 for more information or a free copy of Fertility and Cancer.

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

Key points

  • After treatment, side effects can take weeks, months, or even years to resolve.
  • Side effects can be both physical and emotional and vary depending on the cancer type and stage, and the treatment you had.
  • Fatigue is one of the most common physical side effects of treatment.
  • Controlling any pain may allow you to return to many of the activities you enjoy.
  • Pain medications should be taken regularly as advised by your doctor to best manage your pain by preventing it from starting or getting worse.
  • Changes to your body after treatment can change how you feel about yourself (self-esteem).
  • Lymphoedema can occur if the lymph nodes are damaged or removed. It is managed by preventing or controlling the swelling, and taking care to avoid infections.
  • After treatment, many people say they have difficulty concentrating. This is often referred to as ‘chemo brain’.
  • The effects of cancer treatment on sexuality may be temporary or ongoing.
  • Some cancer treatments can cause symptoms of menopause. This can be temporary or permanent.
  • Some people become infertile after treatment. Infertility can be distressing regardless of whether you want to have children in the future.

Reviwed by: A/Prof Jane Turner, Department of Psychiatry, University of Queensland; Polly Baldwin, Cancer Council Nurse, Cancer Council South Australia; Ben Bravery, Cancer Survivor, NSW; Helen Breen, Oncology Social Worker, Shoalhaven Cancer Services, NSW; A/Prof Michael Jefford, Consultant Medical Oncologist, Peter MacCallum Cancer Centre and Clinical Director, Australian Cancer Survivorship Centre; David Larkin, Clinical Cancer Research Nurse, Canberra Region Cancer Centre; Miranda Park, Clinical Nurse Specialist, Cancer Information and Support Service, Cancer Council Victoria; Merran Williams, Nurse, Bloomhill Integrated Cancer Care, QLD; Iwa Yeung, Physiotherapist, Princess Alexandra Hospital, QLD; Danny Youlden, Biostatistician, Viertel Cancer Research Centre, Cancer Council Queensland.
Updated: 01 Apr, 2014