Lymphedema in Childhood Cancer » Little Fighters Cancer Trust

Symptom Management, Palliative Care, or Supportive Care to relieve side-effects is an important part of cancer care and treatment and should always form part of the overall treatment plan.

Lymphedema is the abnormal build-up of fluid in soft tissue due to a blockage in the lymphatic system (the interconnected system of spaces and vessels between body tissues and organs by which lymph circulates throughout the body).

The lymphatic system helps fight infection and other diseases by carrying lymph, a colourless fluid containing white blood cells, throughout the body using a network of thin tubes called vessels. Small glands called lymph nodes filter bacteria and other harmful substances out of this fluid. However, when the lymph nodes are removed or damaged, lymphatic fluid collects in the surrounding tissues, causing them to swell.

Lymphedema most often occurs in the arms and legs, but can also occur in other parts of the body such as the head and neck, including below the chin, in the face, and, less often, inside the mouth. Lymphedema may develop immediately after surgery or radiation therapy, or it may only occur months or even years after cancer treatment has ended.

Symptoms

Relieving side effects is an important part of total cancer care and treatment, which is why you should discuss any symptoms your child is experiencing, new symptoms and changes in symptoms with their Oncology Team so that they can work out a regimen of palliative or supportive care for them.

Individuals with lymphedema in the arms or legs may experience the following symptoms:

Swelling that begins in the arm or leg matching the quarter of the body treated for cancer
“Heavy” feeling in the arm or leg
Weakness or decreased flexibility
Rings, watches, or clothing that becomes too tight
Discomfort or pain, although often there is no pain
Tight, shiny, warm, or red skin
Skin that does not indent at all when pressed, or hardened skin
Thicker skin (hyperkeratosis)
Skin that may look like an orange peel (swollen with small indentations)
The development of small warts or blisters that leak clear fluid

Symptoms of head and neck lymphedema include:

Swelling of the eyes, face, lips, neck, or area below the chin
Discomfort or tightness in any of the affected areas
Difficulty moving the neck, jaw, or shoulders
Scarring (fibrosis) of the neck and facial skin
Decreased vision because of swollen eyelids
Difficulty swallowing, speaking, or breathing
Drooling or loss of food from the mouth while eating
Nasal congestion or long-lasting middle ear pain, if swelling is severe

Symptoms of lymphedema may begin very gradually and are not always easy to detect. Sometimes the only symptoms may be heaviness or aching in an arm or leg. However, lymphedema may also occur suddenly.

If your child develops any symptoms of lymphedema, you should speak to their doctor as soon as possible to learn how the symptoms can be managed so the lymphedema does not get worse. Because swelling may be a sign of cancer, it is also important to see your child’s doctor to be sure the cancer has not come back (recurred).

Causes

Lymphedema is usually a predictable long-term side effect of some cancer treatments. The most common causes of lymphedema in cancer survivors include:

Blockage of the lymph nodes and/or vessels by the cancer itself, cancer treatment, or biopsies
Surgery in which lymph nodes were removed. For example, surgery for breast cancer often involves the removal of one or more nearby lymph nodes to check for cancer, which can cause lymphedema to develop in the arm.
Radiation therapy or other causes of inflammation or scarring in the lymph nodes and vessels
Metastatic cancer, which is cancer that has spread from where it began to another part of the body

The risk of lymphedema increases with the number of lymph nodes and vessels that were removed or damaged during cancer treatment or biopsies.

Sometimes, lymphedema is not related to cancer or its treatment; a bacterial or fungal infection or another disease involving the lymphatic system could also be the cause of lymphedema.

Diagnosis

A doctor is often able to identify lymphedema by performing an examination of the affected area. However your child’s doctor may also order additional tests to confirm a diagnosis, plan treatment, or rule out other causes of lymphedema.

These tests may include:

Measuring the affected part of the body with a tape measure to monitor swelling
Placing the affected arm or leg into a water tank to calculate the volume of fluid that has built up
Creating a picture of the lymphatic system with lymphoscintigraphy. This is a reliable test for confirming a diagnosis of lymphedema; however, it is not commonly used.
Monitoring the flow of fluid through the lymph system using an ultrasound
A Computed Tomography (CT or CAT) scan or Magnetic Resonance Imaging (MRI). These tests show the placement and pattern of lymph drainage and whether a tumour or other mass is blocking the flow of the lymphatic system. CT and MRI scans are not usually needed to diagnose lymphedema unless the doctor is concerned about a potential cancer recurrence.
Other tests that can be used in the diagnosis of lymphedema include perometry, which uses infrared light beams, and bioimpedance spectroscopy, which measures electrical currents flowing through body tissues. Neither test is widely available however.

Your child’s doctor may also perform other tests to make sure another illness is not causing the swelling and to rule out blood clots, heart disease, infection, liver or kidney failure, or an allergic reaction.

Stages

Doctors describe lymphedema according to its stage, a system that classifies the lymphedema from mild to severe.

Stage 0: Swelling is not yet visible even though damage to the lymphatic system has already occurred. Most individuals do not have any symptoms, and Stage 0 lymphedema may exist months or even years before swelling occurs.
Stage I: The skin indents when it is pressed and there is no visible evidence of scarring. Elevating the affected limb often helps reduce the swelling.
Stage II: The skin does not indent when it is pressed and there is moderate to severe scarring. Elevating the affected limb does not help the swelling.
Stage III: The skin has hardened, the affected body part has swollen in size and volume, and the skin has changed texture. Stage III lymphedema is permanent.

Management/Treatment

Treatments for lymphedema are designed to reduce swelling, prevent it from getting worse, prevent infection, improve the appearance of the affected body part, and improve the person’s ability to function. Talk to a member of your child’s healthcare team about any lymphedema symptoms they experience, including any new symptoms or a change in symptoms, so that treatment can begin as soon as possible.

Although treatment is able to control lymphedema, there is currently no cure. You may want to ask your child’s doctor to recommend a therapist who specialises in managing lymphedema. Lymphedema therapists are physical therapists, occupational therapists, or other health professionals who specialise in helping people manage lymphedema.

A therapist can assess your child’s condition and develop a treatment plan, which may include:

Manual Lymphatic Drainage (MLD) MLD is a specialised technique that involves a type of gentle skin massage to help blocked lymphatic fluid drain properly into the bloodstream. This may help reduce swelling. For best results, your child should begin MLD treatments as close to the start of lymphedema as possible. A member of your healthcare team should be able to refer you to a lymphedema therapist trained in this technique.

Exercise: Exercising usually improves the flow of the lymphatic system and strengthens muscles. A lymphedema therapist can show you specific exercises that will improve your child’s range of motion. Ask your child’s doctor or therapist when they can start exercising, which exercises are right for them, and whether they should wear a compression garment during exercise (see below).

Compression: Non-elastic bandages and compression garments, such as elastic sleeves, place gentle pressure on the affected area. This helps prevent fluid from refilling and swelling after decongestive therapy (see below). There are several options, depending on the location of the lymphedema. All compression devices apply the most pressure farthest from the centre of the body and less pressure closer to the centre of the body. It is important that compression garments fit properly and that they are replaced every 3-6months.

Complete Decongestive Therapy (CDT): CDT, also known as Complex Decongestive Therapy, combines skin care, manual lymphatic drainage, exercise, and compression. A clinician or therapist who specialises in lymphedema should perform CDT. The therapist will also teach you how to perform the necessary techniques your child at home and will tell you how often to do them. Ask your child’s doctor for a referral.

Skin Care: Because lymphedema can increase the risk of infection, it is important to keep the affected area clean, moisturised, and healthy. Apply moisturiser each day to prevent chapped skin. Avoid cuts, burns, needle sticks, or other injury to the affected area. When your child is outside, they need to wear a broad spectrum sunscreen that protects against both UVA and UVB radiation and has a sun protection factor (SPF) of at least 30. If your child cuts or burns themselves, they should wash the injured area with soap and water and use an antibiotic cream as directed by their doctor or nurse.

Elevation: Keeping an affected limb elevated often helps reduce swelling and encourages fluid drainage through the lymphatic system. However, it is often not practical to maintain an elevated position for a long time.

Low level laser treatments (LLLT): A small number of clinical trials, which are research studies involving volunteers, have found LLLT could provide some relief of lymphedema after a removal of the breast (mastectomy), particularly in the arms.

Medications: Your child’s doctor may prescribe antibiotics to treat infections or medications to relieve pain when necessary. Medicines called diuretics that reduce the amount of water in the body are not usually recommended.

Physical Therapy: If your child has trouble swallowing or other issues that result from lymphedema of the head and neck, they may need physical therapy.

Reducing Your Child’s Risk

Research continues to look into what factors cause lymphedema and what people can do to lower their personal risk. There is no proven way to completely prevent this condition, but there may be steps one can take to lower one’s risk. Talk with your child’s doctor if you have concerns about their risk of developing lymphedema.

Some ways in which you can reduce your child’s risk of lymphedema include:

Maintain a Healthy Weight: If your child is overweight, taking positive steps to manage their weight after a cancer diagnosis may help lower their risk of developing lymphedema.

Change Position Often: Your child should avoid standing or sitting for a long time and should not cross their legs when sitting. They should also prop themselves up with pillows in bed. An upright position improves lymph drainage.

Loose Fitting Clothes: If your child is at risk for developing head and neck lymphedema, they should not wear tops with a tight neckline. Children at risk for developing leg lymphedema should avoid tight shoes and socks, and protect their feet by wearing closed shoes, not flip-flops or sandals. Children at risk for arm lymphedema should wear clothing and jewellery that is loose and does not pinch or squeeze their arm or hand, like a tight sleeve or bracelet does, because this can cause the fluid to build up.

Limit Time In Extreme Heat Or Cold: Your child should avoid hot tubs or saunas, and limit hot showers to less than 15 minutes. They should also not apply a heating pad or ice to swollen areas.

Vaccinations, Injections, and IVs in the Unaffected Arm: Your child should avoid having blood drawn or blood pressure taken in their affected arm. Tell the doctor or nurse that they are at risk for developing lymphedema.

Know When to Seek Medical Care: Call your child’s doctor or nurse if your child shows any signs of infection; a fever (temperature higher than 38 degrees C); skin that is hot to the touch; or skin redness, swelling, or pain.