Lymphedema: What You Need to Know

One in eight women will be diagnosed with breast cancer over the course of her lifetime, and at least one in five of those women will develop lymphedema, a potentially devastating condition resulting from their treatment. Lymphedema is an incurable condition where fluid accumulates in the arms, chest, hands, and legs.

It’s been estimated that two-thirds of all cases of lymphedema are the result of cancer treatments that remove lymph nodes or damage the lymphatic system. Photo: Shutterstock

Lymphedema is a significant post-treatment issue for many cancer patients. It’s been estimated that two-thirds of all cases of lymphedema are the result of cancer treatments that remove lymph nodes or damage the lymphatic system. Breast cancer treatment is the leading cause of upper body lymphedema in the U.S.

Behind these statistics are real people. In fact, a staggering 700,000 people living with this condition that, if left untreated, can lead to pain, infection, disfigurement, and disability.

Radical and compassionate, Breast Cancer Action has always told the hard truths about breast cancer. And at a time when pink ribbons and slick corporate awareness campaigns are used to suggest we’re “winning the fight” when it comes to this devastating disease, we’re committed to uplifting the truth about and taking action to change what living with breast cancer and living through breast cancer treatments is really like.

That’s why Breast Cancer Action recently published a two-part series written by one of our members, Alexandra Fraser, who’s been living with lymphedema for five years. Alexandra’s descriptions of her experience are powerful and raw. She writes:

“Even on good days, I feel a pressure and tightness. My arm is heavy to carry around. The discomfort isn’t just in my arm; I also feel a constant tightness in my ribs. On bad days my diaphragm gets partially locked and my breathing is constricted. On those days, my abdomen becomes distended. With the additional arm girth, my wardrobe options are greatly diminished. It may seem superficial, but dressing professionally when you can only wear clothes with stretchy sleeves isn’t trivial. My wardrobe is now full of cardigan sweaters that are stretched tight over my left arm, and I typically blow out the left sleeve of each sweater in a few months.”

Lymphedema treatment requires essential medical supplies, such as special bandages and sleeves, yet many health plans don’t pay for these compression supplies. Foregoing or delaying treatment can result in rapid and unchecked progression of the disease. Unlike a swollen ankle or wrist after a fall, which heals with time, even with treatment lymphedema too often gets progressively worse.

That’s why Breast Cancer Action has been working to help pass the Lymphedema Treatment Act, which would improve private and public health plan coverage for compression supplies, promoting equal access to effective treatment regardless of insurance coverage.

Lymphedema and breast cancer

Surgery that removes lymph nodes in the armpit can damage the lymph system, blocking the vessels that carry fluid containing infection-fighting white blood cells. Lymphatic fluid can collect in the arms, hands, chest, or back, causing swelling and pain. Radiation treatment and cancer cells themselves can also interfere with the lymphatic system. And lymphedema can show up months or even years after breast cancer treatment.

Having more lymph nodes removed, and having radiation in addition to surgery, are both associated with greater lymphedema risk. There has, however, been a recent shift to less invasive surgeries, called sentinel node biopsies, which appear to reduce the incidence of lymphedema from surgery. This is because a surgeon can determine through a sentinel node biopsy whether there is actually a need to remove additional nodes.

Unfortunately, because of poor data collection we don’t have a concrete estimate of how many breast cancer patients develop lymphedema or the severity of their condition. Because there are no uniform diagnostic criteria, the reported incidence has varied from less than 5 percent to more than 50 percent. However, a 2013 meta-analysis did estimate that 21.4 percent of women experience arm lymphedema after being treated for breast cancer.

Other research suggests that if a person is younger at the time of a breast cancer diagnosis, if they are overweight, and if they are physically inactive there is a higher risk of developing lymphedema. One study suggests African-American women who aren’t obese also have an elevated risk.

How lymphedema is treated

Lymphedema is a chronic condition that can’t be cured, but it can be treated. Standard care, known as Complete Decongestive Therapy (CDT), includes physical therapy and the use of bandages and pressure garments to keep lymph fluid moving. Compression supplies typically last six months, before they need to be replaced. And treatment is necessary for the rest of a person’s life.

Without treatment, the build-up of fluid is left unchecked and can block nutrients from reaching cells, spur infection, and interfere with wound healing. When this happens, it’s not only painful, but dangerous, and can also be potentially life threatening.

Even with treatment, people living with lymphedema can get infections and the condition can get progressively worse. Management of the condition with prompt and consistent treatment is the best way to prevent the condition from quickly worsening.

The fight for insurance coverage of compression supplies

For years, activists have been working to fix the spotty health plan coverage of compression supplies that are integral to the effective treatment of lymphedema.

Currently, compression treatment supplies can’t be classified under any existing benefit category in Medicare statute (law). As a result Medicare, and also many private insurance policies that take their lead from Medicare, don’t cover the medically necessary doctor-prescribed compression supplies used daily in lymphedema treatment.

Patients who can’t afford the compression supplies required to maintain their condition suffer from recurrent infections, progressive degradation in their condition and eventual disability as a result.

Around 15 percent of the U.S. population is covered by Medicare, which means that anyone who receives healthcare through this federal program can’t get their compression supplies covered.

The Lymphedema Treatment Act would create an exception to Medicare’s durable medical equipment benefit, which requires covered supplies to have an expected life of at least three years, allowing for coverage of standard compression garments, which last just six months. While the bill would only change Medicare law, it’s an important step because Medicare sets the standard for Medicaid and private insurers.

Breast Cancer Action has been working alongside the Lymphedema Advocacy Group for the past 10 years to get Congress to pass the Lymphedema Treatment Act (LTA). The LTA has been gaining support ever since it was first introduced in 2010 by U.S. Rep. Larry Kissell (D-N.C.).

Now, thanks to a new House rule, we have an opportunity for a guaranteed vote if the bill gets 290 cosponsors. We already have over 200 cosponsors in the House and we’re over halfway to having the number of cosponsors we need to trigger a vote. Join Breast Cancer Action and tell your legislators to cosponsor the bill today!