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Lymphedema Guide
John P. Cooke, MD, PhD, Andrzej Szuba, MD, PhD, and Ernest H. Rosenbaum, MD
Modified from Everyone's Guide for Cancer Supportive Care

Lymphedema Quality of Life Issues
Decongestive Lymphatic Therapy Appears to Be the Superior Therapy

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Lymphedema is a swelling caused by a buildup of fluid (lymph) in the soft tissues of the limbs. It rarely occurs in other parts of the body (head, trunk). This buildup often occurs after surgical removal of lymph nodes or radiotherapy to lymph nodes (because of blockage of the lymphatic system) and sometimes after chemotherapy.

Lymphedema is a chronic problem causing distress, pain, and loss of function, anxiety, and daily reminder of a persistent cancer problem. It may develop soon after surgery or radiotherapy or months or years post therapy. There are fewer cases since newer treatment such as sentinal node biopsies are used rather than axillary lymph node dissection. New advanced radiotherapy treatment planning has improved, minimizing the extent of radiotherapy.

Lymphedema occurs often after infections and sometimes may occur without an identified cause. In rare cases, lymphedema may be caused by a genetic abnormality (mutation) and family members may be affected. Gaps in our understanding of lymphedema have limited treatment, but recent advances in genetic studies and imaging - x-rays, scans, ultrasound, (x-rays dye study of the lymphatic system) - as well as insights gained from physiologic studies, hold promise of a more definitive therapy.

The lymphatic vessels become incompetent and no longer drain lymph fluid from the extremities, resulting in a swollen limb. It occurs after a tight constriction of an affected limb, such as use of a blood pressure cuff, tight clothing or jewelry, and can trigger a build up of tissue lymph fluid from damaged tiny lymphatic vessels. A major cause can be an infection in the limb at risk due to even a minor cut or bruise. Other causes include strenuous exercise or heavy lifting, excessive limb heat or vigorous massage resulting in excessive limb fluid buildup.

Lymphedema is usually a chronic problem but it may be permanent. Where cancer is involved, lymphedema is most often seen after breast surgery and/or radiotherapy (15-30% of women may develop lymphedema after breast cancer treatment). However it may occur in upper or lower extremities (arms or legs) in connection with almost any other malignancy (like malignant melanoma, ovarian, cervical, testicular, or prostate cancer and others). In lymphedema related to cancer treatment, it is surgical lymph-node dissection and radiotherapy that causes damage to the lymphatic system.

Chronic lymphedema may result in minor swelling and discomfort. Occasionally it leads to a grave disability and disfigurement. Survivors who have had surgery and/or radiation therapy for cancer might be at risk of lymphedema.
Note: The affected limb is more prone to infections (cellulitis). Infection may begin suddenly and progress rapidly. Oral antibiotics can usually cure such infection, but in severe cases, hospitalization for IV antibiotics might be necessary.

The following precautions will help survivors to avoid infections and support their lymphedema program:1
Avoid limb injuries, especially cuts, bruises. and animal scratches.
Keep extremities dry and clean
Keep skin lubricated with moisturizing creams or oils to prevent chaffing of skin such as Eucerin cream
Protect skin from excessive sunlight (use sun screens and insect repellents)
Protect your fingers. For example, wear gloves to avoid injury especially when gardening or doing manual work
Avoid cutting your cuticles and use extra care when cutting your nails.
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 limb is red, or if rash, swelling, pain, or fever occur
Avoid the use of blood pressure cuffs on the affected limb
Take care of cuts or injuries to the limbs; see your physicians if you have any questions.
Avoid wearing jewelry on affected arm or leg
Avoid heavy lifting.

In a study on breast cancer women with lymphedema at baseline using twice a week weight training supported the hypothesis that the intervention of resistant exercise did not increase the risk or exacerbate symptoms of lymphedema. (Reference Ahmed RL, Thomas W, Yee D et al. Randomized Controlled Trial of Weight Training and Lymphedema in Breast Cancer Survivors; J Clin Oncol 24 #18, June 20 , 2006) Use of exercise programs carefully monitored by a specialized lymphedema physical therapist (isometrics and gentle stretching exercises) did not aggravate a limb causing swelling. Discontinue repetitive, range of motion stretching exercise if lymphedema worsens. Exercise can help stimulate lymphatic drainage and has been shown to be efficacious.

When traveling in airplanes, support limb with a compression garment. Decreased air pressure in airplane cabins can increase tissue fluids, causing the onset of lymphedema. Prophylactically wearing a compression garment can be helpful.

Avoid prolonged heat exposure (>15 Minutes) - for example, hot tubs and saunas
Baths should be less than 102 degrees
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 Band-Aid. Change dressings (band-aids) often.

Lymphedema Quality of Life Issues
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Emotional problems associated with lymphedema are not uncommon and are often neglected by physicians. The need to address the psychological aspects of long-term disfigurement, especially with adolescent patients, cannot be overemphasized. In discussing these issues with the patient, the physicians should be realistic about the possibility of progression, but should emphasize the patient's ability to modify the course of lymphedema by careful attention to the details of the medical program.

Some patients become sedentary in response to uncomfortable or heavy sensations in the affected limb. Reduced physical activity at work and at home leads to apathy and malaise; these can be avoided by encouraging physical activity with proper support hose. Regular exercise appears to reduce lymphedema as long as elastic support (or hydrostatic pressure) is applied. Swimming is a particularly good activity because the surrounding hydrostatic pressure of the water means compressive support isn't needed.

Elastic support hose should be fitted to the patient's limb after the edema has been reduced as much as possible by compression and elevation. This is important, because the stocking does not reduce the size of the leg but only maintains the circumference to which it is fitted. If the limb is fitted for a stocking while in a swollen state, it will be maintained by the stocking in a swollen state.

Decongestive lymphatic therapy is a proven and safe technique to reduce lymphatic swelling. It consists of manual lymphatic massage, compressive bandaging and decongestive exercises. It usually takes several days to achieve significant volume reduction. After edema is sufficiently reduced, the arm or leg is fitted for a compressive garment that should be used daily. It should be put on first thing in the morning before getting out of bed. Daily treatments for 2 or 3 weeks on manual lymphatic drainage may be needed to initially control lymphedema by gently stimulating the lymphatic system and redirecting lymphatic fluid for decongestion.
Self-applied manual lymphatic massage is also recommended for better control of lymphedema by home therapy. Home training is recommended with follow up visits to assure control is adequate.
1. The compression garment is measured after initial lymphedema control is attained. Instructions by a lymphedema specialist on how to apply how to apply specialized lymphedema bandages and lymphatic massage is necessary
2. An improperly fitted sleeve garment can provoke lymphedema rather than support the lymphatic system.

Pneumatic compression pumps might be used in conjunction or separately to reduce or maintain arm or leg volume if needed.

To maintain the reduction of limb volume, patients may have to wear a compressive garment. This is particularly important during airplane flights and exercises. Self-applied massage is also recommended. Some patients benefit from devices like the Reid sleeve (Reid sleeve of Stanford).

Decongestive Lymphatic Therapy Appears to Be the Superior Therapy
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Special physiotherapy is an effective way to treat extremity lymphedema. Several variants of this treatment have been developed in different centers. Vodder, Foldi, and Casley-Smith are among the pioneers of physiotherapy treatments for lymphedema; their schools provide training for physiotherapists around the world. Principles of physiotherapy for lymphedema were outlined in the Consensus Document of the International Society of Lymphology. Physiotherapy treatment of lymphedema has four key elements:
1)Manual lymphatic drainage - special type of light massage, which stimulates function of lymphatic system and increases lymphatic flow
2)Compressive bandaging - multilayered wrapping with low-stretch bandages that provide gradient compression of the arm or leg
3)Decongestive exercises - special exercises designed to alleviate edema
4)Meticulous skin care - to avoid skin infections.

Typical treatment starts with establishing a daily routine:
1. A skin protection program using moisturizing oils or creams. Meticulous skin care is necessary to prevent skin breaks and subsequent infections.
2. Wear daily (as long as necessary)- the lymphedema garment (with hand gauntlet as needed
3. Manual lymphatic massage (usually 20 - 60 minutes daily). Massage is first applied to the contralateral quadrant of the trunk, then to the distal (fingers or toes) of the affected extremity and finally to the proximal (upper) part of the limb. Following manual lymphatic drainage massage apply lymphedema bandages to maintain compression to control and redirect excessive lymph fluid. Have a family member assist with manual lymphatic drainage as needed
4. Multilayer compressive bandaging follows the massage. Low-stretch bandages are applied to the whole extremity, including fingers and/or toes. Proper wrapping of bandages provides gradual compression, with the highest pressure applied distally, and a lower pressure applied at the proximal (upper) part of the limb. The pressure from bandages should not be too high, because there is a small risk of arterial or nerve compression.
5. Decongestive exercises are specially designed to help evacuate lymphatic fluid. Exercises are performed with bandages or wearing a compression garment. Bandages are worn overnight until the next session of massage. It is important to use proper low-stretch bandages for wrapping. High-stretch bandages (like ACE wraps) are inappropriate for treatment of lymphedema and pose a significant risk (such as worsening of edema or compromising circulation in arm or leg).
6. Massage sessions are performed once or twice daily for a period sufficient to maximally reduce edema of the limb. This may vary from one to six or more weeks. At the time of therapy, patients and/or their families are taught techniques of massage self-care, which includes self-applied lymphatic massage, bandaging and exercises.
7. After acute decongestive lymphatic therapy, patients are fitted for gradient, compressive garments, which should be worn daily.
8. Perform daily prescribed exercises.
Decongestive lymphatic therapy (decongestive physiotherapy, complex decongestive therapy or manual lymphatic therapy) is a proven and effective way to treat lymphedema. A reported edema reduction of from 40 to 90% is possible, after intensive treatment.

National Lymphedema Network, www.

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