December 2018 Ask the Expert: Lymphedema
Anyone who has had lymph node surgery as part of breast cancer treatment is at risk for lymphedema, a condition where fluid builds up in your hand, arm or chest wall and causes swelling. But lymphedema often isn’t discussed or well understood. Whether you’re living with lymphedema or want to learn how reduce your risks of getting it, you may have questions about the condition.
Living Beyond Breast Cancer hosted Wilma Morgan-Hazelwood, OT, CLT, LANA, and Josh Levin of LympheDIVAs for a Facebook Live Ask the Expert program. They answered your questions about lymphedema, how lymphedema sleeves work, how to measure for compression garments and more. They were joined by Young Advocate Nadiyah Brown, who modeled as Josh and Ms. Morgan-Hazelwood showed how to measure for compression garments. LBBC’s senior director of programs and partnerships, Janine Guglielmino, MA, moderated the discussion.
The questions and answers on this page are lightly edited from a transcript of the video, as well as questions that were not answered during the program.
Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.
Ms. Morgan-Hazelwood: Lymphedema is an accumulation of protein-enriched fluids just beneath the skin. That causes some edema, or swelling, and chronic inflammation that can lead to fibrosis of the tissue, which is a thickening or scarring of the tissue. In other words, it's a swelling of the limbs, the chest wall, or breast.
Lymphedema can be caused by an injury into the lymphatic system, which is called secondary lymphedema. And so that's how it's connected to breast cancer. When you have axillary lymph nodes removed or radiation, that can cause lymphedema.
Ms. Morgan-Hazelwood: They are, but it greatly reduces the risk. We were so excited years ago when that came. We can actually target the lymph nodes that are part of that cancer. Usually when you have a sentinel node bypass, you have 1 to 4 nodes removed. With an axillary node dissection, you have level two and three axillary nodes removed. You usually have 20 or fewer nodes removed.
There is anywhere from a 3 to 8 percent chance of developing lymphedema with a sentinel node bypass. When you have your axillary node dissection, it usually goes up to anywhere from 15 to 30 percent.
Mr. Levin: And some of the studies are saying that risk stays even25 years after the surgical event. And it’s very important that even if you do have that sentinel node surgery, to be aware of risk-reduction practices to further reduce the risk of developing lymphedema. Staying ahead of it and making sure that you are doing what you can, and what you're comfortable with, to reduce your risk goes a long way to helping prevent that initial onset of swelling.
Ms. Morgan-Hazelwood: There is swelling, usually anywhere from 4 to 12 weeks after surgery. And during that time we’re usually looking at just pure edema, or swelling. The difference between edema and lymphedema: edema is acute, it comes and goes, and lymphedema is going to be chronic. Edema is usually just regular fluid. And lymphedema has that protein-rich fluid, which gives a different density to the area. Edema is going to be able to dissipate. And we know lymphedema is going to be chronic but can be manageable. So the onset of true lymphedema can happen initially but it usually comes between 6 months and 18 months after your initial surgery. Usually about 80 percent of the people who are going to have lymphedema will develop it in that timeframe.
Ms. Morgan-Hazelwood: Sometimes it does. It's good that you're getting some sensation coming from the nerves because that means they're actually firing. They're rebuilding. So don't be too alarmed by that. Sometimes a massage can help that pain. So, by actually getting enough stimuli, it calms down the nerves if you're having a lot of pain from that.
Mr. Levin: From the therapy perspective as well, there's standard massage but then there's also manual lymphatic drainage as part of complete decongestive therapy, which is something that a trained lymphedema therapist can do. It does involve some massage. It does require someone who is trained in this and can help greatly reduce the amount of edema that is in somebody's limb.
Mr. Levin: So they are a part of treatment. What's most important to remember about the sleeves is: their job is not to reduce the swelling. Their job is to manage it, maintain it and help prevent it from getting worse. It’s only that hands-on therapy, the use of short-stretch bandaging and multiple-layer wrapping that can bring down somebody's swelling. So wearing the compression sleeves is something that you can do to help prevent an initial onset and also something that you wear in conjunction with treatment to maintain it so that it’s not getting worse in between your visits to a therapist.
Ms. Morgan-Hazelwood: It's extremely important. It's the only thing that's actually gonna keep your lymphedema down. Lymphedema, if it's not controlled, will continue to grow. Compression sleeves are the way we are able to manage it. They also help you protect that arm. With lymphedema you're at risk for infections, for cellulitis, which is very damaging to the lymphatic system. Cellulitis is an infection that goes directly onto the skin and directly underneath it. Our receptors for the lymphatic system collect fluid directly underneath our skin. And that's where the infection is. So we're worried about that because the cellulitis can cause lymphedema. With cellulitis, you're damaging the receptors and also the vessels. And so that's why it's so important to keep that skin and area very healthy.
So with the risk of infection, it's one area that if we know we can keep that lymphedema down, it actually decreases the risk of lymphedema. Because once it gets filled, it's almost like sewage there, and we won't be able to be able to control that and make it very healthy for you.
Mr. Levin: The way that these garments work is twofold. One is that they have a graduated amount of compression, where the most amount of compression on your limb is at the furthest point from the shoulder. So when we're looking at a 20-to-30-millimeter-of-mercury garment, the compression should start somewhere inside that range at the wrist and then get lighter. Things like to move from a high-pressure environment to a low-pressure environment, so that graduation helps promote the flow of the fluid in the arm back into the core where the working lymphatics can pick it up.
In addition, it's just adding overall pressure onto and inside the limb, and the lymphatic nodes and vessels that're in there have little one-way valves. And when you put the whole system under pressure, it makes it a little bit easier for those valves to take in, process, and then move the fluid along. So those are the theories of what these garments are doing.
Ms. Morgan-Hazelwood: If you have an area that's putting too much pressure, say on the forearm, it's gonna push the fluid back down into the hand. That's exactly what we want to protect against.
Ms. Morgan-Hazelwood: We really hope so. Years ago when you got lymphedema, you had lymphedema for life. And now we're finding it actually can be reversible in some cases. And that's what we usually call a stage 1. A stage 1 means you have lymphedema and it will dissipate at one point, either through elevation or through time. Then we get into a stage 2. When you have stage 2, which is chronic, that stays the same; when you go to bed, when you wake up, you will have lymphedema.
Ms. Morgan-Hazelwood: We know at this point there are four areas that increase your risk of lymphedema. Number one is also the number of axillary nodes that you have removed. Number two is going to be radiation, and mostly radiation into the axillary areas of nodes. Number three is going to be obesity. And four is going to be cellulitis. We talked about that a little bit earlier: what is cellulitis and why it causes lymphedema.
These are also the areas that you have to prevent lymphedema. And we talk about blood pressure or needle sticks because we're worried about infection. Nowadays, we’re very careful with cleaning and infection risk, but if you don't have any problem with the other extremity, it's always best to use the other arm.
Of course if it's a life-threatening thing and you have to have it, that's fine, but you want to prevent any kind of cellulitis forming. The risk of the stick itself causing lymphedema is probably low.
Mr. Levin: It's really all about risk reduction. There was a study put out a couple of years ago where they did look at needle sticks and blood pressure and what the impact and risk of lymphedema was with those. And the study showed that there was relatively low risk, especially with the blood pressure. And they said the same with the needle stick, but they also raised the issue of cellulitis with that needle stick. Because of that very strong correlation between cellulitis and lymphedema, in general it’s still safe to say, "Why don't we try the other arm?"
And with the blood pressure it's the same sort of thing: even though it is very low-risk and that there isn't necessarily a study that shows a direct link, it's of the idea of saying, "It's not that difficult to try the other arm."
It's a very low-impact request. So it's one of those things where, yes, the studies are showing that there might not be the risk that we once thought that there was. But it's also not a very big deal to say, "Hey, can I use my other limb?"
Ms. Morgan-Hazelwood: And if both sides are affected you can have your blood pressure taken on your leg and have blood drawn from there as well.
Ms. Morgan-Hazelwood: It's actually very important, and it's one of the parts of complete decongestive therapy. The lymphatic system, even though it's part of our vascular system, does not travel with the beat of the heart. It actually travels by the pumping of a muscle. So we need that muscle to be pumping to actually move that lymphatic system.
So the problem is, how much exercise do you do? Because the more you exercise, the more you pump in fluid into an area that might have trouble getting the fluid out. But you don't exercise, then you don't have the ability to move the fluid out. So that's another reason why we always say: wear your sleeve when you're exercising because it will enhance that compression, will enhance that pumping and make exercise that much more effective for you. But that's where exercise is so important for the lymphatics.
Mr. Levin: And also making sure that you're doing the exercises properly. There was an excellent study done through the University of Pennsylvania called the PAL study, the Physical Activity and Lymphedema Study, which was really the first one that overturned the myth that you should not be lifting weights and that weightlifting and lifting heavy things is dangerous. Yes, there is a risk in using heavy weights with an arm that is at risk. But building up from a very low weight with proper supervision using proper form, all of that
is strengthening that arm and doing all those wonderful things that we were just talking about that can help improve the lymphatic system as a whole.
Ms. Morgan-Hazelwood: So that actually proved that weightlifting does not cause lymphedema and it does not increase lymphedema. As long as it's done in a very slow-process way.
Ms. Morgan-Hazelwood: If you go into the website of the PAL study they have a program that can actually be done. You really want to make sure you do those exercises with a lymphedema therapist to be able to carry through with that. But it's a wonderful study. It is online. Please read it and take a look at the exercises that are part of it.
Another thing we talk about regarding exercise is also stretching. That is so important. When talking about the breast cancer, the axillary area can get so tight. With surgery and radiation, it wants to keep pulling down. So it's nice to make sure you keep up those long stretches. Climbing that wall is important. With anything else, with any of the exercises you're doing with lymphedema, you don't want to do a constant, repetitive motion. We don't want the muscle pumping. We're not building strength. What we're building for is that long stretch. That's gonna give memory to your muscles. That's gonna give that beautiful stretch to keep that area open.
You want that area to flow, to be able to drain properly. So we do those beautiful, long stretches. Yoga's beautiful for that stretch and also for exercise, because it gives you that long stretch. We don't want pain. So if you're having pain in the stretch, reduce that a little bit. But get that long stretch to be able to rebound those muscles and to be able to move.
NOTE: Living Beyond Breast Cancer has reported on the PAL study.
Ms. Morgan-Hazelwood: I might be a bad one to ask for that. I believe, if it's not broken, don't fix it. So if you're showing no signs of lymphedema, nothing into the breast, nothing into the chest wall, nothing into the arm, you sometimes can do more harm if that sleeve is not fitted correctly. So usually, I recommend not using a sleeve unless you have any signs or unless your physician or your therapist is recommending it for other reasons. We worry about making sure it fits right and you’re using it right.
Mr. Levin: Making sure that it is fit right is the most important thing here, making sure that the graduation is going appropriately, that you're getting the right amounts. And it is important to talk about it with your therapist if you have one, or with your physician as to whether or not they believe that this piece of the risk-reduction process is something that you should be doing or shouldn't be doing.
Ms. Morgan-Hazelwood: If I could tell you the cause, I would be a millionaire. I really wish we could. The technical term for cording is axillary web syndrome. We call it a syndrome because we do not know why it occurs. We know it occurs in most women after breast surgery; probably 70 percent will develop cording. Usually it dissipates on its own very quickly. And some do not. But it's what we usually see the most. People correlate cording with lymphedema. It’s not correlated. Just because you have cording, that doesn’t mean you develop lymphedema, which is nice to know: there’s not a high risk for that. Cording is actually inflammation in the actual lymph vessel. Initially we thought it was more in the vascular area because cording can be quite large, but it is actually an inflammatory process along the cording.
So what we wanna do is stretch that. We can actually get that stretched and your cording will dissipate, and then all of a sudden will come back again. So that's one area that we recommend you do those long stretches.
We used to try to break them, which we don't do anymore. And we believe that long stretching is what's really appropriate. You can also go to a lymphedema therapist. We're all trained in treating cording for that reason: to be able to help. Because it's very painful. It's very limiting in your range of motion, and it's very scary.
Mr. Levin: And it just further makes it important that when you do see a therapist, to make sure that PT or OT is a trained and certified lymphedema therapist as well.
Mr. Levin: In general, the answer is yes. But each person will have to talk with their physician or therapist to figure out if the garment is delivering correct compression and that it's graduating appropriately. The LympheDIVAs Fitter's Aid tool does just that and will allow the therapist to verify that the compression is starting at the level they would like and that it graduates appropriately. If your arm is shaped in such a way where the compression may not graduate appropriately, such as with a very narrow wrist and a very large forearm, that is when an off-the-shelf may not work.
Ms. Morgan-Hazelwood: No, because our body is set beautifully with what we call watersheds. They form down the center of the sternum, on the middle of your back and down at your waist. And so because of the watersheds, lymphedema cannot travel from one side of the body to the other, and it cannot travel from the arm down to the leg. So you might get edema in that breast after, as you would normally because it's been injured. It's going to be protected. But it won't become lymphedema. It can never travel from one side to the other. Our body protects us from that.
Ms. Morgan-Hazelwood: What you're looking for is some initials after a name. You're looking for what we call a CLT, which is “certified lymphedema therapist”. If they are a CLT, you know they graduated from a lymphedema school and they have at least 135 hours of education into lymphedema. The other credential that's very important is LANA.
That means they have sat for a registration examination to become certified, they have gone that extra mile. Years ago you could take a course for one day and call yourself a lymphedema therapist. Now we've gotten much more educated, and that's why LANA was formed. So we actually know you're getting somebody who has been to an accredited school, has at least 135 hours of education and has been able to sit for the national exam.
Mr. Levin: The feel of the compression may be very different than the actual compression being delivered. This is another great example of where the LympheDIVAs Fitter's Aid is a great tool to determine if you are getting the right amount of compression and that it graduates appropriately. However, if it’s so uncomfortable that you feel you wouldn't wear it, then it may help to try to find a sleeve that is providing the same class of compression but on the lower end.
Let's say your therapist requires a 20-30mmHg garment [meaning the pressure the garment provides the arm is measured at 20 to 30 millimeters (mm) of Mercury (Hg)]. That means the compression should start at your wrist somewhere between 20mmHg and 30mmHg and then provide less compression as you move up your arm. If it feels too tight, it may be starting closer to 30mmHg and the LympheDIVAs Fitter's Aid may provide an option that starts closer to 20mmHg. It's still in the compression class your therapist is looking for, but it may be more comfortable. You could start there and see if it manages the edema. If it does, then you've got a garment that is working and that you'll actually wear. If it doesn't, you may be able to use that as a stepping stone to a more compressive garment that starts in the middle or may help you acclimate to the original.
Mr. Levin: There really is no best garment for advanced lymphedema. Typically for advanced stage lymphedema, the best possible option is multiple-layer wrapping using short-stretch bandages. This provides the most effective treatment to help reduce swelling, but it is definitely the bulkiest option. If you're looking purely at compression garments and not using wrapping, then it's really about finding a sleeve that keeps your edema from getting worse, that you will actually wear, and that you can afford. The brands and styles aren't as important as those three factors.
Ms. Morgan-Hazelwood: You can find many sources that educate you on the risks and precautions of lymphedema. National Lymphedema Network is an excellent organization. Most of them discuss ways to prevent getting cellulitis. The 4 major things that can cause lymphedema are:
- The number of axillary lymph nodes removed during surgery
- Radiation, mostly to the axillary node region
It appears that you had an axillary lymph node dissection, which makes you at risk for lymphedema. But I believe you probably would have developed lymphedema no matter what you did. Research has found some individuals are more prone to getting lymphedema. Research is being done to see if there’s a genetic link that makes certain people more prone to getting lymphedema.
Ms. Morgan-Hazelwood: Currently, there is no medication to help or prevent lymphedema. This past year there were a series of clinical trials with the drug ubenimex by Eiger BioPharmaceuticals. They stopped the trials after the second phase because they were not getting the results they were hoping for. We are hoping there will be additional research and pharmaceutical companies in the future will pursue this field.
Ms. Morgan-Hazelwood: Congratulations on your lymph node transplant surgery. Both surgeries have proved that they help in moving lymph fluid, reducing the sensation of heaviness and pain in the extremity, and in decreasing the risk of cellulitis. But they do not totally cure lymphedema. There are many wonderful studies discussing the pros and cons of the surgery but make sure they are good studies.
Ms. Morgan-Hazelwood: You need to make sure that your physical or occupational therapist is a certified lymphedema specialist, a CLT. The therapist should also have a LANA certification. This insures that the therapist has successfully completed 135 hours of lymphedema training from a certified school and has passed the national certification examination. You can go to the Lymphology Association of North American website and find a therapist in your area.
Ms. Morgan-Hazelwood: If you have lymphedema and you need to wear a compression garment, then you should wear it daily to give you the best control of your lymphedema. If you need to go without a garment for a special occasion, make sure you wear your garments the day before and after the event and use your nighttime garment or bandages that evening.