Ask-the-Expert Online Conference
The Ask-the-Expert Online Conference called Arm Lymphedema Prevention and Management featured Sara Cohen, O.T.R./L., C.L.T.-L.A.N.A., Saska Thiadens, R.N. and Marisa Weiss, M.D. answering your questions about preventing and managing arm lymphedema.
Editor's Note: This conference took place in July 2002.
- Question from Janita: Exactly what is lymphedema?
- Answers - Saskia Thiadens Lymphedema is the swelling of a limb, usually the arm, but it can develop in the shoulder, neck, hand and fingers, or breast or trunk area. It occurs because the lymph nodes have been removed from the armpit, so there's an imbalance in the lymphatic system: more fluid is going into the arm than the lymphatic system can carry out.
- Marisa Weiss, M.D. It's like a plumbing problem. More fluid is coming into the arm than can leave the arm. So the fluid builds up in the soft tissues of the affected area. That's why the arm gets bigger, swollen with fluid.
- Saskia Thiadens The job of the lymphatic system is to remove impurities from the body's tissues through the circulatory system.
- Marisa Weiss, M.D. All fluid in your body needs to circulate; that is, it needs to keep moving. Fresh blood comes to your arm through the arteries, and the old blood leaves through the veins. In addition, some fluid comes out of the very tiny arteries and nourishes your tissues and brings a fluid with immune cells that help protect your tissues from infection. This fluid is lymph. The lymph fluid also needs to keep moving. After it leaves your tissues, it moves out of the area through the lymphatic channels. Lymph nodes are filters along the lymphatic channels. When lymph nodes are removed, the fluid drainage pipes can be disrupted. The fluid may not flow through them as easily as it did before surgery. This is how the fluid can get backed up.
- Answer The lymph system has a deeper system and a superficial system that's close to the surface of the skin, and one of the goals of treatment is to stimulate the superficial vessels to help move the fluid out of the area that's swollen.
- Question from Kate: Is massage beneficial in treating lymphedema?
- Answers - Answer One of the main treatments for lymphedema is a massage-like technique that helps to stimulate the lymphatic vessels. However, massage, the way people generally think of massage, is a vigorous technique that can cause an increase in fluid production. The type of massage that is used to treat lymphedema is a very gentle technique. Lymphatic massage is directed towards the heart from the fingertips, up the arm, towards the shoulder, and there are very specific directions and strokes that are used in this particular massage.
- Marisa Weiss, M.D. Inside the tiny little lymphatic channels, there are valves. The valves keep the lymphatic fluid flowing in one direction, towards the heart. So when you massage up along the arm towards the heart, the valves help keep the fluid going in the right direction: out of the arm, and back into circulation.
- Saskia Thiadens It also is extremely important to remember that a certified lymphedema therapist needs to either perform the treatment or educate the patient and/or family members in self-care techniques, once the patient has gone through an intensive treatment program. The therapist will design the treatment plan based on the severity of the lymphedema. It can also depend on the type of reimbursement patients can get from their health plans. In my practice, for example, we would treat a patient with a mild upper extremity lymphedema for a five-day period, including two sessions of manual lymphatic drainage (MLD), bandaging, exercise, and also education in self-care. So by the end of the five days, usually the patient is able to manually drain the limb and follow a home program.
- Answer Manual lymph drainage, or decongestive lymphatic therapy, involves the massage-like technique followed by using special bandages and low-stretch bandages, which are different from Ace bandages, and the bandages are applied in layers over different kinds of padding material. The goal of the bandaging is to reshape the limb, support the skin, and to prevent re-accumulation. The compression garment is used at the conclusion of treatment. Patients often use a compression sleeve during the day, and they sometimes use bandages at night after the intensive part of the treatment.
- Marisa Weiss, M.D. An elasticized sleeve is one piece that covers the arm, and may also include an additional garment that covers the hand. These sleeves are made to order for you; they come in sizes.
- Answer There are many different brands of lymphedema garments, and it would be helpful for women looking for a garment to try different brands and see which one works best for them. They should never use a garment that causes any kind of skin irritation, allergy, or constriction at one area that causes swelling below that point.
- Saskia Thiadens The person needs to be measured by a certified fitter.
Marisa Weiss, M.D.
It's not a good idea to walk into a medical supply store and ask the person behind the counter for a sleeve. If these garments do not fit properly, they can cause you more problems than they solve. Likewise, the application of a specialized bandage requires a lot of instruction and guidance. It needs to be applied in an even way, where a little bit more pressure is exerted towards the hand, and a little bit less towards the shoulder, in order to move the fluid in the right direction. If there are pockets where the pressure of the bandage is uneven, you can get pockets of swelling. This is a technique that you can learn to master with the guidance of a trained specialist.
From a practical point of view, I've learned from treating many hundreds of women with breast cancer that summertime is a difficult time for lymphedema patients, because with the extra heat, there tends to be extra swelling of the arm. It's also a lot less comfortable to wear a hot, elasticized, tight garment along your arm during the summertime. There are other ways to manage lymphedema besides wearing a sleeve all day. Many of my patients prefer the practical nature of a specialized pump.
I'd like to hear from our speakers about how they approach the use of a specialized pump that involves the placement of the affected arm into a sleeve that exerts a pumping action, pumping the fluid from the fingertips up to the shoulder.
- Saskia Thiadens I do not recommend the sequential gradient pump, but if people do use the pump, it is important that a certified lymphedema therapist monitor them and that the pressure does not go above 40mmHg. They should not stay on the pump for more than an hour, and they should watch the arm really closely once they come off the pump. And most important, do the manual lymphatic drainage before and ideally after the pump treatment as well. The reason we are concerned is because if we do not open the pathways in the proximal shoulder area, you can congest the area and worsen the condition, or, potentially, it could lead into irreversible lymphedema.
- Marisa Weiss, M.D. By sequential, we mean that the pump creates a sequence of pressure starting from the hand up to the shoulder. And by gradient, we mean that the amount of pressure applied tends to be greatest at the lowest part of the arm, and it decreases as it moves up the arm. The pressure is lower by the time it reaches the shoulder.
- Answer Historically, pumps were used before the European lymph drainage techniques were brought to this country. Pumps were the prescribed treatment whenever anybody had edema, and part of the problem now is that some physical or occupational therapists or doctors may not be aware of current treatments for lymphedema and prescribe a pump. There are many schools of lymphedema therapy, and some schools recommend using a pump in conjunction with lymphatic massage, and there are many studies that show pumps are effective, and some show they are not effective.
Marisa Weiss, M.D.
Lymphedema is a chronic problem that may be mild in nature, or may be really significant to an individual person, and, in addition, it can vary over time. Sometimes it's okay, and sometimes you get flare-ups. For many women that I take care of who have lymphedema, it's important to incorporate a regular approach to managing it on a daily basis. Their insurance may not cover a professional MLD (manual lymphatic drainage) person, or they may be working during the day and be unable to get to such an expert. I have plenty of patients who go to a very capable pump expert, and they use their pumps each evening, or at least several times a week in the privacy of their homes, after work, when they're relaxing, to decompress the arm. They're carefully monitored so they get the benefit without the side effects of a pump.
Each woman has to find what works for her. What works for you now may continue to work for you, or it may not work as well over time. If you work closely with a physical therapist, occupational therapist, and doctor, you can ask for extra help and be monitored for this problem over time. Often women use a combination of treatments to help ease this ongoing problem.
- Question from Sue: What types of exercises are to be avoided in order to prevent lymphedema? Are machines at the health club a benefit, or harmful even when using low weights? Are stretches good or bad?
When someone has lymphedema, his or her lymph system has trouble removing excess fluid from the tissue. When someone exercises and uses resistance, excess fluid can build up in the tissue. There are different opinions about what's the best form of exercise with lymphedema. There are some schools of lymphedema therapy that recommend doing progressive resistive exercise. This means using weights in a gradual manner so that you use a lighter weight first, and then slowly use a heavier weight. There are other schools of lymphedema therapy that suggest that people with lymphedema shouldn't use any weights. A lot of the decision about whether to use weights or not is very individual, because there are some people who use weights and don't notice any worsening of their swelling, and others use weights and the swelling gets worse. So the decision about whether to use weights or not has to be based on your individual situation. You should discuss this with your therapist.
I don't recommend a specific limit to weight, because for one person, five pounds may be fine, and another person's arm may swell after doing any resistive activity. The other thing I want to point out is that repetitive exercise or activity can also cause an increase in fluid production in the tissue. This means that even doing something lightweight, but in a repetitive way, like cleaning a table, wiping a window, or working at the computer for an extended period of time, can fatigue the muscles in the arm and can cause an increase in swelling.
- Marisa Weiss, M.D. One of the jobs of our muscles is to push the lymphatic fluid through the channels with each contraction, so if your muscles get tired, then they're less likely to exert this pumping action.
- Answer Some exercise is very helpful, and very important in the management of lymphedema. Lymphedema therapists will prescribe a set of exercises that are non-fatiguing that will help stimulate the lymphatic system, and doing those types of exercises in conjunction with compression around the arm is very helpful to the lymph system.
- Saskia Thiadens The safest and, in my opinion, best exercise for upper extremity lymphedema is swimming. You don't hurt yourself, and patients will greatly benefit from this. Some of my patients wear an older sleeve in the water. Once the sleeve becomes wet, there is more compression in the garment and this can actually help the swelling as well.
- Answer Exercise is one way of stimulating the muscles. Activity is another important issue for many lymphedema patients. Certain activities like tennis, golf, and bowling—using different types of equipment, can be done in moderation for some women with lymphedema, and other women have trouble when they do these activities. There's no rule about whether or not someone should engage in these activities or not. Part of the decision about whether to continue with an activity has to do with the value that the person places on that activity, as well as the effect on the arm.
- Marisa Weiss, M.D. I encourage my patients to be active, but also to be cautious. So for my patients who love to garden, I encourage them to wear gloves that go above the elbow to prevent cuts. For patients who like to bake and be in the kitchen, it's important to protect the arms and hands against burns and cuts. If you like to go out in the woods and explore nature, it's important to protect your skin against sunburn, bug bites, and exposure to poison ivy and other plants that may cause trauma to your arms and hands.
- Question from Lymphomaniac: As a lymphedema patient, I do 'all the right things' to control the collection of lymph fluid in my affected arm: compression sleeve during the day, bandaging at night, self-massage, and monthly MLD. I'm wondering if there are things I can do to increase the effectiveness of my overall lymphatic system, such as dietary supplements, foods to avoid, special exercises? I started Tai Chi during breast cancer treatments.
- Answers - Marisa Weiss, M.D. It sounds like you're already doing so much to help yourself be well.
There is really no specific diet for the lymphatic system, but we do tell our patients to be on a low-sodium or no-sodium diet, if possible. We recommend an overall well-balanced diet—drink lots of water and tea, no soda pops. Also, weight is a major factor in lymphedema. Studies have shown that obesity or being very overweight means a higher risk of developing lymphedema.
There are many patients who are experimenting with herbal remedies such as bioflavinoids. There is Rutin. There are patients who are actually taking benzopyrones in the U.S. and around the world in combination with complete decongestive therapy and feel there is a benefit. This is a non-FDA-approved medication, but studies that were done in Australia in the 1980s by John and Judith Casley-Smith showed that it reduces the protein content in the lymphatic fluid.
- Answer There have been studies that show there are certain side effects and toxicities with the drug, like liver toxicity.
- Marisa Weiss, M.D. Some doctors also use diuretics or a 'water pill' to manage lymphedema. In my practice, I strongly discourage this as a regular form of treatment. I reserve this for very occasional use, like to manage a significant amount of lymphedema for a one-time occasion, such as your daughter's wedding when you're really anxious to get short-term results that may not be achieved by another form of treatment. How do you feel about the use of diuretics?
- Answer Generally, I would not recommend the use of diuretics either, except if they were needed for some other medical condition. The problem is that they remove the water components of the fluid and leave the protein component in the tissue, and when the person stops taking the diuretics, the fluid accumulates quickly.
- Marisa Weiss, M.D. The diuretic is a treatment that affects your whole body, and it can throw off the balance of chemicals in your body as well. I believe that ongoing use of diuretics should not be considered as a treatment for lymphedema. It is not an effective solution, and it may cause significant side effects. There are better ways to go.
- Question from Maria: Why do some women get it, and others don't?
We don't know which patients will develop lymphedema and which will not. There are patients who develop lymphedema shortly after breast cancer surgery and axillary lymph node dissection. In my opinion, the patients who develop it shortly after surgery clearly already had a compromised lymphatic system, and, as a result of the trauma to the lymph nodes and lymph vessels, they immediately experienced swelling of the limb.
There now are ways of identifying this by ways of diagnostic procedures such as the lymphingioscintography. This is a nuclear medicine procedure where we inject a dye in the subcutaneous tissue in the web of the fingers and visualize the lymphatic system and identify problems.
- Marisa Weiss, M.D. This can be a valuable technique in patients who appear to be at a significant risk for lymphedema. It is not considered a 'routine' test. In general, if you are without this unusual predisposition to develop lymphedema, the risk of lymphedema from breast cancer treatment is increased as the amount of treatment you receive is increased. That is, the more extensive the lymph node removal under the arm, the higher your risk. Radiation to the lymph node-bearing areas in the underarm also increases your risk. The use of multiple chemotherapies in high doses can also add to the risk. The onset of lymphedema right after surgery can certainly occur. It is also true that lymphedema can occur even years later. So taking care of your arms over time and staying active is important, but with a higher level of awareness of your arms and taking care of your whole body.
- Answer Two other risk factors were mentioned by Saskia earlier. One is weight gain that may put someone at greater risk for developing lymphedema, and the other is an infection post-surgery called cellulitis, or injury or trauma to the arm.
- Saskia Thiadens Anybody who has had axillary lymph node dissection is at risk for life, so follow preventive methods closely at all times. No blood pressure measurement, no injections, and no blood drawn from the affected limb—ever.
- Marisa Weiss, M.D. Your skin is one of your best friends. Your skin has a very important job to protect your arm against any type of trauma or infection. If you have dry skin or you tend to have cracked skin, or a habit of picking your skin near your fingers, you need to modify what you do. It is very important to keep your hands moist and your skin moist to minimize the amount of cracking. And if you find that your habit of picking your skin on your hands is difficult to break, I often suggest that my patients wear cotton gloves at home, which you can buy from the Vermont Country Store catalog. This can help you stop doing some of the things that might put you at a higher risk for infection.
- Answer People who have had bilateral axillary node dissection have a particular problem, because they are at risk on both sides. These people, in particular, as well as all lymphedema patients, really need to advocate for themselves whenever they're having medical procedures, and they may need to educate the medical professionals about the risk for developing lymphedema.
- Marisa Weiss, M.D. What do you suggest to women who have had lymph node dissection under both arms?
- Answer Some people recommend using the older surgical site. Some recommend using the non-dominant arm.
- Marisa Weiss, M.D. If you are right-handed, use your left side.
- Saskia Thiadens I recommend not using the affected limbs at all. You can take a blood pressure from the leg and hopefully find a vein in the ankle or foot. Another important point is that many patients today are wearing a lymphedema alert bracelet, which alerts medical professionals that there should be no blood pressure taken or needles inserted in the arm. The National Lymphedema Network (HOTLINE: 1-800-541-3259 or 510-208-3200) provides these bracelets.
- Marisa Weiss, M.D. Many women today who are receiving chemotherapy after a breast cancer diagnosis use a mediport or a portacatheter, and this allows the injection into a 'button,' which drains into a big vein closer to the neck, so there is no need for any injections in the arm or other parts of the body. For some women, this is very useful. It is usually kept in place through chemotherapy, and for some period of time after. It is generally not used permanently. That is, it is removed after it is no longer needed on a regular basis.
- Answer There are safer ways. If for some reason you can't have blood pressure taken on your leg, you can instruct the person taking blood pressure on the arm not to inflate the cuff very, very high.
- Saskia Thiadens Better avoid taking the blood pressure on the arm if you can help it. Listen to the patient's history and heart. If there's a concern, it has to be taken, but I wouldn't do it if it were not necessary.
- Question from Nicole: Can having a prior injury, say, to the shoulder or elbow, make moving the lymph fluid more difficult around this area?
- Answers - Answer Sometimes having a scar can prevent lymph fluid from flowing efficiently, particularly if it's a thicker scar.
In an existing lymphedema, we only will perform a surgical procedure if really necessary. Again, traumatizing the lymphatics in a lymphedema-affected limb could potentially worsen the condition. Today people do go through carpal tunnel syndrome surgery, which is quite common. I recommend that my patients do some more aggressive MLD and bandaging before the surgical procedure. Also, make sure to go on antibiotics 24 hours before the surgical procedure to avoid an infection. With these precautions, most of my patients really had no problems.
Breast reconstruction is another issue. Women who have reconstruction may already have existing lymphedema, and if they go through an additional surgical procedure, the edema might worsen. Then again, many patients do fine. It's very individual, and women should discuss the issue carefully with the plastic surgeon. A person who doesn't have lymphedema but has a prior trauma to the limb may already have a compromised lymphatic system that could lead into earlier lymphedema. But again, it's very individual.
I really encourage doctors to refer their patients before the surgery to a physical therapist or other lymphedema specialist, to spend an hour with them and educate them about what to do after surgery to lower the risk for lymphedema. Sometimes patients can do prophylactic manual lymphatic drainage as a preventive method, and there are patients who do not have lymphedema today but still do the drainage daily. It takes 10 minutes, not a big deal, and people should be aware of this option.
- Marisa Weiss, M.D. Somewhat related, this is an opportunity to comment on one approach to the treatment of lymphedema that's suggested by few people, and that is surgery to relieve the condition. I have seen only disasters when a surgeon attempts to use surgery to improve the flow of fluid off the arm. In my strong opinion, this procedure is contraindicated.
- Saskia Thiadens There are surgeons in Italy who have done a fair amount of lympho-venous anastomosis (connecting lymph vessels to veins). Some patients had successful outcomes, but it is extremely important to monitor these patients very closely. It is not done in the U.S. There is a surgeon in Malmo, Sweden, who has done liposuction in upper extremity lymphedema, and states that he has 100% reduction. The key to the reduction is that these patients wear a compressive sleeve 24 hours around the clock. A lymphedema nurse therapist in Colorado recently took a patient to Malmo, participated in the surgery, spent time with the surgeon, and brought the patient home with 100% reduction with wearing the garment.
- Question from Mikki: Are there any known medications that can worsen lymphedema? I had trouble with Celebrex.
- Answers - Marisa Weiss, M.D. Every person is unique. You may discover when you take a medication that it may affect you, even if it's not a well-described side effect of that medication. If you take a medication and it seems to aggravate the problem, then talk to your doctor about your concern over this side effect. Tamoxifen can increase the risk for blood clots, primarily in your legs, but it can also happen in other parts of your body, including your arms. When a blood clot occurs, there can be associated swelling that is a result of back-up of the veins, rather than a primary back-up of lymphatic fluid. This is a well-described but thankfully rare side effect of tamoxifen. There are no other specific medications that we are aware of that are known to increase the risk of lymphedema.
- Question from Sally: Do you get lymphedema right after surgery, or can it occur anytime—even years after surgery for breast cancer?
- Answers - Answer I have patients who come in 10, 15, even 20 years after surgery who never had swelling before and suddenly developed lymphedema.
- Marisa Weiss, M.D. Sometimes it can happen without any clear reason, and sometimes it can happen because of something specific that happened, like an infection, burn, overuse of the arm, or something like that.
- Question from Kay: Is alcohol a 'no-no' if you are susceptible to lymphedema?
- Answers - Saskia Thiadens My experience with patients and alcohol is that wine definitely seems to increase the edema. In the morning, it feels heavy and fuller, and wine seems to have an impact, but hard liquor doesn't. This is what I've heard from my patients.
- Answer I agree. Anecdotally, patients have said that wine can cause an increase in swelling.
- Marisa Weiss, M.D. It's very important to keep on living your life and enjoying your life along with good food and wine in moderation if that is something that you enjoy. Sorting through patient stories requires very careful listening, because it may be that along with the wine, you also had a lot of other rich foods that particular evening, and a lot of extra salt in the foods you've eaten. So sometimes it's hard to figure out what of all the things you did or ate may have been the thing or combination of things that may have led to an increase in swelling.
- Saskia Thiadens I suggest in conjunction with all the rich food and wine to continue to increase water intake.
- Question from Betty: I know to bandage when I fly. What about a mountain vacation (4000 ft. up)? Will that affect my lymphedema arm?
- Answers - Answer I've had patients go on vacations like that and notice an increase in swelling due to atmospheric pressure. I encourage them to use compression, a sleeve or bandage, as much of the time as possible if they have symptoms.
- Marisa Weiss, M.D. For people who are mountain climbing or doing other activities like that, it's important to rest intermittently and not always have your arms in the downward position. One thing that we have not mentioned so far is the role of elevation. In your normal daily life, you usually are balanced with activity and periods of rest, and you vary the position of your arm. When you arm is above your shoulder level, gravity helps drain the fluid off your arm. This is one way to help ease arm edema, but it's not very practical as a long-term solution, because walking around with the affected arm above your shoulder or head doesn't work for most people.
- Answer It's better to elevate the arm in a resting position rather than holding it up in the air, because the muscles can fatigue which can cause a increase in fluid production.
- Saskia Thiadens If you do go up in the mountains and backpack, don't carry a heavy backpack over the affected side. You can develop lymphedema or worsen it, so have someone else carry the heavy weight. When you are up in the mountains, and I've gone with friends who've had breast cancer and no lymphedema, really cover up the arm, because sunlight or heat can create or worsen lymphedema. So cover up!
- Marisa Weiss, M.D. Sunburn can cause significant injury to the skin of the whole arm and can make matters worse.
- Saskia Thiadens Use a good sunscreen.
- Marisa Weiss, M.D. I recommend to my patients that they use sunscreen with an SPF of 30 or greater.
- Answer Another risk factor is heat in general. In particular, if you're going for some kind of physical or occupational therapy and the therapist wants to use heat treatment, you should let the therapist know that could be a risk for you if you have lymphedema. And try to avoid heat on the arm in the form of hot compresses, because that causes the blood vessels to dilate and can bring more fluid into the arm.
- Saskia Thiadens If you can, avoid saunas or hot tubs. Keep your affected limb out of the hot tub if you go in.
- Marisa Weiss, M.D. I have a patient who had just installed a hot tub in her home when she was diagnosed. It took a few months to work out a compromise, but she does as you say and keeps her affected arm out of the hot tub. They fill the hot tub a little lower so it's not affecting the area of surgery on the breast as well, and she puts the temperature down a few more degrees than most people do. So far it's been fine.
- Answer Generally, physical and occupational therapy are covered by insurance, but always check with your insurance company. There are certain codes that are accepted, and manual lymph drainage has a reimbursement code that is accepted by Medicare and most insurance companies. If the therapist uses that code, it should be covered.
- Marisa Weiss, M.D. The insurance company may cover MLD for a limited number of visits. You may need to be assertive and pushy with your insurance company in order to get as much of your treatment covered as possible.
- Saskia Thiadens Overall, the reimbursement in the U.S. is still very chaotic. If you're under the care of an occupational therapist, depending on where you're located, you can receive reimbursement for a certain amount. Nurses and massage therapists today are rarely reimbursed, and it is becoming more difficult. Most important is that the patient needs to be seen by a physician, ideally a lymphologist—a doctor who is educated in the lymphatic system. Most doctors can evaluate patients, and the patient should continue to stay under the care of the physician.
- Marisa Weiss, M.D. By speaking up as a patient affected by this condition, you can help teach your health care professional about the condition and help him or her become more aware and involved in its proper management.
- Saskia Thiadens In late August, I'm organizing the 5th National Lymphedema Conference, and we're introducing a four-hour instructional session primarily for physicians to educate them in the anatomy and physiology of lymphedema, and to add lymphedema to their existing practice. I'm happy to say that 35 physicians have registered for this.
- Answer Remember, if you develop lymphedema, it can't be cured, but it can be managed, and people should try to get as much information as possible by consulting with a lymphedema specialist and talking about their treatment options and the best course of treatment for their particular case. Although some activities may need to be modified to avoid provoking additional swelling, it's important to participate in pursuits that give you pleasure and satisfaction.