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 Chronic Swelling in the Arm advice.



The information on this page is mainly for people who have lymphoedema following treatment for breast cancer.



What lymphoedema is

Lymphoedema is pronounced lim-fo-dee-ma. It is chronic swelling, usually of an arm or leg. It happens 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 does not 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.

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. If lymphoedema is not treated, it will get worse. It can be painful and make it difficult to move your arm.

Lymphoedema is becoming less common because many specialists now use a procedure called sentinel lymph node biopsy so 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 as 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

- Not letting anyone take blood, give injections or take your blood pressure from the treated arm, unless it is an emergency and there is no other option

- 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 will increase the temperature of your skin, like 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.

Remember Ė lymphoedema can start at any time after you have been treated for breast cancer.

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 symptoms such as swelling and pain can be treated. 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 leg you should see a doctor or nurse. For example, you may notice that your watchstrap, rings or clothes are getting tighter.

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

- An elastic sleeve to wear, from the wrist to the top of your arm

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. You need to have your arm or leg measured and properly assessed. Wearing a badly fitting elastic sleeve or stocking can make the swelling worse. The British Lymphology Society have a register of lymphoedema practitioners.

Your nurse or lymphoedema specialist will also teach you how to do gentle exercises at home to help prevent or decrease swelling in your limbs. You will get the most benefit from the exercises by wearing your stocking or 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. But 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.

Doctors have been looking at a new way of treating lymphoedema after radiotherapy. This is called hyperbaric oxygen therapy (HBO). They think that high pressure oxygen treatment can help improve the flow of lymph and so reduce swelling. The patients in the trial have hyperbaric oxygen treatment in a special chamber that contains compressed air. A qualified attendant sits in the chamber, along with up to 6 other patients. While in the chamber they breathe in 100% oxygen through a special hood. An early trial of HBO has taken place in the UK. This trial is now closed and we are waiting for the results.

Other ways of helping to control the symptoms of lymphoedema include

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 be less effective. You will either need to be fitted for new ones, or to lose weight. If you would like some help with healthy eating tips or losing weight, ask your doctor to refer you to your hospital dietician. There is information about the right weight for you in CancerHelp UK.

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 limb

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

- Donít carry heavy shopping or other things with your affected arm Ė ask for help even if it makes you feel uncomfortable

- Donít repeatedly stretch your arm Ė for example, by hanging out washing on a clothes line

- Wear your watch or any other jewellery on the arm that is not affected

- Donít cross your legs when you are sitting down

- Donít 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, then tough treatment, it may feel too much to have to cope with lymphoedema. It is not easy.

Many people find it very hard, so do 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 down about what has happened, then do let someone know. You might find it helpful to read the section in CancerHelp UK on low mood, anxiety and depression. This includes information on how to help yourself cope when you feel low.