Leg Swelling After Cancer Treatment, with Andrea Cheville, MD, and Jennifer Bradt, PT, DPT, CLT-LANA

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses. In this podcast, we’ll discuss lymphedema, or swelling, in the legs after cancer treatment, including what can cause lymphedema, and how to prevent and manage it. This podcast will be led by Dr. Andrea Cheville, the Director of Cancer Rehabilitation and Lymphedema Services in the Department of Physical Medicine and Rehabilitation at Mayo Clinic in Rochester, Minnesota, and Jenny Bradt, a LANA-Certified Lymphedema Therapist and Clinical Lead Physical Therapist in the Department of Physical Medicine and Rehabilitation at Mayo Clinic. ASCO would like to thank Dr. Cheville and Ms. Bradt for discussing this topic. Dr. Cheville: Hi, I am Dr. Andrea Cheville, the director of Cancer Rehabilitation and Lymphedema Services at the Mayo Clinic in Rochester, Minnesota. And I am joined today by our lead lymphedema therapist, Jenny Bradt. Jenny, do you want to tell our listeners a little bit about your background? Jenny Bradt: My name is Jenny Bradt, and I am the Clinical Lead Physical Therapist at the Lymphedema Clinic here at Mayo Clinic. I am a LANA certified therapist. We'll be talking about that a little bit later, and what I do in and out, every day, are treat patients with lymphedema. Dr. Cheville: And I think it's worth noting that Jenny and I have been in this business for quite a while. I've been directing Lymphedema Services, largely for cancer patients, since 1999. I initially started my work at the University of Pennsylvania in Philadelphia. And, Jenny, has it been 30 years yet for you? Jenny Bradt: Since 1995. That's a long time. Dr. Cheville: No, not so long. Okay. Well, to start out with, we thought it might be useful to talk about what is lymphedema? And how does lymphedema differ from other kinds of swelling? And why does it happen frequently among patients with cancer? And it really comes down to a matter of plumbing. The cells of your body need oxygen and nutrients in order to survive. In fact, they don't last very long without both of those. And so the body transports very large volumes of oxygenated blood throughout the body. But once the blood has reached the tissue, it has to get back to the heart, which is not a mean feat. And in addition, all of the debris, the garbage that cells make—just like we make garbage, our cells make garbage—that also has to get out of the tissue. And so, we have 2 sets of pipes to accomplish this task. We have our veins and the lymphatic vessels. And the veins principally carry fluid. Roughly 90 to 95 percent of the fluid that your heart pumps into any tissue is returned by the veins. And veins also will remove smaller molecules, and these proteins, fatty acids. But the big ones, and again, these are tiny by our perspective. Those are returned to the general circulation by the lymphatic system. So these are bits and pieces of dead cells, cells that die in our tissue, what we call long-chain fatty acids, large proteins, and bacteria. And all of that solid waste material can build up outside of our cells, and it's the tiny, little lymphatic, what we call capillaries, that absorb those, and then through larger and larger lymphatic vessels, they eventually transport those. And actually, the lymphatic system pumps. It has muscle in the walls of the vessel, and it's remarkably efficient at moving this proteinaceous and other debris out of our tissue and to the lymph nodes. And the lymph nodes do 3 things. They regulate the viscosity of lymph, how thick it is. They remove debris that the body doesn't feel a need to recycle. And they identify harmful pathogens, and those are principally bacteria, because our skin is not a perfect barrier and bacteria get in through our skin all the time. And at the level of the lymph node that the immune system learns, "Hey, there's a problem." And that's assuming that there aren't just a few bacteria, but when we really have an infection. And it's a lymph node that the body mounts a response, which is why you may have palpated enlarged, tender lymph nodes in your neck, or in your armpit because those lymph nodes are busy fighting off an infection. So for cancer, both for staging, to accurately stage our cancers, and to achieve local control, we remove or irradiate lymph nodes. There's also increasing evidence to suggest that some chemotherapeutic regimens can compromise our lymphatic system. But it's principally radiation and surgery have been implicated in causing lymphedema. Which brings us to, well, what kinds of cancer treatments are associated with lymphedema? And in truth, any cancer treatment that involves the removal or irradiation of lymph nodes can cause lymphedema. And one aspects of lymphedema that continues to puzzle us is why it's delayed. And so large data sets have accumulated over time that guide us in understanding when lymphedema starts. And what we've learned, for the most part, it starts by the third year out, the third year following treatment. With most patients presenting in the first 2 years. But not immediately, and we think this is because that solid debris, that the lymphatics are responsible for removing, that builds up slowly in the tissue. It's not an immediate phenomenon. Although, for some patients who have severe damage or compromise of the lymphatics in the course of their cancer treatment, they may have swelling immediately. But often, it's a more gradual onset, and the protein builds up, the other debris, it's irritating to the body. The body is doing its best to handle the problem, which it knows isn't normal. And eventually, it causes low-grade inflammation, which many times, is the first indicator that a patient is developing lymphedema. They may have heaviness in their arm, their leg, or the affected body part. Jenny, what are some other symptoms that patients often describe when they're—what we call Stage 0 or subclinical lymphedema—before we can appreciate swelling? Jenny Bradt: Sometimes, those changes are sort of subtle. Obviously, they might notice that their ankles are bigger are at the end of the day, but by morning, they're back to normal. But some patients, especially lower extremities, say, "Well, my jeans fit tighter on one leg, or in one buttock, more than the other side." Or they just don't feel the muscles underneath their skin as much, where the skin just doesn't wrinkle as easily as it does with a less affected leg. The skin might feel thicker. It doesn't necessarily have to make a thumbprint, it's just this overall thickness. They might have veins on the top of their foot that are kind of disappearing. They don't notice them as much as the other side, and those would be early signs of lymphedema. Dr. Cheville: So first, we have—not in everybody, but often—just the symptoms. Heaviness, maybe some aching, and a really important point is that this is a general diffuse feeling. Lymphedema, for the most part, does not cause focal pain. So cancer survivors who have pain in a knee or a wrist or a specific part of their affected limbs, that should not be blamed on lymphedema, and it should not delay a workup for an alternate explanation. But that heaviness, aching, particularly after activity, or if it's the leg standing for a long time, those can be the first signs followed by the subtle changes in volume that Jenny had described. But over time, the debris, the solid material builds up in the tissue, causes inflammation, and will cause scarring or what we call fibrosis. And it's simply collagen, loose disorganized connective tissue that over time, can accumulate and lead to an enlarged—sometimes, very enlarged—extremity. The arms and legs are most frequently affected. But because every tissue on our body, that's face, trunk, breast, genitals, create lymph, lymphedema can, essentially, affect any of our somatic tissues.  So, Jenny, could you share some strategies that patients can use to reduce their risk of lymphedema? Jenny Bradt: Yeah. I think it's important to emphasize that the most important thing to do is to observe your leg and if you note any swelling to treat it right away. Because it is easier to treat in early stages. And never feel that you have too little swelling to report. There's never going to be a time where there's too little swelling to report. An important symptom to watch for is infection of the skin. The risk of developing a skin infection in the leg or legs that are at risk for lymphedema is greater because there's a delayed lymphatic flow in that leg. A skin infection, also called cellulitis, is relatively easy to diagnose and treat. However, if an infection is not treated quickly it can lead to much more swelling in the limb and make it more difficult for the lymphatic system to work well after the infection has resolved. So any changes in color or temperature of the leg should be reported the same day you see them if they are there. So observe your leg. Become familiar with its normal color and appearance so that you can recognize changes if they occur. So for example, if your leg's usually a little pink when your feet are on the floor but not as much when they're elevated, and then you see that your feet stay red or pink when they're elevated, and they're red and warm, well, that's something that should be checked. Because it wasn't what's normal for your leg. There's usually an identifiable cause to most cases of cellulitis, like an open area that allows microorganisms to invade the normal barrier of the skin. And for this reason, it's important to avoid situations that can cause cuts or scrapes in the skin. So if you do have a cut or a scrape on the affected leg, watch and make sure it is healing without any increase in redness to the area. And if you have an open area in the skin, avoid situations where bacteria can invade the wound, such as swimming in a lake. Cellulitis in the leg can be related to fungal infections between the toes, and that's why it's absolutely important to treat and avoid athlete's foot. Athlete's foot causes cracks and web spaces between the toes. This allows microorganisms to invade the foot, so take care of your feet. Avoid walking with bare feet in public shower areas and locker rooms, and if you do have an athlete's foot infection, treat it with over-the-counter anti-fungal medications. There's powders and there's ointments, and if cracking of the skin is a problem, maybe an ointment might work better. But if you're always having sweaty, damp feet, well, a powder anti-fungal medication might work better. But the goal is to make your feet unwelcome for fungus. And it's important to keep your toes clean and dry. Most lymphedema prevention is aimed at preventing excess inflammation, in general, that can occur in the leg at risk. And there's obvious sources of increased inflammation or swelling. For example, a broken bone would cause more swelling. And, of course, everyone tries to avoid traumatic injury, but the other more subtle types of injuries are like the overuse type of injury. So if you want to do something new that you haven't done, start by doing it gradually. What we do know about exercise is that it's beneficial, and eventually, your exercise will make your body stronger and less likely to be injured. But the fact that injuries can cause a greater demand on your lymphatic system is the reason why it is important to be strong but to do that in a slow and measured way. So, for example, if there's an activity that you enjoyed doing before you had cancer treatment, it's very likely that you can continue to do that activity. But be mindful of the time off that you had to take for your cancer treatment and work slowly back to your prior level of fitness. Physical therapists can be very helpful in guiding you back to your fitness goals and can help you treat and avoid injury. If you're interested in starting a new strengthening program for your legs, it's important to start at a very low level and a manageable level increasing in intensity much slower than you normally would if your leg was not at risk for lymphedema. But I cannot emphasize enough it is important to stay active, lean, healthy, strong muscles, good joint motion. That all helps to circulate the blood and return the lymph fluid to your heart, and of course, if you smoke, you need to take active steps to stop smoking. So how do we treat lymphedema if it happens? We've talked about the different stages of lymphedema, and it is not inevitable that lymphedema will gradually become worse and worse. It getting worse can be avoided by treatment. And the goal of treatment is to reduce the swelling in the leg, but then to take steps constantly to keep that swelling from returning. So treatment of lymphedema is not a curative treatment. It is management. We have not found a cure for lymphedema yet. So it's important to understand that there are 2 parts to lymphedema treatment, and they can be referred to as phase 1 and phase 2. Phase 1 treatment involves reducing the limb, getting it smaller, while phase 2 involves maintaining it. In order to reduce the leg initially, it is necessary to apply compression, but you have to apply compression that can shrink with the leg. And that's the reason why we use compression bandages, or sometimes, I'll also call them compression wraps. Most people think of a compression wrap as an ace or elastic wrap when they think of a compression bandage. But in lymphedema treatment, we use something called a short stretch bandage, and it has no elastic in it. The short stretch wraps are used because they create a containment of a leg so that the bandage itself does not expand when the muscles contract and expand. So what happens is when the leg muscles contract, they push up against the bandages, which don't expand, and the muscle pump squeezes the vein's lymphatic vessels more effectively. What this does is it helps moves the excess fluid up and out of the leg, and as a therapist, I can customize a short stretch wrap by including foam pieces inside that short stretch wrap that helps to mold and contour out the leg if it's gotten very swollen and help soften the tissue that might've gotten more brawny or more hard. When we add foam under a wrap, it also gives something for the leg muscles to work against. And when you move in a leg where there's foam inside it, it also kind of massages and softens the skin. And so it does help improve the skin quality, and it improves skin mobility. Legs should move through a series of exercises after every wrap. And these exercises are called remedial. Their purpose is simple. They are done to encourage the muscles to contract against the bandage. And they're not difficult. They can be made up of simple range of motion exercises or muscle contractions. There are other tools we use to reduce swelling along with the compression bandaging. Sometimes, we'll do a massage, which is also called manual lymphatic drainage, or MLD, and that helps mobilize swelling and soften tissue. But MLD needs to be used in conjunction with compression to be effective.  Pneumatic pumps are used similarly in phase 1, but they also should involve compression between pumping. All phase 1 therapy should include education on how to take care of your skin, how to observe for those skin changes, keep the legs moisturized yet dry, keep the skin intact, and treat any wounds right away. Now, phase 2, which is the maintenance phase, is often more difficult than phase 1 because it involves a bit of trial and error. Compression socks or stockings are used in phase 2 to maintain the size of a limb, but they are not necessarily superior to bandages in terms of compression. They simply allow you to go about your life without bulky compression bandages on the leg. We think of compression socks, like compression stockings, as defense, where the bandages are offense. So the bandages work to actively reduce the leg, but the compression socks maintain the smaller size. A well-fitting compression sock should be tolerable all day long. It should keep your leg the same size from morning to evening. And that takes a bit of work to find the right sock for you. And so it's important to work with a knowledgeable fitter and therapist together to figure out what works best for you. So in less severe cases of lymphedema, when you're in that stage 1 where it still reduces at night, a compression stocking during the day might be all that is needed as part of the maintenance program to keep the legs the same size. But for more stubborn cases, additional means of maintaining the reduced size might be needed. And you would know this is necessary if, in your compression sock during the day, your leg swells up and kind of creeps up by the end of the day. Sometimes, we'll add compression wrapping again at night because that will reduce the limb while you sleep with the added benefit of softening a leg that has developed some of those skin changes and thickening. Some days are simply more demanding on a leg, and an occasional wrap at night for some people might be necessary. Wrapping at night is what we use simply because it doesn't interfere with your daytime movement. And for those patients who find that they need to wrap their leg at night fairly regularly, they do have compression devices on the market that mimic these compression bandages. It's important to work with a lymphedema therapist to help you decide what device might be best for you. And we don't wear compression socks at night simply because they are fit really tightly, and they have that more elastic compression that presses against the skin. And when your leg isn't moving, that can start to become uncomfortable. A well-wrapped leg—a good bandage should be more padded and more comfortable when somebody's asleep at night. And remember, every compression wrap is a custom fit to your leg, so it works to reduce the size of a leg better than a compression sock. And there are other tools that can be used in a phase 2 program, such as self-manual lymphatic drainage, maybe a pneumatic pump, but exercise is essential in all of your maintenance programs. So exercise is the key. Dr. Cheville, would you like to talk about how patients could find an appropriate provider to help them manage their lymphedema? Dr. Cheville: I was just going to ask that question [laughter] because it's hard. First, Jenny did a beautiful job of kind of giving a remarkably comprehensive overview of lymphedema, and I just wanted to call out a few things that I think are key take homes and, Jenny, correct me if you disagree. But one, as Jenny said the importance of exercise. And we want to create better pump, and to do that, we use resistive exercises. So both to help the venous blood get back to the heart but also the lymphatics. Having strong muscles, and not atrophied or not collapsed muscles in your leg is important. So that's one type of exercise we would prescribe. The other is the remedial exercises that Jenny mentioned, and that's just creating a pumping action. The idea of becoming intimately aware of your leg, and if you’re starting to change your activity profile either in intensity or type, just exactly as Jenny said, keeping an eye on your leg for changes, particularly after prolonged standing or activity. I really liked what you said about the garments being the defense and the wrapping the offense. I'm going to use that because I think that encapsulates the role of the different compression devices that we use very nicely. And I wanted to just touch, again, on cellulitis because this is a skin infection categorized by patchy redness. Usually, it's a very discreetly demarcated area of redness, also warmth. There can be associated pain and worsening swelling. Typically, it presents after a patient has developed lymphedema but not always. At times, it's the first indicator that a patient has lymphedema. It should trigger an immediate, as Jenny said, communication to your care team, your primary provider, going to an ER because the infections can be dangerous. But also, they can cause permanent worsening of the lymphedema that can be challenging for us to reverse as practitioners. So if you have established lymphedema, this is something that should be on your radar, and I would encourage you to talk to your care team about it. And even if you don't have athlete's foot, because even minuscule amounts of fungus on your toes can create a larger portal for bacteria that normally lives on your skin to enter. So these days, I tell all my patients to use an anti-fungal powder or spray on their feet, roughly 3 times a week. I like the sprays because they get in the little crevices, and they can be less cakey and chalky than the powder. Any other key take-homes Jenny? Do you agree with those? Jenny Bradt: I definitely do. And I think that it is important to have—if it's possible—for you to find a therapist who's a lymphedema specialist in your area, because over the course of the time when you will be managing your leg, if there is something that is a setback, it's important to get back in touch with a therapist. They'll know you. They know your leg, and they know what works well for you. There is a designation of CLT-LANA Certified Therapist. That's the Lymphatic Association of North America. If a therapist has received an additional 135 hours of training beyond their normal physical therapy or occupational therapy degree, they can sit for that exam and get a designation of CLT-LANA. They can be occupational or physical therapists, but they would-- Dr. Cheville: Massage therapists? Jenny Bradt: Massage therapists? I kind of prefer a medical model. We do very well having therapists who are LANA certified, but work carefully, closely, with the actual medical team of that person, so we can take care of the entire person. Dr. Cheville: Yeah, I would agree. I think a key feature though is connecting with a good therapist. And the LANA Lymphology Association of North America website has an interactive search function that will help you identify individuals in your area. And even if you don't find somebody who's in your immediate proximity, often reaching out and contacting that person—lymphedema, it's a small community. We tend to know each other, and they very likely will be able to direct you to appropriately trained individuals, that are convenient for you. And as a physician, hopefully, medical school has changed, but we received almost no training when I went through. This was longer ago than I'd like to think, but in lymphedema, or the lymphatic system, and what I have discovered amongst my patients over the years is they've had to become self-advocates and often educating their own care teams about their unique needs as lymphedema patients. There aren't a tremendous number of physicians specialized in lymphedema. But if you're really struggling with a condition, and feel that you're not getting appropriate local support, I would encourage you to reach out and identify a physician specialist. Which may require some travel, but it may be well worth the effort. So thank you for your attention. Jenny Bradt: Well, thank you very much for listening, and we hope that you have many healthy and enjoyable years of exercise with your legs. ASCO: Thank you, Dr. Cheville and Ms. Bradt. Learn more about how to prevent and manage leg lymphedema at www.cancer.net/lymphedema. 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