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Lymphedema: A Cancer Survivor Issue
Alexandra Andrews, John P. Cooke, MD, PhD, Andrzej Szuba, MD, PhD, Ernest H. Rosenbaum, MD and Robert A. Wascher, MD, FACS

Lymphedema is a chronic health problem that may cause pain, fatigue, loss of function, disfigurement (with self-image problems), distress, and anxiety. Lymphedema involves the chronic swelling of a limb, and is caused by the build-up of fluid (lymph) in the soft tissues. Lymphedema occurs when the lymphatic vessels are no longer able to drain lymph fluid efficiently from an extremity, resulting in a swollen limb.

The most common cause of lymphedema during adulthood is surgery involving the removal of lymph nodes (most commonly performed for breast cancer or melanoma). An additional potential cause of lymphedema is radiation therapy following cancer surgery. In fact, the greatest risk of lymphedema occurs when patients undergo radiation therapy in combination with surgery of the lymph nodes (chemotherapy may also have a modest additive effect). Chronic lymphedema may also lead to fibrosis, or thickening, of the fatty tissues beneath the skin. In addition to extremity lymphedema, truncal lymphedema may also occur in the breast or chest area following surgery for breast cancer.

In breast cancer patients, post-treatment lymphedema, when it occurs, most often involves the arm and hand on the same side as the breast cancer. Chronic lymphedema in such patients is frequently associated with the sensation of arm heaviness, discomfort, and decreased mobility of the shoulder. At times, these symptoms may occur before the patient actually notices the onset of swelling of the extremity.

Estimates of the incidence of lymphedema after breast cancer treatment range from 6 to 30 percent of all breast cancer patients. However, because the definition of lymphedema, as well as the grading of its severity, varies from one institution to another, the true incidence of post-treatment lymphedema is not well understood. Additionally, because many patients have never been educated about lymphedema, and many patients never seek medical evaluation for their lymphedema, many experts believe that the incidence of post-treatment lymphedema is probably higher than has been reported in the medical literature. (NCI Cancer Bulletin, May 29, 2007).

In some cases, patients may present with lymphedema prior to any treatment of their cancers, due to involvement of the lymphatic system with tumor cells. Cancers that have been associated with the new onset of lymphedema include breast cancer, melanoma, ovarian cancer, uterine cancer, cervical cancer, prostate cancer, testicular cancer, lung cancer, and lymphoma, among others. Other non-cancer causes of lymphedema include blood clots within the veins (deep venous thrombosis), abnormal function of the one-way valves in the large veins of the extremities (venous stasis), pregnancy, extremity burns or infections, extremity injuries, and limb surgery for non-cancer illnesses.

The recent development of sentinel node biopsy, rather than complete axillary or groin lymph node dissection, has helped to significantly reduce the incidence of lymphedema in those patients whose cancers have not yet spread to the lymph nodes. Also, new advances in radiation therapy planning and treatment have resulted in improved sparing of the tissues and organ adjacent to the site of the primary cancer, thus minimizing the extent of the radiotherapy field, and decreasing collateral damage to the tissues surrounding the tumor.

Unfortunately, it is currently impossible to predict which patients will go on to develop lymphedema following cancer therapy. Therefore, all patients should be advised of this potential risk of cancer therapy in advance of their treatment. Additionally, patients who are at increased risk of developing lymphedema should be proactively educated regarding activities that may increase the risk of extremity swelling. For example, constriction of an affected limb, through the prolonged use of a blood pressure cuff, or by wearing tight clothing or jewelry, can further damage tiny lymphatic vessels and trigger a build-up of tissue lymph fluid. Other triggers for fluid build-up are strenuous exercise, heavy lifting, excessive heat, or vigorous massage. Maintaining the affected limb below the level of the heart for prolonged periods of time will also increase the likelihood of limb swelling. Importantly, the affected limb is more prone to infections (cellulitis), as well. Infection may begin suddenly and progress rapidly. Infections within extremities affected by lymphedema can occur following even relatively minor trauma, such as a minor cut, or insect bites or stings. Oral antibiotics usually can cure the infection, but in severe cases, hospitalization for intravenous antibiotics may become necessary.

In some cases, lymphedema may lead to significant disability and disfigurement. Emotional distress associated with chronic lymphedema is not uncommon, and is often neglected by physicians. Therefore, the importance of addressing the psychological and emotional aspects of long-term disfigurement and disability in severe cases of lymphedema, especially with adolescent patients, cannot be overemphasized.

Decongestive physiotherapy is currently the gold standard treatment for lymphedema.

The two primary objectives of this form of therapy are:
1.To reduce the size of the limb through manual lymphatic massage, and use of non-elastic compression bandages, as well as proper skin care and total body exercise.
2. To maintain limb reduction size through a compression garment, exercise, and wrappings at night, as needed. (No Ace elastic bandages!)

Managing lymphedema is often a lifelong process. The following precautions will help cancer survivors with lymphedema to avoid infections, and to support their lymphedema reduction program:
- Avoid limb injuries, especially cuts, as well as animal scratches or bites or stings.
- Keep extremities dry and clean.
- Keep skin lubricated with moisturizing creams (for example Eucerin® cream) or oils to prevent chaffing of skin.
- Protect skin by using sunscreens and insect repellents.
- Protect fingers; for example, wear gloves to avoid injury especially when gardening or doing manual work.
- Use extra care when cutting nails, and avoid cutting cuticles.
- Use an electric razor rather than a blade for shaving the affected limb, to avoid nicks and skin irritation.
- Avoid blood draws and injections of the affected limb if possible.
- See your physician if the affected limb is red, or if a rash, swelling, pain, or fever should occur.
- Avoid the use of blood pressure cuffs on the affected limb, if possible.
- Take care of cuts or injuries to the limbs; see your physicians for treatment if you have any questions; a minor injury may lead to significant infection and worsening of preexisting lymphedema.
- Avoid wearing jewelry on affected arm or leg.
- Avoid heavy lifting.
- Avoid prolonged heat exposure (>15 Minutes) - for example, hot tubs and saunas.
- Bath water should be less than 102 degrees Fahrenheit.
- Dishwashing - It is important to avoid putting the affected arm in hot water since excessive heat might increase swelling. Try to wash dishes with the unaffected arm. Let the dirty dishes soak in hot water then scrub and rinse them with tepid water.
- Clean small wounds with warm soapy water and apply antibiotic ointment under a Band-Aid.
- Change dressings (bandages) on a daily basis (and more often if they become soiled or wet).
- Regular exercise appears to stimulate lymphatic drainage and reduce lymphedema, as long as elastic support (or hydrostatic pressure) is applied. Swimming is a particularly good physical activity, because the surrounding hydrostatic pressure of the water may help to decompress soft tissues during exercise. In addition, studies have shown that exercise programs (for example, isometrics and gentle stretching exercises), when carefully monitored by a physical therapist specializing in lymphedema, do not appear to aggravate limb swelling.
- When traveling in airplanes, support the affected limb with a compression garment. Decreased air pressure in airplane cabins can increase tissue fluid accumulation (edema), leading to increased lymphedema. Wearing your compression garment during airplane travel may, therefore, be helpful.

For more information on decongestive lymphatic therapy, please refer to Everyone's Guide to Cancer Survivorship (available in bookstores since October/November 2007), or (

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First appeared August 19, 2009