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Lymphoedema after breast cancer treatment

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This page tells you about lymphoedema after breast cancer treatment. There is information about

 

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Lymphoedema after breast cancer treatment

Lymphoedema (pronounced lim-fo-dee-ma) means long term (chronic) swelling. Cancer or its treatment can affect the fluid drainage channels of the lymphatic system. Fluid then doesn’t drain in the normal way, so the area swells.

After breast cancer treatment such as removal of lymph nodes or radiotherapy to the armpit, about 1 in 5 people will have lymphoedema of the arm. Some people get fluid build up in the breast area but this is not so common. If lymphoedema is not treated, it will get worse. It can be painful and make it difficult to move your arm.

Preventing lymphoedema

After treatment, some things can increase your risk of lymphoedema. These include infection in a cut or graze, insect bites, severe sunburn, and putting too much strain on your arm too early. Avoiding these things can reduce the risk of lymphoedema. You will need to do this for the rest of your life. It is not clear whether having injections or blood taken in the arm on the same side as your surgery can increase the risk of lymphoedema. 

Treating lymphoedema

Lymphoedema cannot be completely cured. But specialists can treat the symptoms. They use elastic sleeves or bandages, or special massage and exercises. They show you how to use the sleeves and do the exercises. It may take a few weeks to work. At the first signs of swelling in your arm you need to see a doctor or nurse. Coping with lymphoedema isn’t easy, but there are lots of organisations offering help and support.

 

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What lymphoedema is

Lymphoedema is pronounced lim-fo-dee-ma. It means long term (chronic) swelling. It can happen because cancer, or the effects of treatment, block the normal fluid drainage channels of the lymphatic system. Fluid called lymph begins to collect in an area and doesn't drain in the normal way. So the area swells. The information on this page is mainly for people who have lymphoedema following treatment for breast cancer. People with other cancers who have lymphoedema can look at our section about lymphoedema.

About 1 in 5 people (20%) will have lymphoedema of the arm after breast cancer treatment that includes surgery to remove lymph nodes or radiotherapy to the lymph nodes in the armpit. Some people have lymphoedema in the breast area but this is less common. If you have no treatment for the lymphoedema, it will get worse. It can be painful and over time can make it difficult to move your arm.

Lymphoedema is becoming less common because many specialists now use a procedure called sentinel lymph node biopsy (SNB). SNB means that they can just remove a few lymph nodes and avoid damaging lymph channels. They also try to avoid giving women both surgery and radiotherapy to the armpit because this combination greatly increases the risk of causing lymphoedema.

 

Preventing lymphoedema

After treatment, some things can increase fluid collection in your arm and increase your risk of lymphoedema. These include

  • Infection in a cut or graze
  • Insect bites
  • Severe sunburn
  • Putting too much strain on your arm too early

So you can help to prevent lymphoedema by

  • Not using your arm for anything heavy until you are told you can
  • Wearing gloves when gardening or doing housework
  • Taking care when playing with pets
  • Using insect repellent and high factor sunscreen
  • Using nail clippers rather than scissors and not pushing your cuticles back
  • Using an electric razor rather than a manual one if you shave under your arms
  • Avoiding anything that increases the temperature of your skin, such as very hot baths or showers, sitting too close to a heater, saunas, steam rooms and sunbeds
  • Using a non scented moisturiser or oil on your skin each day to help it stay moist and supple
  • Using a thimble when sewing
  • Continuing to do the arm and shoulder exercises you were taught after your surgery

If you get a cut or scratch on your arm, however small, wash it well and cover it until healed. If you see any redness or swelling around the cut, see your GP straight away. You may need antibiotics.

It is not clear whether having blood taken in the arm on the same side as your surgery, or having injections, can increase the risk of lymphoedema. So it is advisable to avoid these.

Remember that lymphoedema can start at any time after you have had breast cancer treatment. It is important to take these precautions for the rest of your life.

 

Treating lymphoedema

If you get lymphoedema because of your cancer or its treatment, it cannot be completely cured. But specialists can treat symptoms such as swelling and pain. Treatment for lymphoedema aims to reduce swelling and prevent the fluid building up again. The treatment takes a while to show results. You should notice the swelling going down within a few weeks. But it can come back, so you will always need to be careful and get some help if you have problems.

At the first signs of swelling in your arm or breast you should see a doctor or nurse. For example, you may notice that your watch strap, rings or clothes are getting tighter.

Treatment for your lymphoedema aims to push excess fluid back out of your arm or breast area. There are different ways of doing this. You may have

  • An elastic sleeve to wear, from the wrist to the top of your arm (to reduce arm swelling)
  • An elasticated vest (to reduce breast swelling)
  • Your arm bandaged up with a particular type of stretchy bandage that your lymphoedema specialist puts on
  • A special type of massage called manual lymphatic drainage (MLD)
  • Exercises that help the fluid to drain from your arm

All these are very specialist treatments. Ask your breast care nurse, surgeon or GP to refer you to a lymphoedema specialist. They will measure your arm or breast and assess you properly. Wearing a badly fitting elastic sleeve can make arm swelling worse so it is important to get specialist treatment. The British Lymphology Society have a register of lymphoedema practitioners.

Exercises

Your nurse or lymphoedema specialist will teach you how to do gentle exercises at home to help prevent or decrease swelling in your arm. You will get the most benefit from the exercises by wearing your sleeve when you are doing the exercises. Heavy lifting or too much repetitive exercise could make lymphoedema worse. So be sure to stop exercising if your skin is starting to become red, hot and sweaty. 

A US trial in 2009 tried a programme of progressive weight lifting for arm lymphoedema. In progressive weight lifting, the weight and number of exercises is increased very slowly. The researchers found that this type of carefully supervised exercise can help to stop lymphoedema getting worse and can help to reduce symptoms such as discomfort or pain in the affected arm in some women.

Eating a healthy diet and staying at a healthy weight

If you are overweight it is much more difficult to control limb swelling. If you begin to put on a bit of weight, you will notice that your treatment sleeves will not fit as well as they used to, and will not work so well. You will either need to have fittings for new ones, or lose weight. If you would like some help with healthy eating tips or losing weight, ask your doctor or nurse for information. We have information about the right weight for you. And this website also has information about healthy eating.

Some people have said that spicy foods and alcohol increase the swelling in their affected limb. Some people find that travelling by plane seems to increase the swelling but there is no research evidence to prove this.

Positioning your affected arm

You can help to prevent further swelling of your affected arm by positioning it carefully. When you are sitting down, rest your arm up on a table, cushions or pillows rather than hanging it down by your side. Other tips are

  • Don’t carry heavy shopping or other things with your affected arm – ask for help even if it makes you feel uncomfortable
  • Don’t repeatedly stretch your arm – for example, by hanging out washing on a clothes line
  • Wear your watch or any other jewellery on the arm that is not affected
  • Don't have blood taken from the affected arm
 

Your feelings and getting support

You may feel very angry, upset and embarrassed by the swelling in your arm. After going through a diagnosis of cancer, and then the treatment, it may feel too much to have to cope with lymphoedema. It is not easy. Many people find it very hard, so it is important to give yourself time to adjust to what has happened.

If your arm is very swollen, it can change your whole image of yourself and may affect your self esteem. You may feel less attractive or find it more difficult to go out and socialise. With time things get easier but it does not always help to hear this at first.

Some people find that it helps to talk to someone else who has been through similar experiences. Not everyone wants to do this or feels they need to. But if you want to talk to someone else, there are lots of organisations offering help and support to people with lymphoedema. The organisations can put you in touch with someone else who has lymphoedema. It also helps to talk to your friends and family.

If you are feeling very upset and sad about what has happened, then do let someone know. You might find it helpful to read the section about anxiety and depression. This includes information about how to help yourself cope when you feel sad.

If you want to find people to share experiences with online, you could use Cancer Chat, our online forum.

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Updated: 31 July 2014