Revised November 2007

Lymphedema

Detailed information about lymphedema is available from the

1. BCCA Breast Tumour Group's Management of breast cancer related lymphedema : a guide for women with lymphedema.
2. BCCA Breast Tumour Group's Upper extremity rehabilitation after axillary dissection
3. BCCA Breast Tumour Group's Advanced exercises
4. See also pamphlet: Management of breast cancer related lymphedema: a guide for women with lymphedema.(available from the BC Cancer Agency Library 1-888-675-8000 local 8003 or the Cancer Information Service 1-888-939-3333).

Lymphedema compression garments (sleeve): Pharmacare will provide payment for two sleeves per year for those patients over 65 years of age. For those under 65 years, reimbursement will depend on your health plan, deductibility etc.

This guide was developed by the Breast Tumour Group at the BC Cancer Agency, because you have breast cancer-related lymphedema. It is designed to help you and your health care provider safely reduce and control the lymphedema in your arm so that your arm is less unsightly and continues to function normally.

What is lymphedema?   Lymphedema is a build-up of lymph fluid in your arm. The lymph fluid, which keeps tissues free of infection, is filtered through lymph nodes (glands) in the armpit on its way to the blood stream. In breast cancer treatment, the lymph nodes in the armpit are often taken out by surgery (axillary dissection) to see if the cancer has spread there. You have developed lymphedema because lymph fluid can no longer leave your arm through its normal channels in your armpit.   These channels have been disrupted by your treatment.

How many women get lymphedema after breast cancer treatment?   After axillary dissection alone, the risk of lymphedema has been reported to be 0 - 25% in different studies. The average rate without regional radiation was 3%. With axillary dissection and regional radiation, the risk of lymphedema varied from 10 to 54%. The average risk with regional radiation is 12%. The addition of regional radiation, therefore, may increase the risk of arm swelling by 5 - 10%. Lymphedema is likely to be permanent, and only few women will have transient lymphedema. Most women* who develop arm edema do so within 4 years of breast cancer treatment .

Report these symptoms to your doctor immediately. If your doctor finds increased swelling in your hand or a difference of 2 cm or more at any point after comparing the circumference of your two arms with a tape measure at the knuckles, wrist, 10 cm below and 15 cm above the elbow, then you have lymphedema. 

Will the lymphedema ever go away?  About 7% of women who have had an axillary dissection will develop some swelling of the arm after surgery, which is usually mild and goes away. Of more concern is lymphedema that develops after surgical healing is complete. Most women who develop permanent lymphedema do so within 4 years of their breast cancer treatment, but it can also appear many years after surgery.

Who should treat lymphedema?   Treatment is most effective when physicians, physical therapists, nurses, massage therapists, and psychosocial counselors work together.

How is lymphedema treated? 

• If the lymphedema is transient, a compression sleeve to be worn with activity or for comfort may be all that is required. Physical therapists or trained personnel at medical equipment stores specializing in lymphedema care can make sure that you get a sleeve that fits you. Close observation by your physical therapist or doctor is necessary to make sure that this lymphedema is not permanent. 
• Permanent lymphedema may need ongoing care. A compression sleeve  with or without a hand piece (glove or gauntlet) may help to control the edema. Compression pump therapy with a multi-chambered sleeve is often helpful in controlling lymphedema.  Ideally, a pump should be purchased for home use. Outpatient physiotherapy departments in some community hospitals provide compression pump therapy.  Education on lymphedema control and prevention of arm infections are also provided through these programs.  Here's a list of hospital-based lymphedema programs in B.C.  
• Complex Physical Therapy (CPT) or Complex Decongestive Therapy (CDP) is a treatment program in which includes skin care counseling, a skin massage technique that tries to stimulate lymph drainage called Manual Lymphatic Drainage (MLD), bandaging, exercies and support garments. For CDP or MLD therapists contact the web site: www.vodderschool.com, Dr. Vodder School – North America 250-598-9862, or the US National Lymphedema Network at 1-800-541-3259. 
• Exercise to keep the joints in your arm limber, which helps to control lymphedema by stimulating lymphatic drainage. These exercises include most activities of daily living, swimming, biking, walking. Vigorous, repetitive, upper body exercise against resistance such as rowing, cross-country skiing, playing tennis, lifting weights is frowned upon by some lymphedema experts. However, the effects of exercise on lymphedema have been poorly studied. A group of over one hundred BC women with breast cancer, who have become dragon boat racers, have not developed lymphedema or aggravated it.
• Try to maintain an ideal body weight.  Obesity is a risk factor for developing lymphedema and makes established lymphedema harder to control. 
• Avoid injury to your arm. Because of the poor lymphatic drainage out of your arm, you are at a risk for infection. Muscle strains, bruises and fractures can cause swelling which can further block the flow of lymph fluid out of your arm. Try to avoid cuts, scratches, burns (including sunburns), and insect bites to your arm. Wear gloves when gardening, barbecuing or reaching into a hot oven. Have blood drawn, intravenous lines started or injections given in the healthy arm, if possible. Whether heavy lifting, shoveling snow, pushing a lawn mower, exercising against resistance can cause or aggravate lymphedema is in dispute. Excessive heavy lifting or exercise against resistance shortly after surgery without gradually increasing the activity is probably not a good idea.
• Watch very closely for infections in your arm.   An infection in your arm can be frightening and can come on suddenly, after something as trivial as a hangnail or paper-cut to your finger. Within hours your arm can be bright red, painful, hot to touch and swollen and you can feel extremely ill. Or, at other times, the infection may be milder and you might notice a slight pain to an area in your arm with some redness of the overlying skin. The infection is almost always caused by the streptococcal bacterium and responds well to penicillin. 
• If an infection comes on suddenly and spreads rapidly, you will need to go to a hospital for intravenous penicillin or clindamycin (if you are penicillinallergic) until you are better. If the infection is mild, a course of oral penicillin 500 mg 4 times a day or amoxicillin 500 mg 3 times a day for 7-10 days will cure the infection. 500 mg of cephalexin, cloxacillin or erythromycin 4 times a day for 7-10 days are also good alternative oral antibiotics. Be sure to tell your doctor if you are allergic to any of these antibiotics. 
• If you have had multiple infections in the arm, to prevent repeated infections, monthly injections of 1.2 million units of benzathine penicillin or oral penicillin 250 mg 4 times a day for 1 week a month may help. Amoxicillin 250 mg 3 times a day for 1 week can also be used. You should strongly consider asking your doctor for a home supply of amoxicillin 500 mg or cephalexin 500 mg to be taken at the first signs of infection. Be sure to take a week's supply of amoxicillin or cephalexin if you are traveling to a remote area. Always report any infection to your doctor. 
• Don't hesitate to ask for counseling if you find that your arm is getting you down. Women with lymphedema often say that their swollen arm is a constant reminder to them of their breast cancer; that they can hide what has happened to their breast but that they can't hide what has happened to their arm. 

When should I not have lymphedema treatment?  You should not have lymphedema treatment, especially compression and massage (MLD and CDP) therapy, when you have an infection or a blood clot in your arm.

What is the cost of lymphedema treatment?  Lymphedema treatment can be expensive and time-consuming.  Ready-made garment(s) can range from $65.00 - $100.00; custom-made garments cost more and all need to be replaced about every 6 months.  A compression pump may cost well over $4,000.00. MLD costs $75 a session and many sessions may be required. CDP costs about $7,000.00 US for the recommended 4 week session. 

Once you have met your deductible, Pharmacare will cover most of the cost of the compression garment(s).  Some extended health insurers will cover most of the cost of a compression pump, compression sleeves/gauntlets and physical therapy, MLD or CDP.  The multiple compression pump treatments usually needed to control the lymphedema are provided at no cost if available in a cancer clinic or hospital setting.

Are there other therapies for lymphedema?   Therapies such as laser, electrical muscle stimulation, cryotherapy, transcutaneous electrical nerve stimulation (TENS), microwave and thermal therapy may or may not work but need further study. Therapies that should not be used are diuretics, benzopyrones, surgery and therapeutic ultrasound. Diuretics and surgery do not work. Benzopyrones can poison the liver and therapeutic ultrasound can cause cancer growth in mice. (Don't confuse therapeutic ultrasound with the very safe diagnostic ultrasound that you may have had to diagnose a breast lump).

I need to know more.   For more information, you can contact your local cancer centre, Library Resources, a good web site at www.lymphovenous-canada.com, the Candian Cancer Information Service 1-888-939-3333 or the National Lymphedema Network (U.S.) 1-800-541-3259. 

March 2007  We are currently reviewing and updating these pages.  If you have any questions about your cancer and its treatment, please discuss with your oncologist or physician.  Thank you.