Lymphedema Basics

What is it?

Lymphedema is an abnormal collection of high-protein fluid just beneath the skin. This swelling, or edema, occurs most commonly in the arm or leg, but can also occur in other parts of the body.  The collection of the high-protein fluid attracts more fluid to the region thus increasing swelling.  It also can cause your body to have an inflammatory reaction resulting in scar tissue called fibrosis in the affected area. The presence of fibrosis makes it even more difficult for the excess fluid to be eliminated from the area.  All this fluid prevents the delivery of oxygen and essential nutrients to the area, which then can delay wound healing, create an environment for bacteria to grow, and increase the risk of infections in or below the skin.

Primary lymphedema is a hereditary condition.  Cancer patients are at risk of secondary lymphedema.  Secondary lymphedema is caused by the damage of lymph vessels or the removal of lymph nodes.  In cancer treatment, lymph nodes are removed when a tumor is removed to determine the spread of the cancer. Lymphedema is a chronic condition that cannot be cured, but it can be treated.

What are the symptoms?

The earliest symptoms of lymphedema can include achy, heavy limbs, a tingling in the limbs and maybe even some minor swelling that comes and goes. It is very important that these symptoms are not ignored and that you report them to your healthcare team right away. The earlier you treat lymphedema, the greater the chance of preventing it from becoming a larger, more severe condition.

What is the treatment?

Treatment of lymphedema is called complete decongestive therapy (CDT) and it is broken up into 2 stages: in clinic care and maintenance. The maintenance phase means applying the same treatment techniques to yourself, in your own home.  CMT is a non-invasive therapy that includes:

  • Manual lymph drainage (MLD) – This combines the gentle stretching of skin and deep breathing to reroute lymphatic fluid around the blocked areas
  • Compression bandages
  • Compression garments
  • Special exercises
  • Skin care – Those who suffer from lymphedema are at a greater risk of catching an infection from the bacteria that lives on our skin. Cleansing with low PH soap and using a low PH moisturizer are essential to managing lymphedema

Is lymphedema treatment covered by insurance?

If you have private health insurance, maybe. Coverage for the treatment of lymphedema gets very confusing because those treatments are bandages and garments and not medications.  The ACA (Affordable Care Act) requires all Marketplace plans to cover 10 general categories: (1) ambulatory patient services, (2) emergency services, (3) hospitalization, (4) maternity and newborn care, (5) mental health and substance use disorder services which includes behavioral health treatment, (6) prescription drugs, (7) rehabilitative and habilitative services and devices,(8) laboratory services, (9) preventive and wellness services and chronic disease management; and, (10) pediatric services, including oral and vision care.  The problem is that states are allowed to determine the definition of these categories.  Some states, like California, Louisiana, North Carolina and Virginia have laws that improve the coverage of compression supplies.  Some other states have legislation pending.  Bottom line, you need to call your insurance company and ask them very specific questions about lymphedema treatment coverage.

If you have Medicare, the coverage answer is generally no. Medicare’s failure to cover compression treatment supplies stems from the fact that these items cannot be classified under any existing benefit category in the Medicare statute. The Center for Medicare Services (CMS) does not have the authority to add or redefine benefit categories, only Congress does.  Right now there is a bill before Congress called The Lymphedema Treatment Act (HR1608 and S2373). This bill was first introduced in 2010, and has been reintroduced since then.  It has gathered more and more support over the years, but it is still a bill and not a law.

Lymphedema is very real and uncomfortable risk for cancer patients.  There are resources out there, like the National Lymphedema Network.  Educate yourself before your cancer treatment begins so you can be vigilant in recognizing the early symptoms of lymphedema.  Early treatment makes a difference.