Lymphoedema
Lymphoedema can develop months or even years after cancer treatment. If you are living with lymphoedema we have information and support for you.
What is lymphoedema?
Lymphoedema is swelling that develops because of a build-up of lymph fluid in the body’s tissues. The lymphatic system usually drains the fluid away. Lymphoedema happens when the lymphatic system is not working properly. This may be because it is damaged by cancer, or treatment such as surgery or radiotherapy.
Lymphoedema can develop months or even years after cancer treatment. It can happen anywhere in the body, but the most common place for lymphoedema to develop is the arm or leg. It can also happen in the chest, head and neck, or genitals.
Not all swelling is lymphoedema. Something else, like a blood clot, could be causing the swelling. You may need tests to find out what is causing it. The tests you have will depend on what part of the body is swollen. You may have scans, to see whether a cancer that is affecting the lymph nodes is causing the lymphoedema.
Your cancer doctor or specialist nurse will advise whether you are at risk of lymphoedema. There are things you can do to reduce the risk of lymphoedema developing, and they can show you how to check for any changes. They can also refer you to your local lymphoedema service for assessment.
Booklets and resources
Signs and symptoms
Lymphoedema can happen anywhere in the body, including the arms, legs, head and neck, chest area and genital area. The symptoms vary depending on how mild, moderate, or severe the lymphoedema is.
To reduce the risk of lymphoedema getting worse, you should ask your cancer doctor or specialist nurse for advice as soon as you notice any of the following:
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Swelling
Your clothing, shoes or jewellery (rings or watches) may feel tighter than usual, even before you notice any swelling.
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Changes in how the limb feels
The limb (or part of the limb) may feel heavy, tight, full or stiff. If the lymphoedema is severe, the swelling may change the shape of the limb.
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Skin changes
Skin in the affected area may feel tight, stretched or a thicker texture. Sometimes it can be dry, flaky, rough or scaly. In later stages, the skin tissue often hardens or becomes more fatty. There may also be more complex skin problems.
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Aching in the affected area
You may feel some discomfort or aching where the swelling is.
Swelling, aching and redness in the arms or legs can also be symptoms of a blood clot. It is important to tell your doctor or nurse straight away if you have any of these symptoms. If you cannot speak to your doctor, call the NHS urgent advice number, 111.
Fluid leaking from the skin
Sometimes, if lymphoedema is severe, lymph fluid may leak from the skin. This is called lymphorrhoea. You should see a lymphoedema specialist, GP or district nurse as soon as possible if you have lymphorrhoea. They will try to stop the skin from leaking using bandages or compression garments.
Causes of lymphoedema
Not everyone with lymphoedema has had cancer. But you may develop lymphoedema because of the following:
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Surgery to remove lymph nodes
Surgery interrupts the normal flow of the lymphatic system, causing fluid to build up in the affected area. The risk is lower if you only had 1 or 2 lymph nodes removed (sentinel lymph node biopsy) than if you had a group of lymph nodes removed.
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Radiotherapy to the lymph nodes
Radiotherapy can cause the tissue in the affected area to harden. This blocks the flow of lymph fluid.
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Cancer cells spreading to the lymph nodes
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A cancer that is pressing on the lymph vessels
This causes a blockage in the lymph nodes close by, that leads to a build-up of fluid.
Not everyone who has lymph nodes removed, or radiotherapy to the lymph nodes, will get lymphoedema. But there is a risk of developing it.
Lymphoedema after cancer treatment
Lymphoedema can develop in the following areas:
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Arm
This may be after surgery or radiotherapy to the armpit to treat breast cancer or melanoma.
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Leg
This is if cancer or its treatment affects the lymph nodes in the pelvis or groin area. This may happen after surgery or radiotherapy for gynaecological cancers (cancer of the womb, cervix, ovary or vulva), anal cancer or prostate cancer. Or it can happen after treatment to the lymph nodes in the groin for melanoma.
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Breast or chest
This is after breast cancer treatment.
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Pelvic area and genitals
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Face, head and neck
This is after surgery or radiotherapy to lymph nodes in the neck.
If you have surgery, it is common to get swelling (oedema) near the surgery scar in the first few days after the operation. This can take several weeks to go away completely. This type of swelling is not the same as lymphoedema, which usually happens a few months or years later.
If you are worried about any swelling, always talk to your cancer doctor or specialist nurse.
Reducing your risk of developing lymphoedema
We do not know why some people develop lymphoedema after cancer treatments and others do not. If someone is already at risk of lymphoedema, having a skin infection may cause swelling that leads to lymphoedema. Or it may be that some people’s lymphatic systems do not work as well as others.
There are things you can do to try to reduce your risk of developing lymphoedema.
Lymphoedema diagnosis
If your cancer doctor, specialist nurse or physiotherapist thinks you have lymphoedema, they should refer you to a lymphoedema specialist. Health professionals with specialist knowledge in treating lymphoedema may include:
- specialist lymphoedema nurses
- breast care nurses
- specialist doctors
- physiotherapists
- occupational therapists.
Organisations such as the Lymphoedema Support Network and the British Lymphology Society can advise about specialist services near you. The Lymphoedema Support Network also has advice for GPs who are having difficulty referring to a lymphoedema service.
Not all swelling is lymphoedema. Sometimes you need tests to make sure nothing else is causing the swelling, like a blood clot. You may have scans to see whether the lymphoedema is caused by a cancer affecting the lymph nodes.
Your lymphoedema specialist
The lymphoedema specialist will confirm the diagnosis and assess how much the lymphoedema is affecting you.
Your specialist will:
- ask you about your medical history
- check your skin and look for any changes
- assess the size and shape of the area
- assess how the tissue feels under the skin
- measure your limb and compare it to the unaffected limb
- check your movement and ability to do everyday things.
If it is difficult to diagnose lymphoedema, you may have other tests. Your cancer doctor or specialist nurse will talk to you about what tests you might need depending on your symptoms.
Your lymphoedema specialist should always do a full assessment. This is so they can decide the best way to manage and treat the lymphoedema.
Part of the treatment for lymphoedema is learning things you can do to manage it yourself.
Treating and managing lymphoedema
If you have lymphoedema, there are several treatments that can help you to manage and control it.
Treatment for lymphoedema aims to reduce and control swelling, help with discomfort, and stop fluid build-up.
The main treatments for lymphoedema are:
- skin care
- exercise and keeping active
- positioning of the limb or area
- compression
- a type of massage called lymphatic drainage.
You may have other treatments, including taping, surgery or laser therapy, but these are less common.
If you have lymphoedema you will also be advised to avoid pressure on the area from things such as tight clothing or jewellery.
You will be taught how to manage the lymphoedema yourself. This is to help you have more control over your treatment and reduce your number of visits to hospital.
We have more information on treating and managing lymphoedema. There is also information on managing problems that are caused by lymphoedema.
Living with lymphoedema
Because lymphoedema is a long-term (chronic) condition, it is important to stay involved in your lymphoedema care.
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Your follow-up
It is important to have regular check-ups with your lymphoedema specialist or doctor. Here are some things that might happen in your appointments:
- The specialist will check the skin and tissues in the swollen area.
- The specialist may take photographs of the area to monitor progress.
- Depending on the swelling, the specialist may might think about changing the size of your compression garment.
- Your specialist may measure your arm or leg if those areas are affected. It may could be helpful for you to keep a progress chart, where you can write down the measurements each time.
Try to follow the advice your lymphoedema specialist gives you about managing and treating the lymphoedema. When your specialist has reduced your lymphoedema as much as possible, they may discharge you. After this, you will manage it yourself at home. It is always possible to get referred back to the specialist if things change.
If you have any worries, tell your lymphoedema specialist or doctor. You should be able to contact them between appointments if you have any problems.
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Keeping to a healthy weight
If you have lymphoedema, or are at risk of developing it, it is important to try and stay a healthy weight. Being overweight puts more stress on the lymphatic system. This makes lymphoedema harder to manage and treat. It is also more difficult to put compression garments on and they may not fit as well.
It can be difficult to lose weight and keep to a healthy weight. Sometimes, people find they have gained weight because of treatment. For example, you may gain weight if you have had treatment for breast cancer.
If possible, try to keep your weight within the normal range for your height. Your GP or practice nurse can tell you what your ideal weight is. You may find it helpful to ask your GP for advice and support. They may refer you to a dietitian.
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Travel and lymphoedema
If you are planning to go away on holiday, you may worry about managing your lymphoedema. Planning ahead for your trip should help you manage any possible problems and enjoy your time away.
It is important to maintain your usual routine for managing your lymphoedema. But there are other things you need to be careful of when travelling with lymphoedema.
You can also contact the Lymphoedema Support Network. It has a more detailed guide on holidays and travel for people with lymphoedema.
It can be hard to follow all the advice and do all the treatments that your lymphoedema specialist gives you. It can take up a lot of your time, and you may need extra support from friends and family. Contacting others through a support group or our Online Community can also help keep you motivated.
Your emotions and getting support
You may feel a range of emotions about lymphoedema. Although it is not a life-threatening condition, lymphoedema is an ongoing problem that changes your body. You may feel self-conscious and embarrassed about these changes, or responsible in some way.
The physical and emotional effects of lymphoedema may affect how you see and feel about your body (body image). Talk to your nurse if this is a concern for you. There are different things that can help to improve body image changes.
Lymphoedema and its treatment may cause physical and emotional changes that can affect your sex life. You can read more about coping with these in our information on cancer and sex.
Some people find joining a support group helpful. The nurses at your hospital can give you information about support groups in your area. They may be helpful if you do not feel able to talk about your feelings with people around you.
If you feel anxious or sad a lot of the time, talk to your doctor or nurse. You should also talk to them if think you may be depressed. They can often refer you to a counsellor or psychologist for specialist help.
Macmillan is also here to support you. If you would like to talk, you can do the following:
- Call the Macmillan Support Line for free on 0808 808 00 00.
- Chat to our specialists online.
- Visit our lymphoedema forum to talk to other people who have been affected by lymphoedema, share your experience, and ask an expert your questions.
About our information
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References
Below is a sample of the sources used in our lymphoedema information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk
Skin care for people with lymphoedema. British Lymphology Society 2022.
O’Donnell TF et al. Systematic review of guidelines for lymphedema and the need for contemporary intersocietal guidelines for the management of lymphedema. Journal of Vascular Surgery: Venous and Lymphatic Disorders 2020.
The Lymphoedema Support Network
The British Lymphology Society
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Reviewers
This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Chief Medical Editor, Professor Tim Iveson, Consultant Medical Oncologist.
Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.
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