Our bodies have a special system to help us fight infection. It is called the lymphatic system; Large quantities of fluid pass through the lymphatic system every day. The lymph glands or nodes trap and stop infections spreading to other parts of the body. If your lymph glands are removed by surgery or damaged by cancer or radiotherapy, lymph fluid can collect in the tissues under the skin, causing an area of your body to swell. This is called lymphoedema. Most commonly it occurs in the arm but can be the leg or another part of the body.
What is the lymphatic system?
To understand how lymphoedema occurs, it is helpful to know a bit about the lymphatic system. Your body tissues are bathed in lymph, a colourless, watery fluid. It contains lymphocytes, a type of white blood cell, which help your body to fight infection and other diseases such as cancer.
The lymph travels along tiny channnels called lymph vessels or lymphatics which, like blood vessels, join together to form larger channels. Eventually the lymph is filtered through a number of lymph nodes before going into the bloodstream.
Lymph nodes, or glands as they are sometimes called, are situated throughout your body. They are made up of a round fibrous capsule containing lymphocytes and vary greatly in size, some being as small as a pinhead and others about the size of a body there may be just a few whereas in your armpit, for example, there are generally 30-50 small nodes.
The job of the lymphatic system and the nodes is to collect and filter out, through the bloodstream, any matter which the body's organisms and "invaders" like cancer cells. These are carried in the lymph through the nodes, where the lymphocytes will try to attack and break them down before they are carried away by the bloodstream and filtered out along with other body waste.
If the lymph nodes trap an infection or cancer, they will usually swell. With infection, the swollen nodes are usually hot, painful and tender to touch. With cancer cells, however, the nodes are often painless and do not cause any discomfort when touched. Any painless swollen node should be checked by your doctor, although it is likely to be caused by something other than cancer.
When a node swells as a result of cancer, it is because the cancer cells trapped by its "filter system" continue to divide and produce new cells within the node. The cancer can originate in the lymph glands themselves (lymphomas) or they may be cancer cells that have spread from other sites (breast, lung, bowel, etc.)
How will Lymphoedema effect you?
The most common effect of lymphoedema is that your arm or leg swells, making the limb feel heavier, making movement more difficult and putting a strain on nearby joints and muscles. There may be some discomfort associated with this and also from the tightness of the skin on the limb which is stretched by the swelling. If you do have any pain, tell your doctor about it as there are many painkilling drugs available which will help. Some people find their skin becomes thicker and drier in appearance, and rarely it may become broken or ulcerated in places. This is because of excess protein in the lymph building up in the tissues.
Who is at risk?
Following breast cancer treatment, not all women get lymphoedema, but it is important that you know how to recognise it. If lymph glands in your armpit were removed during surgery, or if you had radiotherapy after your surgery, then you may get lymphoedema. If you had part of your breast removed without surgery to the lymph glands in your armpit, then you are less likely to be affected. Your doctor or breast care nurse will be happy to discuss with you steps you can take to reduce the risk of lymphoedema.
What can I do to prevent it?
Your doctor or breast care nurse will be able to discuss your treatment and whether you are likely to get lymphoedema. Your breast care nurse will be able to show you exercises you can do which help the lymph to drain, reduce swelling and relieve pain. Your breast care nurse will be able to show you how to do these exercises.
If you have had your lymph glands removed, you may have a higher risk of getting an infection in that arm, so you should take the following precautions:
If lymphoedema develops
If you get some swelling, it does not mean that you definitely have it, nor does it mean that the cancer has returned but further examination is required. Always refer to an oncologist to find the cause of the lymphoedema particularly if the has been a rapid exacerbation with may represent thrombosis in the vein. He or she will examine the armpit and supraclavicular areas (above the clavicle) carefully for evidence of tumours. Often further investigations are required which may include Chest xray, liver U/S and MRI or U/S of the axilla. If tumour recurrence excluded the patient is generally referred to the lymphoedema team!
This is same of the advise you my be given:-
This is one of the most important forms of treatment for lymphoedema. The sleeve or stocking works by compressing the swollen tissues, preventing fluid from building up and giving support to the muscles. More pressure should be applied to the hand or the foot and less at the top of the limb so the fluid is moved upwards. Compression garments must be properly measured and fitted. If the sleeve or stocking is too tight the blood flow to the limb will be restricted and if it is too loose it will not be effective. If the limb is painful or tingly or you notice your fingers or toes are looking dusky or blue, remove the garment and ask for advice from the person who supplied it to you.
A compression sleeve or stocking should be worn all day but can usually be removed at night when you are lying down and drainage of fluid is improved. If you are travelling a long distance, especially by air, you should be sure to wear your compression garment.
Compression garments can be prescribed for you by your surgeon or another member of the hospital team. In many hospitals it is available from the breast care nurse or surgical appliances department.
Sometimes if your arm or leg is very swollen or misshapen it may be difficult to fit a compression sleeve or stocking and special multi-layered bandages may be used instead. These bandages are usually applied daily by a nurse or physiotherapist. It may take several weeks of bandaging before it is possible for a compression sleeve or stocking to be worn. Massage and bandaging are often combined with exercises and skin care to reduce the size of a badly swollen limb.
Stockings or sleeves should not be used on very swollen limbs or where the skin is pitted or folded as this could be harmful and will not help the swelling to go down. If in doubt ask your doctor, breast care nurse or therapist for advice.
Most patients can be maintained on advise and hosiery alone but bandaging is indicated where there is:
Talk to your doctor or breast care nurse if you are worried if caught early, lymphoedema is more easily treated.
Helpful hints for wearing a compression sleeve or stocking
All sleeves or stocking should be hand washed or gently machine washed daily. Read the washing instructions, which are supplied by the makers of the garment. Sleeves should last three to four months; stockings should last six months. If your sleeve or stocking no longer fits properly, have a new one fitted.
Limb positioning and movement
Lymphoedema can often be improved by using gravity to drain away excess fluid. When you stand still for long periods of time gravity encourages the fluid down into your arms or legs. Movement of your muscles forces the fluid to circulate around your body. Regular, gentle movement and careful positioning of the affected arm or leg can reduce swelling. Following the guidelines opposite should help to prevent further swelling.
Gentle exercises play a vital part of your programme of self-care. Exercises should always be done when you are wearing your sleeve or stocking. This enables your muscles to work efficiently against the support of the garment and thus help to reduce the swelling. Exercises will help you in three ways:
It is important to know that too much exercise is likely to increase the swelling. You should not exercise hard enough to cause your skin to become pink and hot without seeking advice from a lymphoedema therapist. Carrying any weight in the hand on your swollen side is also likely to increase the swelling - bear in mind this can include a rather heavy handbag!
Exercise should always be gentle and feel comfortable. Do your exercises slowly and regularly. Long periods of exercise and activity can increase the swelling. Try to break up long and busy days with periods of resting with your limb supported.
If you have arm swelling, a simple exercise that you can do is to make a fist and then stretch your fingers out. Keep repeating this exercise, and if possible, do it with your arm supported at shoulder height on a pillow. You can also watch your posture, and check in a mirror that your shoulders. Circle your shoulders in one direction and then the other.
If you have leg swelling, avoid standing or sitting for long periods. Try walking on the spot and transferring your weight from the toe to the heel. When sitting, sit with your leg elevated and supported behind the knee whenever possible. While in this position, move your foot at the ankle so as to pull our toes up and then point them down. Keep repeating this exercise at regular intervals.
There are many other exercises that may help you. What is right for you depends on your agility and general condition. It is very important that you seek help from a qualified person before starting an exercise programme.
Massage is an important part of the treatment of lymphoedema. There are several different types of massage and for it to be effective in treating lymphoedema it is important to use the correct technique. Deep, firm massage is harmful as it stimulates blood flow and increases the amount of fluid produced.
The aim of massage is to stimulate or move the excess fluid away from the swollen area so that it can drain away normally. This type of massage is called manual lymphatic drainage (MLD) and because it is a specialised form of massage it should be given by a trained therapist.
Therapists should be trained in one of the Vodder, Foldi, Leduc or Casley-Smith methods. MLD is particularly useful if there is swelling in the face, breast, abdomen, genitals or elsewhere on the trunk.
However, you can do a simplified version of self-applied massage at home. It is often easier if your partner or friend does the massage for you. Before attempting it yourself you and the person who is massaging you should be shown how to do self massage. Your physiotherapist or nurse will be able to show you or your partner the technique.
For this massage the skin is moved by gentle, circular movements of your fingers (if the skin becomes reddened the movement is too hard).
-Place your fingers, relaxed, on either side of your neck at position 1.
-Gently move the skin back and down.
-Repeat 5 times at position 1 and 2.
-At position 3 (dip behind the collar bone) use a gentle inward scooping movement.
-Repeat 5 times.
-Work 5 circles up into the armpit on the non swollen side.
-The aim of this massage is to stimulate the lymph channels on
the chest and back to clear the way ahead so excess fluid can drain away.
-The skin is always moved across in the direction of the unaffected side. Move the skin across and then release the pressure to allow the skin to come back. Repeat this technique with a slow and gentle rhythm.
-Start the massage at position one and repeat 5 times.
-Repeat the same movements at position 2, then 3, then 4.
-Use the same technique as before, gentle movements of the skin towards the armpit on the same side. The aim is to clear a path ahead of the affected limb to allow excess fluid to drain away. Move from position 1 in the armpit through 2 and 3 to the groin at position 4. Repeat 5 times in each position.
-The diagrams are intended as a reminder for you when you are doing your massage but as we said earlier you should be shown the proper technique for self massage before you do it yourself.
Hand-held massages are particularly useful for people who have restricted movements of their hands, perhaps due to arthritis. They are not as effective as using your hands, because it is not easy to achieve such a light touch. They are available at most large chemists and some electrical shops.
There are some basic rules to follow:
Deep breathing exercises
Before and after massage, deep breathing exercises can help to stimulate lymphatic drainage. Use the following simple exercises:
Do the deep breathing exercises five or 10 times and then have a
short rest before getting up.
Compression pumps are needed by only a few people with lymphoedema. They are used in some centres with MLD and shown how to use the pump beforehand and your physiotherapist or nurse will be able to answer any questions you have about it.
If you are advised to use a compression pump, see if it is possible to borrow a pump from your local hospital. They are expensive to buy.
Before you use the pump, it is very important to have a MLD massage to areas such ads the neck, shoulder and chest (if it is your arm that is affected) and lower part of the trunk, buttocks and groin (if your leg is affected). This is to drain lymph from these areas. Otherwise, the pump will force more lymph fluid into these areas, as it moves away from your swollen arm or leg. This could lead to other problems if too much fluid builds up.
The pump operates by electricity from the mains, and is made up of a power unit and an inflatable sleeve, into which you place your arm or leg. Various sizes of leg sleeve are available. When you switch on, the sleeve will gradually pump up for a few minutes, then deflate for a few minutes. Low pressures are always used (never more than 40mm Hg). Do not use higher pressures than this, as that does not help to reduce the swelling and can make it worse.
While you are using the pump you should remove your compression sleeve or stocking but put it back on as soon as you have finished.
Hints for using a pump
If your are overweight, your swelling is going to be far more difficult to treat. You will find that if you gain weight, your swollen limb will become more of a problem. Sleeves or stockings will not fit well or be as effective if there is a lot of fatty tissue. For these reasons, it is helpful to keep a check on your weight and seek help with a calorie-controlled diet if you are too heavy. There may be a hospital dietician or someone at your general practice who can advise you.
Some people find that certain foods, such as spicy foods, can cause an increase in swelling; other people have found the same with alcohol.
St. Luke's Crypt, Sydney Street, London SW3 6NH
Tel. and Fax: 0207 3514480. Provides practical help and information for people with lymphoedema and access to local support groups. Bi-annual newsletter
P.O. Box 1059, Caterham, Surrey CR3 6ZU
Tel. and Fax 01883 330253. Group mainly for health professionals, but open to anyone interested. Runs conferences and study days. Newsletter. Register of treatment centres.
Further general information Your doctors and specialist nurses are in an ideal position to give you relevant information on your disease and treatment as they know your individual circumstances. Cancerbackup has a help line (0808 800 1234) and a prize winning video available in English, Italian, Urdu, Bengali, Gujarati & Hindi explaining Radiotherapy & Chemotherapy. Cancernet.co.uk has over 500 pages describing cancer, its management, practical tips and tool which patients, their carers and their doctors have found helpful during the cancer journey.