What is lymphedema?

Lymphedema happens when there has been injury or damage to the lymph system. This injury/damage does not allow for the proper drainage of fluid. This can cause extra fluid building up and causing swelling in the arms, hands, and legs which can lead to lymphedema.

What causes lymphedema?

There are many causes such as, surgery to remove lymph nodes, radiation of lymph nodes, vascular disease, obesity, and other trauma to the lymphatic system.

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Surgery: The doctor may remove some of the lymph nodes from the underarm or groin to see if cancer has spread. Some lymph vessels that carry fluid from the arm or leg to the rest of the body are removed also because they are entwined with the nodes. This changes the way the lymph fluid flows on that side of the body. If the lymph vessels that remain cannot remove enough of the fluid in the chest or limb area, then swelling (lymphedema) occurs.

Radiation: Radiation treatment to the lymph nodes in the under arm or groin can affect the flow of lymph fluid in the arm and chest, or leg area, in the same way.

Radiation can result in fibrosis (rubbery and firm tissue) and can cause blocking of the lymph system.

Patients who have both surgery and radiation to the lymph nodes have a higher risk of lymphedema than if they have either treatment alone.

What are the symptoms of lymphedema?

  • Slight swelling, making your rings feel tight on your fingers.

  • Severe swelling, causing your entire arm or leg to be very swollen.

  • Your arm or leg may feel achy, tired or heavy.

  • Numbness/tingling of the involved arm(s) or leg (s).

When does lymphedema occur?

Lymphedema can occur weeks to even years after surgery. Be sure to follow the measures on the next page to reduce your risk.

Ways to Reduce Your Risk

Prevent Infection

Your body responds to infection by making extra lymph fluid to fight the infection. You may be more likely to get an infection in the affected limb because the lymph channels have been damaged or removed. This can trigger lymphedema.

  • Avoid sun burns. Use sunscreen that is labeled “SPF 15” or higher.

  • Use oven mitts.

  • Avoid oil splash and steam burns from cooking.

  • Clean even small cuts right away with soap and water. Use an over-the-counter antibacterial cream after they are cleaned. Cover them with a bandage.

  • Have all shots, Is blood draws, or blood pressure tests done on the unaffected arm if you can.

  • Wear gloves when working in the garden, using strong cleaning products, or cleaning up after pets.

  • Use a thimble when sewing.

  • Use an electric razor if shaving under your arm or on your legs to prevent cuts or nicks or choose a shaver with rounded heads.

  • Use bug spray when outdoors to avoid bug bites. If you get stung by a bee in the affected arm or leg, clean and elevate it, apply ice, and contact your doctor if it becomes infected (warmth, redness, swelling, fever).

  • Use your washcloth to gently push back cuticles while in the shower instead of cutting them.

Avoid Saunas/Hot Tubs

Avoid spending time in saunas or hot tubs since heat can increase fluid build-up.

Control Your Weight

Try to avoid gaining weight because extra fat in the arm or leg requires more blood vessels. Fat tissue makes more fluid in the arm or leg and places a greater burden on the lymph vessels that are left.

Exercise Regularly

Slowly return to your past level of activity after surgery. This will reduce your risk of strain which can lead to injury.

During radiation and up to 18 months after, do simple stretching daily to keep your range of motion.

Research shows that regular exercise at a level that is right for you, can reduce symptoms of fatigue, improve strength, improve sleep, decrease pain and reduce your risk of lymphedema.

Helpful Hints for Your Upper Arm

Exercise your affected arm while it is raised by opening and closing your hand and bend and straighten your elbow 15 – 30 times. Repeat these 3 – 4 times a day. This will decrease swelling by pumping lymph fluid out of your arm.

When you have full motion of your arm and shoulder, you may increase exercise. Start with a 1-pound weight and increase when you can easily complete three sets of 10. If you don’t have weights, use a soup can or a bottle of water.

Use your unaffected arm to carry heavy things with shoulder straps such as suitcases and handbags. Use both arms when you carry packages, children or foods, to reduce strain on the affected side.

Helpful Hints for Your Lower Leg

Return to walking and exercise when your doctor says it is okay. Start slowly, add time or distance, and slowly increase each time you exercise.

Exercise your affected leg while it is raised by squeezing your butt muscles, pressing your knee into the bed, and pumping your ankle for 10-15 times. Repeat this 3-4 times a day. This will decrease swelling to allow the muscles to pump excess fluid out of the leg.

If swelling is present right after surgery, elevate your leg on pillows at night and as able during the day. Talk with your health care team about compression stockings if it stays swollen.

Lymphedema Measurements and Treatment

Some people develop lymphedema, even when all tips are followed.

During your follow-up visits, you may have measurements taken of the affected limb(s). If there are major changes you may be sent to a therapist trained in lymphedema therapy.
Exercises may be prescribed to help reduce swelling and increase movement.

A therapist may train you in massage to open lymph channels to help reduce swelling.

A special snug fitting sleeve (a compression sleeve or stocking) may be ordered for you to wear. Some patients learn how to bandage their arm or leg with special lymphedema bandages to reduce their swelling.

When to Call

Your arm or leg stays swollen and/or painful for several days. This may be as little as your rings feel tight on your fingers, or your whole arm or leg may be swollen.

You have constant symptoms of lymphedema like achy, tired and/or numbness/tingling of the involved arm or leg.

You have any sign of infection in your arm or leg (redness, warmth, swelling, drainage, fever).

Your arm or leg feels heavy and tight, or your hand, wrist or ankle is less flexible.

You can’t move the involved arm or leg as much as before.

You get thick cords in your under-arm area that you can see or feel when you lift your arms over your head.

The skin is hard or changes color on your involved arm or leg.

The sooner lymphedema is noticed, the better the treatment will work to reduce the effects.

If you need a referral, below is a list of the clinics with therapists trained in lymphedema:

Wisconsin Clinics

Yahara Rehabilitation Clinic
1050 East Broadway
Monona, WI 53716
Scheduler: (608) 890-6110
Fax: (608) 221-6250
Voice Mail: (608) 221-6253

UW Health East Madison Hospital
4602 Eastpark Blvd.
Madison, WI 53718
Phone: (608) 263-7540

UW Health Hospital
600 Highland Ave., E3/211
Madison, WI 53792
Phone: (608) 263-8060
Fax: (608) 262-7679

UW Health Hand Clinic
1 South Park Street
Madison, WI 53715
Phone: (608) 890-6170
Fax: (608) 890-6718

Northern Illinois Clinics

Ninth Street Center Outpatient Therapy
209 Ninth Street
Rockford, IL 61104
Phone: (779) 696-4590
Fax: (779) 696-5869

Regional Cancer Center Oncology Rehabilitation
3535 N. Bell School Road
Rockford, IL 61114
Phone: (779) 696-4590

Orthopedic and Sports Therapy Center
(YMCA)
8451 Orth Road
Loves Park, IL 61111
Phone: (779) 696-4590

Stateline Clinic Physical Therapy
4282 E. Rockton Road
Roscoe, IL 61073
Phone: (779) 696-4590

Medical Center- Belvidere Physical Therapy
1624 S. State Street
Belvidere, IL 61008
Phone: (779) 696-4590