Lymphoedema. What is it? How do you get it?
How did I get mine? I got it as a side effect of radiotherapy, along with cellulitis. It is called “secondary lymphoedema” when it is a side effect of radiotherapy. It is very painful for me, and although I was originally told it is only temporary, I have since found out once you have it, then it is for ever. It can be managed though which is a good point!
Another wonderful part of the treatment, that I am only finding out about post-treatment. Still it could be a lot worse, so I keep telling myself.
You will also find some more website links on the support page of the Furry Monkey website about Lymphoedema. There are also some useful forums on some of the websites where you will find lots of friendly folk who are suffering the same as you. They are very knowledgeable and it’s worth asking them questions if you are worried about anything connected with Lymphoedema.
A lovely couple of friends from Oz (thanks John and Brenda!) sent me the following link “Cure hope rises for lymphoedema” – let’s hope human trials start soon!! However if the link doesn’t work (it seems like it’s a newspaper site so they could disappear!) then the text is copied here for your information. Fingers crossed!
I’m working on more sections, but if you’d like to add anything, then please send it to me!
What is Lymphoedema?
Lymphoedema is a long term swelling of one part of the body, usually a limb, which is caused by failure of part of the body’s lymphatic drainage system. If a lymph channel becomes blocked, perhaps by a tumour or because of damage caused by radiotherapy or surgery, the lymph fluid is unable to pass along the lymph vessel. Excess tissue fluid builds up and causes swelling, because it is unable to drain away through the lymph vessels as it normally would. The medical term for swelling is oedema (pronounced edeema) – which gives rise to the name lymphoedema.
This may be because the lymphatic system has failed to develop properly, causing swelling, which can be present at birth, or may not develop until later in life, this is called Primary Lymphoedema and can run in families. People can also be at risk when the lymphatic system has been damaged or blocked by tumour, surgery, radiotherapy, accident or serious infection. This type is called Secondary Lymphoedema.
It is not possible to replace lymph nodes that have been removed or lymphatic vessels which have been damaged. Once lymphoedema has developed it cannot be cured permanently. However, it can usually be reduced and controlled.
Lymphoedema is a condition which may affect anyone, at any time. However, it occurs with greater frequency in females. It is often distressing, can be debilitating, and is often also painful, showing itself as swelling of the limbs and body. The most common form of lymphedema is in a limb, but it can affect any part of the body or internal organs. It is far more common than is accepted by the medical profession.
What does the lymphatic drainage system do?
The lymphatic system is part of your body’s circulatory system and a vital part of your immune system. It helps to fight infection but just as importantly it is responsible for cleansing your tissues and maintaining a balance of fluids in your body.
The body’s tissues are bathed in a clear fluid that leaks out of the small blood vessels to nourish and cleanse them. The lymphatic drainage system carries away the excess water, protein and waste products from the tissues through a network of fine channels. It filters the lymph fluid through the lymph nodes, before emptying the cleansed fluid back into the blood stream.
If your lymph vessels or nodes become damaged or are removed, then lymph fluid cannot move freely through the system. The fluid then builds up and causes swelling in the affected area.
Is usually determined from birth and is often due to the under-development of the lymphatic system – usually too few lymphatics, but there may also be cases where the lymph vessels be adequate in number, but are very dilated and do not pump properly.
It can develop at any stage of life, but is most likely to occur at adolescence. It is less likely to start later in life Primary lymphoedema usually worsens quite slowly.
Lymphoedema can occur at any time, once the lymphatics are damaged. Sometimes, it can start immediately and lasts for life; the oedema may occur for a while then disappear, and may or may not re-occur; or it may appear years after the event in which the lymphatics are damaged, and can be triggered by a seemingly trivial event, such as sunburn, carrying heavy weights or a long flight.
The three main types are:
Hereditary Lymphoedema can be divided into three groups:
Usually occurs where the lymphatic system becomes impaired following surgery and/or radiotherapy (as in cancer treatment) or as a result of infection, severe injury, burns or trauma. It may worsen quite rapidly.
In the Western world the commonest cause of secondary lymphoedema is the treatment of malignant tumours. In such cases it is important to remove, by surgery, some of the lymph nodes in the affected area. For example, from the armpit (axilla) of patients with breast cancer. This causes damage to the lymphatic system and lymphatic drainage can be impaired.
Lymphedema can occur at any time, once the lymphatics are damaged. Sometimes, it can start immediately and lasts for life; the oedema may occur for a while then disappear, and may or may not re-occur; or it may appear years after the event in which the lymphatics are damaged, and can be triggered by a seemingly trivial event, such as sunburn, carrying heavy weights or a long flight.
The Different Stages of Lymphoedema
The severity of the lymphoedema can increase, particularly without treatment or complliance with treatment. Without treatment, the skin in the affected area may become more susceptible to bacterial skin infections (cellulitis) and to fungal skin infections. These infections can affect the lymphatic system by damaging the small lymphatic vessels and worsening the lymphoedema.
Once any swelling has started to develop, the accumulation of the lymph fluid in the tissues causes cells to be activated that produce new connective tissue. This is called Fibrosis.
The tissue is initially soft and then can become increasingly hard. This is known as sclerosis.
Depending on the severity, lymphoedema can be dubdivided into different stages:
Lymphoedema Stage 0
There is some damage to the lymphatic system, but it has not yet become apparent. The lymphatic system is still coping by means of compensatory mechanisms, so swelling is not yet present.
Lymphoedema Stage 1
A soft swelling (oedema develops in the affected area. The swelling can be indented by applying pressure to the skin. Oedema appears only towards the end of the day and can partially or completely resolve when the limb is raised (elevated).
Lymphoedema Stage 2
The swelling is characterised by the presence of excess connective tissue (fibrosis). The swelling persists and elevation of the limb has no effect on the swelling.
Lymphoedema Stage 3
The swelling is large and the texture of the skin may change and be associated with complications such as skin lesions with warty outgrowths (papillomatosis) and small vesicles (cysts). Sometimes large skin bulges are present.
How will Lymphoedema affect me?
Lymphoedema can affect you in many ways. As your doctor or nurse from the hospital team will know your medical history if you think a problem you are having is caused by lymphoedema ask them first.
Once damaged the lymphatic system can never recover fully although not all people at risk develop lymphoedema.
In more severe Lymphoedema the skin may become broken and the colourless lymph fluid can leak out onto the surface. This is because too much fluid is building up in the tissues.
Please remember though, most people with lymphoedema only have mild symptoms.
What does Lymphoedema feel like?
Unfortunately, there is a general lack of medical knowledge and expertise in giving an early diagnosis and correct referral for treatment. Too often, doctors will claim that it is a trivial condition, which a person has to live with. In fact, Lymphoedema may often have an immense impact on a person’s quality of life.
Someone with Lymphedema will usually feel any of the following symptoms:
What treatment can I have and how quick will I see any results?
Treatment for lymphoedema is aimed at relieving discomfort by reducing swelling and to help prevent further build-up of fluid.
Experts in this country and throughout the world all recommend that lymphoedema is controlled and managed by:
Successful management of lymphoedema needs time to be set aside each day for exercise, skin-care etc., but it does pay off if you persevere. Sadly there are no easy solutions, the fluid cannot be drained off and water tablets do not help with this type of swelling.
These therapies need to be done daily to get the best results. You will be shown how to carry them out for yourself at home. There is a great deal that can be done to help lymphoedema, but it is a long-term problem.
Although the swelling can usually be reduced, there is always a risk of it coming back. It may take several weeks or months before you notice any real improvement in the swelling, but an affected limb should become easier to move within a few weeks.
Helping to reduce the risk of skin infection
Pressure sleeves and stockings
How do they work?
Compression plays an important part in the treatment of lymphoedema. Not only goes the garment increase the pressure within the tissues thus encourages lymph fluid to be redistributed and drained, but more importantly, it reinforces the skin making a firm wall to the limb and so increases the efficiency of the muscular pumping systems within the limb. This encourages lymph fluid to flow.
Check the following when using sleeves and stockings:
The use of a small amount of talcum powder on the skin prior to putting on the sleeve/stocking will assist with fitting the garment, specially if the limb has been washed.
You may experience discomfort during the first 24 hours of wearing compression garments. However, this is almost always transient.
Arm sleeves/mittens/stockings should be removed when retiring to bed unless you have been advised otherwise.
Skin hygiene is important. You should use moisurising creams on the arm or leg. It is best applied when you have taken the garment off in the evening. It should NOT be applied prior to putting the garment on.
If you experience any of the following whilst wearing the garments, please contact your Doctor or Lymphoedema Clinic.
The sleeve/stocking should be removed under these circumstances.
The sleeves/stocking loose their elasticity and support over time and it is recommended that they are renewed every six months.
Sport and Exercise
Exercise is important. Lymphatic fluid drainage can be improved with physical exercise and exercise may help prevent the onset of lymphoedema. Your physiotherapist or nurse specialist can offer advice on special exercises for you to perform.
Diuretics are not recommended for the treatment of lymphoedema. They are unsuitable for long-term medication because of the increased risk of fibrosis in the tissues. However, if you suffer from any other illnesses such as high blood pressure, it may be essential to continue to take them.
Special Recommendations for Patients with Lymphoedema of the Arm
Special Recommendations for Patients with Lymphoedema of the Leg
Holidays and travel
© University College London Hospitals
Cure hope rises for Lymphoedema
By Amanda Dunn Health Reporter
August 16, 2003
Melbourne scientists have discovered a potential cure for the chronic, fluid-retaining condition lymphoedema by replicating the way the body grows new lymphatic vessels. By mimicking the way genes produce the proteins VEGF-C and VEGF-D, which make lymphatic vessels grow, researchers at the Ludwig Institute for Cancer Research in Parkville have been able to generate new lymphatic vessels in animals.
The new vessels transported the fluid that causes swelling in lymphoedema away from the tissue, reversing the condition. Researchers Marc Achen and Steven Stacker said the next step would be to try this method on humans, in the hope that it might replace damaged lymphatic systems.
The lymphatic system transports fluid around the body, cleanses body tissue and filters dangerous bacteria, for example, the swelling that occurs when someone twists an ankle is resolved by the lymphatic system. When it has cleansed the tissue, the fluid returns to the bloodstream, but in people with lymphoedema that does not occur, causing chronic, and often uncomfortable, swelling in the limbs.
While one in 6000 Australians is born with the condition, it can be caused as a result of surgery. It is commonly found in women who have had breast cancer surgery, as the lymph nodes are often removed to prevent the cancer spreading. The manager of the lymphoedema clinic at the Mercy Hospital for Women, Penelope Sanderson, said the research was “absolutely wonderful” news for lymphoedema sufferers, because the condition was now incurable, and not well understood.
People with lymphoedema suffered socially as well as physically from the condition, she said, as they felt embarrassed by their swollen limbs. Lymphoedema sufferers were prone to the skin infection cellulitis, for which they had to be monitored. Treatments now include compression garments to move the fluid away from the swollen area and special exercises. Dr Achen said the research team would look at how well the growth of the new lymphatic vessels could be controlled, and at starting human trials.