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Lymphedema (not water retention)

What is Lymphedema? What can be done about it? Caryl Perdaems, OTR, CLT-LANA, CWS

Pronounced “limf-a-dema”, this condition affects many people who have had surgery, radiation, or chemotherapy during cancer treatment. It can cause fear, anger, and oftentimes sadness. It can be a constant reminder of that patients fight cancer. But, like the butterfly, it can also be a symbol of that patient’s courage and hope. Even though lymphedema is not curable it is treatable! First, we must understand why it occurs.

Lymphedema is a protein rich accumulation of fluid in the area of the body that has been treated for cancer. Lymphedema does not just affect cancer patients; it affects anyone who has had an “assault” to their lymph system. Your body is a complex network of lymph vessels. These vessels are responsible for removing the “dirty” fluid from your body. The lymph collectors bring this fluid through a series of highways to your lymph nodes where it is broken down and moved along further. Eventually, 15% of lymph fluid is excreted via your bladder, and the other 85% is returned to your venous system where it is revitalized and returned throughout your body.

What happens during treatment for different cancers is that essential lymph collectors and lymph nodes can be removed. This lessens the body’s ability to remove this “dirty” fluid. Try to imagine getting one of your children to pick up after another one. Do you ever get resistance? The lymph system is the same way. It only wants to remove so much fluid over a period of time. It gets “lazy”! So, how do you “train” it to do its job again.

The technique referred to as Complete Decongestive Therapy is the “gold star” for treating lymphedema. It has four essential parts: Manual Lymph Drainage (MLD), compression therapy, exercise, and education in skin care. These techniques, individualized for each patient, have the most success in reduction of the symptoms of lymphedema. I also like to take into consideration each patient’s lifestyle and responsibilities when designing a treatment program. As a Certified Lymphedema Therapist, I also look at what stage of lymphedema patients are in at the time of evaluation. Often, all steps are not needed, depending on the person’s response to treatment. Caregiver involvement can be a vital indicator of the patient’s response to treatment.

First, MLD is a gentle massage that is performed in specific directions depending on what is affected by lymphedema. This massage helps the lymph system to “speed up” the rate that the lymph system is pumping. This specialized massage “stretches” the lymph collectors, encourages them to contract, and pump the fluid in the right direction. It is also a way to soften hardened fluid. This is vital. If your “drains” are “clogged”, you must release the collection of fluid in order keep the fluid flowing in the right directions.

Next, Compression can be in the form of multilayer wrap, a compression sleeve, compression hose, or compression garment. A compression garment is not fit until we are sure the patient has had maximal reduction of the fluid accumulation. Sleeves often are issued for prevention of swelling during high risk activities that could onset an episode of swelling. It is still the standard to wear compression during air travel for people who are at risk for swelling. I believe it is always easier to prevent then treat! Education about prevention is a way to prevent symptoms or lessen your risk factors.

Then, good muscle tone helps move lymph fluid! Yes, you should exercise to improve lymph flow. The right exercises with compression can actually improve the return of lymph fluid. Wearing compression while you exercise if you are at risk will reduce your potential for swelling to occur, especially if you have had lymph nodes removed.

Lastly, attentive skin care will help keep the skin pliable and supple. Avoiding products that cause allergies, covering cuts and scrapes, and avoiding sunburns are just a few. We will dive into more specifics on this topic as we progress through the week. I always share with patients the philosophy that having lymphedema, or the potential to have lymphedema, is not a reason to worry about all your activities and stop being active! There are many safe ways to ensure that you have an active lifestyle, but reduce the risk of swelling. Treating the lymphedema is always a good start. When you first notice symptoms, you should seek treatment. Do not wait until it becomes unmanageable.

Prevention, and empowerment by knowledge, can increase your ability to live everyday not worrying about the “what ifs”. Sometimes the simplicity of wearing a graduated compression sock or sleeve during an activity is all you need to do to prevent the symptoms!

Skin care is very important if you are at risk for or have been diagnosed with lymphedema. Your skin is your barrier to infection. It must respond to stretch and physiological changes that happen during an episode of swelling. In order for your skin to respond to these changes, you must keep it in good condition.

Swelling related to lymphedema can provide a way for infection to occur. The fluid that is trapped under the skin provides a medium for bacteria to quickly grow. We all have different bacteria on our skin. If we scratch or cut an area that is swollen, that bacteria gets “under your skin” and multiplies fast. That, along with people who are immuno-supressed (i.e. have had lymph node dissections and cancer), will make it harder to fight the infection. So prevention is again very important.

One way to prevent infection is to keep swelling down. If you eliminate the fluid that transports the bacteria, you lessen your chances of getting an infection. This would be accomplished by doing your massage daily (MLD), and wearing prescribed compression garments.

Another way to prevent infection is to keep with you simple topical antibiotic ointment and a band-aid. We recommend that when you first notice a cut or scratch on affected limb, you clean it, apply Bacitracin or Polysporin, and cover with a band-aid. You should avoid the use of hydrogen peroxide or alcohol to clean your skin as these can be “cytotoxic”, meaning they kill the good and bad cells in the wound. We also avoid the use of neomycin based products as these have been found to cause allergic reactions in patients who use them.

Keep your skin soft and supple by using lotions that are hypoallergenic. Look for lotions that have a low ph number. Sometimes this is written on the back of the bottle. Use products that do not contain perfumes. If you do cut or scratch yourself, perfumes can penetrate the skin and cause reactions. Avoid sunburns to the affected area. Repeated sun exposure can damage the skin and decrease elasticity.

Remember all of these things are recommendations. You may have lifestyle issues that make doing them difficult. By educating patients in the reasons behind the recommendation, we allow you to make informed decisions. Remember, skin care is very important to make treatment work more effectively, and prevent infection.


EXERCISE PRECAUTIONS FOR LYMPHEDEMA

Exercise is an important part of lymphedema treatment; it helps maintain healthy body weight, increases range of motion and flexibility, and improves muscle tone which helps increase lymphatic flow. Muscle contractions are the primary movers of the lymph fluid and must be strong to have a good lymph pump.


COMPRESSION GARMENTS MUST BE WORN DURING EXERCISES!

We recommend exercising 15-20 minutes per day, and all exercises are to be done slowly and without jerky movements. If you have been instructed in MLD, perform your deep abdominal breathing as instructed by your therapist prior to starting any exercise.


GENERAL GUIDELINES FOR PATIENTS AT RISK FOR UPPER EXTREMITY LYMPHEDEMA:

1. If you are starting a new exercise program, start with only very little weight. If you are resuming an exercise program, start with what is comfortable for you, and slowly increase over time.

2. Pay close attention to any swelling that may begin. You may need to level off the weight at a lower level sometimes increasing weight too quickly can cause swelling.

3. Alternate muscle groups during exercise. Do not do multiple sets incorporating the same muscle group. Think opposites to allow time for the muscle group to rest and fluid to move out of the affected arm.

4. Do not fatigue or strain the affected extremity as this could cause a local inflammation to occur and the arm to swell. This can compromise the lymph system and cause an exacerbation of lymphedema.

5. Do fewer repetitions of the affected side. Gradually add repetitions to increase tone over time.

6. Be easy on yourself! If you are used to working out at a higher level, you still may be able to achieve that over time….but going slowly will decrease your risk of any swelling.

7. Movements should be smooth and not jerky.

8. If you feel dizziness, shortness of breath, or any other unusual symptoms, STOP IMMEDIATELY.

9. If anything causes pain, STOP. Do not try and “work it out.”

Exercise is a very important component of lymphedema management. Your muscles move your lymph fluid. So keeping them tone and working will help prevention! Remember: prevention first!