Understanding Lymphedema and Decreasing Your Risk

What is lymphedema?

The lymphatic system works to push lymph fluid through vessels and toward the bloodstream. It does this by skeletal muscle contraction, breathing, and nearby tissue movement. When the lymphatic system is not working properly, protein-rich fluid can build up, making tissues swell. This is called lymphedema.

Lymphedema can develop when lymph nodes are damaged or removed, most often during surgery, or when radiation therapy affects the lymphatic system. In some cases, the cancer itself can also block normal lymph flow. The lymphatic system normally drains and filters fluid in your body. When the lymphatic system becomes blocked or damaged, swelling can occur.

Lymphedema often affects the arms or legs, but it can also occur in the chest wall, abdomen, neck, or genital area—any area where lymph nodes have been impacted by treatment. Lymphedema can be uncomfortable and painful. Over time, it can even cause infection.

What are the signs and symptoms of lymphedema?

Lymphedema usually develops over time. Early signs and symptoms often include a feeling of “heaviness” or “tightness” in the affected area. Some people also have tingling or numbness in the area, but at first, there may or may not be swelling in the area.

 Other common signs and symptoms include:

• Feeling of heaviness/fullness, burning, and itching.
• Pain or discomfort that was not there before.
• Feeling achy.
• Puffiness.
• Decrease in range of motion/ feeling stiff.
• Clothing or jewelry feels tight.
• Skin that appears thicker or leathery.
• Skin may feel warmer compared to other areas of the body.

Early treatment of lymphedema is important. Tell your healthcare provider if you have any of these symptoms.

What parts of the body are most at risk?

Different cancers have different risk areas:

• Breast cancer: The breast, underarm, arm, and hand on the side of surgery and/or radiation.
• Head and neck cancer: Face, chin, and neck.
• Gynecologic, prostate, or other cancers in the abdomen/pelvis: The abdomen (belly), buttocks, genitals, legs, and feet.
• Melanoma (after groin lymph node dissection): The abdomen, buttocks, genitals, leg, and foot on the side of surgery.
• If lymph nodes were removed from the underarm (axillary) area, the risk is to the chest wall, arm, and hand on the side of surgery.

What increases your risk of lymphedema?

There is no research showing that lymphedema can be prevented. However, you can lower your risk of lymphedema by reducing the demand you place on the lymphatic system in the affected area.

There are both modifiable and non-modifiable risk factors for lymphedema. Non-modifiable risk factors are risk factors that you cannot control. Modifiable risk factors are ones that you can control.

Non-modifiable:

• The type of surgery or lymph node dissection you have had.
• How much radiation your lymph nodes received.
• Advanced stage cancer.
• Type of chemotherapy you have had.
• Older age.
• Rheumatoid or psoriatic arthritis.

Modifiable:

• Being overweight or obese.
• Weight gain after treatment.
• Infections, injury, or trauma to the affected limb.
• Lack of activity/movements.

Lymphedema Management

Managing lymphedema focuses on improving lymph flow, protecting the skin, preventing infection, and reducing swelling.

The main treatment for lymphedema is Complete Decongestive Therapy (CDT), which includes specialized manual lymphatic massage (MLD), compression garments/bandages, exercise, skin care, and self-care management.

Other Ways to Lower Your Risk of Lymphedema

Maintain a Healthy Weight

Obesity is a known risk factor for lymphedema. A balanced, healthy diet with a focus on portion control is recommended.

Exercise with Care

Having cancer and receiving treatment will change your body. Exercise is one of the best ways that you can maintain strength, energy, and mobility, and cope with cancer-related fatigue. Before starting any form of exercise, check with your healthcare provider. If you are not comfortable with starting exercise on your own, ask your healthcare provider for a script for physical therapy. A physical therapist can create an exercise plan of care for you that is safe and effective.

Take Care of Your Skin

• Keep your skin clean and moisturized.
  • Make sure to check with your provider about what kind of soap and moisturizers to use.
• Wash your hands regularly/use hand sanitizer.
• For arms and hands at risk: wear gloves when you wash dishes, while gardening, or when you use harsh chemicals for cleaning.
• For legs and feet at risk, wear shoes and socks at all times to prevent injury.
• If your leg and foot are at risk, you may want to have your toenails cut by a podiatrist (foot doctor).
• If you have peripheral neuropathy (decreased sensation in your hands or feet) from chemotherapy, look at your skin regularly since you may not be able to feel things like cuts, scrapes, or burns.
• Use an electric razor for hair removal.
• Have injections or blood draws in areas that haven’t been treated (example: if you have had a left lumpectomy, have your blood and blood pressure taken on the right side).
• Ask your provider when it is safe to get manicures/pedicures (based on your at-risk area).
  • If you decide to get a manicure or pedicure, bring your own sanitized tools.
• Clean cuts well with soap and water, and use an antibiotic cream.
  • Watch for signs and symptoms of infection and tell your provider right away if you are experiencing any of them.
• Avoid overheating the at-risk area, such as in a hot tub or sauna.
• Ask your provider about public swimming pools. Public pools have a lot of germs and harsh chemicals.
• Make sure to clean all equipment at the gym before and after use to avoid spreading germs.
• Protect your skin from sunlight. Use SPF 30 or higher, even on overcast days. Wear a hat and long-sleeved clothing to cover exposed skin and/or carry an umbrella when out during peak sun hours.

Limit Blood Flow Constriction

Constricting an area on your body can cause a 'backup' of fluid in the at-risk area. Ways to avoid constriction are to:

• Limit blood pressure readings on the at-risk arm when possible. If not possible, blood pressure can be taken on the affected arm using a stethoscope and a manual blood pressure cuff (not the automatic blood pressure machines).
• Avoid tight jewelry or clothing on the at-risk limb.
• After treatments affecting the underarm (axillary) lymph nodes, wear a well-fitted bra without an underwire.
• If you wear a prosthesis, make sure it is lightweight. A heavy prosthesis can put too much pressure on the lymph nodes above the collarbone.

Travel Safety

• If you are traveling a long distance, try getting up and moving around often. You can do seated stretches and move your legs and feet.
• If you are traveling by car, try to stop regularly at a rest stop and walk around.
• Wear comfortable, loose-fitting clothes and shoes.
• If possible, travel as light as you can. It is recommended to use a suitcase on wheels to reduce stress on your body. Ask for help when lifting and carrying your suitcase.
• Make sure you drink plenty of water to stay well hydrated while traveling.

What are the symptoms of infection?

If lymphedema goes untreated, there is a chance of infection. It is important to pay attention to any sudden changes in the affected area and to tell your healthcare team right away.

Signs and symptoms of infection are:

• Sudden increase in swelling.
• Intense pain or a different pain than you are used to.
• Redness or any change of color to your skin.
• Feeling warm or hot in the area.
• Flu-like symptoms such as fever, chills, and achiness.

If you are having any signs of infection, call your care team or go to your closest Emergency Department right away. DO NOT WAIT!

Next Article: Treatment for Lymphedema: Complete Decongestive Therapy (CDT) »