This booklet is for anyone who has developed lymphoedema after treatment for breast cancer. The information will be useful whether you’ve recently developed the condition or you’ve had lymphoedema for a while.

The booklet explains what lymphoedema is, the symptoms you may have and how it can be managed.

Coping with lymphoedema can be difficult, but Breast Cancer Care’s support services are here for you.

What is lymphoedema?

Lymphoedema is swelling caused by a build-up of fluid in the body’s tissues.

The swelling most commonly affects the arm and can include the hand and fingers. Swelling can also affect the breast, chest, shoulder or the area on the back behind the armpit.

It can occur as a result of damage to the lymphatic system, for example because of surgery or radiotherapy to the lymph nodes under the arm and surrounding area. Lymphoedema only affects the side of the body that was treated.

Lymphoedema is a long-term condition, which means that once it has developed it can be controlled but is unlikely to ever go away completely.

Symptoms may be mild, moderate or severe.

Treatment aims to encourage healthy parts of the lymphatic system to work more effectively and to prevent further problems or complications. The symptoms of lymphoedema usually respond well to treatment and this means that in most cases it can be controlled.

The lymphatic system

The lymphatic system helps the body get rid of waste products and also fights infection. It’s made up of lymph nodes, also called lymph glands, and tiny tubes called lymph vessels.

The vessels transport a fluid called lymph to the lymph nodes. The lymph nodes filter out waste products and bacteria. They can also filter out cancer cells that have spread from a breast cancer.

What causes lymphoedema?

Some people develop lymphoedema after surgery or radiotherapy to the lymph nodes under the arm and surrounding area.

One, some or all of the lymph nodes under the arm are often removed during breast surgery to check whether any cancer cells are present. Lymph nodes and vessels that are damaged or removed cannot be replaced. This can affect the ability of the lymphatic system to drain fluid in this area, and lymph fluid can build up in the surrounding tissues.

It’s not fully understood why lymphoedema develops in some people and not others, but people who have more lymph nodes removed may be at a higher risk.

Occasionally lymphoedema can be due to cancer cells blocking the lymphatic system.

Lymphoedema may develop soon after surgery, radiotherapy or chemotherapy, but it can also occur many years later and may be triggered by a skin infection (cellulitis) or possibly injury.

‘I wasn’t warned that lymphoedema could happen at any time so was really surprised when it developed 12 months after surgery.’ - Kim

What symptoms might I have?

If you have lymphoedema you may experience:

·          swelling

·          tightness

·          dry skin

·          arm stiffness

·          discomfort

·          hardness or firmness (fibrosis)

Lymphoedema symptoms can vary, and many people who develop lymphoedema have only mild symptoms that can be well controlled.

Swelling

The most common symptom of lymphoedema is swelling.

Many of the techniques and treatments described in the ‘Managing lymphoedema’ section aim to reduce or manage swelling.

You may be given a compression garment to reduce swelling.

Swelling in the breast or chest after treatment for breast cancer can be uncomfortable and sometimes painful. A well-fitting bra with full cups, wide shoulder straps and deep sides can help to support the breast and ease some of the discomfort.

Tightness

The arm or breast can feel tight when there is extra fluid in the tissues. Some people feel tightness in the arm without the arm appearing swollen. Gentle exercises and stretching the arm may help relieve feelings of tightness.

‘My breast cancer was a low grade and stage and my surgery relatively minor, so finding out I had lymphoedema was a real shock.’ – Ruth

Arm stiffness

If your arm is swollen, it may limit movement in the joints. Exercising your arm and shoulder regularly will help reduce stiffness and encourage lymph drainage. Try to keep up your normal level of activity as much as possible. You can also ask your treatment team or GP to refer you for physiotherapy.

Discomfort

Some people experience discomfort with lymphoedema, such as:

·          a dull ache

·          heaviness in the arm, breast or chest area

·          tingling

·          numbness

Gentle exercise can help relieve the discomfort. It’s also important to keep using your arm as normally as possible.

When you’re sitting, rest your arm on a pillow or cushion at a comfortable level, but not above the height of your shoulder.

Although lymphoedema isn’t usually painful, pain relief (such as paracetamol) can sometimes help with any discomfort. If the discomfort continues or you experience sharp or sudden pain, speak to your breast care nurse, lymphoedema specialist or GP who can look into the cause and advise you about pain relief.

Dry skin

The skin can become dry and flaky and sometimes feel itchy.

If the skin is swollen and dry, it’s more likely to crack and this increases the risk of infection (cellulitis).

It’s important to take extra care of your skin when you have lymphoedema. See the ‘Skincare’ section for more tips.

‘I find having a small pillow at right angles under my affected elbow supports the arm and naturally allows the lymph fluid to drain back towards the shoulder area.’ - Kim

Infection

People with lymphoedema are at risk of a type of skin infection called cellulitis.

If your arm or chest area suddenly becomes red, tender and hot, with increased swelling or a rash, you may have developed cellulitis. You may also have flu-like symptoms which can be the first sign of an infection.

See your GP urgently if you have these symptoms. You’ll probably need to start taking antibiotics straight away. It’s important to take the antibiotics for 14 days as prescribed.

If you have repeated infections you may be prescribed a low-dose antibiotic to take continuously.

If you’re travelling away from home, particularly if you’re going abroad, it’s recommended that you take a supply of antibiotics with you in case you develop an infection while you’re away. This is particularly important if you’ve had an infection in the past. Talk this through with your GP or lymphoedema specialist who will need to prescribe the antibiotics.

The Lymphoedema Support Network has two factsheets on infection called What is cellulitis? and Management of cellulitis in lymphoedema.

Managing lymphoedema

Where can I go for support?

Most people with lymphoedema have mild to moderate symptoms. In many cases the breast care nurse at your hospital will be able to help and advise you about mild lymphoedema.

The sooner you’re assessed and treated for lymphoedema, the easier it is to control. The lymphoedema organisations listed at the end of the booklet can also provide information and support.

If you have had swelling for some time, if it’s severe or you have other symptoms, your GP may need to refer you to a specialist lymphoedema therapist, who will assess your swelling and discuss the best way to manage your symptoms. At first you’ll need regular guidance from your lymphoedema specialist to help manage your lymphoedema.

How can lymphoedema be managed?

There are various treatments and techniques to manage lymphoedema. These will aim to:

·          encourage lymph fluid to move away from the swollen area

·          improve the symptoms

·          stop symptoms getting worse

The best way to manage your symptoms will depend on how severe your lymphoedema is, but may include some, or all, of the following at different times:

·          skincare

·          movement and exercise

·          compression garments

·          compression bandages

·          maintaining a healthy weight

·          manual lymphatic drainage (MLD)

·          simple lymphatic drainage (SLD)

·          Kinesio Taping (an adhesive tape that helps encourage lymphatic drainage)

·          surgery

You can manage skincare and exercise yourself, under the guidance of your GP or the team managing your lymphoedema, alongside any professional treatment you’re having.

Skincare

Skincare is important to reduce the risk of infection.

Having excess lymph fluid in the arm or chest area, together with fewer infection-fighting lymph nodes, increases the risk of infection.

If an infection develops it can lead to further damage to the lymphatic system and may make the lymphoedema worse.

Here are some ways to keep your skin in the best possible condition.

Keep the area clean

Wash your skin with warm water every day and dry it thoroughly.

If your fingers are swollen, carefully wash and dry between them to stop fungal infections that can develop in warm, moist areas.

Moisturise

Dry, flaky or cracked skin can lead to infection and make controlling any swelling more difficult.

Help to keep the skin supple by:

·          moisturising your arm at the beginning and end of every day with moisturising cream

·          using gentle strokes to apply the cream in the most comfortable way for you

·          always finishing with the last stroke in the direction of the hair, ensuring that the hairs are laid down (this helps to prevent spots forming at the hair follicles)

·          waiting at least 20 minutes after moisturising before putting a compression garment on

‘I was told I could use whatever moisturiser I preferred, so although I usually use something relatively cheap I do occasionally spoil myself with something that feels more luxurious! A little bit of luxury makes it seem less of a chore.’ - Mary

Avoid damage to the skin

Any break in the skin can become a site for infection. You can help avoid damaging the skin by:

·          wearing gloves when washing up and using harsh detergents, or when gardening or taking hot dishes out of the oven

·          using insect repellent containing at least 50% DEET to prevent bites or stings

·          if you have acupuncture, asking your therapist to avoid the affected areas

·          taking extra care if removing underarm hair or hair on your arm – an electric razor or depilatory cream are less likely to damage the skin (use depilatory cream with caution after patch testing)

·          taking care when cutting your nails and avoiding cutting your cuticles or pushing them back too harshly

Take care in the sun and heat

Hot weather, and in some cases saunas, steam baths or hot tubs, can increase swelling.

If you have a compression garment, spray some water on it if you’re feeling too hot. You can also keep a spare garment in a plastic bag in the fridge before putting it on to cool you down.

To avoid getting burnt in the sun:

·          apply a high factor sunscreen (at least SPF30) regularly

·          protect the swollen areas of your body from the sun with loose cotton clothes with long sleeves

·          remember, you can still get sunburnt through some clothing and compression garments

‘Until recently I worked with young children. I use a lot of disposable gloves to protect my skin from germs if I am helping children with personal care as I can’t wash my gloves every time I touch something mucky.’ - Alison

Avoid tightness or strain

If there’s any tightness around the swollen area, this can affect lymph drainage.

If possible avoid tight or narrow bra straps and tight sleeves, watches or rings.

Treat any cuts, scratches and bites

Treat any cuts, scratches and insect or animal bites on the swollen area promptly by cleaning with warm water and applying an antiseptic cream or spray. This will reduce the risk of infection.

If it’s a deep cut, use a dry dressing with a loosely applied bandage or a plaster if your skin’s in good condition.

What should I do if I notice any signs of infection?

Contact your GP or breast care nurse as soon as possible if you experience:

·          redness or a rash

·          heat

·          swelling

·          tenderness or pain

·          flu-like symptoms

You may need antibiotic treatment.

Take any compression garments off to avoid damaging the skin further.

Arm and shoulder exercises

Keeping your arm and shoulder moving will help avoid stiffness and prevent further swelling.

On the following page are some simple arm and shoulder exercises you can try.

It’s important to perform all exercises slowly and gently, in the order opposite. Fast movements will not allow lymph fluid to drain properly.

If you can’t do a movement fully or the exercises cause you pain, it’s best to get advice from your lymphoedema specialist or breast care nurse. Let them know about any pre-existing arm and shoulder problems so they can help you adapt the exercises.

You can exercise your arm a little when you’re walking around by slowly bending and straightening it at the elbow. To relieve pressure and swelling in the hand, try slowly opening and closing it as if squeezing a rubber ball. Avoid letting your arm hang down for long periods as this can encourage the lymph fluid to collect.

Your lymphoedema specialist, breast care nurse or physiotherapist may give you some specific shoulder, arm and hand exercises to encourage movement and help improve lymph drainage.

If you’ve been fitted with a compression garment wear this when doing any exercises to get the best results.

If you’re unsure about how to do any exercises, ask your GP or lymphoedema specialist.

Open and close your hand

Move your wrist forward and back

Bend and straighten your elbow

Roll your shoulders in a backwards direction

Raise your arm from your side up above your head and gently lower back down

Raise your arms towards the ceiling and gently lower back down

Physical activity

Research shows that physical activity is a good way of managing the swelling because moving the muscles encourages lymph fluid to move away from the swollen area.

Although you may already use your arm actively in your everyday life, extra exercise may help reduce discomfort and tenderness and keep your joints supple.

It’s usually possible to carry on doing any sports and activities you did before you developed lymphoedema.

If you want to increase your activity levels or take up a new activity, do it gradually and stop if you have any discomfort or notice further swelling.

Some people find activities such as running, swimming, cycling, Nordic walking and yoga helpful.

If you use gym equipment, talk to an instructor and start with light weights until you’ve built up enough strength to use heavier ones without discomfort or increased swelling.

If you have any pain or discomfort in your arm or shoulder with any movement or exercise tell your lymphoedema specialist, breast care nurse or a physiotherapist.

If you’ve been fitted with a lymphoedema garment, always wear it when you’re exercising or when you’re very active. This will help you get the best results from the exercise. If your compression garment is not comfortable, go back to whoever fitted it for you to get the fit checked.

You don’t need to wear compression garments while swimming. Wash your skin after swimming to get rid of chemicals from the pool or salt from the sea.

Deep breathing exercises can also help the movement of lymph fluid. You can find more information and tips on the Cancer Research UK website cancerresearchuk.org

‘Swimming is very good and helps to clear my upper arm, which in turn drains my hand.’ - Fiona

‘Pilates helps to strengthen my chest and shoulders which in turn helps to prevent fluid retention in the upper arm and chest area.’ - Fiona

Maintaining a healthy weight

Being overweight can affect how much your arm swells and how you respond to treatment for lymphoedema, so it’s important to try to maintain a healthy weight. Follow a healthy, well-balanced diet and do some regular physical activity.

If you’re concerned about your weight, your lymphoedema specialist, GP or pharmacist may be able to advise you on losing weight, or they may refer you to a dietitian. The NHS website has lots of good tips on losing weight.

General activities

Try to use your affected arm as normally as possible. If a certain activity increases your swelling then discuss this with your GP or treatment team.

Compression garments

Compression garments are designed to reduce swelling and prevent further swelling by encouraging lymph fluid to drain away from the affected arm.

If the swelling is in your arm or hand you may be fitted with a compression sleeve or glove.

You may be prescribed a compression bra or vest, which is similar to a sports bra. Your lymphoedema specialist or breast care nurse will assess which size and type of garment is best for you.

Wearing the garment may feel strange at first but it shouldn’t cause pain or discomfort. Once on, it should feel comfortable and supportive. If you have any concerns about the garment, contact the person who supplied it.

You’ll normally be given two garments so you can wash one while wearing the other. Regular washing according to the care instructions will prolong the life of the garment. You’ll need replacement garments about every six months to make sure the compression level remains correct for the amount of swelling you have.

How to put your garment on

Apply and remove your garment carefully. Put your garment on in the morning when there’s usually less swelling.

You should be shown how to apply the garment properly. It’s sometimes difficult to apply compression sleeves, and you should be offered an applicator.

The Lymphoedema Support Network can also tell you where to find applicators.

It’s important that the garment doesn’t have any wrinkles and that the fabric is evenly spread so that it fits well.

Never turn the top of the garment over if it seems too long as this will put too much pressure on one area. You may need a shorter garment instead – talk to your lymphoedema specialist or breast care nurse.

‘I saw the NHS lymphoedema nurses who prescribed a compression bandage for my arm (that initially incorporated my wrist and lower hand) and a very firm compression bra for when I’m exercising.’ - Kim

When to wear your garment

Wearing your compression garment as much as you can during the day will help keep your swelling under control.

If it feels too much to wear the garment all day at first, start by wearing it for a few hours each day. Then gradually increase the time so that you’re eventually wearing it all day. If you find the garment difficult to cope with, and your lymphoedema specialist has checked that it fits correctly, try wearing it when you’re at your most active – for example, when you’re doing exercise, gardening, housework or physical work – then take it off when you’re less active.

The compression garment is most useful when your muscles are working actively and least useful during rest.

Many lymphoedema specialists suggest wearing compression garments when flying. Long flights and a lot of time spent not moving around can affect your swelling.

Compression bras should be worn during daytime hours but may be worn at night as well if you find it comfortable to do so. Some compression sleeves are designed to be worn at night as well. You can ask your lymphoedema specialist if this would be appropriate for you.

Problems to look out for

Size and fit

If you have concerns about the fit of your garment, for example if your weight changes and your garment becomes too tight or too loose, speak to your lymphoedema specialist or breast care nurse.

Pain, numbness or tingling

If you find it painful to wear your garment, or you notice a change in sensation such as numbness or tingling in your arm or hand, or a change in colour at the tips of your fingers, take it off immediately and contact your lymphoedema specialist, as the garment may be too tight.

Soreness or itchiness

Sometimes the material of the garment can make your skin sore or itchy, particularly in the elbow crease or over bony areas on your hand. This could also mean you’re allergic to the material. Talk to your lymphoedema specialist, breast care nurse or GP to see if you can try other garments.

‘I see lymphoedema as being a nuisance, but have got used to wearing the sleeves and people asking what I’ve done to my arm (they usually think I have strained it).’ – Kim

Coverage

If swelling appears in areas not covered by the garment, such as the fingers or hand, you may need a different garment.

Infection (cellulitis)

If you develop an infection in your arm or breast, take off the garment until the infection has settled down. If your skin has become sore as a result of the infection, wait until it has improved before wearing the garment again because it may damage the skin further.

Replacing your garment

After wearing a compression garment for about six months, the fit and support will need to be checked. Contact your lymphoedema specialist, breast care nurse or GP before getting your next new garment.

Compression bandages

Compression bandages are used when the swelling has made the limb a difficult size or shape for compression garments to be fitted. They’re also used if the skin has become damaged and sore, when using compression garments may cause more damage.

Several layers of bandages are put on the arm and hand by a lymphoedema specialist or another trained healthcare professional. At first these can make the arm seem bigger than normal and they may feel bulky.

The bandages may be removed and reapplied regularly, depending on the severity of the swelling. Over two to four weeks of regular bandaging, the arm shape will change and the swelling will reduce so compression garments can be fitted to control the swelling that remains.

You’ll need to wear clothes that allow for the extra bulk of the bandages. You’ll also need to go to the clinic regularly to have the bandages changed.

It’s important to exercise and move your arm around as much as possible while the bandages are in place, as this will improve their effectiveness.

Your lymphoedema specialist will discuss the aims of compression bandaging with you if they feel you would benefit from this type of treatment.

Compression wraps are foam tubes with Velcro fastening which can be used as an alternative to bandaging. They’re available for both the arm and hand.

Can I still go on holiday?

There’s no reason why having lymphoedema should stop you enjoying holidays.

It’s important to avoid getting sunburnt.

Before you travel, talk to your GP or lymphoedema specialist about taking antibiotics with you (in case you develop an infection in the swollen area).

Try not to sit for too long in one position when travelling. Take regular breaks if travelling by car or move around if you’re travelling by air. You can also do gentle exercises while sitting to help lymph flow.

If you’ve been fitted with a compression garment, wear it during your journey.

Manual lymphatic drainage (MLD)

Manual lymphatic drainage (MLD) is a specialised type of massage carried out by a trained practitioner. It can be used for any degree of swelling caused by lymphoedema but it’s usually used when the swelling is severe or difficult to manage. MLD can be particularly useful over areas where compression garments cannot easily be worn, such as the chest area.

The MLD therapist uses hand movements to stimulate lymph drainage and move lymph fluid away from areas where it has collected. It’s a slow, very light rhythmical treatment that takes time to complete.

MLD is usually combined with other compression treatments to achieve a better result. MLD can help to reduce hardness of the tissues, as well as reduce pain and discomfort.

Your lymphoedema specialist can tell you if MLD may help you. This treatment is available in some NHS hospitals, Macmillan centres or privately. To find out if there is a trained therapist in your area talk to your lymphoedema specialist or contact one of the organisations listed in this information. If you use a private therapist, check they’re registered with the British Lymphology Society.

Simple lymphatic drainage (SLD)

Your lymphoedema specialist may teach you a simple type of skin massage called simple lymphatic drainage (SLD). It’s based on the principles of MLD.

If you have been taught SLD, you’ll be advised to do it one or more times a day depending on your condition. You need to do SLD carefully and not change the sequence of the movements because this will affect how well it works.

If you find it difficult to do the skin massage yourself, someone else can be taught how to help you with it.

The technique is best done without using oils or cream on the skin so that good contact is kept between the hand and the skin.

Kinesio Taping

Kinesio Taping is a treatment that’s suitable for some people with lymphoedema. It uses a particular type of adhesive tape applied to the skin by a trained therapist. You can be shown by your specialist how to replace the tape.

The tape lifts the skin during movement and encourages lymph fluid to move towards other areas and the lymph nodes.

Kinesio Tape is usually used with other forms of treatment. However, it’s sometimes used on its own to manage lymphoedema if it develops in areas such as the breast and chest wall. It can also be used to soften and reduce hard, firm tissue (fibrosis).

The Lymphoedema Support Network has a factsheet called The use of Kinesio Tape in lymphoedema management.  

Other treatments for lymphoedema

The following treatments are sometimes used alongside the ones already described to manage lymphoedema, but their benefits are less clear.

Surgery

Research is being carried out into using surgery to treat lymphoedema, and it may be considered for some people. However, it’s not yet widely available and results vary.

Lymphatic reconstruction

Microsurgery (lymphatic reconstruction) for lymphoedema is a relatively new procedure. It’s performed under local anaesthetic by plastic surgeons with special training in microsurgery. It aims to make new routes by joining lymph and blood vessels, to help the lymphatic system transport more lymph fluid.

Lymph node transfer

Lymph node transfer involves removing healthy lymph nodes from one part of the body and transferring them to the armpit area.

Liposuction

This is a surgical procedure in which fat is removed from the affected area. It’s not standard treatment for lymphoedema in the UK. It should not be considered before other therapies such as exercise, compression bandaging and MLD have been tried and had maximum benefit.

Liposuction aims to reduce swelling, improve movement and reduce pain and discomfort. People who have this procedure are advised to wear a life-long compression garment, 24 hours a day to keep the swelling down.

Compression pumps

Mechanical compression pumps mimic the effect of MLD by squeezing the swollen arm in a plastic sleeve, which inflates and deflates at regular intervals. Pumps are usually used alongside other therapies.

They should never be used without the advice and close supervision of your lymphoedema therapist.

Low-level laser therapy

This treatment uses a low-energy laser to improve the flow of lymph fluid. Research is ongoing but some studies suggest it may be helpful for reducing the amount of swelling, fibrosis and discomfort.

Coming to terms with lymphoedema

For some people, learning to live with and accept lymphoedema can be harder than coming to terms with the cancer itself. You may experience a mixture of feelings depending on the degree of swelling and how it affects your daily life but it’s normal to feel angry, resentful or fed up at times.

If there are times when you’re not coping well, don’t be afraid to ask for help, either from your lymphoedema specialist or breast care nurse. You can also call Breast Cancer Care’s Helpline on 0808 800 6000.

You may find it helpful to talk to other people who are also living with the condition. We can put you in touch with a trained volunteer who has lymphoedema through our Someone Like Me service, so you can share experiences and get practical and emotional support. Call 0345 077 1893 or email someonelikeme@breastcancercare.org.uk

The Forum on the Breast Cancer Care website has a specific section for people affected by lymphoedema, where you can chat to other people and share tips.

Having lymphoedema can affect your self-confidence and body image. This may affect you in a number of ways, including how you feel about intimacy and sex. Reading our booklet Your body, intimacy and sex may be helpful.

‘I’m more accepting of it now than I was initially. It’s just part of the post-cancer me. But it still makes me feel rubbish about myself quite often.’  - Ruth

Useful organisations

Lymphoedema organisations

British Lymphology Society (BLS)

thebls.com

Provides factsheets and a website that includes a directory of lymphoedema clinics around the country.

Lymphoedema Support Network

lymphoedema.org

020 7351 4480

Provides information and support to people with lymphoedema.

Lymphodema Training Academy

lymph.org.uk

An organisation that provides a directory or trained lymphoedema therapists.

MLD UK

mlduk.org.uk

MLD UK is an organisation that can help you to find a manual lymph drainage (MLD) therapist in your area.

About this booklet

Living with lymphoedema after breast cancer was written by Breast Cancer Care’s clinical specialists, and reviewed by healthcare professionals and people affected by breast cancer.

For a full list of the sources we used to research it:

Phone 0345 092 0808

Email publications@breastcancercare.org.uk

You can order or download more copies from breastcancercare.org.uk/publications

We welcome your feedback on this publication: breastcancercare.org.uk/feedback

For a large print, Braille or audio CD version:

Phone 0345 092 0808

Email publications@breastcancercare.org.uk

© Breast Cancer Care, April 2019, BCC5

Edition 8, next planned review 2021

Breast Cancer Care is a working name of Breast Cancer Care and Breast Cancer Now, a company limited by guarantee registered in England (9347608) and a charity registered in England and Wales (1160558), Scotland (SC045584) and Isle of Man (1200). Registered Office: Fifth Floor, Ibex House, 42–47 Minories, London EC3N 1DY.