By Annie Angle, cancer nurse, Dip. Oncology Nursing, Royal Marsden, London
Reviewed by: Dr Michael Jefford MBBS, MPH, MHlthsevMt, PhD, MRACMA, FRACP
Consultant Medical Oncologist, Peter MacCallum Cancer Centre
After your cancer treatment is over, you may think that you won't have to cope with side effects anymore. Unfortunately, this isn't true for everyone. A study published in 2005 reports that 20 out of every 100 cancer survivors (20%) have ongoing problems relating to their cancer and its treatment between one and five years after their diagnosis.
‘I had no idea that I would still be feeling tired five 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.' (Georgina)
It can take time to get over the effects of your treatment. Some problems will disappear quite quickly. Others can take weeks, months or even years to go.
For some people there may be permanent or ‘late' side effects. ‘Late' side effects are problems that develop a long time after treatment finishes. If you have concerns about this happening talk to your doctor. They will be able to let you know if you are at risk.
The side effects will vary depending on the type and stage of your cancer as well as the type of treatment you had. Some people need to make big changes to their life: for example, people who have lost a limb or the ability to eat and drink properly. Other changes may include sexual difficulties, incontinence, pain and fatigue. You may also suffer from emotional changes such as anxiety, depression and loss of confidence.
Everyone is different. Someone who had the same type of cancer and treatment as you may recover faster. You may suffer from side effects that they didn't. But this doesn't mean that your cancer is more serious or more likely to come back than theirs.
Your body will cope with the treatment and recovery in its own way. So try not to worry too much if things are taking time to feel right again. The important thing is that you find the right support to help you manage and cope with any side effects that you have.
The most common problems that cancer survivors say they have include:
Any change in how your body looks, feels or functions can be very hard to deal with. Other people may not be able to fully understand how much these changes can affect your day to day living, especially if it is a few months or years after your treatment finished. This can be very isolating and make it even harder to cope with your side effects.
In this booklet we briefly discuss many of these problems and offer you some ideas on how you may best cope with them. For detailed information, further reading and support contact the Cancer Council Helpline on 13 11 20. Cancer nurses will be able to provide you with information more specific to your needs. Please also refer to the ‘Support services and resources' section in this booklet.
You may also find it helpful to join a support group. Many cancer survivors say that talking to others who are having similar difficulties after their treatment can help a lot. See the ‘Support services and resources' section for information about finding a support group.
Fatigue means feeling very tired and lacking energy to do day-to-day things. Fatigue for cancer survivors can be very different from normal tiredness. It doesn't always go away with rest or sleep.
Fatigue during treatment can be caused by the cancer therapy, poor nutrition, pain or having too few red blood cells (anaemia). But doctors are still trying to find out the exact causes and ways of managing fatigue after treatment finishes.
Fatigue is the most common side effect of cancer treatment. But you probably didn't expect it to continue once your treatment finished. Many cancer survivors say that in the first year after treatment, fatigue is still a very disruptive side effect. Some people say that it greatly affects their quality of life. Day-to-day tasks such as bathing, cleaning, shopping, eating and cooking leave you feeling completely exhausted. Even talking to those close to you can sometimes feel too tiring. Some people may even feel they have to give up working because they feel too tired.
Fatigue can go on for weeks or months after your treatment. Most people will get their energy back between six and 12 months after treatment. But it can take longer, and for some people it gets worse over time and continues for years. For example, people who have had a bone marrow transplant as part of their treatment may lack energy for years after they finish treatment.
Cancer survivors have described their fatigue as:
Many survivors say that they worry their fatigue is a sign that their cancer has come back or that it never really went away. This can be difficult to cope with.
You may think that now your treatment is over you should be full of energy. But this isn't always the case. It isn't uncommon to feel very tired a lot of the time.
If fatigue continues for long periods of time you may also begin to feel quite down about it. You may lose interest in things that you usually like doing or feel unable to concentrate on one thing for very long. It can affect how you feel about yourself and others, which in the long term may affect your close relationships.
You may worry that your friends or family won't believe you or they might think that you are complaining too much if you keep saying how tired you feel. They may not appreciate the long-term effects that fatigue can have on you. But research in this area is growing, and showing just how long fatigue can affect cancer survivors. Doctors are taking more notice of this symptom in survivors and finding more ways to help relieve fatigue.
A lot of cancer survivors don't ever report fatigue to their doctor because they think that nothing can be done about it. However, you should bring it up with your doctor, as there are things that can be done to help. For example, research has shown that mild exercise helps to increase energy levels and your doctor can advise you about this.
If fatigue is a problem for you talk to your treatment team (doctors and nurses). There may be things they can suggest that might help you. Letting those close to you know will help them to understand why you might be feeling so down or lacking motivation.
You can't always stop your fatigue but you can find ways of managing it. If your fatigue is caused by low red blood cells or the side effects of drugs that you are taking your doctor may be able to treat that cause. But otherwise you may have to learn to take short cuts and get help from others to make sure your fatigue doesn't take over your life.
Not all of these things will work for everyone but you may be surprised how small changes can help to save your energy.
Pain following your cancer and its treatment is not uncommon.
Pain can be a side effect from one of your cancer therapies. For example, chemotherapy and surgery can injure nerves and cause pain and numbness in certain areas of your body. Or your skin may be very sensitive in the area you received radiotherapy; this can last for a few months. Scars from surgery can also be painful for a long time after.
Some people have pain in a missing limb or breast. Doctors call this ‘phantom pain'. If you suffer from this type of pain, you may think that it is all due to your imagination: but feel reassured that it isn't. This type of pain can be very difficult to deal with.
Whatever type of pain you have, the most important thing is that you get relief. No-one else can really know how much pain you are in. So being honest with yourself and your doctors is the key to getting your pain under control. Once your doctor knows how much pain you are in, how often and the type of pain, they will plan treatment they know is likely to help.
Try not to put up with the pain and think that you should be able to handle it. Asking for help isn't a weakness. It is your right and you deserve to be pain-free. You are likely to have enough to deal with right now and trying to live with pain on top of it all will only make things harder for you and those close to you.
Depending on the type and how severe your pain is, your doctor may prescribe pain-relieving drugs (analgesia).
Your doctor will usually begin with something mild and see what works for you. If you do need something stronger, such as codeine or morphine, don't be afraid to take them as often as your doctor tells you to. They will be prescribing it because they know it is the best drug to help control your type of pain. And it is very important that you take it as often as your doctor prescribes. You should not leave a dose out because you are not in pain at the time.
Pain-relieving drugs work best if you take them before you are in a lot of pain. The idea is to keep your pain under control. If it gets out of hand, you may need to take much higher doses. Alternating between having no pain to having a lot of pain is very draining emotionally and physically. You will feel much more in control and able to cope if you are not in pain.
It is not uncommon for people who are told that they need to take strong pain-relieving drugs such as morphine to think that this means they are ‘giving up'. Some people even think that it means that they are going to die. This isn't true. Many people with cancer take strong pain-relieving drugs at all stages of their illness.
Some people worry that they will become addicted. But this is very unlikely if you take the correct dose and see your doctor regularly. Most people who take them for severe pain find it easy to come off them when they don't need them any more.
Others feel very frightened of being too drowsy or ‘high' while on them. Again, this is unlikely if you take them as your doctor prescribes. You may feel drowsy to begin with but this usually wears off within a couple of days. If it doesn't, it usually means that the dose is too high and your doctor can change this if necessary.
If your pain is very severe you may need to take very high doses of these drugs to help control your pain. This is quite safe. Don't worry that your body will become resistant to the drugs and they will no longer work for you. If you are taking them for long periods of time your body may get used to the drug and your doctor may need to increase your dose. But this is not a problem. Your doctors and nurses will monitor you very closely for any side effects that you may have.
In addition to morphine your doctor may also prescribe other types of drugs to help relieve your pain. This may include anti-depressants and anti-epilepsy drugs. Again, these are safe and can help control some people's pain a lot more.
You may need to have physiotherapy to help with pain. The therapist may use heat, cold, massage or exercise. Some people find relief in acupuncture. This is a proven method for relieving some types of pain. The acupuncturist puts small needles into pressure points to help control your pain.
Nerve blocks and surgery can help some people. But your doctor will usually only use these when nothing else is working.
How you relieve your pain is best discussed with your doctor. They will know what type of cancer and treatment you had, why you have your pain and a bit about you as a person. Try to be as honest as you can. They need to know exactly how bad it is and how much it is affecting your day-to-day life. All these things are important in helping to decide the best treatment and care for you.
You and your family can do several things that may help with your pain. They may not be miracle cures but may give you some relief, even if only for a short time. And many people say that doing something for themselves gives them a feeling of having some control over their pain.
Before you try any type of complementary therapy, check with your doctor that it's OK. There may be certain situations where they advise against a therapy. For example, your doctor may advise against a strong deep tissue massage if you had surgery or bone problems during your cancer treatment. Always let the complementary therapist know that you have had cancer. Refer to ‘Support services and resources' for websites that provide information about complementary therapies.
If you would like more information and support with your pain and how to manage it, contact the Cancer Council Helpline on 13 11 20.
Not everyone who has had cancer treatment will have changes in their appearance or problems with their body image and self esteem. But if you have had treatment that has left you with scars or changes the way your body works, you may have trouble coping with this. Cancer and its treatment can affect how people look and feel about themselves due to changes in:
How you look and how your body works is an important part of your self-esteem. Many cancer survivors say that they feel very angry and upset by the changes their cancer and its treatment may have caused. For some people these feelings can last a long time.
Trying to accept sudden or unexpected changes to the way you look isn't always easy, especially if you are not entirely comfortable with them. You may worry about how your friends and family now look at you, and whether you are still physically attractive. Others worry more about how they will cope when they go back to work or even if they will be able to return to their old job.
It is natural to worry like this. Try to get support from those close to you. Let them know how you are feeling. They are likely to want to support you and reassure you that they still love and see you in the same way as they did before you had cancer. Hearing these words may help boost your confidence.
If you don't feel comfortable talking to friends or family about how you feel, it may help to talk to a professional counsellor. Some people say they find it helps to talk to someone who has had a similar experience.
Call the Cancer Council Helpline on 13 11 20. They will be able to give you information about your concerns and refer you to resources and support services. For example, Cancer Connect is a telephone peer support service that puts people in touch with others who have had a similar cancer experience. It gives you the opportunity to talk to someone who understands what you are going through-who knows what it is like to have cancer affect their life and the lives of those close to them.
Cancer and its treatment may affect your ability or desire to have sex (libido).
You may not even be aware that you are not taking an interest in sex or being as intimate as you might have before. If you have a partner, this can be confusing for them and may be difficult to cope with.
Some people won't feel any differently sexually. But if you do, it can be very hard to deal with. Some of the changes are temporary; others may be longer lasting.
Anyone who has had cancer may have sexual concerns following their treatment, but those most likely to report long-term problems are:
Sexual problems can be caused by many things including:
All of these things can affect how relaxed you can feel about having sex.
Because we are unique and have different sexual needs and desires, it is very difficult to predict how each person will be affected sexually. A lot will depend on the type of cancer and treatment that you had.
Some women may find that physical changes to their body make it difficult or painful to have sex. Pain is often related to changes in the size of the vagina or vaginal dryness because of hormone treatment, pelvic surgery or radiotherapy. Early menopause brought on by treatment can also affect women's desire.
Men may experience problems with having an erection or ejaculating. For example, some prostate, bowel and rectal surgery can make it difficult to have an erection. Erection difficulties can be very difficult to come to terms with and have a big effect on your sex life.
Your cancer and its treatment may just have made you feel differently about your body. You may feel less sexual because you look different or feel less attractive: perhaps you have had weight loss or gain, a colostomy bag, or a testicle or breast removed. These don't mean you can't have sex, but may make you less likely to feel comfortable having sex.
You may feel embarrassed and upset by the changes and not want your partner to see you without your clothes on. This is very natural. It may take some time before you feel confident about your new appearance and want to have sex again.
Some people say that they were not prepared for the sexual changes from 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 your cancer treatment has affected your ability to have children, this may also change the way you feel about having sex.
Don't think that you have to do anything that you don't want to. It usually helps to talk to your partner about any issues. Let them know why you don't want sex but reassure them that you love them and want to be close. Most partners will be very understanding and happy to do things at your pace.
Coping with sexual concerns will vary from person to person. We are all different so what works for one person may not be helpful for another. Some of following suggestions may help you if you are having problems with your sex life following your cancer treatment.
There are many other things that may help you and your partner enjoy sex more.
Many people find it helpful to talk to someone about their 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.
Refer to ‘Sexuality and Cancer: A Guide for People with Cancer'. Although this booklet is written for people who are having cancer treatment, it does have a lot of useful information in it that will apply to cancer survivors as well.
For women, certain cancer treatments can cause an early menopause. These include:
Going through a natural menopause is often a very difficult time for women. But it can be even more severe if it happens suddenly because of cancer treatment.
Menopause means that your ovaries no longer produce an egg each month and you no longer have periods. This means that you can no longer become pregnant and have a baby.
For women who want children and have not yet had them, this can be devastating. Even if you have had children, don't want any more or never did want children, it may still be very upsetting. Some women just find it hard because it has taken away a part of their identity as a woman.
Other symptoms of menopause include:
It may be reassuring to know that many of these symptoms will eventually pass. But it can take up to a couple of years for this to happen.
For many women, moderate to severe symptoms can often be relieved by taking hormone replacement therapy (HRT). HRT is taken as a daily tablet or skin patch and contains female sex hormones to replace those that your body is no longer naturally making.
After some types of cancer, taking HRT is not recommended. For example, if you had a breast cancer that is likely to grow in the presence of hormones, your doctor is likely to strongly advise against taking HRT as it could increase your risk of your cancer coming back (recurrence).
Also, taking HRT for more than 10 years increases the risk of some diseases including some cancers. However, it also decreases the risk of some other diseases such as osteoporosis.
In special situations, where women are having a lot of problems and nothing else has helped, some breast cancer specialists may suggest using HRT.
Research into this issue is ongoing. We are awaiting results from large studies to give us definite answers.
The best thing to do is to talk over these issues with your doctor and weigh up the possible benefits and risks for yourself. Using HRT for menopausal symptoms is a personal decision.
For some women, coping with menopausal symptoms without HRT may be very difficult. You may find that your confidence and self-esteem suffer quite a bit. Some women find it helps to talk with a counsellor about how they feel. Others find comfort and support from their friends and family. The important thing is to do what works best for you.
What happens to you and your body during menopause is not your fault and in many ways is not under your control. So be kind to yourself and try not to lose too much confidence. Below are some suggestions, other than taking HRT, which may help lessen some of the physical effects of menopause.
Some women may be able to use vaginal oestrogen. This comes in the form of a cream or pessary that you put into your vagina a couple of times a week.
This won't be the same as taking HRT as your body will only absorb a very small amount of the oestrogen, so it won't affect the rest of your body. If you think this may help, ask your doctor if this is an option for you.
Other options include non-hormonal creams that you can buy from the chemist or using water based lubricants during sex.
If you can't take HRT, these symptoms can be very difficult to control. Many women want to try non-drug type methods to help stop their hot flushes. Some women use acupuncture, homeopathy, evening primrose oil or plant oestrogens (phyto-oestrogens). Research is needed to show whether there is any evidence that they really do help.
Research has shown that low-dose progesterone helps to reduce hot flushes and sweats in some men and women who are taking hormone therapy for their cancer. Many doctors think that very low doses are safe even if you have a hormone-dependent cancer. Another drug that has shown to help some women cope with hot flushes is an anti-depressant drug called venlafaxine. Your doctor is the best person to talk to about whether or not either of these drugs would help you.
Simple ways of coping with hot flushes include standing near an open window or keeping a small fan nearby. Use cotton clothing and sheets to help let your skin breathe. Having a cool drink when a flush starts may also help.
Many women say that during menopause the changes in their feelings and moods can become very upsetting for them and those close to them. Feeling low, sad, angry, anxious, irritable, frustrated or depressed is not uncommon. You may find it very hard to cope with your feelings and not know who to talk to.
There is probably no magic cure to feeling any or all of these. But many women say that it can help to:
All of these suggestions may help control other symptoms of meno-pause as well.
The symptoms described in the menopause section above are commonly associated with menopause in women. But men who are taking hormone therapy or have had their testicles removed may also have these symptoms. It may help you to read the section above.
It isn't uncommon to feel very low or depressed for some time after your treatment finishes. Or you may feel OK for a while and then start to feel sad or down a few weeks, months or even years later.
Try not to be too surprised if you do feel fed up and unhappy at certain times. With all that you have been through, and now trying to rebuild your life, nobody could blame you for feeling like this.
Knowing why you feel like you do can help you to work your way through your feelings. Some people feel sad or depressed because of the changes that their cancer has caused. Others become very down because they are frightened about the future. Will their cancer come back? Will they be able to work again? How will the family cope if they can't earn any money?
Whatever it is that might be making you feel down it is important that you get the support you need.
There is a difference between feeling down and sad for a while and feeling very depressed for long periods. Depression is much harder to shake and can go on for a long time if you don't get the right sort of help.
If you have one or more of these signs for a few weeks or more you should see your GP:
These are not the only signs of depression. Some can be caused by other medical conditions. But if you have some of these signs or think that you may be depressed, it is important that you get some help.
It often helps to let someone close to you know how you are feeling. Also, it is important to let your GP know. Be honest with them about how bad you do feel. This will help your doctor and you make the right decisions about the type of support and care you need.
It isn't a weakness to feel depressed and ask for help. So try not to spend too much time ‘beating yourself up' and thinking that you should be able to cope alone. It takes a lot of courage to ask for help and you deserve to feel good about yourself and life again.
There are lots of things that can be done to help with depression, for example professional counselling or psychotherapy. Anti-depressant drugs can make a dramatic difference for some people. Whatever works for you is all that matters.
Your doctor will be able to explain the difference between counselling and psychotherapy, and between a counsellor, psychologist and psychiatrist. This information will help you to choose the support you need.
If you are feeling low, below are a few suggestions that may help you cope with this better. They might not make you feel instantly happy but they may help you feel more in control and positive that things can get better.
If you have signs of depression (see the section above), see your doctor. Some of these approaches may also help, but depression really needs the care of a doctor as well.
Over the past few years there has been a lot of interest in the use of herbal products to help treat depression. But it is important to know that just because something is labelled ‘natural' it doesn't always mean that it is safe to take. Some can have very serious side effects and may interact with other drugs that you are taking.
Two herbal products that have been given a lot of attention in the media as being able to help 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 found not found this to be the case.
Both have side effects and should not be taken along side other anti-depressant drugs. The Cancer Council strongly discourages anyone from using any herbal products without first consulting their doctor.
See the ‘Support services and resources' section at the end for websites that provide information about complementary and alternative treatments.
Loss of fertility can be a side effect of some cancer treatments. This means that you will no longer be able to have children. For some people this is only temporary, but it may be permanent.
Having children may not be a priority for some people: other long-term side effects may be more difficult to cope with. Everyone is different and there is no right way to feel.
If having children is something that you have always wanted, then to be told that is no longer possible can be devastating. While you may have coped well with the news during treatment, you may find it very difficult to cope with after treatment finishes.
Your age and whether or not you have children already can play a part in how you deal with the news of infertility. But even if you have children and were not planning to have any more, it may still make you feel strange to be told that you can't. You may feel a sense of loss: that you are less feminine or manly because you can't have children. You may feel very angry, sad or anxious that your cancer and its treatment caused these changes to your body.
If you are finding it hard to come to terms with being told that you can't have children and would like more information and support from outside those close to you, call the Cancer Council Helpline on 13 11 20. You will be able to speak with a trained counsellor about your concerns. They may be able to offer you support and information about how you and those close to you can best cope with your worries about fertility.
There are many other problems that you may have after your cancer treatment, for example:
In this booklet, we've discussed the most common problems. If you would like detailed information about any of the problems listed above-or any other problems-contact the Cancer Council Helpline on 13 11 20. Also refer to the support and resource sections at the end.
‘The more you know, the better your chances are ... you make better choices, you feel more confident.' (Jason)
Your problems may be made worse by other health problems that you had before your cancer: for example, diabetes, arthritis or heart problems. Getting older can also make some problems more difficult to cope with. It's important that you ask for medical help for any long-term problems that you may have. You may also benefit from emotional support. Side effects can cause strong emotions and trying to find the best way to cope with them can take time and patience.
Seek as much help and support as you can. Many people find it helps to join a support group and talk with other people who have been through similar experiences. Others find it is more helpful to talk one on one with a counsellor. Just do whatever works for you to get through the difficult times.
Some cancer survivors say that using complementary therapies after their cancer treatment helps them to:
Complementary therapies are used with, not instead of, medical treatments.
Although there is no research to prove that these therapies can stop your cancer coming back or prevent a new cancer, many people say that they find comfort in using them. The touch, talk and time they are given from their therapist can be very reassuring. Examples of beneficial therapies include yoga, gentle massage, reflexology, acupuncture, meditation, hypnotherapy and counselling. Others find that music or art therapy is very useful in helping them to express their feelings and remain positive about their future.
Most complementary therapies are safe to use and if they help, most doctors will be happy for you to use them. But it is important to talk to your doctor about using any type of therapy before trying. A good complementary therapist would always encourage you to discuss any therapies with your cancer doctor or GP.
If you would like more detailed information about a particular type of complementary therapy, call the Cancer Council Helpline on 13 11 20. Also refer to the ‘Support services and resources' section.
