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Understanding Cancer-Related Lymphedema

by Ellen Poage-Hooper, ARNP, MPH, CLT-LANA

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Among the numerous side effects of cancer therapies, perhaps none is more misunderstood or underestimated than lymphedema. Once therapies are over, hair grows back, the appetite returns, energy is restored, but lymphedema is unpredictable. It can develop at any time, and if it does, man­aging it can be tricky. Until recently, resolution has not always been a possi­bility because therapy was not available. Getting immediate therapy is the ideal way to manage lymphedema.

Cancer-related lymphedema (also known as secondary or acquired lymph­edema) develops as a result of surgery, radiation, infection, or trauma to the lymph system. Treatments for any type of cancer, whether ovarian, prostate, breast, head, or neck, even melanoma or lymphoma, can cause lymphedema. The condition can develop immediately, or perhaps weeks, months, and even years after the fact. Although often de­scribed as “non-painful,” lymphedema can cause serious physical and psycho­logical distress, all leading to a decreased quality of life.

If you have never heard of lymph­edema, this is no surprise.
It is frequently overlooked because its diag­nosis is largely dependent upon the symptoms reported to the healthcare practitioner. Seemingly vague early warning signs are often dismissed as the discomfort one would normally expect following a surgical procedure. Symp­toms typically develop slowly and subtly. The condition usually occurs in the limb near the site where lymph nodes were taken for sampling, but it may also occur anywhere close to the surgical site. One day you may notice that your ring or watchband seems tight, and then it goes away. On any given day, you may feel tightness, fullness, or heaviness in the affected limb. This variability of symp­toms is a sign of early lymphedema.

Not everyone who experiences can­cer surgery or treatments develops lymphedema.
The major risk factor for lymphedema is number of lymph nodes affected by the procedures. The more nodes taken or radiated, the more likely you will develop lymphedema.

The major risk factor for lymphedema is number of lymph nodes affected by the procedures.

Author of Article photo

Ellen Poage-Hooper

If lymphedema develops, it is very important to seek the help of a certified lymphedema therapist immediately. Timely referral can help to prevent in­fections, fibrosis, and the burden of a heavy limb. The importance of early detection and treatment cannot be overemphasized.

Lymphedema is by its nature dif­ficult to both describe and diagnose.
As a result, it has only been over the last twenty years that recognized therapies for lymphedema have been developed. Of course, this does not mean that any­one with lymphedema can be cured – but one way that lymphedema can be treated and managed, even years after onset, is with complete decongestive therapy (CDT). Therapy begins with a com­prehensive assessment that includes measuring the area of swelling. CDT is a four-step process that starts with manual lymphatic drainage (MLD), a form of massage that stimulates the lymphatic system to move lymph fluid and decrease swelling. The second step is compression bandaging designed to encourage the continued flow of lymph. These are worn daily.

One benefit of early diagnosis is the possibility of treatment without wraps. While highly effective, bandaging is challenging because wraps are worn daily, and it requires learning the tech­nique to prepare for the self-care phase. However, excellent therapy results in excellent benefits. Just as you would help a painful hip by stretching and self-massage, you can help the lymph system with excellent attention to bandaging and simple MLD. The other steps of therapy include skin care and exercises. All four steps are continued in self-care.

Self-care is essential to managing lymphedema since it reduces disease burden and prevents disease progression. During self-care, the all-day bandages are replaced with a fitted compression sleeve and, if needed, nighttime wraps are used.

While lymphedema therapy is more available today, only heightened aware­ness will help lower the risk of developing chronic lymphedema. Be prepared to inform your healthcare pro­vider of your symptoms. And if you are not getting results from therapy, be prepared to find a new therapist. With lymph­edema, only one thing is certain: If you manage lymphedema, lymphedema will not manage you.

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Ellen Poage-Hooper is a family nurse practitioner with Rehabilita­tion Associates of Naples. She is a certified lymphedema therapist and has been provid­ing lymphedema therapy to individuals for over 15 years.

CDT is only one treatment strategy for cancer-related lymphedema. For more information about additional treatment op­tions, visit lymphnet.org or cancer.gov.

This article was published in Coping® with Cancer magazine, May/June 2011.