Coping with lymphoedema

Lymphoedema means swelling of part of the body caused by a build up of lymph fluid. It can happen after some cancer treatments.

The swelling can affect you emotionally, physically and practically. There are ways that you can help yourself to cope. You can also get support from other people.

Your feelings

Most people have a mix of feelings when they find they have lymphoedema. You might feel angry, frightened, or sad. After treatment, some people are often glad that they have got through it. But it can also feel very unfair to have to cope with a treatment side effect.

You may have some or all of these feelings. Or you might feel totally different. You may feel them a few at a time or all together, leaving you feeling exhausted.

You may think you should be talking all this through with your partner, other family members, or close friends. But you may find this really hard to do. Or you may want to talk to someone straight away to help you work out how you are feeling.

All these sorts of feelings are likely to come and go, some may even come up when you are not expecting them.

Living with any chronic (long-term) condition isn’t easy. It’s important to give yourself time to come to terms with it.

Helping yourself

You may be more able to cope and make decisions if you have information about lymphoedema and its treatment. Information helps you to know what to expect.

Do ask for help if you need it. There’s a lot of support available. Your doctors or nurses can refer you to a lymphoedema specialist.

There are lymphoedema services in most areas. What they offer may vary. You might need to ask your doctor for a referral.

Talking to other people

Talking to your friends and relatives about lymphoedema can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone outside your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Or you may prefer to see a counsellor.

Coping with changes to your appearance 

Swelling due to lymphoedema might change your appearance. The impact of any changes will depend on where you have lymphoedema.

But even if other people can’t see your lymphoedema, the swelling can affect how you feel about yourself. Some people feel less attractive or find it harder to go out and socialise.

Over time, things get easier. But it doesn’t always help to hear this at first.

You might find it difficult when you meet new people. Think beforehand about what you want to say if someone asks you about your lymphoedema. Remember that it’s up to you how much you explain.

Talking to others with lymphoedema

Some people find it helpful to talk to other people with similar experiences. Not everyone wants to do this. But there are organisations that can help.

The Lymphoedema Support Network (LSN) is a national charity that offers information and support. You can also share experiences on our online forum Cancer Chat with people who have had cancer treatment.

Diet and exercise 

A healthy well balanced diet helps to keep you well and maintain a normal weight. This can make it easier to manage your lymphoedema.

But maintaining a healthy weight can be difficult for some people. Having lymphoedema, in particular in your legs can make it hard for you to move around. Your lymphoedema specialist or cancer specialist can give you advice on losing weight. Or they can refer you to a dietitian.

Exercise 

Exercise can help with your weight and is also an important part of managing lymphoedema.

You should start exercising gently and gradually build it up over time. Walking is often a good way to begin. You can gradually increase the distance and pace. Swimming and aqua aerobics are also good exercises in general and if you have lymphoedema. 

It’s important to check for any changes in the area of swelling or at risk of swelling. You should stop the exercises and speak to your lymphoedema specialist if you develop any pain, aching, or swelling during your exercises. You should also contact them if you notice any changes afterwards or if you have any concerns. 

Your sex life and lymphoedema

Changes in your appearance might make you feel less confident about sex. The swelling can affect the way you feel about yourself and how you think others see you.

Try talking to your partner. It can be hard for them to understand unless you explain how you feel.

Talking about sex can be an awkward conversation for many people. But if you can talk about your worries, it can help you both to get used to your new situation. Then things might feel less awkward. A caring and loving partner can help to ease your concerns.

Talk to your nurse or physiotherapist about how your partner can help. Your partner can learn to help with self-massaging (simple lymphatic drainage). Using touch can be part of the intimacy you share.

Sexual activity

Sexual activity will be more difficult if you have genital lymphoedema. You might need to think about other ways of gaining pleasure if you have swelling in that area.

It should still be possible to have sexual intercourse. But to avoid any pain or tissue damage, you might need to be very gentle and take things more slowly. Use a good amount of lubricant.

You might feel too embarrassed to talk about sex with your lymphoedema specialist or doctor. Keep in mind that they see many other people with the same concerns and have had specialised training to help. Speak to them if you feel worried about sex or have any difficulties. They can listen and offer emotional support and practical advice.

Working

Whether lymphoedema will affect your work, depends on your job. The part of your body that has swelling will also play a role.

Employers can often make physical or practical changes to help you carry on working. Speak to your employer about flexible hours or working from home. Or they can make changes to your place of work. For example, adapting your workstation or having a footstool. Together, you, your employer, and your lymphoedema specialist can work out what might help.

If you are unable to work as a result of your cancer and the side effects of your cancer treatment you might need to claim benefits if you can't work.

Going on holiday

Lymphoedema should not stop you from going on holiday but you might need to plan your travels. Getting to your holiday and back might mean sitting still for long periods of time.

Try to move around as much as possible and drink water regularly. You may need to stop more often if you are travelling by car. On a plane, try to do leg and arm exercises and get up every hour. You will need to continue wearing your compression garment all day or as advised by your specialist if you have lymphoedema. 

Things that might help

• Ask your doctor about taking antibiotics with you, in case you get an infection.
• Be careful with carrying heavy luggage.
• if you have lymphoedema wear a well fitting compression garment when travelling.
• Wear loose clothing.
• Exercise during your holiday.
• Avoid extremes of temperature – if possible, keep cool.
• Avoid sunburn and use a high factor sunscreen.
• Look after your skin – keep it clean and moisturised.
• Avoid insect bites – use an insect repellent.
• Clean cuts and grazes with antiseptic and cover them.
• Drink plenty of water.
• Try not to overdo it when you are away – do the same amount of exercise as you would normally do.