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, or if it is damaged by cancer or cancer treatment.

Lymphoedema can develop months or even years after cancer treatment. It can happen anywhere in the body, but the most common places for lymphoedema to develop are in the arm or leg.

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. You may have scans, to see whether a cancer that is affecting the lymph nodes is causing the lymphoedema.

It is not possible to repair the lymphatic system once it has been damaged. So lymphoedema does not completely go away with treatment. This is known as a chronic condition. But it is usually possible to reduce and control the swelling. If the swelling is small, it may even return back to normal size. The earlier you start treatment, the more successful it is likely to be.

You will have a lymphoedema specialist who will assess you and suggest ways to treat and manage it. Part of the treatment for lymphoedema is learning things you can do to manage it yourself.

Signs and symptoms

The symptoms vary depending on how much lymphoedema there is and whether it is mild, moderate or severe. Lymphoedema can happen anywhere in the body, including the arms, legs, head and neck, chest area and genital area.

To reduce the risk of lymphoedema getting worse, you should ask your doctor or specialist nurse for advice as soon as you notice any of the following:

  • Swelling

    You may notice your clothing, shoes or jewellery (rings or watches) feeling tighter than usual, even before you see any swelling.

  • Changes in sensation in the limb or area

    The limb or area may feel heavy, tight, full or stiff. If the lymphoedema is severe, the swelling may change the shape of the limb.

  • Skin changes

    The affected area may feel tight, stretched or a thicker texture, and 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.

  • Aching in the affected area

    You may feel some discomfort or an aching sensation where the swelling is.

Fluid leaking from the skin

Sometimes, if the lymphoedema is severe, lymph fluid may leak from the skin. This is called lymphorrhoea. You should see a lymphoedema specialist as soon as possible if you have lymphorrhoea. They will try to stop the skin from leaking.

Your lymphoedema specialist

If your doctor, specialist nurse or physiotherapist thinks you have lymphoedema, they should refer you to a lymphoedema specialist. The lymphoedema specialist will then confirm the diagnosis.

Health professionals with specialist knowledge in treating lymphoedema may include:

  • specialist lymphoedema nurses
  • breast care nurses
  • doctors
  • physiotherapists
  • occupational therapists.

The lymphoedema specialist will assess how much the lymphoedema is affecting you. If it is difficult to diagnose, you may have other tests.

Causes of lymphoedema

Not everyone who has lymphoedema has had cancer. But you may develop lymphoedema because of the following:

  • Surgery to remove lymph nodes

    Surgery interrupts the normal flow of the lymphatic system, causing fluid to build up in the affected area.

  • Radiotherapy to the lymph nodes

    Radiotherapy can cause the tissue in the affected area to harden. This blocks the flow of lymph fluid.

  • Cancer cells spreading to the lymph nodes

    This causes a blockage that leads to a build-up of fluid.

  • 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:

  • Arm

    This is after breast cancer or melanoma treatment to the armpit (surgery or radiotherapy).

  • Leg

    This is if cancer or its treatment affects the lymph nodes in the pelvis or groin area. This usually happens after surgery or radiotherapy for gynaecological cancers (cancer of the womb, cervix, ovary, or vulva) or anal cancer. Or it can happen after treatment to the lymph nodes in the groin for melanoma.

  • Breast or chest

    This is after breast cancer treatment.

  • Pelvic area and genitals

    This is after surgery or radiotherapy to lymph nodes in the pelvis. You may have this treatment for cancers of the prostate, bladder, womb, vagina, testicles, penis or rectum.

  • 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 days after the operation. This can take several weeks to go 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 doctor or nurse.

Reducing your risk of developing lymphoedema

We do not know why some people develop lymphoedema after cancer treatments and others do not. Straining the limb or having a skin infection may cause swelling in someone who is at risk of developing 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.

Treating and managing lymphoedema

Treatment for lymphoedema aims to reduce and control swelling, help with discomfort, and stop fluid build-up.

It should make the affected area less swollen, easier to move and feel more comfortable. Your lymphoedema specialist will talk to you about the right treatment for your situation. You will usually have more than one type of treatment, as they work better when used together. Sometimes, it may take several weeks or months before you notice much improvement.

To start with, you may have more regular treatment from your lymphoedema specialist. But learning how to manage lymphoedema yourself is the main part of treatment. This means you have less hospital appointments. It also gives you more control over when to do your lymphoedema treatment, so you can fit it into daily life.

Managing lymphoedema can include:

Avoiding pressure on the area

Along with treatment, your lymphoedema specialist will also advise you to avoid pressure on the area. This is because it can affect the flow of lymph fluid. This depends on which part of the body is affected.

If possible, you should avoid:

  • having your blood pressure taken in the affected arm
  • wearing tight jewellery such as rings, watches, bracelets, ankle bracelets or toe rings
  • wearing tight clothing such as tops with tight armholes, waist bands or bra straps.

Difficult to treat areas

Your lymphoedema specialist will explain the best way of managing lymphoedema in areas of the body that are more difficult to treat, including:

  • Breast or chest lymphoedema

    Clothes that are too tight can stop lymph fluid draining. This includes bras, vests and clothes with tight waistbands. If you wear a bra, you should make sure it is not too tight and that it fits properly. Try wearing a bra that has wide and flexible shoulder straps and bands around the chest. If you need to wear a prosthesis, try to get a lightweight one. Your specialist may give you compression bras, specialist vests or a compression sleeve. You may also have lymphatic drainage or lymphoedema taping.

  • Genital lymphoedema

    It is important to look after your skin and keep it clean as skin infections can be more common in the genital area. You will usually have MLD or SLD and may have specially made compression garments. Sports clothing or shapewear underwear containing Lycra® may also help. Pelvic floor and tummy (abdominal) exercises, combined with deep breathing exercises can help reduce swelling. If you have swelling in the scrotum, your specialist may give you a scrotal support. They may use bandaging if the penis is swollen.

  • Head and neck lymphoedema

    You can usually manage lymphoedema of the face, neck or head with MLD and SLD. Sometimes, you can have Kinesio® taping. You may have special, low-pressure compression garments to use in this area of the body. But you should never have compression to the neck area. You sometimes have surgery (see below) to treat lymphoedema of the eyelids.

Other treatments for lymphoedema

There are some other types of treatment, but these are new and may not be widely available. More research is needed to find out how well they treat lymphoedema. These treatments include:

  • Lymphoedema taping (Kinesio® taping)

    This is a special taping technique that is mainly used to treat sports injuries. It is also sometimes used to treat lymphoedema. The tape is made of an elastic cotton material. When the tape is stretched and stuck onto the skin, it gently lifts the top layer of skin. This allows the lymph fluid closest to the surface of the skin to flow more easily.

  • Surgical techniques

    You may have surgery for lymphoedema, but it is rare. You may have it to reduce swelling around the face or genital areas. Or you may have surgery to reduce the size of an affected limb. Doctors may also use specialised surgical techniques to move lymph nodes. You may be able to have liposuction to treat lymphoedema in limbs.

  • Laser therapy

    This treatment uses a laser to target cells in the lymphatic system. It aims to improve the flow of lymph fluid, soften hard tissue, reduce swelling and stop it from getting worse. Research is happening to find out more about its possible benefits. So at the moment, it is not widely available.

Living with lymphoedema

It can be hard to manage your lymphoedema well all the time. You may not always feel able to do everything your specialist advises. But staying as healthy and involved in your own healthcare as possible can help. Try to:

  • Keep to a healthy weight

    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.

  • Take care when travelling

    Planning ahead for your trip should help you manage any possible problems and enjoy your time away. We have a checklist that you may find helpful. You can also contact the Lymphoedema Support Network, which has a more detailed guide on holidays and travel for people with lymphoedema.

  • Talk to your employer about adjustments at work

    Your employer has a duty to make reasonable adjustments (changes) to your workplace and working practices. If you have lymphoedema this may include flexibility in working hours, extra breaks and removing challenging physical tasks from your job.

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.

Some people find joining a support group or our Online Community 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, panicky 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.

If you need support, you can also contact the Macmillan Support Line and speak to one of our cancer support specialists.

How we can help

Macmillan Grants

If you have cancer, you may be able to get a Macmillan Grant to help with the extra costs of cancer. Find out who can apply and how to access our grants.

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