( By JASCAP )
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Living with secondary breast cancer
Controlling the symptoms of secondary breast cancer
Secondary breast cancer may cause unpleasant symptoms. Sometimes the symptoms can be relieved by treating the cancer itself. Some treatments can work very quickly and you may notice an improvement within a few days. At other times treatments may take longer to work and it can be a couple of weeks before you begin to feel their full benefits.
Apart from treating the actual cancer there are many other ways to help relieve symptoms. This page gives ideas on what may be helpful.
There are different types of painkillers which vary both in their strength and in the way they work. Some painkillers are better for certain types of pain and some suit certain women better than others. If you are taking painkillers it is better to take them regularly, even if you are not in pain when the next dose is due. This is because painkillers not only relieve pain at the time, but work to prevent the pain coming back.
Painkillers can be taken as tablets or liquids by mouth, or as suppositories, which are inserted into the back passage. Some are also given as injections under the skin.
It is important to tell your doctor if the painkillers you are taking aren't easing your pain. Your doctor can either change the dose or change the painkillers to one that will be more effective for you.
Pain caused by secondary breast cancer cells in a bone can be severe. Radiotherapy is very good at easing this type of pain, but can take 2–3 weeks to work. Often, drugs containing morphine are needed while the treatment is being planned or while you are waiting for the radiotherapy to work.
Some women find that morphine makes them feel drowsy when they first start taking it, but this usually only lasts for a day or so. Taking morphine may make some women feel sick at first and they may need an anti-sickness tablet (anti-emetic) prescribed by the doctor for the first few doses. Morphine also commonly causes constipation.
Besides painkillers, a number of other drugs can be very helpful in relieving pain. If the pain is due to secondary breast cancer cells in a bone, drugs known as non-steroidal anti- inflammatory drugs (NSAIDs) can be very helpful. These drugs are often referred to as anti-inflammatories and have few side effects other than sometimes irritating the lining of the stomach.
Drugs known as bisphosphonates can also help to relieve bone pain. They may be given into a vein (intravenously) in the outpatient department every 3–4 weeks. Some bisphosphonates can be taken as tablets, but some of these must be taken on an empty stomach an hour before food and may cause stomach upsets.
Bisphosphonates can help to strengthen bones and lower the risk of fractures. They can also reduce high levels of calcium in the blood (hypercalcaemia) as well as reducing pain.
Your doctor can also prescribe sleeping tablets, or a mild relaxant, which may be particularly helpful if you are having trouble sleeping because of the pain. Anxiety and lack of sleep can make pain worse. For this reason some women also find that practising relaxation techniques helps them feel more comfortable.
Heat and gentle massage can also help ease aches and pains. A good long soak in a warm bath, a well protected hot-water bottle, and some baby oil or lotion massaged into the skin can often make a difference.
Being in pain can make you feel very low and it is important to let your doctor know if the drugs prescribed aren't working. It is also important to keep in mind that there are many different ways in which pain can be controlled. There are also special NHS pain clinics run by doctors and nurses expert in treating pain. You can ask your doctor to refer you to a pain clinic if your pain is not controlled by any of the above methods.
Breathing problems may happen either if the secondary breast cancer spreads to the linings on the outside of the lungs (the pleura) or if the cancer has spread to the lungs themselves.
Cancer cells can irritate the sensitive pleura and cause a pocket of fluid to build up (known as a pleural effusion).
This fluid can press on the lung, making it harder to expand the lungs fully, and so cause breathlessness.
Pleural effusions can be treated by passing a narrow tube into the chest, between the ribs, to drain off the fluid. This is done by first numbing the area with a local anaesthetic, then passing the tube through the skin and betweenhe ribs to reach the outside of the lungs. The tube is stitched securely to the skin on the chest and the other end is connected to a drainage bottle. The tube may be left in overnight, or longer, to drain off as much fluid as possible. This may mean you need to spend a few days in hospital.
Once the pleural effusion has been drained the breathlessness will ease. The effusions can be drained as often as necessary and sometimes a procedure called pleurodesis can be done. This sticks the two linings of the lung together so that fluid cannot collect there.
If the cancer cells have spread to the tissue of the lungs, morphine can be used to relieve the breathlessness. It can be very frightening to feel breathless, and anxiety and fear can make breathlessness worse. Morphine makes people feel relaxed, which also helps to control the breathing rate.
It is less effort for your lungs to expand if you are upright rather than lying completely flat. Using extra pillows in bed or getting a large triangular support pillow (which can be bought from most department stores) can help you stay more upright when you are in bed or resting on a sofa. If treatment reduces the number of cancer cells, this will also help with breathlessness.
Feeling sick (nausea)
The most common cause of nausea for women with secondary breast cancer is the treatment - radiotherapy, chemotherapy and painkillers may all make you feel sick at some time. However, sickness caused by treatment is usually only a temporary problem and eases off completely once the treatment is over. Occasionally, nausea may be caused by the secondary breast cancer cells themselves, especially if they affect the liver or cause high levels of calcium in the blood (hypercalcaemia).
There are many anti-sickness drugs (anti-emetics) available. They work in different ways, so let your doctor know if the anti-emetic you are taking is not working completely, as another type can be tried.
Most anti-sickness medicines take about 20–30 minutes to start to work properly. Many are now available as suppositories, which are inserted into the back passage, and this can be a good way of taking the drug if you feel too sick to swallow a tablet.
Some women find that relaxation exercises help to ease their nausea. Doing something you enjoy, such as finding time to relax with a magazine, book, favourite CD or TV programme, can help take your mind off feeling sick.
You may find that you easily become very tired and that your body is no longer as strong and reliable as it once was. This can be due to the cancer itself or because of the side effects of treatment. It may feel as though you have no strength and everything is more of an effort.
It can be difficult to adjust if tiredness makes it difficult for you to drive or take part in sports, or if you have to walk more slowly than before. It will take time for you to get used to these changes and to accept having to rest, or not being able to do activities that you once took for granted.
If you have little energy, save it for the things you really want to do. Very often, re-organising your daily activities can be helpful. It can also help if you set aside a time to rest every day. Practical aids such as wheelchairs can also be useful. You may feel that by using a walking stick, frame or wheelchair you are 'giving in' to your illness, but they can greatly improve your life and allow you to move around more easily than you could on your own.
Sometimes the cancer or the treatment can cause anaemia, which can lead to tiredness. If this happens you can be given a blood transfusion, which can quickly give you more energy and reduce the tiredness.
Constipation can be caused by strong painkillers or by too much calcium in your blood (caused by secondary breast cancer cells affecting a bone). Constipation can also occur if treatment has made you lose your appetite and you are not eating as much as before.
Having fibre in your diet, drinking plenty of fluids and walking will help, but you may also need to take a medicine to stimulate the bowel (a laxative). Your doctor will be able to prescribe a suitable one for you. Your nurses can also advise you on ways to prevent or relieve constipation.
Difficulty in sleeping
It is not uncommon for women with secondary breast cancer to have difficulty sleeping. There can be many reasons for this. For example, pain may keep you awake, and it can be difficult to sleep when you have a lot on your mind.
Sleeping tablets are often very effective. You can also try some home remedies for sleeplessness - hot milky drinks before bed, a glass of spirits in the evening, warm baths with soothing bath oils, or a relaxing body massage to relieve muscle tension.
Swelling of the arm (lymphoedema)
The best treatment for swelling of the arm (lymphoedema) is a programme of exercise, massage, skin care and a properly fitted support sleeve or bandage. The aim of treatment is to control the swelling and prevent it from getting worse. It is only occasionally possible to reverse swelling caused by damage to the lymph nodes. You can be referred to a lymphoedema clinic for specialist treatment from a breast care nurse or physiotherapist.
Good care of the skin on the arm is very important if you have lymphoedema. Even small cracks or cuts can allow germs to get in, which may lead to infection in the whole arm. Repeated infections can further weaken the lymphatic system in the arm and lead to more swelling.
You can reduce your risk of infection by:
- wearing gloves for gardening and washing up
- avoiding playing with animals that may scratch
- treating small grazes and cuts with antiseptic and keeping them clean until they heal
- protecting your arm from sunburn
- using an electric razor or hair removing cream instead of shaving your underarm hair
- moisturising your skin every day to keep it supple.
You may need to wear a support (or compression) sleeve or bandage to prevent fluid building up in the arm and support the muscles. The support sleeves are worn all day and taken off just before going to bed. Most women who have lymphoedema need to wear a support sleeve every day to keep the swelling down.
High calcium levels in the blood (hypercalcaemia)
Secondary breast cancer cells affecting a bone may make extra calcium pass out of the damaged bone and into the blood. High levels of calcium in the blood can make you feel extremely tired and thirsty, and pass lots of urine. Hypercalcaemia can also make you feel sick and some people become irritable and confused. You may need to spend a few days in hospital for treatment.
Your doctor may ask you to start drinking plenty of water and will put up a drip to give you extra fluids into a vein in your arm (an intravenous infusion). This will increase the fluid content of your blood, encouraging the kidneys to take out the extra calcium from the blood and flush it from the body in urine. Your doctor will give you drugs known as bisphosphonates to speed up the process. These drugs are given as a drip over 15 minutes to an hour, and can be repeated every few weeks. They are usually effective at getting the calcium levels back to normal. You should feel much better within a couple of days.
Strengthening a weakened bone
If a secondary breast cancer has weakened a bone so much that there is a risk of it breaking, you may need an operation to strengthen the bone. This is done under a general anaesthetic. The surgeon will put a metal pin into the centre of the bone and may also fix a metal plate to the bone. This holds the bone firm so that it will not break. The pin and plate will stay in permanently to protect the bone. This is mainly used for the long bones in the legs but is sometimes used for secondaries in other bones, such as the spine. If your hip is affected, the hip joint may be replaced.
You will need to stay in hospital for a week or longer after the operation so that you can recover fully. However, most women are able to get up and start walking a couple of days after the surgery. An operation to put in a pin and plate may be done before any planned radiotherapy treatment, if there is a chance the bone may break before the treatment starts.
When a bone is weakened but doctors feel it is not likely to fracture, bisphosphonates may be used to help strengthen the bone and prevent it breaking.
Headaches and feeling sick caused by brain secondaries
Secondary breast cancer cells in the brain may cause headaches and sickness, as the cancer cells can cause pressure to build up within the skull. Steroids, such as dexamethasone, can be used to reduce the inflammation and so relieve symptoms. Steroids are usually given in short courses and have few side effects, but if taken for long periods they can cause weight gain, a puffy face, muscle weakness and thinning of the skin. A short course of radiotherapy treatment may also be used to treat secondary cancer in the brain.
Complementary therapies for dealing with secondary breast cancer
Many women find that complementary therapies or practices can help them to feel stronger and more confident in dealing with secondary breast cancer. They can be used alongside conventional treatments and medicines.
Complementary therapies can help to improve quality of life and wellbeing and can sometimes help to reduce symptoms. Some complementary therapies, such as meditation or visualisation, can be done by the person with cancer themselves and can reduce anxiety.
Other therapies such as gentle massage can be carried out by relatives or carers and can help them to support the person.
Physical contact and touch can be among the most powerful forms of support for people who are faced with uncertainty, fear or pain, whether emotional or physical. Touching someone gently can express how much you care about them.
Many hospices and hospitals offer complementary therapies alongside conventional care. These may include:
- colour and sound therapy
- massage or reflexology
- relaxation, visualisation or guided imagery techniques
Coping with secondary breast cancer
Secondary breast cancer or its treatment may leave you feeling tired and depressed. You may feel as though you have less energy. The cancer itself may cause some physical effects such as tiredness or feeling sick. Having treatment can be a very difficult time and it can take a while to recover, both physically and emotionally. Treatment may last for months and you may not get the chance to get back to normal until your treatment is complete.
This section gives ideas on how to build up strength and energy.
Your body needs extra nutrients and calories during and after treatment for cancer. It is important to try to keep eating well even if you haven't got much of an appetite. Eat little and often. Make the most of ready-prepared meals for you and your family while you haven't much appetite or energy for cooking. If possible, get someone else to prepare your meals.
Rest and activity
Both rest and activity are necessary for good health and it is important to find the right balance between the two. Your body will tell you when you need to rest, but it is important not to stop doing things completely or to overstretch yourself. When you are not well or having treatment the body uses up a lot more energy than usual. You need rest to give your body time to repair itself.
When you do feel like doing things, it is important not to try to do too much. Start by setting yourself goals - perhaps walking around the garden, or spending a few hours a week at work. Try to concentrate on what you can do.
Staying in hospital
It may take some time to recover from treatment for secondary breast cancer. For some women treatment may involve a stay in hospital. Being inactive like this for even a few days may leave you feeling physically weaker and perhaps nervous about how you will manage when you go home. In this case it may help to spend some time with the hospital physiotherapist and occupational therapist.
The physiotherapist can design a programme of exercise for you and work with you to build up your muscle strength and your confidence. The occupational therapist can help you regain the confidence to manage at home and can offer practical advice.
Before you go home, you and your family may wish to talk to a hospital palliative care nurse (sometimes called a Macmillan nurse), the ward manager or hospital social worker. They can help with any immediate problems, including any financial worries you may have.
Your hospital doctor or discharge planning team can ring your GP's surgery to let them know you are going home. They should also tell them about your condition and any treatment that needs to be continued at home. The hospital nurse can refer you to a community palliative care nurse (Macmillan nurse) to continue your care at home.
It can be hard to judge the best time to return to work. Your decision if and when to go back is likely to depend mainly on your type of work and whether your income is affected.
It is important to do what is right for you. Although it is not usually possible to cure secondary cancer, many women can lead full and active lives for months or years.
Getting back into your normal routine can be very helpful and you may want to return to work as soon as possible. Many women find that going back to work as soon as they feel strong enough gives an opportunity to forget their worries, as they become involved with their job and colleagues again. Talk to your employer about the situation - it may be possible for you to work part-time or job-share.
On the other hand it can take a long time to recover fully from treatment for secondary breast cancer and it may be many months before you feel ready to return to work. Don't feel pressurised into taking on too much, too soon.
Your consultant or GP will be able to help you decide when and if you should return to work.
Help at home when you have secondary breast cancer
After some treatments (though not normally hormonal therapy and bisphosphonates) you will need time to recover and much of this may be at home. You may be a very independent person and not want people around to look after you; but at the same time, for a while, you may not be able to do all the things you would usually do in your home.
Friends and family
For many women, the people who help most are family, friends and neighbours. Having them to help with practical tasks as well as support you emotionally can speed up your recovery. However, resting at home can be difficult, especially if you have a young family who may not fully understand the situation. It may also be hard to ignore the housework.
Don't feel embarrassed about accepting offers of help or even asking people to help. Friends and neighbours sometimes prefer to be asked to help in a specific way - getting some groceries or doing the vacuuming.
Other sources of help
If you live alone, home-help and meals-on-wheels may be able to help you. They can be arranged through a social worker, your GP or your palliative care nurse (sometimes called a Macmillan nurse). If you have been assessed as having a need for social services, you may be entitled to get direct payments from your local authority. This means that you are given payments to organise social services yourself, rather than the local social services organising and paying for them.
You can get information about direct payments from the Department of Health website at www.dh.gov.uk or from your local social security office. If you are not eligible, it may be an idea to pay someone for a few hours each week to help with heavier tasks like shopping and cleaning.
In some parts of the country there are local authorities and services available to help out in the home, particularly if you live alone or have young children. The social workers in your area will be the best source of advice about what is available locally. A social worker will also be the best person to help if you need financial advice. Many support groups offer practical help – we can give you details of those in your area. Your local Citizens Advice Bureau (CAB) can give advice on sources of practical and financial support.
Hospices provide day care services for people with cancer and can often give short-term care or respite care, as well as care for people in the last few weeks of their life.
Hospices specialise in the control of pain and other symptoms and in supporting the person with cancer and their family. People can go into a hospice for a short time to have any pain or other symptoms controlled before going home again. Hospices are not just places where people go to die, although many people think that this is the case.
Many hospices are purpose-built in pleasant grounds and are designed to be attractive and comfortable. Many have kitchens, sitting rooms and accommodation for relatives. Activities are provided for people who are well enough to take part. They are smaller and quieter than hospitals and work at a gentler pace.
Accommodation and care in a hospice is always free of charge. Some are set up by the NHS and others are funded by charities. Sometimes there is a waiting list, but this is not usually longer than a few weeks. Many hospices also have nurses who go out to visit people in their own homes, and day care centres for people who are living at home.
Whether you have been in hospital or not, you may benefit from a visit from a district nurse, a palliative care or Marie Curie nurse, or a hospice nurse. The hospital nurses or your GP can make the arrangements for you. It is also possible to have a private nurse at home, but this can be expensive. Nursing agencies are listed in your local phone book.
Our booklet on caring for someone with advanced cancer gives more information on services available to support you.
Possible effects of secondary breast cancer on your sex life
Many women find that secondary breast cancer has an effect on their sex lives. This can be due to the physical effects of the cancer or its treatment, or because of the emotions or the feelings that cancer can cause.
Our booklet on sexuality has detailed discussion about all aspects of cancer and sexuality which you may find helpful.
An early menopause can be caused by chemotherapy or hormonal therapy. This can lead to uncomfortable menopausal symptoms, such as hot flushes and dryness of the vagina. As the early menopause has been caused by treatment, any symptoms may appear suddenly and will be more severe than those for women who have a natural menopause. This can be very distressing.
Some of the most common effects are discussed below.
Hot flushes often happen at night and can make you feel very uncomfortable. Although they don't have a direct physical effect on sex, if you are feeling irritable and uncomfortable you will obviously feel less like making love.
You may feel more comfortable if you wear loose cotton nightclothes, or sleep naked, and have cotton sheets or a light duvet on the bed. Leaving a window open in the bedroom at night may also help you to feel cooler. This distressing symptom will pass gradually as your body becomes used to the lack of oestrogen.
Lower sex drive
Changes in hormone levels can reduce your sex drive. It is important to let your partner know if you do not feel interested in sexual activity. It can help to explain how you feel so that they do not feel rejected. You can also suggest what you are happy to offer as an alternative – such as, 'I don't want to have sex but would love to give you a cuddle'. If there is tension between you, you may find it helpful to get support from a counsellor who specialises in offering help in these circumstances.
If you have fatigue (continual tiredness that is not relieved by rest) and do not have much energy it might help to make love differently. Less energetic positioning, where your weight is well supported, can reduce strain. You may prefer shorter sexual contact rather than longer sessions.
These are things you can talk about together. You could try identifying times when you feel most energetic and set aside some of this time for lovemaking.
You may have vaginal dryness due to lower levels of oestrogen. This means that the vagina cannot produce enough moisture when you are sexually aroused. It may make intercourse difficult and uncomfortable.
This can be helped by a number of creams and gels that can be applied directly into the vagina. Replens® is a non-hormonal cream available from most chemists. It is applied 2–3 times per week and works for about 72 hours at a time. The cream binds to the vaginal wall and the water held within it re-hydrates the cells and boosts the blood flow in the vagina.
Ovestin®, Ortho-gynest®, and Premarin® are available on prescription from your doctor. They contain a very small amount of oestrogen and can be used as a cream or a pessary. The effect in the vagina is short lasting. Vagifem®, also available on prescription, is a tablet that can be inserted into the vagina up to twice a week. It also contains a small amount of oestrogen. Although the amount of oestrogen in these products is very small there is a small risk that they may increase the amount of oestrogen in the body. As a result, women who are taking aromatase inhibitors (such as Arimidex®) should talk to their doctor before using hormonal vaginal creams, gels and pessaries.
Water based lubricants such as KY Jelly, Senselle®, Astroglide® and Sylk® which can be brought at a chemist, can help to increase moisture levels, making sex easier. Some women prefer to use glycerine: it is cheap and not embarrassing to buy as it has many uses.
Hormone replacement therapy
Unfortunately, since HRT contains oestrogen, which could theoretically encourage the growth of breast cancer cells, doctors generally do not recommend women with secondary breast cancer to have this treatment, although it may be safe for women with oestrogen- receptor negative cancer. Studies have shown that it is not generally safe to take HRT if you have a cancer that has oestrogen receptors (ER) on the surface (ER positive).
Drugs, such as progesterone tablets or a type of anti-depressant called venlafaxine (Efexor®), can help relieve hot flushes and are safe for women with secondary breast cancer to take. Some complementary therapies such as acupuncture or homeopathic remedies can be helpful. You could ask your doctor about medicines which may help.
Loss of their ability to have children causes a great deal of distress to many women. They may grieve deeply for the loss of their chance to have a child or to have more children. Women may also feel less feminine.
Sometimes these emotions are too strong to cope with alone. It may help to talk over your feelings with your doctor or specialist nurse. A trained counsellor can be invaluable in helping you work through emotions which threaten to get too much for you. Your partner may also have feelings of sadness and may benefit from being included in such discussions. They may want to see a counsellor on their own.
Our cancer information and support service can tell you more about counselling and let you know about services in your area.
Feelings and emotions
Anxiety can make it harder for you to get aroused - worry can push everything else, including sex, to the back of your mind.
Communication is an important part of a healthy sexual relationship. It may help to overcome sexual problems if you talk about your concerns with your partner and plan ways to cope with any problems which will suit both of you.
Controlling symptoms is important. Anti-sickness drugs and painkillers are very effective and you could try to plan your doses so that they have a maximum effect when you most like to make love.
The most important thing to remember is that there is no medical reason for you to stop making love if you have secondary breast cancer. Cancer is not contagious and sex will not make your cancer worse.
Living with and after cancer
Information on the emotions you might experience as a result of your cancer diagnosis, ways that you might manage them and other sources of support.
Advice on how to talk to other people, talking to children, relationships and sexuality.
Note: JASCAP has booklets on each of the above subjects.