Breast cancer: Treating lymphedema

In lymphedema, part of the body becomes swollen because lymph fluid (lymph) gathers in the tissue there. Lymph is a clear fluid that circulates throughout our bodies.

The lymphatic system is an important part of our immune system. One thing it does is help protect our bodies from infection. Lymphedema happens when the lymph vessels or nodes are damaged in some way. At first it causes swelling because fluid builds up in the tissue and can’t be drained properly. If it gets worse, the risk of infection increases. If the swelling lasts a long time, the fluid might go very deep into the tissue. This can cause fibrosis (thickening and hardening of the tissue), which is very hard to treat.

Surgery and radiation can damage the lymph vessels. It may be necessary to remove lymph nodes from the armpits during breast cancer surgery to check whether they contain cancer cells. Nodes may also be unintentionally damaged during treatment. Even though surgeons are very careful when they operate, this can’t always be avoided.

Temporary lymphedema is quite common immediately after surgery. It is usually mild, and goes away within a few weeks or months. It is difficult to predict which women will develop lymphedema and whether it will get worse later on or become permanent. One thing that is known, though, is that being overweight increases the risk of lymphedema.

Lymphedema can also develop months or even years after cancer treatment. About 6 to 20 out of 100 women who have had surgery or radiation for the treatment of breast cancer develop lymphedema, usually within the first two years after treatment. After breast cancer surgery, lymphedema usually develops in the arm, but it sometimes occurs in the hand or in the chest area.

The risk of developing lymphedema depends on what is done during surgery. In the past it was usual to remove ten or more lymph nodes from the armpits. About 20 out of 100 women had lymphedema after they had that type of surgery. Nowadays, if there are no signs that the lymph nodes in the armpits have been affected by cancer, only one specific lymph node called the sentinel lymph node is removed and examined. If the cancer has spread, it will have spread to this lymph node first. If no cancer cells are found in the sentinel lymph node, the other lymph nodes in the armpit don't need to be removed. When this approach is followed, about 6 out of 100 women develop lymphedema after surgery.

The early signs of lymphedema following breast cancer surgery often include the following:

• The arm on the side of the body that was operated on feels heavy and puffy.
• The skin on the arm feels warm and tight.
• It is harder to move and turn the arm and hand, and the shoulder hurts.
• Clothing and jewelry start to feel too tight and uncomfortable.
• The arm looks swollen.

Lymphedema develops in stages. At first, the swelling feels soft when you touch it. If you rest your arm or keep it elevated, the swelling might go down again. When you press on the swollen area, it leaves a dent. Other people may not really notice the swelling: The distance around the arm could just be about a centimeter longer.

If the swelling has been there for a while, the lymphedema changes and the arm (including the skin) will start to feel tight or hard. Pressing on the swollen area no longer leaves a dent. Elevating your arm also doesn’t help any more.

If it keeps getting worse, the swelling will become very obvious and is often very painful. The arm might feel numb and it can become more difficult to move it. The skin changes visibly: Areas of thick skin and blisters form. In this stage, infections and inflammations might become more likely.

It can be quite easy for a doctor to find out whether lymphedema is causing the swelling after cancer treatment. The simplest way is to measure the circumference of your arm (the distance around it).

The doctor might do some ultrasound scans too. Here the ultrasound waves are used to find out whether fluid is trapped somewhere in the blood vessels and lymph vessels. Other imaging techniques can also be used to diagnose lymphedema.

Treatment for lymphedema is usually made up of several elements: compression therapy, lymphatic drainage, exercises and skin care. Taking a combined treatment approach can help make the swelling go down and relieve the other symptoms.

Compression therapy: Compression bandages or "sleeves" are used to put light pressure on the arm, which makes it easier for the lymph vessels to drain lymph fluid. They are worn during the day and then taken off at night, but some people also leave them on overnight.

Lymphatic drainage: This is a type of massage that aims to help drain the trapped lymph fluid out of the body tissue. A physical therapist gently stimulates the tissue by moving their palms in gentle, circular motions.

Exercises: A program with suitable exercises is individually tailored to a person’s needs, and a physiotherapist also monitors the effects of the exercises. In the past, women were generally advised to get plenty of rest after breast cancer surgery. It was thought that exercise increases the risk of developing lymphedema. Studies have now shown that this is not the case.

Skin care: Lymphedema also affects the skin. So it is important to regularly care for your skin by applying moisturizers or lotions. Healthcare professionals can help you find suitable products.

When compression, exercise, lymphatic drainage and skin care is combined, there are hardly any side effects, and they are quite minor. Less than 1 out of 100 women have skin irritations, headaches or arm pain.

If the combined treatment doesn’t help enough, compression pumps can be used too.

Surgery may be an option if the lymphedema doesn’t improve enough from standard treatment. In Germany, only a few specialized centers offer surgery to treat lymphedema. These types of procedures are called “microsurgical” because they involve operating on very small blood vessels and tissue. Doctors use a microscope during the surgery to get a full view. The following types of surgery are available:

• Transplantation of lymphatic vessels or lymph nodes: Lymphatic vessels or lymph nodes are taken from another part of the body (such as the groin region), and then transplanted to the armpit area and connected with the blood vessels there. This can help allow for the improved flow of lymphatic fluid.
• Lymphovenous bypass (lymphaticovenular anastomosis): The lymphatic vessels are connected to small veins that the lymphatic fluid can flow into. This is done to avoid ( bypass) the blocked lymphatic vessel.

Studies suggest that these procedures can be effective. But more research is needed to better assess the pros and cons of these kinds of surgery.

Laser therapy is also sometimes offered, but it is difficult to say how effective it is.

Your physiotherapist will likely show you a few exercises or massage techniques that you can do at home. As long as the swelling does not get worse after doing these exercises or certain sports, there should be no reason to stop doing them. Even weight training exercises are possible.

Some people find that their symptoms get worse if they eat or drink certain things – like alcohol or very salty food, for example. But there is no scientific proof that food or drink has any effect on lymphedema. So it isn’t clear whether avoiding certain types of foods can help. One thing that is known, though, is that being overweight increases the risk of lymphedema. Studies suggest that losing weight can reduce the swelling in people who are very overweight.

Lymphedema is mild and not too uncomfortable in many women, who then usually find it quite easy to cope with it in everyday life. But even a small amount of swelling can have a negative effect on how a person feels about their body. If the lymphedema is mild, other people may not even notice the swelling. Having lymphedema after cancer treatment may be a constant reminder that you had cancer, though, and make it more difficult to feel healthy again.

People with severe lymphedema may find it hard to cope with the symptoms and take care of themselves. They might need help getting dressed, for example. Many people feel embarrassed about their appearance if the swelling is very bad. It can then help to realize that other people probably don’t notice it as much as you do. And even if lymphedema makes you feel embarrassed, getting out of the house and meeting up with others is important. If your lymphedema is really noticeable to others, it might help to think of a few simple ways to explain it to people.

If you are feeling depressed, it is very important to talk to your doctor or a counselor. People who have recovered from cancer usually return to a good or even better quality of life after a while. If this doesn’t happen, help may be needed. There are therapists who have experience helping people in these kinds of situations.

Many people find personal support and understanding for what they are going through in cancer support groups. Talking with other people who are facing the same problems might help you feel less alone and isolated. Others who have, or had, severe lymphedema will be familiar with the associated feelings of anger, resentment, embarrassment and fear.