For People With Lymphedema
Lymphedema (limf-uh-DEE-muh) is a build-up of lymph fluid in the fatty tissues just under the skin. It can develop after treatment for some types of cancer.
Lymphedema is normal right after surgery or radiation.
It’s normal to have some swelling right after surgery or during and just after radiation therapy. This may be called temporary lymphedema. This swelling usually goes away slowly over the next month or so.
Talk to your cancer care team about what you should expect and what you should do. They might suggest tips such as these to help ease the swelling:
- Use your affected body part as you normally would.
- Put your affected arm or leg above the level of your heart 2 or 3 times a day and keep it there for 45 minutes. It might help to lie down to do this, and use pillows to fully support your arm or leg.
- Talk to your doctor, nurse, or physical therapist before doing any exercises. Exercise is an important part of fitness, but you need time to heal after surgery and should follow the advice of your cancer care team.
- During and after radiation therapy, do simple stretching exercises each day to keep full movement in the treated area. Talk to your doctor, nurse, or therapist about what you should do. The tissue damage from radiation treatment can continue over many years, so plan to make simple stretching exercises a long-term part of your daily routine.
- If you notice tingling or strange sensations in the affected area after surgery or radiation, talk with your doctor, even if you haven’t noticed swelling. You may want to ask your doctor to refer you to a specialist who’s an expert in managing lymphedema.
You can find a certified lymphedema specialist near you by contacting:
Lymphology Association of North America (LANA)
National Lymphedema Network (NLN)
Chronic or long-term lymphedema starts months to years after treatment.
If you develop chronic lymphedema, your doctor can prescribe treatments to help reduce the swelling, keep it from getting worse, and decrease the risk of infection. All lymphedema treatments should be given by an experienced lymphedema therapist.
A certified lymphedema therapist can help you with skin care, massage, special bandaging, exercises, and fitting for a snug stocking or sleeve called a compression garment. This treatment is called complex decongestive therapy, or CDT.
Manual lymphatic drainage, or MLD, is the type of massage used as part of CDT to manage lymphedema. Daily CDT is used to reduce fluid volume as much as possible. (This may take a few weeks.) When the lymphedema is controlled as much as possible, a compression garment is used.
The therapist will also teach you things like how to care for the lymphedema at home and how and when to wear the compression garment.
Learning how to manage and control lymphedema is not only important for your health, but also for your overall well-being and quality of life. Be sure to get the help you need.
Most insurance companies pay for lymphedema treatment, but some do not cover the cost of compression garments and dressings. Check with your insurance company about coverage for these therapies.
Getting treatment early should lead to a shorter course of treatment to get your lymphedema under control. Again, it’s important to notice changes right away and get help as soon as possible.
Use of compression garments
Compression garments are fitted sleeves or stockings that can help control lymphedema. They can help reduce swelling by moving lymph fluid from the arm or leg back into the body. Careful fitting is needed, and you should follow your health care provider’s advice on use and care of the garment.
Be sure compression garments fit well and are worn properly. Do not use a poorly-fitting compression garment under any circumstances. This may make lymphedema worse.
Take care of yourself
It’s important to take good care of your skin – especially in the area with lymphedema. If not treated, lymphedema can lead to skin thickening and the soft tissues under the sin can become stiff and less flexible. (This is called soft tissue fibrosis.) Infection risk is also higher. Keep your skin clean and dry. Use moisturizers regularly to keep your skin from cracking.
You can find more on caring for your affected body part in For People at Risk for Lymphedema. The information there also applies to people with lymphedema.
How to care for cuts, scratches, or burns
- Wash the area with soap and water.
- Put an over-the-counter antibiotic cream or ointment on the area. Check with your doctor, nurse, or pharmacist if you’re not sure what to use.
- Cover with a clean, dry gauze or bandage. Keep the area clean and covered until it heals. Change the dressing each day and if it gets wet.
- For burns, apply a cold pack or cold water right away for at least 15 minutes, then wash with soap and water and put on a clean, dry dressing.
- Check every day for early signs of infection: pus, rash, red blotches, swelling, increased heat, tenderness, chills, or fever.
- Call your doctor right away if you think you have an infection.
Caring for your whole body
Taking care of your whole body is important, too. Here are some good ways to stay as healthy as possible:
Regular exercise is a key part of lymphedema management. But remember that for people with lymphedema, there are risks to both exercising and NOT exercising. This situation is much like exercising after a heart attack: not exercising can lead to further deconditioning (which is bad), but over-exercising may cause harm.
Trained health professionals such as fitness trainers and physical and occupational therapists can help you learn how to exercise safely. Contact the American Physical Therapy Association (APTA) at www.apta.org or 1-800-999-2782 to find a physical therapist near you who works with people with cancer.
Get to and stay at a healthy weight.
Obesity not only increases lymphedema risk, but also makes it harder to treat. Exercise and eating well are key to weight control.
- Eat more vegetables and fruits. Try for at least 2½ cups each day.
- Choose whole-grain foods instead of white flour and sugars.
- Cut back on red meat and processed meats like hot dogs, bologna, and bacon.
- If you drink alcohol, limit yourself to 1 drink a day for women and 2 drinks a day for men.
You also need people you can turn to for strength and comfort. Support can come in many forms: family, friends, cancer support groups, places of worship or spiritual groups, online support communities, or one-on-one counselors. You may want to get support from others with lymphedema. It helps to talk to people who understand what you’re going through.
To find support groups in your area, call us or contact the National Lymphedema Network at 1-800-541-3259 or online at www.lymphnet.org.
The American Cancer Society’s Cancer Survivors NetworkSM is a free online community created by and for people with cancer and their families. You can visit csn.cancer.org to get and give support, connect with others like you, find resources, and tell your story through personal expressions like music and art.
You can’t change the fact that you have lymphedema. What you can change is how you live your life – taking good care of yourself, making healthy choices, and doing what you can to make your body and your mind feel as good as possible.
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Last Medical Review: July 7, 2016 Last Revised: July 7, 2016