Living with lymphoedema

Lymphoedema is a long-term condition so it is important to stay involved in your care. You will have regular follow-up appointments at first, but if your lymphoedema is stable you may not need to see a specialist.

Keeping to a healthy weight can help to manage lymphoedema as being overweight puts more stress on the lymphatic system.

If you are going on holiday or on a long journey you should think about how to manage your lymphoedema during this time. Planning ahead can help you manage any possible problems and enjoy your time away. 

Lymphoedema may affect you at work. The Equality Act 2010 (or the Disability Discrimination act in Northern Ireland) protects anyone who has cancer, or who has had cancer in the past. Knowing your rights can help your employer to support you.

Living with lymphoedema

Because lymphoedema is a long-term (chronic) condition, it is important to stay involved in your lymphoedema care.

It can be hard to take all the precautions and do all the treatments that your lymphoedema specialist advises. It can take up a lot of your time, and you may need extra support from friends and family. Contacting others through a support group, or our Online Community can also help keep you motivated.

The information on this page explains some things you can do to stay healthy and as involved in your own healthcare as possible.


Your follow-up

It is important to have regular check-ups with your lymphoedema specialist or doctor. During these appointments, they will check the skin and tissues in the swollen area. The specialist may take photographs of the area to monitor progress. Or they may look at changes in size of your compression garment. If your arm or leg is affected, your specialist may measure it. It may be helpful for you to keep a progress chart, where you can write down the measurements each time. 

Try to follow the advice your lymphoedema specialist has given you about managing and treating the lymphoedema. When your specialist has reduced your lymphoedema as much as possible, they may discharge you. After this, you will manage it yourself at home. It is always possible to get referred back to the specialist if things change.

If you have any worries, talk them over with your lymphoedema specialist or doctor. You should be able to contact them between appointments if you have any problems.


Keeping to a healthy weight

If you have lymphoedema, or are at risk of developing it, 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.

It can be difficult to lose weight and keep to a healthy weight. Sometimes, people find they have gained weight because of treatment. For example, this can happen after treatment for breast cancer.

If possible, try to keep your weight within the normal range for your height. Your GP or practice nurse can tell you what your ideal weight is. You may find it helpful to ask your GP or a dietitian for advice and support.

Tips for keeping to a healthy weight

  • Reduce your calorie intake by cutting down on fat and sugar in your diet.
  • Only eat as much food as you need.
  • Eat a balanced diet with lots of fruit and vegetables – this lets you get all the nutrients you need to keep your body healthy.
  • Increase your physical activity to help you burn calories – always get advice from your lymphoedema specialist or doctor before you start.

It is best to avoid losing weight too quickly with an extreme diet. Losing weight slowly is healthier and you are more likely to keep the weight off.

Keeping a food diary

Some people with lymphoedema find certain foods, such as spicy and salty foods or alcohol (especially wine), can increase swelling. Write down any foods you think make your lymphoedema worse as a reminder to avoid them.


Travel and lymphoedema

If you are planning to go away on holiday, you may worry about managing your lymphoedema. Planning ahead for your trip should help you manage any possible problems and enjoy your time away.

It is important to carry on with your usual routine for managing your lymphoedema. But there are other things you need to be careful of when travelling.

You may find these checklists useful to help you plan ahead.

Before you go

  • If you need any vaccinations before your holiday, do not have them in an affected limb.
  • If you are planning a more active holiday, talk to your lymphoedema specialist before you go. They can advise you how to plan your trip so you do not put too much stress on the affected area.
  • If you have had cellulitis in the past, ask your GP about antibiotics to take with you. If you develop cellulitis while away, you can start taking them at the first sign of infection. It can be helpful for your lymphoedema specialist to speak with your GP about this.
  • Pack an antiseptic cream in case you get a cut, scratch or bite in the affected area.
  • Pack an insect repellent. You need one that contains at least 50% DEET. This is the active ingredient in insect repellent. Your pharmacist can advise you which might be best.
  • If you are taking any prescription drugs with you, make sure you have enough to last. You may also need a letter from your doctor.
  • Make sure you have travel insurance.

During your journey

Here are some tips for when you are travelling:

  • You may be planning to go on a plane and have a compression garment. You will need to wear it for a few hours before, during and for a few hours after the flight. Any increased swelling during the flight should reduce afterwards.
  • When you travel on a plane or train, move around a lot and do gentle stretching exercises. You can ask your lymphoedema specialist what exercises might help. You could book an aisle seat, so you have more room to move.
  • During longer car journeys, stop regularly to get out and walk around.
  • Wear comfortable, loose-fitting clothes and shoes.
  • When on a plane, wear flight socks that fit well. Your GP or specialist nurse can give you advice if you cannot find a pair that fit.
  • Use a suitcase with wheels – this can be easier than carrying a heavy bag. Avoid lifting and pulling heavy luggage with your affected arm. Ask someone to help.

While you are away

  • If you have lymphoedema in your leg, do not walk barefoot on the beach or around the swimming pool. This reduces the risk of cuts and possible infection in your foot.
  • Sunburn can increase swelling. If you are in a hot climate, it is important to wear good quality sun cream. Look for a sun protection factor (SPF) of 50. Sit in the shade or cover the affected area with a hat, long-sleeved shirt or loose trousers.
  • Drink plenty of water. This will help to keep your skin in good condition.
  • Sea salt and chlorine make the skin dry. If you go swimming, shower afterwards and put on moisturiser.
  • Avoid saunas and hot baths. Keep the affected area as cool as possible.
  • If you start to get signs of an infection, let a doctor know straight away. These signs could be flu-like symptoms including high temperature, redness or heat in the affected area. It may also include increased swelling. If you have antibiotics with you, start taking them as soon as possible.

We have more information on travel and cancer.

You can also contact the Lymphoedema Support Network. It has a more detailed guide on holidays and travel for people with lymphoedema.

I went on holiday recently. My doctor gave me antibiotics just in case I got bitten out there.

John

I always wear compression garments when I fly. I also always have a small antiseptic spray in my wash bag in case I graze my leg.

Steve


Employment rights

The Equality Act 2010 protects anyone who has or has had cancer. Even if you had cancer in the past that was successfully treated and now cured, the act still covers you. This means your employer must not discriminate against you for any reason, including any past cancer diagnosis. The Disability Discrimination Act protects people in Northern Ireland.

For most people, returning to work is a big step in their recovery. Many companies have an occupational health service. Occupational health departments can offer confidential support and counselling before and after your return to work.

Late effects, such as lymphoedema, may make work more difficult. Your employer has a duty to make reasonable adjustments (changes) to your workplace and working practices. These may include:

  • allowing some flexibility in working hours
  • allowing extra breaks so that you can move around
  • removing tasks from your job that you may find physically challenging
  • letting you work from home.

Sometimes, these adjustments may be expensive. For these, a government-funded scheme called Access to Work may help your employer with financial and practical support.