Causes of lymphoedema and how to reduce your risk

Sometimes cancer or its treatment can damage or block lymph nodes or vessels. Or doctors may need to remove the lymph nodes completely during treatment. This makes it is harder for lymph fluid to drain. The fluid can then build up between the tissues and cause swelling.

Lymphoedema can develop weeks, months or even years after cancer treatment. The most common places for lymphoedema to develop after cancer treatment are in the arm or leg.

Anyone who has had cancer treatment that affects their lymph nodes is at risk of developing lymphoedema. The risk is greater if:

  • the lymph nodes in the armpit, groin or neck area are affected
  • you have had both surgery and radiotherapy to the lymph nodes.

We do not know why some people develop lymphoedema and others do not. But following the advice in this section may help to reduce your risk of lymphoedema.

Things you can do to reduce your risk include:

  • looking after your skin
  • watching for early signs of infection
  • exercising and keeping active
  • keeping to a healthy weight
  • taking care when travelling.

How lymphoedema develops

Sometimes lymph nodes or vessels are damaged, blocked or removed. This makes it is harder for lymph fluid to drain. The fluid can then build up between the tissues and cause swelling.

Sometimes, cancer or its treatment can damage or block lymph nodes or vessels. Once this happens, it is not possible to repair them. Or, doctors may need to remove the lymph nodes completely during treatment. This means, if lymphoedema develops, it cannot be cured. Part of the treatment for lymphoedema is learning things you can do to manage it yourself. It is usually possible to reduce the swelling if it is diagnosed and treated early, but it does not go completely. This is known as a chronic condition.

Sometimes, if the swelling is small and treatment starts early, the area can return to normal size. You still need to follow advice from your specialist to reduce the risk of the swelling coming back.

There are things you can do to reduce the risk of lymphoedema developing.


Causes of lymphoedema

Not everyone who has lymphoedema has had cancer. But cancer or its treatment can cause lymphoedema. This may be because of:

  • surgery to remove lymph nodes – interrupting the normal flow of the lymphatic system and causing fluid to build up in the affected area
  • radiotherapy to the lymph nodes – causing hardening of the tissue (scar tissue) that blocks the flow of lymph fluid
  • cancer cells spreading to the lymph nodes – causing a blockage that leads to a build-up of fluid
  • a cancer that is pressing on the lymph vessels – causing a blockage in the lymph nodes close by that leads to a build-up of fluid.

The doctors explained about lymphoedema before surgery and before radiotherapy. They gave me leaflets explaining what it was and how to manage it.

Anne


Lymphoedema after cancer treatment

Lymphoedema can develop weeks, months or even years after cancer treatment. The most common places for lymphoedema to develop after cancer treatment are in the arm or leg.

You may get lymphoedema in the arm after breast cancer or melanoma treatment (surgery or radiotherapy) to the armpit.

It may also develop in the leg if cancer or its treatment affects the lymph nodes in the pelvis or groin area. This usually happens after surgery or radiotherapy for gynaecological cancers (cancer of the womb, cervix, ovary, or vulva) or anal cancer. Or it can happen after treatment to the lymph nodes in the groin for melanoma.

Other areas lymphoedema can develop in are:

  • the breast or chest area, after breast cancer treatment
  • the pelvic area and genitals, after surgery or radiotherapy to lymph nodes in the pelvis for cancers of the prostate, bladder, womb, vagina, testicles, penis or rectum
  • the face, head and neck, after surgery or radiotherapy to lymph nodes in the neck.

If you have surgery, it is common to get swelling (oedema) near the surgery scar in the first days after the operation. This can take several weeks to go completely. This type of swelling is not the same as lymphoedema. If lymphoedema develops after surgery to remove the lymph nodes, it usually happens a few months or years later. If you are worried about any swelling, always talk to your doctor or nurse.

Not everyone who has lymph nodes removed or radiotherapy to the lymph nodes will get lymphoedema. But there is a risk of developing it.

I will always have to be careful with my legs as I am at risk of getting Lymphoedema but I am aware how to manage it.

Annabel

Causes of lymphoedema

Macmillan University Teacher Rhian Davies describes the causes and symptoms of lymphoedema.

About our cancer information videos

Causes of lymphoedema

Macmillan University Teacher Rhian Davies describes the causes and symptoms of lymphoedema.

About our cancer information videos


Reducing your risk of getting lymphoedema

The information on this page is for people who do not have lymphoedema but are at risk of getting it. It gives you information about how to reduce your risk.

Anyone who has had cancer treatment that affects their lymph nodes is at risk of developing lymphoedema. The risk is greater if:

  • the lymph nodes in the armpit, groin or neck area are affected
  • you have had both surgery and radiotherapy to the lymph nodes.

You may have had just one or two lymph nodes removed (called a sentinel lymph node biopsy or SLNB). The sentinel node is the first node (or nodes) that lymph fluid drains to from a part of the body. Or your doctors may have removed a complete group of nodes (called lymph node clearance). If you have had an SLNB, you are still at risk of getting lymphoedema, but the risk is lower.

We do not know why some people develop lymphoedema after cancer treatments and others do not. Straining the limb or having a skin infection may cause swelling in someone who is at risk of developing lymphoedema. Or it may be that some people’s lymphatic systems do not work as well as others.

If an area becomes inflamed or infected, the body makes extra fluid. If this area of your lymphatic system is not working properly, the build up of fluid could cause lymphoedema.

Following the advice on this page may help to reduce your risk of lymphoedema.

Look after your skin

It is important to keep the area at risk of lymphoedema clean. You should also moisturise it well. This reduces the risk of the area becoming inflamed or infected. It is also important to protect your skin from cuts and grazes, insect bites and sunburn.

We have more detailed information about skin care for lymphoedema.

Watch for early signs of infection

It is important to be aware of early signs of infection in the area at risk of lymphoedema. Doctors can then treat the infection straight away with antibiotics. Contact your GP straight away if you notice flu-like symptoms, or any of the following signs:

  • redness or warmth in the area that is at risk
  • a new painful swelling in the area that is at risk
  • pain or tenderness in the area that is at risk
  • red streaks that go up or down from the area that is at risk
  • a high temperature or fever.

Try to exercise and keep active

Muscle activity helps improve the flow of lymph fluid in the body. Regular exercise and keeping active encourages the fluid to drain. It also helps with joint movement.

Gentle stretching exercises can help your arm or leg return to normal after surgery or radiotherapy. You should do exercises gently and start gradually. A physiotherapist will usually show you what exercises to do. It is important you do them for as long as they advise after surgery, to help you recover.

After your treatment finishes, you can usually get back to any physical activity or exercise you did before. Or you may decide to do something new. It is important to start slowly and gradually increase the intensity. There may be some exercises you need to be more careful doing. These include lifting heavy weights, or playing physical contact sports. This is because they are more likely to injure the skin or muscles in the area at risk of lymphoedema 

Physical activity will help you feel better generally, and keep your weight down. It encourages deeper breathing, which helps lymph fluid flow. Breathing exercises on their own, or as part of yoga or pilates, can also help.

Ask your physiotherapist or specialist nurse for advice about exercise. We have more information about exercising and keeping active to reduce lymphoedema. You may also find our general information about physical activity and cancer useful.

Keep to a healthy weight

The risk of getting lymphoedema increases if you are overweight. It is important to try to keep your weight within the normal range for your height. Your GP or practice nurse can tell you your ideal weight for your height. You can also ask them, or a dietitian, for advice and support on healthy eating.

We have more information about keeping to a healthy weight when you have lymphoedema. We also have more information about healthy eating and weight management.

Take care when travelling

Here are some tips to help reduce your risk of developing lymphoedema when travelling:

  • avoid sitting in one position for the whole journey
  • move around often, and do gentle stretching exercises if you are on a plane or train
  • during longer car journeys, make regular stops to get out and walk around
  • wear comfortable clothes and shoes, and avoid tight-fitting clothes
  • use a suitcase on wheels that you can pull, so you do not need to carry a heavy bag.

If you do not have lymphoedema, you do not normally need to wear a compression garment when on a plane. But tell your doctor if you are flying a long distance and have had swelling caused by cancer or its treatment. They will be able to advise you on what to do. They can tell you how helpful a compression garment might be in your situation.

We have more information about travelling when you have lymphoedema.