If you have lymphedema, your arms, legs, feet and other areas of your body may look and feel swollen.  Lymphedema can be painful and may affect your ability to manage daily activities. Many people with lymphedema feel self-conscious about the ways it changes their appearance.

Lymphedema

Lymphedema usually starts with an arm or leg simply feeling “heavy” or “tight.” As it progresses, the arm or leg (or hand/foot) will slowly swell, rings or watches may suddenly seem too small, and shoes may not fit.  The limb may also ache, become less flexible or even itch.  Without treatment, the swelling will become more pronounced and the chance of infection from even a small cut or scrape will skyrocket.

Red, blotchy skin; pain in the lymphedema limb, and fever and chills are all signs of infection.  And bacteria can enter the bloodstream from anywhere in the body and travel to the lymphedema area, say experts.

Anywhere from 6 to 63 percent of breast cancer patients develop lymphedema (depending on the study you read), most as a result of radiation and/or the surgical removal of lymph nodes (obesity exacerbates the condition possibly due to excess inflammation). A joint Fred Hutch/NCI study that followed breast cancer patients for 10 years found 29 percent went on to develop lymphedema anywhere from two weeks to 11 years post diagnosis.

As for other cancers, a 2010 meta-analysis found that the overall incidence of lymphedema was 30 percent in sarcomas; 20 percent in gynecologic cancers; 16 percent in melanomas; 10 percent in genitourinary cancers and 4 percent in head/neck cancers.

Anyone who has had lymph nodes removed or radiated should be seen by a lymphedema therapist even if they don’t have swelling to get educated about the signs and symptoms and the things they can do to reduce the risk of getting it.

Treatment options:

Treatment options include lymphatic drainage massage, compression and, more recently, surgery.  Exercise – done correctly (patients should discuss this with a physical therapist or other lymphedema expert) – is another effective way to manage symptoms.

Being active can actually help stimulate the lymphatic system.  As long as they do slow progression, it doesn’t increase their incidence of lymphedema. People come out of cancer therapy or surgery with very moderate lymphedema and if they’re not educated on basic risk reduction and practices, they can exacerbate it.  Those at risk, for instance, may want to avoid the heat, wear a compression sleeve when flying and avoid putting extra weight, strain or constriction on their affected limbs.

Cancer patients should also be aware that lymphedema is commonly misdiagnosed by general practitioners.  The swelling in their legs can get so bad that part of the skin was hanging down like an extra appendage.  The earlier you catch it, the more manageable it is but just getting a diagnosis and getting recognition of it is difficult.  We’re going to start doing pre-surgical baseline extremity measurements in cancer patients, so we’ll know when we start to see signs of swelling earlier.

Lymphedema and the law:

But even if lymphedema is diagnosed early, treatment may not be covered by insurance.

Patients went without custom compression garments for years because they couldn’t afford the out-of-pocket costs.  One custom-made sleeve and glove cost $1,000 and the single custom leg compression garment.  Most patients require a pair of compression garments every six months for each affected limb.  Without compression, the lymphedema flourished.

A 2009 study that showed women with breast cancer-related lymphedema (BCRL) incurred an average of $7,000 more in health care costs per year than those without BCRL.  Compression is a minimal cost for an insurance company.  And it’s a lot cheaper to have a patient in a compression garment than to pay for the cost of IV antibiotics or hospitalization.

A bill known as the Lymphedema Treatment Act, sponsored by Washington State Rep. Dave Reichert may help change the protocol.  The bill, a patient-driven grassroots effort, is under consideration by two House committees.  Its aim, according to the LTA website, is to “improve coverage for the treatment of lymphedema from any cause by amending Medicare statute to allow for coverage of compression supplies.” Changing the Medicare law could set a precedent for Medicaid and private insurers to follow.

“There is absolutely no reason why the Centers for Medicare & Medicaid Services should not reimburse the cost of a sleeve for any patient with lymphedema,” he said. “It’s controlling the symptoms, it’s non-toxic and it’s not expensive.  I don’t understand any rationale for not reimbursing for compression.  It only takes a few patients with a $100,000 hospital bill to more than offset what they view as cost savings by not preventing infections with a compression sleeve.”

How to Treat Lymphedema:

Manual lymphatic drainage: This specialized type of skin massage mobilizes and moves built-up fluid to areas of the body where it can be absorbed.

Good skin care: Maintaining healthy skin through scar care, moisturizing and careful shaving is important for avoiding infections.  Even a small cut or scrape can potentially lead to problems because of an inefficient lymphatic system.

Exercise: Some patients believe if they don’t move, they won’t swell, but the opposite is true.  We move fluid by pumping our muscles, so being active is very, very important.  Precautionary steps must be taken to not aggravate lymphedema, but the benefits outweigh the risks.

Compression: If limbs are swollen, they must be compressed.  Special types of bandages are initially used in physical therapy to reduce swelling and then patients are fitted with a compression garment to maintain reductions.  Compression is an important key for treating lymphedema.

Surgery: In recent years, new surgical procedures such as lymph node transfer have been developed that provide relief from swelling and discomfort and generally make lymphedema easier to manage.

We encourage all cancer survivors to be proactive in learning about this condition.  With help, you can learn strategies to be able to manage it on your own.

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