Agency Links:    Home   Contact Us    Compliments & Complaints   Help    Site Map
Link to Homepage

Patient/Public Info  |  Regional Services  |  Health Professionals Info  |  About BCCA  |  Research  |  Donating

Lymphedema

Revised Aug 2014

This information should not be used for self-diagnosis or in place of a qualified physician’s care.

   Table of Contents
Lymphedema Stages Living with Lymphedema
What causes it and who gets it? Treatment Library Resources
Can I help to prevent it? Follow-up after Treatment Recommended Websites
Signs and Symptoms Exercises Videos/Presentations
Can I help with research at BCCA?


Lymphedema After Cancer Treatment
  • 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.
  • For health professional information on treating this cancer, please see our Nursing Guidelines for Symptom Management.
  • 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. Another surgery is Sentinel Lymph Node dissection. Lymph nodes may be removed during surgery for other types of cancer, too. Testing the lymph nodes for cancer is a good way to see if the cancer has spread beyond the original site. Lymph node dissection occasionally changes or stops the free flow of lymph fluid. Patients develop lymphedema in the arm or leg, because lymph fluid can no longer leave the limb in the usual way.

What causes it and who gets it?

  • Most women with breast cancer don’t get lymphedema.
  • The majority of women who develop arm lymphedema do so within 4 years of breast cancer treatment. If lymphedema develops, it is likely to be permanent, and only a few women will have temporary lymphedema.
    • 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%.
  • Up to 16% of patients with other cancers are at risk of developing lymphedema, if they have had similar treatments such as lymph node removal with radiation therapy.

Can I help to prevent it?

  • There is currently no proven method to prevent lymphedema.
  • Physiotherapy after surgery is helpful. Physiotherapists in BC who specialize in lymphatic or cancer patient care can be found on the Physiotherapists of BC website.
  • 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.
  • Later lymphedema is of more concern because it may become permanent. Most patients who develop permanent lymphedema do so within 4 years of their breast cancer treatment, but it can also appear many years after surgery.
  • Some risk factors for lymphedema can be managed. If you are concerned about lymphedema, there are things you can do to help:
    • Maintain a healthy body weight
    • Avoid injury to the affected limb (arm or leg).
    • Watch closely for infections and report them to your healthcare provider.
    • Regular, moderate exercise is also helpful.
    • See the Follow up section below for more details.

Signs and Symptoms

  • 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.
    • If your surgery was in the lower body, swelling may show in your leg or foot.
  • 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. Measurements of the leg are taken for lower body lymphema.
  • Swelling can result from other conditions. Your doctor may check to rule out other causes.

Stages

  • Stages of lymphedema are not like cancer stages. The stage just describes how much lymphedema there is, and helps the healthcare team decide on the best treatment options.
  • Circumferential measurements around both the affected and unaffected limb are compared. If these change over time, the lymphedema may be considered more severe. 
    • Mild or early lymphedema is a difference of about 2-3 cm between the two limbs (stage 1)
    • Moderate lymphedema is when there is a difference of about  3-5 cm (stage 2)
    • Late or severe lymphedema: a difference of more than 5cm between the two sides (stage 3).

Treatment

  • Treatment is most effective when physicians, physiotherapists, nurses, massage therapists, and psychosocial counsellors work together.
  • Once lymphedema develops, lifelong management is important. Treatment is helpful but does not cure the lymphedema.
  • 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 garments are available for many parts of the body where lymphedema can develop after other types of surgery.
      • Compression pump therapy with a multi-chambered sleeve is often helpful in controlling lymphedema.
      • 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
      • bandaging
      • exercises
      • 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.
  • Physiotherapy can be very helpful to maintain limb function and locate additional resources. Find a physiotherapist specializing in lymphatic or cancer care on the Physiotherapists of BC website. 

  • 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 (affected limb).

  • 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.

    Follow-up after Treatment

  • Exercise to keep the joints limber. This helps to control lymphedema by stimulating lymphatic drainage. These exercises include most activities of daily living, swimming, biking, and walking.
    • Note that vigorous, repetitive, upper body exercise against resistance such as rowing, cross-country skiing, playing tennis, lifting weights is discouraged by some healthcare professionals. However, newer studies of the effects of exercise on lymphedema seem to show no harm. 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.
    • Discuss your planned exercise program with your doctor or healthcare team.
  • Try to maintain an ideal body weight. Obesity is a risk factor for developing lymphedema and makes established lymphedema harder to control.
  • Keep the limb at risk clean, and use moisturizer to keep the skin from drying out.
  • If you will be travelling a long way or by airplane, a compression garment can help support the arm or leg at risk, as well as stretching or moving during travel to keep the lymph fluid moving.
  • Avoid injury to your arm (or leg). Because of the poor lymphatic drainage out of your limb, 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.
    • Taking blood pressure with a cuff around your arm should be done on the other side 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 antibiotics until you are better.
    • If the infection is mild, antibiotics will cure the infection. Be sure to tell your doctor if you are allergic to any antibiotics.
    • If you have had multiple infections in the arm, you need to prevent repeated infections. Monthly injections or an oral antibiotic taken one week per month, may be prescribed.  You may consider asking your doctor for a home supply of antibiotic to be taken at the first signs of infection.
    • Be sure to discuss infection risk and prevention with your doctor before travelling out ot the country or to remote areas.
  • Exercise Suggestions
    •  Living with Lymphedema

      • Don't hesitate to ask for counselling if you find that the lymphedema is getting you down. People with lymphedema often say that their swollen arm or leg is a constant reminder to them of their cancer; that they can hide the other cancer effects, but that they can't hide what has happened to their 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.

      We know that cancer and its treatment can present unique challenges: from everyday concerns like diet, money and housing, to emotional concerns. The needs of our patients and their families and friends can be very diverse. Please explore this very useful part of our website. Here is some of what's included in this section:

      Library Resources

      •  The BC Cancer Agency Library has many resources about cancer, coping, talking to children and more. There are books and videos about lymphedema. Please visit the Library in your Centre, call a librarian, or visit the Library online to see the many resources available.

      • Library Pathfinders are a good starting point to resources on types of cancer and living with cancer. They list books, videos, pamphlets, websites and support services.

      Recommended Websites

      The BC Cancer Agency has selected and evaluated these useful websites for your further information.

      Videos/Presentations

      View BC Cancer Agency videos on cancer-related topics.

      Can I help with research at BCCA?

      Patients play a vital role in research to fight cancer. Here are a few ways you can help:



      This information is awaiting Tumour Group approval.