Revised September 2012
This information should not be used to self-diagnose, or be used in place of a qualified physician’s care.
- A guide for women with lymphedema
- Arm exercises after removing lymph nodes (axillary dissection)
- Advanced exercises
- More resources - recommended websites, and BCCA library materials you can borrow.
A Guide for Women with Lymphedema
- This guide is designed to help you and your health care provider safely reduce and control the lymphedema in your arm. The goal of treatment is to make your arm less swollen, and to help make it continue to function normally.
- What is lymphedema? Lymphedema is a build-up of lymph fluid, usually in an arm or leg. Lymph fluid keeps our tissues free of infection. The fluid is filtered through lymph nodes (glands) in the armpit on its way to the blood stream. Some of the lymph nodes in the armpit are often taken out
during breast cancer surgery. This is called axillary dissection and it’s done to see if there is any cancer in the lymph nodes. Testing the lymph nodes for cancer is a good way to see if the breast cancer has spread beyond the breast. Axillary dissection occasionally changes or stops the free flow of lymph juice. Women develop lymphedema in the arm because lymph fluid can no longer leave the arm in the usual way.
- How many women get lymphedema after breast cancer treatment? Most women don’t get lymphedema. The majority of women who develop arm lymphedema do so within 4 years of breast cancer treatment. Lymphedema is likely to be permanent, and only a few women will have
- After axillary dissection (removal of underarm lymph nodes), the risk of lymphedema has been reported to be between 0% - 25%.
- The average rate is 3%, if there is no radiation therapy to the underarm area.
- With both axillary dissection and radiation therapy to the underarm area, the risk of lymphedema varies from 10 to 54%, with the average being 12%.
- The addition of regional radiation may increase the risk of arm swelling by 5 - 10%.
- How do I know if I have lymphedema?
- You may be developing lymphedema if you notice that your hand is puffy or your arm feels heavy.
- Your sleeve, wristwatch or rings may leave deep impressions in your skin. As the lymphedema sets in, you may have pain in your arm as the backed-up fluid stretches the arm tissues and nerves. You may also experience pain in your upper back and shoulder because of the extra arm weight that these joints have to support. Report these symptoms to your doctor immediately.
- Your doctor looks for increased swelling in your hand or arm and will measure and compare the two arms with a tape measure. It is lymphedema when the doctor finds a difference of 2 cm or more by comparing the circumference of your two arms. The measurements are taken at the knuckles, wrist, 10 cm below the elbow and 15 cm above the elbow.
- Can I do anything to reduce my risk of lymphedema? Can I prevent lymphedema?
- There is currently no proven method to prevent lymphedema.
- Will the lymphedema ever go away? About 7% of women who have had lymph nodes removed will develop some swelling of the arm after surgery, which is usually mild and goes away. Transient or temporary lymphedema can also show up years after surgery. It can be caused by infection or other reasons. This lymphedema is of more concern because it may become permanent. 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 counsellors work together.
- How is lymphedema treated?
- If the lymphedema is temporary, a compression sleeve might 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.
- Compression is one form of care:
- A compression sleeve with or without a hand piece (called a glove or gauntlet) may help to control the swelling. PharmaCare’s Prosthetic and Orthotic Program will provide payment for two sleeves and two gauntlets per year.
- Compression pump therapy with a multi-chambered sleeve is often helpful in controlling lymphedema. Ideally, a pump should be purchased for home use.
- Some community hospitals provide compression pump therapy. As well, these hospital-based lymphedema programs in B.C. provide education on lymphedema control, the importance of compression garments and prevention of arm infections are also provided through these programs.
- Complex Physical Therapy (CPT) or Complex Decongestive Therapy (CDP) is a treatment program in which includes:
- skin care counselling
- Manual Lymphatic Drainage (MLD) - a skin massage technique that tries to stimulate lymph drainage
- support garments
- To find a CDP or MLD therapist, 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. This helps to control lymphedema by stimulating lymphatic drainage. These exercises include most activities of daily living, swimming, biking, and 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 the lymphedema if they already had 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 tests drawn, intravenous lines started or injections given in the healthy arm, if possible.
- We don’t know yet if heavy lifting, shovelling snow, pushing a lawn mower and exercising against resistance can cause or aggravate lymphedema. Excessive heavy lifting or exercise against resistance shortly after surgery is probably not a good idea unless gradually increasing the activity.
- 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. 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 skin.
- Always report any infection to your doctor.
- If an infection comes on suddenly and spreads rapidly, you will need to go to a hospital for intravenous penicillin or clindamycin until you are better.
- If the infection is mild, antibiotics will cure the infection. Oral penicillin 500 mg 4 times a day or amoxicillin 500 mg 3 times a day for 7-10 days will work. 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, you need 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 travelling to a remote area.
- Don't hesitate to ask for counselling 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.
- Compression sleeves and gauntlets need to be replaced about every 6 months. PharmaCare’s Prosthetic and Orthotic Program will provide payment for two sleeves and two gauntlets per year, within certain cost limits and your deductible.
- Ready-made compression garments cost about $100 and up. Up to $150 is covered by PharmaCare.
- Custom-made garments cost more, and PharmaCare covers up to $300.
- A compression pump can cost well over $4,000.
- MLD (manual lymph drainage) costs $75 a session and many sessions may be required.
- CDP (Complex Decongestive Therapy) costs about $7,000.00 US for the recommended 4 week session.
- What other costs are involved? PharmaCare will cover most of the cost of the compression
garments. Some extended health insurers will cover most of the cost of a compression pump, compression sleeves and/or 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. More financial information for patients is available here.
- 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.
- What does not work? Therapies that should not be used are diuretics (pills to reduce water retention), 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:
This information is awaiting Tumour Group approval.