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Living with lymphedema

Author: Mia James

Cancer is anything but straightforward. You may feel that just as you’ve addressed one issue or gained an understanding of the disease process or treatment plan, you encounter another challenge. For some cancer patients, lymphedema is one such added complication. Fortunately, education and proper management can help you keep symptoms under control.

About lymphedema

Lymphedema results from a compromise in the lymphatic system that decreases its ability to function, including filtering or draining excess fluids, waste, and toxins from the body. Inadequate drainage can cause swelling, or edema— called lymphedema in this case because the lymphatic system is involved.

The lymphatic system can be compromised when one or more lymph vessels or nodes (small organs distributed throughout the body that transport and filter or trap foreign particles and waste) are surgically removed or stop working properly due to disease. A common example of lymph node removal is for the treatment of breast cancer, as this disease may spread to the nodes under the arm. Lymph nodes, however, are found elsewhere in the body as well, such as the neck, abdomen, and groin, so other types of surgery can also affect them.

Simply put, according to Lisa Poormon, PT, DPT, MEd, CLT, a physical therapist at Cancer Treatment Centers of America® (CTCA) in Goodyear, Arizona, lymphedema is a “messed up plumbing system,” with the culprit being poor drainage. When the “drains” of the lymphatic system don’t work correctly, excess protein-rich lymph fluid isn’t pumped out of the tissue and begins to build up.

Excess lymph fluid contains large molecules, including dead cells, bacteria, and proteins. The body depends on the lymphatic system to remove these molecules from the tissue. If these proteins are stuck in the tissue, they draw water toward themselves—a sequence of events that Poormon says “adds insult to injury,” as increased protein in the tissue leads to more swelling.

Lymphedema occurs in four stages, the last three of which are active. In stage 0, or latency, the transport capacity of the lymphatic system is reduced due to a mechanical dysfunction caused by trauma such as surgery, radiation, or missing lymph nodes, but swelling isn’t visible. If latency progresses to stage 1, mild lymphedema, some swelling becomes noticeable. By stage 2, moderate lymphedema, the tissue starts to harden. This is followed by stage 3, severe lymphedema, where the tissue is harder and the affected limb becomes very large and swollen, a condition known as elephantiasis.

As lymphedema progresses through active stages, the consequences become increasingly serious. Poormon explains that frequent infection becomes a growing risk and that a patient’s ability to function may be jeopardized. “The larger that limb becomes, the heavier it becomes and the less function you will have,” she says. With increased weight and girth of the limb, range of motion can be reduced and ability for self-care and mobility are threatened.

Signs and symptoms

If you’ve undergone any type of procedure that’s affected your lymphatic system or have had an illness that involved it, you may be at risk of lymphedema—a risk that persists for life. Prevention is, of course, essential, as is awareness of signs and symptoms of the condition. Poormon says that patients often report tightness, tingling, numbness, or heaviness in the affected limb. As well, there may be pain, color, and temperature variations compared with the other (unaffected) limb. Swelling is of course a symptom as is a decrease in strength or range of motion. And because lymph node removal can compromise immunity in the affected limb, skin changes (such as a rash) may indicate infection and may also signal lymphedema.

Are you at risk?

Though surgery for breast cancer is commonly associated with lymphedema, Poormon says that risk extends to any type of intervention that affects the lymphatic system. This includes, she explains, “any surgeries, whether in the groin, in the abdomen, under the arm, or on the head and neck.” As well, radiation or any type of disease that affects the lymphatic system’s ability to drain results in a risk of lymphedema.

Elvira “Vera” Stabolito of Peoria, Arizona, can attest to the importance of understanding the risk of lymphedema. She says that when she was diagnosed with and treated for metastatic breast cancer in 1988, she didn’t really understand her risk, even though she had nine or 10 involved nodes. As a result of Vera’s inadequate education 13 years ago, the now-60-year-old took little precaution, dismissing what she now knows were signs of lymphedema (such as pain and swelling) as age-related changes. “I guess I was having lymphedema all these years,” she says, “but it was never explained to me.”

It’s unclear why some people develop lymphedema whereas others do not. There are, however, a few known factors that may increase your risk, Poormon says. Obesity, severe fatigue, susceptibility to infection, and heavy trauma to the lymphatic system (such as multiple surgeries and radiation) can increase risk.

Prevention

The key word in lymphedema management, according to Poormon, is early. “Education and early intervention are huge pieces to lymphedema management,” she says. In other words, learn about lymphedema before it becomes a risk or an issue.

Victoria Magnan, OTR, CLT, a lymphedema therapist in the Milwaukee, Wisconsin, area, says prevention can begin before a patient leaves the hospital. For example, she explains that breast cancer patients can be given a compression sleeve immediately after surgery and educated about how to use it as well as about other strategies for managing risk. Air travel, says Magnan, is one area in which patients with a compromised lymphatic system need to be particularly vigilant. Proactive measures include staying hydrated with water or juice (no carbonated drinks); avoiding salt before, during, and after the flight; and wearing a compression garment. “The [air] pressure changes when you fly, so if you’re on a plane, you’re hugely at risk,” Magnan explains.

In addition to air travel, certain everyday activities can elevate lymphedema risk. For example, carrying or lifting heavy objects is a risk factor when arms are affected. Magnan advises patients to always consult their doctor before attempting any activity that involves the upper body, including exercise programs. Other things to avoid include extreme temperatures and having blood pressure taken or needle sticks (injections and blood draws) in the affected arm. Skin care precautions (described further below) should also be taken. Magnan says that anyone at risk of lymphedema needs to follow these safety measures, as well as the air travel precautions described above, for life.

Management

According to the National Lymphedema Network, lymphedema therapists may have a background in several health care fields, including nursing, occupational therapy, and physical therapy, and have additional training to treat lymphatic disorders. The professional designation CLT, which stands for certified lymphedema therapist, indicates specialized lymphedema training and certification. The Lymphology Association of North America offers a further national certification exam to providers who have met certain educational requirements.

Lymphedema management is a multistep process, with each facet playing an indispensable role. The protocol, says Poormon, is called complete decongestive therapy (CDT), a program that includes skin care, manual lymph drainage, compression therapy, and decongestive exercises. Of the importance of following through with all four elements, Poormon says, “You truly need all four of those things to manage lymphedema. You can’t do just one thing.”

Here’s a look at the four elements of CDT:

  • Skin care. Due to the elevated risk of infection associated with a compromised lymphatic system, meticulous skin care is a must. This involves keeping limbs very clean, pH balanced, and moisturized. It’s critical to avoid anything that might carry a risk of introducing bacteria or infection to the limb; examples include manicures and pedicures, shaving with a razor that can nick the skin (electric is an alternative), and needle sticks (injections or blood draws) to the affected limb. Poormon also recommends sensible precautions like wearing gloves while gardening.
  • Manual lymph drainage (MLD). This gentle massage technique stretches the skin superficially to stimulate the lymph vessels immediately under the skin. The slow, rhythmic stretch encourages builtup protein-rich fluid to move toward healthy areas of the lymphatic system so that it can be taken back into the circulatory system and processed properly through the body. “I work on awakening the lymph nodes and draining all of that [built-up] fluid,” says Magnan of a therapist’s role in MLD, though she also explains that patients can learn to perform this technique themselves. Poormon underscores the importance of MLD, explaining that it’s the only way to mobilize the proteins that have accumulated in the tissues back into the system.
  • Compression therapy. Compression therapy involves a specific multilayer bandaging technique performed by a therapist as well as the use of compression garments, including sleeves, hosiery, and gauntlets (for hands). Bandages and garments won’t, however, mobilize the proteins out of the tissue—MLD is needed to get the solid components moving. Compression therapy is used to aid the reabsorption of fluid. The combination of MLD and compression therapy can have near-instant results. “With the MLD and the bandaging, they see results within the first day,” says Magnan. Compression garments can also be used to manage lymphedema in at-risk limbs during air travel.
  • Decongestive exercises. Exercise, says Poormon, can help get the lymphatic system working. “There are so many reasons to exercise,” she explains, citing additional benefits such as increased muscle and decreased fat, both which can help manage lymphedema. Suggestions for exercise include walking, biking, dancing, and swimming, but you should first discuss any activity with your doctor. For upper-limb lymphedema, extra precaution should be taken with lifting and repetitive upper-body motion, as these activities can aggravate lymphedema.

Vera, whose lymphedema was finally identified this year when she was treated for a breast cancer metastasis on her mediastinum, says that lymphedema therapy has helped her manage symptoms dramatically. Beginning with MLD, she says, “It was almost immediate relief.” She also says that she feels significantly less pain and is learning therapeutic exercises as well as what types of activities to avoid (such as repetitive motion like scrubbing and carrying heavy objects).

Be proactive

The encouraging message about lymphedema is that effective management and skilled experts are available to help you. Your responsibility, according to Vera, is to educate yourself as soon as possible. “Get informed. Don’t wait for them to tell you,” she says. This proactive approach can allow you to live well with lymphedema, as Vera explains: “Make sure that you learn everything you need to continue living a fruitful life.”

Lymphedema resources

Books:

  • Lymphedema: Understanding and Managing Lymphedema after Cancer Treatment by the American Cancer Society (American Cancer Society, 2006)
  • Lymphedema Caregiver’s Guide: Arranging and Providing Home Care by Mary Kathleen Kearse, Elizabeth Jane McMahon, Ann B. Ehrlich, and Paula J. B. Stewart (Lymph Notes, 2009)
  • 100 Questions & Answers about Lymphedema by Saskia R. J. Thiadens, Paula J. Stewart, and Nicole L. Stout (Jones & Bartlett, 2009)

Websites:

  • National Lymphedema Network, lymphnet.org
  • National Cancer Institute, cancer.gov
  • LympheDIVAs, lymphedivas.com
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