Lymphedema After Breast CancerLYMPHEDEMA SUPPORT GROUP:
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What is lymphedema?
Lymphedema is a swelling of the arm and/or hand nearest to the breast cancer site. Swelling can also occur in the chest, rib cage area, or upper back on the affected side. The swelling is due to an accumulation of tissue fluid that has not been absorbed by the lymphatic system.
What is the lymphatic system?
The lymphatic system is a special transport system in your body that removes impurities (such as viruses and harmful bacteria) from your body's tissues, and supplies white blood cells to the circulatory system. Lymph vessels form a vast network of tiny channels lying just under your skin. Lymphatic fluid, a colourless, protein-rich liquid, flows through the lymph vessels, is filtered through the lymph nodes, empties into deeper and larger lymphatic trunks, and eventually drains into the blood circulatory system of the body.
Why am I at risk for lymphedema?
Any disruption to the lymphatic system can result in lymphedema. Removal of axillary (underarm) lymph nodes, and radiation to the axilla (causing scarring of the remaining lymph nodes) compromises the lymphatic system's ability to transport lymph fluid. You are at increased risk if you are overweight, or if you had a large accumulation of serous fluid or an infection after your surgery.
What happens when lymph pathways are destroyed?
Your body tries to compensate for the disruption by: 1) increasing the frequency and amplitude of the contractions of the remaining vessels, 2) developing new pathways, 3) severed vessels can reattach (eg. across narrow incisions), and 4) possibly forming direct links with peripheral veins. In this way, the lymphatic system can effectively prevent swelling, as long as the amount of interstitial fluid does not exceed its ability to transport it.
What causes the first episode of swelling?
Swelling occurs when the lymphatic system is overwhelmed, and can no longer keep up with the amount of tissue fluid that has to be transported. Tissue fluid increases when there is infection, when heat is applied to the arm, when the arm is exercised, or after trauma to the arm. Gaining weight also puts an extra load on the lymphatic system. Many women report a trigger prior to their first episode of swelling. This is often heavy use of the arm, or a new repetitive activity, although it can be something as minor as an insect bite. Swelling can occur at any time after treatment for cancer, although it most commonly occurs within the first three years.
How many women develop arm lymphedema after breast cancer treatment?
Statistics are not clear, but a reasonable estimate is 20-30%. Taking appropriate action when swelling is first noticed (see below) can stop the swelling from progressing.
How can I tell if my lymphatic system is working too hard?
You may experience sensations of heaviness, achiness, or fullness in your arm. These feelings are warning signs. It is important to figure out what demands you were placing on your arm, and attempt to modify the activity. Take more frequent breaks from a repetitive job, for example, or avoid heavy lifting or carrying by using a cart or choosing lighter grocery bags for the at-risk hand. Monitor your arm, especially when trying something new. Swelling often doesn't develop until hours after the aggravating activity, so it is important to be aware of, and respond to symptoms as soon as possible.
What should I do if my arm swells?
Stop what you're doing and rest your arm in an elevated position (eg. lie down with your arm supported on pillows). Take some slow, deep breaths (your abdomen should rise when you breathe in). Deep breathing stimulates the body's largest lymphatic duct that passes through your diaphragm muscle deep in your trunk. You may try to gently stroke your arm where it is swollen, directing your pressure towards your shoulder (don't try to “push” the fluid towards your underarm, as this is where there is a blockage to lymph flow). Lymph vessels are very delicate and lie just under the skin, so use a soft touch. Generally, swelling will resolve over the next day or two with periodic rest and elevation, and avoidance of heavy use of the arm.
The swelling in my arm is not going away. Can it be treated?
Yes, there is a treatment available that can reduce an acute swelling episode to near normal. However, with more chronic swelling (years rather than months) you can expect about a 50% reduction. This treatment is called Complete Decongestive Therapy or CDT. It is composed of Manual Lymph Drainage (MLD), bandaging, exercises, and skin care. A pressure garment must be worn at the end of the intensive phase of treatment to maintain the reduction.
What can I do to decrease my risk of developing lymphedema?
General precautions include:
- Being aware of and respecting your arm's physical limits.
- Avoiding heat and localized compression to the arm.
- Taking care of your skin. Skin care is important because trauma and infection can be triggers for the first episode of swelling. And if you already have lymphedema, these precautions will help to decrease your risk of infection.
- Keep your arm clean and dry. Wash with a gentle soap, pat dry and apply a low pH moisturizing cream.
- Try to avoid bruises, cuts, burns (including sunburn), insect bites, pet scratches, and sprains. Check your arm regularly for scratches, especially if sensation is impaired.
- Wear gloves when doing any activity that may cause injury such as housework, gardening or hobbies.
- Take care of small wounds by washing them carefully, using an antibiotic cream, and covering to keep them clean. If you notice any sign of infection, contact your doctor immediately. Signs of infection include: swelling, redness, warmth, tenderness and/or pain, possible fever and chills. Cellulitis can spread quickly. If you have had a previous episode of cellulitis, you should carry antibiotics with you and start them at the first sign of an infection.
- Avoid using that arm for blood tests, IV's or blood pressure readings.
- Use an electric razor to shave underarms.
- Don't cut the cuticles when manicuring the nails on the affected side.
- Avoid pressure on the shoulder of the affected arm from shoulder bags or backpacks.
- Choose bras that have wide straps, both over the shoulder and around the rib cage, and keep the straps as loose as possible. Women who have had a mastectomy should choose a lightweight prosthesis.
- Avoid tight rings, bracelets or sleeves that restrict circulation.
- Avoid temperature extremes while bathing, showering or washing dishes. No saunas or hot tubs. If the limb is achy, do not apply heat to relieve the discomfort.
- Avoid letting the arm dangle for long periods of time. On long walks, raise your arm periodically and exercise it (eg. open and close your fist) as you walk along.
- If you have lymphedema, be sure to wear a compression sleeve and hand gauntlet when travelling by airplane. The decrease in air pressure can cause the arm to swell. You can reserve a window seat and request pillows so that you can elevate your arm. If you have never experienced swelling, and you rarely have symptoms of heaviness, fullness or aching, you should be fine to travel by plane without a garment, but avoid carrying heavy luggage in the at-risk arm, and consider elevating the arm periodically.
- Continue to use your arm and be as active as possible. The lymphatic system depends on muscle contractions and joint movements to stimulate flow. But avoid activities that seem to increase swelling or cause symptoms of lymphatic overload (eg. aching, fullness). Be cautious of heavy lifting, or intense scrubbing, pushing or pulling. Avoid activities that require vigorous repetitive movements against resistance (eg. rowing machines) unless you have built yourself up gradually over time. Learn what your limits are. If you engage in strenuous exercise regularly, consider a low pressure off-the-shelf garment and hand gauntlet to be worn during your exercise sessions. (see information on pressure garments)
- Maintain good nutrition and a healthy body weight. Lymphedema is more common and harder to control in overweight women.
Compression garments play an important role in maintaining the amount of swelling in your arm and/or hand (ie. preventing the swelling from increasing). If you have moderate to severe swelling, you should wear a compression garment during waking hours. Garments should not be worn at night. Be aware that wearing a sleeve just to the wrist can increase or bring on hand swelling. A glove or gauntlet (where fingers are exposed) is often necessary as well. The glove portion overlaps the sleeve at the wrist and can be removed as necessary during the day.
Sleeves come in different pressures, from 14 to 40 mmHg, and different fabrics. It is important to know which garment is right for you. Garments must be replaced every 4-6 months, depending on the type of fabric and the amount of use, so that the correct pressure is maintained. Many insurance plans will cover or partially cover garments. Funding is also available through the Assistive Devices Program of Ontario (ADP).
Whether or not women with mild or no lymphedema should wear a compression garment is a point of debate. Recent research seems to indicate that women who have never experienced an episode of swelling, and who have minimal symptoms, should not wear a garment. Rather than “preventing” lymphedema, compression on an arm that is coping well with its lymphatic load can actually bring on swelling.
Women who have no swelling, but who consistently experience achiness, heaviness, or fullness during or after strenuous exercise (eg. women who engage in weight training) should consider a low pressure (14-18 mmHg) garment and hand gauntlet to be worn just while they're exercising. This may help guard against the onset of swelling, although it is impossible to “prevent” lymphedema. Many stressors may be contributing when swelling first appears.
Women who experience transient lymphedema (see page 5) should identify their aggravating activities and wear a 20-30 mmHg garment and hand gauntlet when engaging in these tasks. They should also take frequent breaks and try to use their other arm more.
Are pumps an effective treatment?
The pneumatic compression pump has been used to treat lymphedema for years. A multichambered sleeve is put around the arm and is pumped with air at a set pressure. The pressure fluctuates between a high and a low setting and certain units are sequential (ie. the pressure starts at the fingers and then moves to the upper arm). Generally, pumps are no longer recommended. Concerns include:
- Pressures that are too high can damage healthy lymph vessels.
- It disregards the fact that the trunk quadrant is also involved. If there is a blockage at the axilla, lymph fluid is simply being “pushed” towards the blockage.
- It does not address fibrotic areas. (Stage II lymphedema, see page 5)
- It requires many hours each day.
There are different stages in the development of lymphedema. You can use this information to find out what stage applies to you.
Latency Stage: The lymphatic system has been compromised (lymph node removal +/- radiation), but there is no visible or palpable swelling. You may experience symptoms such as heaviness, fullness or aching in your arm.
Stage I: Swelling occurs in the arm, but reduces with rest and elevation. This stage is also known as transient, or reducible lymphedema because the swelling goes away. When the swelling is present, you can leave a mark with your finger when you press in. This is called pitting edema, and feels spongy.
Stage II: Swelling no longer reduces, and over time tends to increase. This stage is also known as spontaneously irreducible lymphedema, because rest and elevation are no longer effective at reducing the swelling. Connective tissue is laid down causing fibrosis, and swollen areas take on a clay-like consistency. As the tissue hardens, pitting becomes increasingly more difficult. CDT treatment is indicated.
Stage III: Swollen areas become more fibrotic and skin changes can occur. Swelling can become extreme. This stage is also known as elephantiasis, and is not common in cancer-related lymphedema.
How can I get treatment for lymphedema?
Your cancer specialist or your family doctor can refer you for treatment. Be prepared to give your doctor details about your swelling, including: when it started, where in your arm the swelling was first noticed, whether or not the first episode resolved, and whether or not the swelling is stable or progressing. Your doctor will decide whether or not further investigations are necessary. Once a diagnosis of lymphedema is confirmed, your doctor can refer you for treatment. If swelling has not resolved, your doctor will also give you a prescription for a pressure garment. If there is a long waiting time (greater than 2 months) and your swelling is increasing, you can choose to go a certified fitter to purchase a garment and/or glove (see back page). Garments will maintain the swelling at its present level while you wait for a consultation. If your swelling is stable, you can choose to wait for your assessment prior to seeing a fitter.
If you seek treatment in a private clinic, ensure that the therapist is certified in Complete Decongestive Therapy or CDT.
- The Lymphedema Clinic Health Supports & Fitting Services
328 Queen Street, Kingston Ontario
- Lymphedema Support Group:
BCAK (Breast Cancer Action Kingston)
105-1379 Princess St.
Lending library, exercise classes, support groups.
- Health Supports and Fitting Services
328 Queen St.
- Shoppers Home Health Care
530 Bath Rd.
**Before going to any medical supply retailer, call and ask if there is a certified fitter on staff with experience fitting people with lymphedema. Don't attempt to buy an off- the-shelf garment by yourself. Accurate measurements need to be taken to ensure a proper fit. A poor fitting garment can do more harm than good.
- Lymphovenous Canada
- National Lymphedema Network
- Lymphedema Bra (for chest and ribcage area swelling)
- Lymphedema Association of Ontario
4161 Dundas St. W.
Toronto ON M8X 1Y2
Phone: 416-410-2250 and 1-877-723-0033
- Lymphedema: A Breast Cancer Patient's Guide To Prevention and Healing
By Jeannie Burt and Gwen White (PT)