Transcription:
Treatment Options for Lymphedema

Dr. Rania Habib (Host): Lymphedema is a rare condition that affects an estimated 100,000 patients every year. Secondary lymphedema is more common and is estimated to affect one in 1000 Americans each year. Welcome to Live Greater, a health and wellness podcast, brought to you by the University of Maryland Medical System. We put knowledge and care within reach so you have everything you need to live your life to the fullest.

I'm your host, Dr. Rania Habib. Today's guest is Christine Hudacek, a Physical Therapist and Certified Lymphedema Therapist at University of Maryland, St. Joseph Medical Center, and she is here to discuss treatment options for lymphedema. Welcome, Christine. We are so excited to have you.

Christine Hudacek, PT, CLT: Thank you so much for having me. It's great to be here.

Host: What exactly is lymphedema? Could you describe the definition and the stages of lymphedema?

Christine Hudacek, PT, CLT: So lymphedema is an abnormal accumulation of protein rich fluid that appears as swelling, generally you'll see in the arms, the legs, and the trunk, but it can honestly really occur in any area of the body. There are four different stages of lymphedema. The first stage is stage zero, which we call subclinical lymphedema, and this is when swelling is not really visible, but there's already starting to see some changes in the extracellular fluid that's starting to occur. Stage one is early onset where swelling is actually visible.

Patients may see some fluctuations in swelling. One day some of their rings might be too tight. Sometimes it goes away when they wake up in the morning, but by the end of the day, they notice they might have some swelling. Stage two is when we notice more of the chronic lymphedema, meaning even if you elevate your leg or your arm, that swelling is not changing much and not going away like it did in stage one.

 You may also start to notice in stage two, some progressive, what we call tissue fibrosis or some hardening of the tissue start to occur in the stage. By stage three, that's when we really start to see some pretty significant changes, more in the skin texture. You'll notice maybe, some skin folds if it gets bad enough. You will notice, it doesn't pit like it does maybe in the earlier stage one to stage two, or if you press in on your skin, you'll see those indentations. By stage three, there's enough of that hardened tissue fibrosis and maybe some more skin changes that you don't notice that it dimpling anymore. It's kind of more, much more firm at this point.

Host: Can you define for us the difference between primary and secondary lymphedema?

Christine Hudacek, PT, CLT: Primary lymphedema is generally known as lymphedema that is congenital in nature. Generally, it affects females. You'll normally start to see it with late teens into, say their twenties, it generally affects one leg in this case. Versus secondary lymphedema is generally an external cause for causing lymphedema, whether there was surgery, radiation, trauma, there's been some sort of injury to the lymphatic system and as the result, lymphedema has now developed.

Host: Okay, so what are some of the signs and symptoms of lymphedema that patients should look out for?

Christine Hudacek, PT, CLT: One of the first things patients usually tell me is that they notice like a heaviness of that area of the body, a fullness. It sometimes can be a little uncomfortable and sometimes at first it really is not. There might be some firmness in certain areas, but a lot of times it's more of that softer swelling that kind of fluctuates.

As I said, sometimes it's, they notice it more because they're, maybe their clothes, their upper, in the upper arm, like one sleeve is tighter than the other one, or their watch isn't fitting on the same band setting that they used to fit on. So that is generally the first signs that patients start to notice is, you know, things aren't quite the same. They can't see, their normal anatomical definitions in say, their arm or their legs or their ankles, the way they used to be able to see them.

Host: What are complications that could arise in patients who get lymphedema if they are not treated?

Christine Hudacek, PT, CLT: The biggest complication that we normally see is cellulitis infections. If you have fluids, protein-rich fluid sitting in an area of the body, what can happen is if bacteria gets in there and that fluid is not being removed and it's not being filtered through the lymph nodes that basically, it's a breeding ground, a very rich breeding ground for any bacteria to start to replicate, and that can lead to an infection.

And when patients start to get cellulitis infections, it actually causes their swelling to become worse. And once they get one, a lot of times these become more chronic for them and can honestly even lead to sepsis if it's not treated correctly.

Host: That is absolutely terrifying. What should a physician keep in mind or look out for when seeing a patient who is at risk for developing lymphedema?

Christine Hudacek, PT, CLT: I think the best thing that a physician can do is honestly to refer their patients to a Certified Lymphedema Therapist. They're the ones who have the background knowledge to assess them correctly, figure out what stage they're in, figure out what the next step in treatment should be for that patient. Cause it can really vary, you know, from patient to patient, depending on what stage they're in, where it's located, their ability to be able to come to treatment, all of that can play into, you know, what to do next with each patient. And so that to me is the key thing that a physician needs to know. If they have a relationship already with lymphedema therapist, I think that back and forth can be honestly the best marriage of both worlds, of the patient being treated to the best of their ability.

Host: And in your opinion, when should the physician be making that referral?

Christine Hudacek, PT, CLT: When we deal with cancer treatment, which is a lot of what we do see when it comes to secondary lymphedema, or a diagnosis, if you have that ability to be able to get a patient in, to be seen by a therapist, to even just get baseline measurements, is extremely important. Here at our hospital at St. Joe's, we, particularly with our breast cancer population, we have a prehab program where each patient that is diagnosed gets seen for measurement of their extracellular fluid and circumferential circumferential measurements to be able to kind of see where are they starting from, what is their baseline. And I think for as therapists, that gives us the best way to clinically make the best decisions for each patient. If we know where they're starting from before anything happens, before they start chemotherapy, before they go into surgery; it gives us the best way to be able to treat them going forward and honestly monitor them very closely going forward from there.

So if they have that ability and not every hospital does, I think getting in right at the start is the best thing they can do.

Host: Prevention is certainly key. What can that physician recommend for lymphedema prevention or to prevent it from worsening as they're making that referral?

Christine Hudacek, PT, CLT: I think as far as prevention, just getting them connected with a lymph Certified Lymphedema Therapist is the best option. They can kind of take it from there. They know how often, based on what kind of surgery the patient had, how many lymph nodes were removed, whether the patient had radiation; what's the best follow up protocol for that patient and what they should be doing, and how they should be closely monitored. I think, just being also aware and listening to the, what the patients are telling them. If a patient maybe didn't have that ability to go see somebody ahead of time, but they come back and they're complaining of fullness or tightness or you know, something doesn't feel right or they don't have range of motion the way they used to have range of motion, that a referral to be able to look at that and if they say, oh wow, yes, you have some swelling here. I need to get you to the specialist it could be a physical therapist or an occupational therapist, is the best way to do that.

Host: That's perfect. Now the question becomes how does the physician actually decide to whom to send the patient? Because you did mention it could be a physical therapist or occupational therapist. Can you walk us through that?

Christine Hudacek, PT, CLT: So each hospital system generally has one or the other that generally see their lymphedema patients. It's because of provider and billing, it's difficult to transition. You can't really share a patient as a physical therapist with another occupational therapist. You'll find, for instance, our University of Maryland Medical System has several hospitals. At St. Joe's, we are physical therapists. I know that Upper Chesapeake's Hospital has occupational therapists that see them. So the physician will probably be able to tell based on, they can reach out to the rehabilitation team, which is generally where we're located, and help guide them as to what referral they need to write. Does it need to be a lymphedema referral to physical therapy or does it need to be one to occupational therapy?

Host: Is there any difference in therapy for the patient if it's a physical therapist versus an occupational therapist?

Christine Hudacek, PT, CLT: No, cause they all should be trained by a Certified Lymphedema School that we went to that got this, we got our certification from. Generally I would say most schools out there and there are probably two main ones that I can think of, follow the same type of protocols when it comes to treatment. So, basically complete decongestive therapy. So CDT. So you're looking at manual lymphatic drainage, you're looking at compression bandaging, you're looking at exercise and skincare and self-care to help keep up the skin's integrity. And then from there we will go recommend maybe compression garments. Compression pumps, what types of garments. That's all decisions that we can help guide the patients through to be able to get these types of things for each patient.

Host: So it sounds like it's, you know, very complex, multimodal care based on the patient's needs.

Christine Hudacek, PT, CLT: Correct. Each patient is really individual and each patient is going to require something, maybe not a little different from every patient, but each patient needs to be looked at in an individual manner, not only for like where, how far are they? How far can they come? How often can they be here for treatment?

But also, right, somebody who's a stage zero to stage one patient is not going to need as much as a patient who's already in a stage two, potentially going into stage three need a lot more, not only care, but also they're going to need garments that can help keep their swelling down.

They're going to need a pump that they can use daily, whereas that they're going to need a nighttime garment as well, cause they are going to need compression pretty much all the time at that stage. Versus somebody in an earlier stage can get away with not needing maybe quite as much of that. Maybe they just need a day garment to help keep him in check cause overnight their swelling kind of comes down on its own.

Host: Okay. So that definitely makes sense that you know you're going to bump up treatment based on how bad their lymphedema is and which stage it correlates to. What happens during a lymphatic drainage session.

Christine Hudacek, PT, CLT: So the lymphatic drainage session, which we call the manual lymphatic drainage, is basically the therapist is using a specialized massage to take the congested area fluid and moving it to other areas of the body where there is all their healthy functioning lymph nodes and their lymphatic system is working correctly.

So it works in a reverse manner. You actually start by opening up those lymph nodes in those areas. Say if you're in a traffic jam, you car can't go anywhere until the car's in front of you move. It's kind of done in that manner.

You need to get fluid moving in those other areas first, before you start to tackle that area of congestion, which is sometimes the reverse. When people think about how it's done, they want to start down at the bottom of the hand and start to but the fluid can't go anywhere if it's already kind of congested there.

So it's kind of a little bit reverse thought process when it comes to how to do the massage correctly.

Host: Absolutely. When you describe it, it makes total sense, but it's definitely counterintuitive. What are the outcomes for people with lymphedema?

Christine Hudacek, PT, CLT: People with early stage lymphedema really can have great outcomes. Some of them are even able to potentially kind of reverse the lymphedema. One of the things we really try to with our program here is we have a machine that monitors really small changes in extracellular fluid. In that case, if it's somebody who's in stage zero, luckily, and I'm seeing them every couple months and I notice their measurement goes up, a lot of times in those early cases, we can actually put them in compression temporarily and kind of reverse that influx of fluid that's coming in to kind of hopefully get them back out and never have them actually go into a chronic stage of lymphedema. When you're talking more for stage two lymphedema to stage three, it's really important, at that point, what we want to do is just make sure that patients are managing it the best of their abilities, making sure they're getting in good compression garments, using a compression pump at home, night garments if necessary, so that we can lessen that chance of that patient getting those cellulitis infections, having skin breakdown, maybe blisters occurring.

Losing mobility or function because their legs or their things are getting too big that they're not able to walk around without maybe having to use a walker or things. So our goal for them is to really decrease that swelling that they have as small as we can possibly get them, and then get them to maintain that, to be able to allow them to have the greatest function possible.

Host: That's great. Really focused on improving their quality of life. This has been such an enlightening session Christine. Are there any key takeaways that you would like to leave for our listeners?

Christine Hudacek, PT, CLT: I think the key takeaway I would like to share with our listeners is that getting in as soon as you're getting diagnosed or finding a lymphedema therapist that you can connect with right at the outset of diagnosis, particularly when we talk about secondary lymphedema, we're generally talking about a cancer diagnosis is the best thing that you can do. Getting in, getting those baseline measurements, getting the education of maybe some things you can do to help prevent lymphedema from happening. I mean, we can't always do that unfortunately, but there are definitely things that to keep in mind, some common sense things that we share with patients that will help maybe lessen that lymphedema process from starting, and I think just that close monitoring that we're sometimes able to do, even if you don't have a specialized machine that's out there and you're using more your old school circumferential measurements, just that touching base with the therapist and then saying, you know, how are things going? How are you feeling? Are you having any swelling issues? It, allows that earliest intervention and the earlier you can catch somebody with some start of swelling, the best outcome you're going to give to that patient.

Host: That is fantastic news. We always want to use prevention as a way to make sure that we're really establishing that collaborative environment for multidisciplinary care. So I really appreciate that tidbit that you shared, and we want to make sure that our physicians out there who are seeing these patients are referring as early as possible to the lymphatic specialist.

Find more shows just like this one at umms.org/podcast and on YouTube. Thank you for listening to Live Greater, a Health and Wellness podcast, brought to you by the University of Maryland Medical System. We look forward to you joining us. Again. I'm your host, Dr. Rania Habib. Wishing you well.