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Introduction This booklet has been written to help you, your family and friends understand more about chemotherapy. We hope it answers some of the questions you may have about this type of cancer treatment and how to cope with any side effects it may produce. The information on chemotherapy is divided into sections on how the treatment works, how it is given and how to manage some of the more common side effects. You are likely to have questions and concerns about your own treatment which this booklet does not answer, as there are over 200 different types of cancer and many variations of chemotherapy treatment. It is best to discuss details of your own treatment with your doctor. CancerBACUP also produces factsheets giving more detailed information about the side effects of particular chemotherapy drugs. If you would like any of our chemotherapy factsheets, please contact the Cancer Support Service. The number to ring is (020) 7613 2121, or freephone 0808 800 1234. At the end of the booklet, there is a list of other CancerBACUP publications, some useful addresses and recommended books. |
What is chemotherapy
The type of treatment you are given for your cancer depends on many factors, particularly the type of cancer you have, where in the body it started, what the cancer cells look like under the microscope and how far they have spread, if at all.
Chemotherapy is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It can be just one drug or several drugs, taken from a choice of about 50 different drugs available.
Chemotherapy may be used alone to treat cancer or together with surgery and/or radiotherapy.
What is cancer?
Cancer is a disease of the body's cells. Normally, all cells divide and
reproduce themselves in an orderly and controlled manner. In cancer, however,
the cells multiply without proper control, forming a lump (which is called a
tumour) or in leukaemia, producing too many white blood cells.
Sometimes cancer cells break away from a tumour and travel to other parts of the body via the bloodstream or lymphatic system. (The lymphatic system is a network of fine channels -- called lymph vessels -- which run throughout the body and are part of the body's protection against infection and cancer). When the cancer cells reach other parts of the body they may settle and start to develop into new tumours. These are known as secondary cancers or metastases.
How do the drugs work?
Chemotherapy drugs work by interfering with the ability of a cancer cell to divide and reproduce itself. The affected cells become damaged and eventually die. As the drugs are carried in the blood, they can reach cancer cells all over the body.
The drugs damage the cancer cells in different ways. If a combination of drugs is used, each drug is chosen because of its different effects. Unfortunately, chemotherapy drugs can also affect normal cells in your body, sometimes causing unpleasant side effects. Unlike cancer cells, however, normal cells quickly regrow, so any damage to them is usually temporary and most side effects will disappear once the treatment is over.
Chemotherapy has to be carefully planned so that it progressively destroys the cancer during the course of treatment, but not the normal cells and tissues.
Cure - with some tumours the doctor is able to prescribe a course of chemotherapy which is likely to destroy all the cancer cells and cure the cancer.
Shrinking the cancer and prolonging life - if cure is not possible, chemotherapy may be given to shrink the cancer and try to prolong good quality life.
After an operation - chemotherapy is sometimes given after an operation (adjuvant therapy) when all the visible cancer has been removed but there is a risk that tiny cancer cells, too small to be seen even under a microscope, may have been left behind. The aim then is to destroy these cancer cells.
Before an operation - chemotherapy can be used before the operation (neo-adjuvant therapy) to shrink the tumour and make it easier to remove where the cancer is too large or too strongly attached to surrounding healthy tissue to be removed by an operation. Chemotherapy can also be used in this way before radiotherapy.
Advanced cancer - with some advanced cancers, chemotherapy can be given with the hope of getting rid of all the cancer and achieving a cure. More commonly, where the disease has spread chemotherapy is given to shrink and control the cancer, to prolong life and improve its quality.
High dose chemotherapy
with bone marrow transplant or stem cell support
For some types of cancer, usually after initial chemotherapy has shrunk the
cancer but where there is a high risk of the cancer coming back, a course of
very high dose chemotherapy is given. As this would normally destroy the bone
marrow, the bone marrow is replaced using cells from the bone marrow or blood.
These cells may be collected before the treatment from the patient, or from
someone else whose cells are a good match.
CancerBACUP has a booklet, Understanding bone marrow and stem cell transplants, which goes into this subject in more detail. We would be happy to send you a copy.
Chemotherapy may be given by different routes, depending on the type of cancer you have and the drugs used. Most often it is given by injection into a vein (intravenously). Less commonly used ways are by mouth (orally) or injection into a muscle (intramuscularly) or under the skin (subcutaneously). In special cases chemotherapy may be injected into the fluid around the spine (intrathecally). Sometimes, two or more routes may be used together. Whichever way the drugs are given, they are absorbed into the blood and carried around the body so they can reach all the cancer cells.
Giving the drugs by
intravenous injection
Sometimes the drugs are diluted into a large bag of liquid and given via a
`drip' into a vein in your arm or hand. In these cases, a fine tube will be
inserted into the vein and taped securely to your arm. This tube is called a
cannula.
The other way of giving intravenous chemotherapy is via a fine plastic tube (called a central line) put into a vein in your chest. Hickman or Groshong lines are common examples. Unlike the cannula used for the vein in an arm, a central line is inserted after you have been given a general or local anaesthetic. Once it is in place, the central line is either stitched or taped firmly to your chest to prevent it being pulled out of the vein. It can remain in the vein for many months. This will reduce the need to have needles when you have your intravenous chemotherapy. Blood for testing can also be taken through this line.
Two potential problems with the line are infection and blockage. Once or twice a week the line has to be flushed with heparin, a drug which prevents clotting, and the nurses on the ward will teach you how to do this. You will be able to bath or shower and there are very few restrictions to everyday life. Before you go home make sure you are confident about looking after your central line. If you do have any problems contact the medical staff on the ward for advice.
Alternatively the doctor may decide to put a line in via your arm, and this is called a peripherally inserted central venous catheter (PICC).
Intravenous chemotherapy is given over a period of time, usually ranging from half an hour to a few hours, or sometimes a few days. If it only takes a few hours, the drugs may be given to you as a day patient at the hospital. If not, you will be admitted to a ward at the hospital.
How are the drugs given?
The drugs are prepared at the hospital and you, and perhaps a family member or friend, will be taught how to look after the pump. As most of the pumps are battery operated, care has to be taken with washing but the nurses will give you full instructions. If you have any problems or questions when you get home, contact the medical staff at the hospital. If you would like further information on a particular type of infusion pump, please contact the nurses at CancerBACUP.
Giving the drugs by
mouth
You may be given tablets or capsules to take at home as all or part of your
treatment. You will be told when to take them and given other instructions such
as whether or not to take them with food. If, for any reason, you cannot take
your medication as prescribed you should contact your doctor immediately for
advice. The drugs you have been given by the hospital make up a complete course
of treatment, and if you think you may need further supplies you should discuss
this with the doctor or pharmacist at the hospital.
Some chemotherapy drugs can be given to you as a day patient at the hospital but other chemotherapy treatments will mean a short stay in hospital -- perhaps overnight or for a couple of days. Occasionally chemotherapy treatments will mean you need to stay in hospital for longer; perhaps a few weeks. Your doctor will be happy to explain exactly what your treatment will involve before it starts.
Your doctor will take several factors into consideration when planning your treatment. The most important of these are the type of cancer you have, where in the body it is situated, how far it has spread (if at all), and your general health. This means you will find other patients at the hospital are having different chemotherapy.
How often you have your treatment and how long it takes will depend mainly on the type of cancer you have, the drugs you are taking, the response of the cancer cells to the drugs and any side effects the drugs may cause.
Chemotherapy is usually given as a course of several sessions of treatment. Depending on the drug or drugs given, each session can last from a few hours to a few days. Each session is usually followed by a rest period of a few weeks which allows your body to recover from any side effects of the treatment. The total number of sessions you have will depend on how well your cancer is responding to the drugs. It may take several months to complete all the chemotherapy needed for the treatment of your cancer. When chemotherapy is given via an infusion pump it can be given continuously over a period varying from several days to several weeks. Some patients on oral chemotherapy take smaller doses of chemotherapy daily for several weeks or months, before they have a rest period.
How long will my treatment
last?
This will depend on:
Your doctor will be happy to explain your treatment plan and if you have any questions don't be afraid to ask the doctor or nurse. It often helps to make a list of questions for your doctor and to take a close relative or friend with you to remind you of things you want to know but can so easily forget. You can use the fill-in form at the back of this booklet for your questions.
Changes in the
treatment plan
Your doctor will be regularly checking the effects of the chemotherapy (and radiotherapy,
if you are having that treatment as well) on your cancer. In order to do this
she/he may need you to have frequent blood tests, and occasionally X-rays and
scans. The results from these tests show the doctor how much the cancer is
responding to the treatment. Sometimes, depending on the results of the tests,
your treatment plan may need to be changed. This may be because the drugs you
are having are not shrinking the cancer enough. Changing to different drugs may
produce a better response. Occasionally, your treatment may also be delayed
because the chemotherapy drugs are stopping your bone marrow from working
properly. Delaying the chemotherapy gives your bone marrow a chance to recover
before the next course of drugs is given.
If there is a special occasion you want to attend, or you want to go on holiday, it may be possible to arrange the timing of your treatment to suit.
Not all chemotherapy drugs cause the same side effects, and some people may have very few. Cancer treatments produce different reactions in different people and any reaction can vary from treatment to treatment. It may be helpful to remember that almost all side effects are only short term and will gradually disappear once the treatment has stopped.
The main areas of your body that may be affected by chemotherapy are those where normal cells rapidly divide and grow, such as your mouth, digestive system, skin, hair and bone marrow (the spongy material that fills the bones and produces new blood cells).
If you want to know more about side effects which may be caused by your chemotherapy treatment you should ask your doctor, as he or she will know the exact drugs you are taking. Although the side effects of chemotherapy can be unpleasant, they must be weighed against the benefits of the treatment. If, however, you are finding the treatment or its side effects are making you unwell, do tell your doctor, who may be able to give you medicines to help, or make changes to your treatment to lessen any side effects.
CancerBACUP's chemotherapy factsheets give specific details on different chemotherapy drugs. If you would like any, contact the Cancer Support Service.
Your digestive system
Feelings of sickness, or
actually being sick (nausea and vomiting) is a side effect linked with some chemotherapy
drugs. Many people do not have any sickness with their chemotherapy, nor
does every drug cause it. There are now very effective treatments for sickness
and this is much less of a problem than in the past. If you are affected, it
will start from a few minutes to several hours after chemotherapy injections,
depending on the drugs given. The sickness may last for a few hours or, in rare
cases, for several days. Your doctor can prescribe one of a number of
anti-sickness drugs (antiemetics) to stop or reduce this side effect.
In addition, steroids are often given to reduce or prevent sickness. They may be given by injection with the chemotherapy and as tablets to take at home afterwards (see below).
Some chemotherapy drugs can affect the lining of the digestive system and this may cause diarrhoea for a few days. Some can cause people to lose their appetite for a time. More rarely, some chemotherapy drugs can cause constipation.
If you have any changes in your bowel habit, or are worried about the effects of chemotherapy on your digestive system, see your doctor to discuss any problems you may have. CancerBACUP has a booklet called Diet and the cancer patient with plenty of tips on how to eat well when you feel ill.
It is quite common now to give a steroid injection along with each session of chemotherapy. Given in this way, the doses are small and the steroids will not do any lasting harm. They often give a sense of well-being, as well as helping to reduce feelings of sickness and loss of appetite (see above). Some people find, though, that they put on weight as a result of their increased appetite. CancerBACUP has a factsheet about steroids, which we would be pleased to send you.
Your mouth
Some drugs can cause a sore mouth, which may lead to mouth ulcers. If this is
going to happen it is usually about five to ten days after the drugs are given
and will clear up within three to four weeks. The mouth ulcers can become
infected, but your doctor can give you treatment to help prevent or clear
infection.
Chemotherapy can cause your taste to change; food may taste more salty, bitter or metallic. Normal taste will come back after the chemotherapy treatment finishes.
Your hair and skin
Hair
loss is one of the most well-known side effects of chemotherapy. Some drugs
cause no hair loss or the amount of hair lost is so slight it is hardly
noticeable. Others, however, do cause partial or complete hair loss for a time.
Some chemotherapy can damage hair, causing it to break off at or near the scalp
a week or two after the chemotherapy has started. The amount of hair lost, if
any, depends on the type of drug or combination of drugs used, the dosage given
and the person's individual reaction to the drug.
If hair loss is going to occur, it usually starts within a few weeks of beginning treatment, although very occasionally it can start within a few days. Body and pubic hair may be lost as well. If you do lose your hair as a result of chemotherapy, it will always grow back once you have completed your treatment.
Some people having certain types of chemotherapy may be able to prevent hair loss by using a `cold cap'. This works by temporarily reducing the blood flow and the amount of the drug reaching the scalp. Unfortunately, the cold cap only blocks the action of certain drugs. It is best to ask your doctor whether one would be useful for you.
Some drugs can affect your skin. These may cause your skin to become dry or slightly discoloured and may be made worse by swimming, especially if there is chlorine in the water. Any rashes should be reported to your doctor. Your nails may grow more slowly and you may notice white lines appearing across them.
The drugs may also make your skin more sensitive to sunlight, during and after the treatment. Protect your skin by covering it with loose clothing or sunscreen cream.
Your bone marrow
Chemotherapy can reduce the number of blood cells produced by the bone
marrow. Bone marrow is a spongy material that fills the bones and contains
cells, which normally develop into the three different types of blood cell.
White blood cells
If the number of white cells in your blood is low you will be more prone to
infection as there are fewer white cells to fight off bacteria.
If your temperature goes above 38oC (100.5oF), or you suddenly feel unwell, even with a normal temperature, contact your doctor or the hospital straight away.
As white blood cells are the body's most important line of defence against infection you may be given antibiotics during your chemotherapy treatment to help them fight off any infections. Your regular blood tests will also calculate the number of white cells in the blood and you may need antibiotics given directly into the blood (intravenously) if you have an abnormal temperature while your white cell count is low. You would then need to be admitted to hospital for antibiotic treatment.
In some circumstances, a form of treatment called growth factors can boost your production of white blood cells. These are special proteins, normally made in the body, which can now be produced in the laboratory. You may hear them described as G-CSF or GM-CSF, and they may be prescribed under a brand name. Growth factors are sometimes given after chemotherapy treatment to stimulate the bone marrow to produce new white cells quickly. In this way they reduce the risk of infection.
Following chemotherapy, your blood cells are usually at their lowest 7-14 days after the treatment, although this will vary depending on the type of chemotherapy.
Red blood cells
If the level of red blood cells (haemoglobin) in your blood is low you may
become very tired and lethargic. Because the amount of oxygen being carried
around your body is decreased, you may also become breathless. These are all
symptoms of anaemia -- a lack of haemoglobin in the blood.
During chemotherapy you will have regular blood tests to measure your haemoglobin. A blood transfusion can be given if your haemoglobin is low. The extra red cells in the blood transfusion will very quickly pick up the oxygen from your lungs and transport it around the body to other tissues and organs. You will feel more energetic and the breathlessness will be eased.
Many people worry that they may get an infection from a blood transfusion. All blood is carefully screened before use and infections are extremely rare from blood transfusion.
Platelets
If the number of platelets in your blood is low you may bruise very easily and
may suffer from nosebleeds or bleed heavily from even minor cuts or grazes. If
you do develop any unexplained bleeding or bruising you need to contact your
doctor or the hospital straight away, and you may need to be admitted to
hospital for a platelet transfusion. This is similar to a blood transfusion but
most of the red cells and white cells have been removed and a fluid containing
mostly platelets is transfused into your blood. These platelets will start to
work immediately, clotting together to prevent bruising and bleeding as soon as
the body is injured.
Your regular blood tests will also be used to count the number of platelets in your blood.
Even though chemotherapy treatment can cause unpleasant side effects, some people still manage to lead an almost normal life during their treatment. Often, the chemotherapy makes you feel better, by relieving the symptoms of the cancer. Even if you feel unwell during your treatment course, you may find you recover quickly between courses and can resume your usual activities as you begin to feel better. You may be able to go to work and carry on with your social activities as usual.
Some people feel very tired during chemotherapy. This is quite normal and may be caused by the drugs themselves and your body fighting the disease, or simply because you are not sleeping well. For someone who normally has a lot of energy, feeling tired all the time can be very frustrating and difficult to cope with. The hardest time may be towards the end of the course of chemotherapy.
Try to restrict any unnecessary activities and ask your family or friends to help you with chores, such as shopping and housework. Don't fight your tiredness. Give yourself time to rest and if you are still working see if it is possible to reduce your hours while you are having your treatment. If you are having problems sleeping, your GP may be able to prescribe some mild sleeping tablets for you.
Some intravenous chemotherapy can be given to you as a day patient at the hospital, but if you do have to spend time in hospital, you may need to make more changes to your usual routines. Most employers will be sympathetic if you explain why you need time off work. If you are unable to work, your employer will pay your first 28 weeks' sick pay. If, after this period, you are still unable to work you can claim the short-term higher rate of Incapacity Benefit from the Benefits Agency.
If you are unemployed and not fit to work you will need to switch from Unemployment Benefit to the short-term lower rate of Incapacity Benefit. To do this you should contact your local DSS office and arrange for a medical certificate from your doctor to cover the period of your illness. The Benefits Agency has a form (IB202) which outlines all these benefits and others you may be entitled to.
Your local Citizens' Advice Bureau can also give useful information and advice on available benefits.
During intravenous chemotherapy you may find you cannot do some of the things you used to take for granted. But you needn't abandon your social life completely. Depending on how well you feel, there is no reason to stop going out or visiting friends, especially if you can plan ahead for social occasions. For example, if you are going out for the evening, you could make sure you get plenty of rest during the day so you have more energy for the evening. If you are planning to go out for a meal, you may find it helpful to take anti-sickness tablets before you go and to choose your food carefully from the menu.
For most people, having the occasional alcoholic drink will not affect their chemotherapy treatment, but you should check with your doctor beforehand.
If you are going abroad on holiday, it is important to remember that you should not have any `live virus' vaccines while you are having chemotherapy. These include polio, measles, rubella (German measles), MMR (the new triple vaccine for measles, mumps and rubella), BCG (tuberculosis), yellow fever and oral typhoid. There are, however, vaccines which you can have, if necessary, while you are having chemotherapy. You should ask your doctor about whether you should have other vaccines such as diphtheria, tetanus, flu, hepatitis B, hepatitis A, rabies, cholera and typhoid injection.
CancerBACUP has information about insurance companies that may offer travel insurance for people with cancer.
If you have an important social event coming up, discuss with your doctor whether your treatment can be altered so that you can feel as well as possible for the occasion.
Even though chemotherapy treatment can cause unpleasant side effects, some people still manage to lead an almost normal life during their treatment. Often, the chemotherapy makes you feel better, by relieving the symptoms of the cancer. Even if you feel unwell during your treatment course, you may find you recover quickly between courses and can resume your usual activities as you begin to feel better. You may be able to go to work and carry on with your social activities as usual.
Some people feel very tired during chemotherapy. This is quite normal and may be caused by the drugs themselves and your body fighting the disease, or simply because you are not sleeping well. For someone who normally has a lot of energy, feeling tired all the time can be very frustrating and difficult to cope with. The hardest time may be towards the end of the course of chemotherapy.
Try to restrict any unnecessary activities and ask your family or friends to help you with chores, such as shopping and housework. Don't fight your tiredness. Give yourself time to rest and if you are still working see if it is possible to reduce your hours while you are having your treatment. If you are having problems sleeping, your GP may be able to prescribe some mild sleeping tablets for you.
Some intravenous chemotherapy can be given to you as a day patient at the hospital, but if you do have to spend time in hospital, you may need to make more changes to your usual routines. Most employers will be sympathetic if you explain why you need time off work. If you are unable to work, your employer will pay your first 28 weeks' sick pay. If, after this period, you are still unable to work you can claim the short-term higher rate of Incapacity Benefit from the Benefits Agency.
If you are unemployed and not fit to work you will need to switch from Unemployment Benefit to the short-term lower rate of Incapacity Benefit. To do this you should contact your local DSS office and arrange for a medical certificate from your doctor to cover the period of your illness. The Benefits Agency has a form (IB202) which outlines all these benefits and others you may be entitled to.
Your local Citizens' Advice Bureau can also give useful information and advice on available benefits.
During intravenous chemotherapy you may find you cannot do some of the things you used to take for granted. But you needn't abandon your social life completely. Depending on how well you feel, there is no reason to stop going out or visiting friends, especially if you can plan ahead for social occasions. For example, if you are going out for the evening, you could make sure you get plenty of rest during the day so you have more energy for the evening. If you are planning to go out for a meal, you may find it helpful to take anti-sickness tablets before you go and to choose your food carefully from the menu.
For most people, having the occasional alcoholic drink will not affect their chemotherapy treatment, but you should check with your doctor beforehand.
If you are going abroad on holiday, it is important to remember that you should not have any `live virus' vaccines while you are having chemotherapy. These include polio, measles, rubella (German measles), MMR (the new triple vaccine for measles, mumps and rubella), BCG (tuberculosis), yellow fever and oral typhoid. There are, however, vaccines which you can have, if necessary, while you are having chemotherapy. You should ask your doctor about whether you should have other vaccines such as diphtheria, tetanus, flu, hepatitis B, hepatitis A, rabies, cholera and typhoid injection.
CancerBACUP has information about insurance companies that may offer travel insurance for people with cancer.
If you have an important social event coming up, discuss with your doctor whether your treatment can be altered so that you can feel as well as possible for the occasion.
Unfortunately some chemotherapy treatments, though not all, cause infertility. The infertility may be temporary or permanent, depending on the drugs you are having. It is very important that you discuss this risk fully with your doctor before you start treatment. Your partner will probably be anxious to join you at this discussion so you can both be aware of all the facts and have a chance to talk over your feelings and options for the future.
It is quite possible for a woman having chemotherapy, or the female partner of a man having chemotherapy, to become pregnant during the treatment. Pregnancy should be avoided during chemotherapy, however, in case the drugs affect the baby. For this reason, your doctor will advise you to use a reliable method of contraception (usually `barrier' methods of contraception -- such as condoms or the cap) throughout your treatment.
For women
Most drugs will have no effect on your fertility, but some may stop your ovaries
producing the eggs which can be fertilised by the sperm during sex. If this does
happen it means, unfortunately, that you can no longer become pregnant and it
will also bring on symptoms normally associated with the change of life (the
menopause). Your monthly periods may become irregular and eventually stop
completely and you may experience hot flushes, dry skin and dryness of the
vagina.
Depending on the type of cancer you have, your doctor can often prescribe hormone tablets for you to take before your chemotherapy treatment starts, to help prevent these side effects. The hormones, unfortunately, will not enable you to start producing eggs again and so cannot prevent infertility. Your doctor or nurse may also suggest a cream or ointment which you can get on prescription or buy from the chemist which can moisten the vagina and help to make sex more comfortable.
If your ovaries are going to start producing eggs and the infertility is short-lived, your periods will return to normal after your treatment finishes. This happens in about a third of women who have short-term infertility brought on by the chemotherapy. In general the younger you are, the more likely you are to get back to normal periods and still be able to have children.
If you are pregnant before your cancer is diagnosed and your chemotherapy starts, it is extremely important to discuss fully with your doctor the pros and cons of continuing with your pregnancy. It is occasionally possible to delay starting chemotherapy until after the baby is born. It depends largely on the type of cancer you have, the extent of the disease, and the drugs you will be taking. You will need to talk to your doctor very frankly about your pregnancy and be sure you are fully aware of all the risks and alternatives before making any decisions.
For men
Most drugs will have no effect at all on your fertility, but some may reduce the
number of sperm you produce or affect their ability to reach and fertilise a
woman's egg during sex.
Unfortunately, this means you may no longer be able to father children. You will
still, however, be able to get an erection and orgasm as you did before you
started your treatment.
You should use a reliable method of contraception all through your treatment.
If you have not completed your family before you need to start chemotherapy, you may be able to bank some of your sperm for later use. If this is possible in your case, you will be asked to produce several sperm samples over a few weeks. These will then be frozen and stored. If you and your partner later want a baby, the samples can be thawed and used to try to make your partner pregnant artificially. The pregnancy should then carry on as normal. You may be charged a fee for this service.
If the chemotherapy does cause infertility, some men will remain infertile after their treatment has stopped, while some find their sperm returns to normal levels and their fertility is restored. Sometimes it may take a few years for fertility to return. Your doctor will be able to do a sperm count for you when your treatment is over to check your fertility.
Teenage boys should also be aware of the infertility risk so that, if possible, their sperm can be stored for later years.
Your feelings about
infertility.
Many people are devastated when they discover that the treatment they need to
help beat their cancer will also mean they can no longer have any children.
Infertility is very hard to come to terms with, especially if you were planning
to have children in the future or to have more children to complete your family.
The sense of loss can be acute for people of all ages. Sometimes it can feel as
though you have actually lost a part of yourself. You may feel less manly or
less feminine because you can't have children. Women especially may be
distressed and resentful that the drugs may cause bodily changes (like the
menopause) which undermine their self-confidence even further.
People vary in their reactions to the risk of infertility. Some people may shrug it off and feel that beating the cancer is more important. Others may seem to accept the news calmly when they start treatment and find that the true impact doesn't hit them until the treatment is over and they are picking up the pieces of their lives again.
There is no right or wrong way to react. You may want to discuss the risks and all your options with your doctor before you start treatment. You may also need an opportunity to talk over any emotions which threaten to get too much for you, with a trained counsellor if necessary.
Your partner too will need special consideration in any discussions about fertility and future plans. You may both need to speak to a professional counsellor or therapist specialising in fertility problems. They can help you come to terms with your situation.
Your doctor may be able to refer you to a specialist or you can be put in touch with one directly by contacting the organisations listed at the back of this booklet. The nurses at the CancerBACUP Cancer Support Service are always very willing to discuss problems you may have of any nature and they can also put you in touch with counsellors throughout the country who can offer you help and advice. CancerBACUP has its own counselling service, available by appointment at its London and Glasgow offices.
Many people go through their chemotherapy with their usual sex lives unaffected. On the other hand, some people may find their sex lives temporarily change in some way during their treatment.
Any changes that may occur are usually simple and short-lived, and should not have a long-term effect on your sex life. For example, there may be times when you just feel too tired, or perhaps not strong enough to maintain the level of physical activity you are used to during sex. If your treatment is making you feel sick, you may go off sex altogether for a while. Anxiety may also play a large part in putting you off sex. Often this anxiety may not seem directly related to sex; you may be worried about your chances of surviving your cancer, or how your family is coping with the illness, or about your finances. But stresses like these can easily push everything else, including sex, to the back of your mind.
Any such changes are usually short-lived and not serious. The most important thing to remember is that there is no medical reason to stop having sex at any time during your chemotherapy course. It is perfectly safe to continue to enjoy sex. The chemotherapy drugs themselves will have no long-term physical effects on your performance or ability to enjoy sex, nor will they affect your partner, apart from the increased need for adequate contraception.
The only exception may be women whose chemotherapy has brought on an early menopause. These women will experience symptoms usually associated with the menopause, which may include dryness of the vagina and a decreased interest in sex. In many cases, depending on the type of cancer, your doctor can prescribe hormone replacement therapy (HRT) to prevent these symptoms (unfortunately, the HRT will not prevent the menopause). If dryness of the vagina is making sex uncomfortable, your doctor may be able to prescribe a cream or ointment to ease the problem, or you can use KY Jelly or other commercial preparations such as Replens (available from your chemist without a prescription) to moisten the vagina.
For most cancers, HRT is not a problem at all. The cancers where doctors have some concern are breast cancer and cancer of the womb (uterus). Here the pros and cons of HRT have to be looked at carefully.
If you are anxious that the chemotherapy could affect your sex life, try to discuss your worries with your doctor before your treatment starts -- if you find him or her approachable enough to discuss personal matters without too much embarrassment. Your doctor should be able to tell you what, in general, are the side effects to expect from your treatment and you can then talk over the main implications of these, if any, on your sex life. You need to know about all aspects of your treatment, and if sex is an important part of your life, it matters that you should be fully aware of any possible changes. If the idea of talking to your doctor about these things is too embarrassing, you could contact our Cancer Support Service nurses. They will talk through any sexual problems in complete confidence.
Obviously, it may help if you can discuss your feelings and any worries with your partner. Even though it is unlikely chemotherapy will cause any problems with sex, your partner may still have some anxieties and may have been waiting for a sign from you to show that it is all right to discuss them. Perhaps your partner could join you if you decide you want to talk to your doctor.
Overcoming any problem, sexual or otherwise, may seem like an uphill struggle when you are also trying to come to terms with your cancer and cope with chemotherapy. Remember that most side effects from chemotherapy, such as tiredness or sickness, that may affect your sex life will gradually wear off once your treatment is finished. You will then be free to carry on with your usual sex life as before.
CancerBACUP has a booklet called Sexuality and cancer, which we will be happy to send you.
Many people find that having cancer, needing chemotherapy treatment and the effect that both of these may have on their lives can sometimes make them feel anxious, afraid or depressed. Often these feelings can be prompted by something seemingly trivial, such as having to change your usual daily routine to fit in with the treatments, or something more obvious, such as the side effects of the treatment, or the risk of infertility. If you do feel low or worried, for whatever reason, it is important to know that you are not alone. You can be sure many cancer patients have felt as you do at some time during their treatment and that, like them, you can overcome feeling fearful or discouraged.
One of the first steps to solving problems successfully is to find out exactly what is causing the problem in the first place. You may be feeling anxious for example, asking yourself questions like; `are the drugs working?', `what effects are they going to have on my body or long term health?', `how am I going to cope with the side effects?'
Depression can set in as the drugs start to work on the cancer. Side effects, especially hair loss and tiredness which are caused by some of the drugs, can make you feel less happy about your appearance. Having to change your normal routine to make time for the treatments can also be upsetting. Sometimes, if the cancer is taking time to respond to the drugs, you can start to become discouraged and feel depressed.
The greatest fear of all is fear of the unknown. Many cancer patients feel afraid of the future and what it might bring. Some also do not understand what is happening to their bodies and are frightened of the possible effects of the disease or the treatment.
Once you have identified why you are feeling as you are, you can start to take action against any negative emotions. Knowledge is an antidote to fear, so if you don't understand something about your treatment or disease or you want to know about side effects and possible outcomes of treatment -- ask. If you don't understand the explanation, then keep asking until you do. Remember it is your right to know what is happening to your body and how your life may be affected. Most doctors and nurses are very willing to answer any questions and to keep you up-to-date on your progress.
Your emotional well-being is as important as your physical health. Everyone needs some support during difficult times and having cancer is one of the most stressful situations you are ever likely to face. If you feel that low moods are getting the better of you, try to talk over your feelings with someone you feel close to who can be a good listener. You may also find it helpful to discuss your feelings with a professional counsellor, a leader or member of your religious faith or a social worker. If you feel comfortable discussing personal worries with your doctor or nurse, then these people are often very good at helping you to bring your feelings out into the open and they can refer you to a trained counsellor or social worker for further help.
If you are finding it particularly difficult to overcome a period of depression, your doctor may suggest one of a number of treatments, such as a course of anti-depressant drugs. These drugs are useful on a short-term basis to help lift your spirits and they usually have few side effects.
There are ways in which you can smooth the course of your chemotherapy treatment.
Try to keep a positive attitude. To achieve this easy-to-say, difficult-to-do feat you need to know what your treatment involves, what is expected to happen, what side effects, if any, to expect, what can be done about them and what should be reported to your doctor. If you gather as much information as possible about your disease and treatment, you can play an active part in tackling your disease. You may need to ask questions over and over again, or ask new questions every time you see your doctor. This is fine. It's your disease and you need to work with your doctor to find ways of overcoming this very difficult time. (Use the fill-in page at the end of this booklet to note the questions you want to ask and the answers you receive).
It helps to know how you are getting on. Ask your doctor to tell you regularly about your progress. This will give an opportunity for the doctor to reassure you if progress is slower than expected, and to discuss changing your treatment if necessary.
Some people find it helpful to keep a diary or journal of their treatment. This can have practical use as well as letting you express your feelings. For example, you can record each time you felt sick and look back over your treatment to see how this fits in with your drugs. Changes to reduce side effects can often be made using information like this.
Writing down your thoughts can also help you to clarify any questions you may have for your doctor or nurse -- and can help you to remember to ask them!
As your journal develops, you may find it encouraging to look back at how you coped during early low patches. Many people draw strength from realising that they came through before and can then believe they will do so again.
A private diary also allows you to `say' anything that may be difficult for you to voice to someone else. Sometimes this can be used to prepare you to speak to a person about a problem or it can be used as a safety valve for anger or sadness that you feel you cannot express any other way. CancerBACUP's booklet, Who can ever understand?, can also help in this - we will readily send you a copy.
Doing things for yourself will help you to feel more in control of your disease and treatment. You might like to look into learning relaxation or meditation techniques -- the CancerBACUP nurses can provide further information on these, and can send you a copy of our booklet, Cancer and complementary therapies. Try to plan your time so you can still do the things that are most important to you. Although you should try not to let chemotherapy rob you of your social life, don't be too tough on yourself. Realistic goals are more likely to be achieved and therefore make you feel better. Taking some exercise -- as long as it's not too strenuous -- will raise your spirits and can help to get rid of tension. It is best to check with your doctor, however, before starting any new exercise programme.
Sometimes the hardest period is when treatment is finished and you -- and everyone else -- see this as the time to `get back to normal'. Recovery time varies between people, and no-one can say for sure how long you should take to get over the side effects, the tiredness, and the emotional effects of the cancer and its treatment. The end of the visits to hospital for treatment can leave you feeling alone and neglected. This may be the time when you need most support.
Research into new ways of using chemotherapy is going on all the time. As no current cancer treatment results in the cure of all the patients treated, cancer doctors are continually looking for new ways to treat the disease and they do this by using clinical trials. Major cancer centres and most larger general hospitals around the country now take part in these trials (or studies as they are sometimes called).
If early work suggests that a new treatment might be better than the standard treatment, cancer doctors will carry out trials to compare the new treatment with the best available standard ones. This is called a controlled clinical trial and is the only reliable way of testing a new treatment. Often several hospitals around the country take part in these trials.
So that the treatments may be accurately compared, the type of treatment a patient receives is decided at random - typically, by a computer - and not by the doctor treating the patient. This is because it has been shown that if a doctor chooses the treatment, or offers a choice to the patient, he or she may unintentionally bias the result of the trial.
In a randomised controlled clinical trial, some patients will receive the best standard treatment while others will receive the new treatment, which may or may not prove to be better than the standard treatment. A treatment is better either because it is more effective against the tumour or because it is equally effective and has fewer unpleasant side effects.
The reason why your doctor may like you to take part in a trial is because until the new treatment has been tested scientifically in this way it is impossible for doctors to know for sure which is the best one to choose for their patients.
Before any trial is allowed to take place an ethics committee must have approved it. Your doctor must have your informed consent before entering you into any clinical trial. Informed consent means that you know what the trial is about, you understand why it is being conducted and why you have been invited to take part, and you appreciate exactly how you will be involved.
Even after agreeing to take part in a trial, you can still withdraw at any stage if you change your mind. Your decision will not affect your doctor's attitude towards you. If you choose not to take part or you withdraw from a trial, you will then receive the best standard treatment rather than the new one with which it is being compared.
If you do choose to take part in a trial, it is important to remember that whatever treatment you receive will have been carefully researched in preliminary studies, before it is fully tested in any randomised controlled clinical trial. By taking part in a trial you will also be helping to advance medical science and so improve prospects for patients in the future.
CancerBACUP has a booklet called Understanding clinical trials, which explains clinical trials in more depth. We would be pleased to send you a copy.
CancerBACUP
3 Bath Place
London
EC2A 3DR
Office: (020) 7696 9003
CancerBACUP Scotland
(Cancer Counselling Service)
30 Bell Street
Glasgow
G1 1LG
Office: 0141 553 1553
Cancer Support Service:
(020) 7613 2121
Freephone: 0808 800 1234
Open Monday-Friday 9am-7pm
Cancer Counselling
Service
London: (020) 7696 9000
Glasgow: 0141 553 1553
CancerBACUP Nottingham
Nottingham City Hospital
Hucknall Rd, Nottingham NG5 1PB
Admin: 0115 840 2650
CancerBACUP Jersey
Grey Gables, La Haule, St Brelade, Jersey JE3 8BP
Tel: 01534 490085 Freephone (Jersey only): 1200 275
In addition to providing a link with CancerBACUP's Cancer Support Service in the
Channel Islands, CancerBACUP Jersey runs a local cancer support group and
trained local volunteers give support over the telephone, and in the local
hospital.
CancerLink
11-12 Northdown Street, London N1 9BN
Tel (admin): (020) 7833 2818; Freephone: 0800 132905
Offers support and information on all aspects of cancer in response to telephone
and letter enquiries. Acts as a resource to over 370 cancer support and
self-help groups throughout the UK, and publishes a range of publications on
issues about cancer.
Cancer Care Society (CARE)
21 Zetland Road, Redland, Bristol BS6 7AH
Tel: 0117 9427419
Offers emotional support and practical help through support groups around the
country. Telephone and one-to-one counselling, telephone link service, holiday
accommodation and information on other charities and cancer-related
organisations.
Macmillan Cancer Relief
15-19 Britten Street, London SW3 3TZ
Tel: (020) 7351 7811
Provides home care nurses through the Macmillan Service and financial grants for
people with cancer and their families.
Marie Curie Cancer Care
28 Belgrave Square, London SW1X 8QG
Tel: (020) 7235 3325
Runs eleven centres (hospices) throughout the UK, and a nationwide nursing
service, providing hands-on care for patients in their own homes throughout the
day or night, free of charge.
Tak Tent Cancer Support -
Scotland
The Western Infirmary, Block C20, Western Court,
100 University Place, Glasgow G12 6SQ
Tel: 0141 211 1932 (resource/information centre)
Offers information, support and counselling to cancer patients, their relatives
and friends and professional staff involved in their care. Network of support
groups throughout Scotland.
Tenovus Cancer Information
Centre
PO Box 88, College Buildings, Courtenay Road, Splott, Cardiff
Tel: 0800 526527 (freephone helpline)
(029) 2049 7700 (admin)
Provides an information service on all aspects of cancer, and practical and
emotional support for cancer patients and their families. Freephone cancer
helpline staffed by nurses, social worker and counsellor. Drop-in centre and
support group.
The Ulster Cancer
Foundation
40-42 Eglantine Avenue, Belfast BT9 6DX
Tel: (028) 9066 3439 (helpline)
(028) 9066 3281 (admin)
Funds cancer research in NI universities and hospitals. Runs cancer information
helpline, information and resource centre, public and professional education,
`Stop smoking clinics' and advisory service, rehabilitation programmes and
support groups for patients and relatives.
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