Lymphedema and Relief for Patients

Video Transcription

Hi. I'm Candace Alexander. I'm a physical therapist for CHI Saint Joseph Health. I appreciate you joining us for today's Let's Break to Educate. Today, we're talking about lymphedema.

If you're not familiar with lymphedema or maybe have never even heard the word, that's not uncommon. Lymphedema is a condition where people develop swelling because they have damaged lymphatics. That lymphatic damage leads to high protein sitting in the tissue and, over time, that results in a physically swollen limb that can be painful and heavy, lead to infections, create problems with tissue thickening, and ultimately can misshapen the body part down the road.

This can happen to an arm or leg, but it can also happen to the chest. It can happen to the groin; it can happen to the head or the neck. The hard part behind lymphedema is we don't have a cure right now. At this point, lymphedema is best treated by early recognition, and by early recognition, seeing someone who can help you contain and control it. 

At the point you're dealing with a misshapen body part, treatment would help make life a little easier, help you provide some comfort and help you function; however, getting a size of a limb down once it's massively swollen can be a challenge.

Who develops lymphedema?

The first stage or the first group that develops lymphedema is primary lymphedema. Those are people who are born with lymphatics that are dysfunctional or damaged. Typically, this presents very early in life, and it can present later in life but typically without trauma. A lymphedema therapist can help you determine if your type of lymphedema is primary in origin. But in the United States, the most common level of swelling is secondary. And that is a type of trauma or damage done to the lymphatics after birth.

In the United States, breast cancer is the most common cause of lymphedema, but cancer-related treatments are also very high after breast cancer. This can be breast cancer surgery; this can be chemo, radiation, or any combination of those that has a chance of causing lymphedema in someone. 

When they do surgery and take lymph nodes or damage an area, that area is considered the at-risk area. And it's at risk from surgery on, from chemo on, from radiation on.

There's another form of lymphedema, which I will go ahead and discuss. We are seeing, as lymphedema therapists, an increased rate of obesity, and that increased level of obesity leads to something called obesity-related lymphedema. And over time, the longer someone struggles with weight, the more that weight strains the lymphatic system. We're seeing people come into clinics now who are having more swelling in a body part, more swelling in the legs, specifically just related to weight alone.

Lymphedema Symptoms

So if you're worried about swelling issues, what are you looking for?

Well, the first level of swelling is actually not seeing; it's felt. Patients will come into a clinic and typically it's the at-risk body part, so again, the person who's had some form of cancer and has had nodes taken out or had damage to that area. But most people report sensations like heaviness, fatigue, discomfort, tingling, aching, just general symptoms, but specific to just the part that's irritated. So if nodes are taken out of the armpit, the arm or the chest might be the problem. 

Once that goes on for a certain amount of time, physical swelling can be seen. Lymphedema. The danger is that swelling can happen at such a slow rate you don't notice it as easily. It's like watching your hair grow.

So what you're looking for? If you're concerned, or if you're at risk and you're wanting to monitor for lymphedema, you're looking for changes to things like contours. When I look at my arm and I'm looking at it, I can see the tendons in my hand. I can see the knuckles. I see that my wrist has different contours, and my elbow has contours. My ankles have the same thing. When someone's dealing with early lymphedema, those contours will kind of bulge out a little bit. They will be more rounded. They won't be as sharp. And so when you're comparing one side to the other, a subtle lymphedema will have minor changes like that.

Another thing to look for if you're worried about lymphedema is looking at the veins in the body part. The arms are easy. The legs are a little easy. We typically have blue veins in those areas. When we look at them, they might not be the same one side to the other, but we should see them to the same intensity. We should see the same quality of veins. When someone's dealing with lymphedema, that swelling can actually mask that color in the arm from the veins or in the leg from the veins. By doing that, you can actually get an idea of if someone's still developing high-protein fluid because you start noticing changes.

A lot of patients dealing with early swelling actually might not even see those things. A lot of patients will come in saying, "I'm having problems with my shirt. My shirt feels tight on this arm." And when we do a little bit of digging, we'll start seeing those shape changes and those size changes. And that's the time to get it addressed.

Treatment for Lymphedema

So if you know what to look for and you know what's going on, what do you do about it? How do you handle it?

The most important thing I can recommend for anyone dealing with any swelling that is staying and not going away or someone who's been at risk because they've actually had surgery and lymphatics have been impaired, is just see a certified lymphedema therapist. These are people trained in lymphedema care. They actually learned hands-on techniques that include massage and compression fitting and applying compression bandages to help reduce the size of the limb down. These people know how to train with exercise and how to do long-term training so that a person can learn to take care of themselves.

Certified lymphedema therapists can be found, but many of them may require an order from a physician. So I do encourage you if you find a lymphedema therapist, call that clinic and see what they need to start care. If a physician's order or referral is needed, it might be beneficial to touch base with whatever physician you have the most contact with. That may be a primary care physician or it may be a specialist.

In the case of lymphedema, most physicians that understand lymphedema are the ones who see lymphedema more often. A lot of this is your oncology team: your radiation oncologist; your medical oncologist; your surgeon. Many of these oncology team members can recognize lymphedema a little earlier, but primary care physicians and physicians in other areas we don't see as often, may not be familiar with it. If that's the case, let the lymphedema therapist you're seeing know. We would love to provide education, not only to the public and methods like what we're doing right now, but also to physicians so that they can be better educated on lymphedema and recognize it early.

The best way to treat lymphedema is to catch it earlier in life and earlier in its onset so that it can stay a smaller body part, easier to manage. By the time you start getting to a body part that's quite large, it's much more challenging. The more people we can make aware of this, the better.

Frequently Asked Questions About Lymphedema

We're going to open up to questions. In terms of the first question I was asked, "Does my insurance cover treatment?"

Unfortunately in the medical world, everything is, it depends, and for this, it also depends. Your insurance will most likely cover the clinical care for lymphedema. That is the therapist working with you with their hands, teaching you how to compression bandage or put on compression garments, working with exercise and educating you on how to care for yourself. Equipment, though, may not be covered by insurance. Most equipment is usually in the form of compression bandages, which we use to actually shrink the size of the body part we're working on. And then after that, compression garments, and those garments are what helps a person with long-term management so they don't have to undergo the intensive day-to-day care using bandages and the clinical physical therapy, occupational therapy, or whoever they're seeing, their clinical care needs.

Ultimately I do highly encourage that if you're dealing with treatment, you speak with a lymphedema therapist, because even if you're concerned about the expense behind compression and bandages or garments, a lymphedema therapist most likely has tools, local community access, charities, and things that can help you with the financial expense. So don't let that concern on finances keep you from seeking care. 

The other question I was asked was, "My doctor is unfamiliar with lymphedema. Who can I speak to that can help guide me?"

Well, again, I want to reiterate the number one resource to go to is a certified lymphedema therapist, a CLT. These can be physicians and massage therapists, occupational therapists, physical therapists, any number, but a CLT is trained in this treatment. But maybe you're not ready for that. Maybe you just have some simple questions or you just want to see some more information. I do not recommend going online and doing a general lymphedema search. This condition for people who haven't been able to treat it for 20, 30 years can result in a very large limb or a large body part, and that can lead to wounds and other problems.

So if you're not dealing with an aggressive swelling at this point, and you just want more information, it can be very scary to go online and look at blogs and things. I highly encourage reputable web sources, clinics, and things along those lines. 

In combination with that, there are two web resources I send my patients to. The first is the National Lymphedema Network, and the second is the Lymphology Association of North America. These are great places to go and get good information. They'll actually provide education and information on how to get moving forward with this condition and help you find out if  you are dealing with this condition. The other thing that I love about these websites is they do provide ways for you to search for people who can treat you in the area that you live in. So that can be a really good resource to help find care for yourself and help find a way to follow up with someone.

Question number three is, "I had breast cancer surgery and my doctor told me he took nodes from my armpit. What can I do to avoid getting lymphedema?

Unfortunately, at this time, we can't guarantee by following some simple rules that you will not develop lymphedema. This is a condition where there seems to be a genetic component, but we don't know all the information yet. So I have people, maybe two people who undergo the same surgery with very similar comorbidities or medical histories and very similar body types. One can have two nodes taken out and one can have 20. That person with 20 nodes in theory, you would think would most likely develop lymphedema. They may be fine and the person with two nodes develops lymphedema. So I want to make it clear that we can't guarantee, even if you do everything 100% right toward preventing it, that you will successfully prevent it.

However, there are some measures you can take to reduce the chance of triggering it. The first thing is follow up with your medical team. Specifically, if you've had nodes taken out from cancer, your oncology team, - again, that medical oncology physician, radiation oncologist, the surgeon -those individuals see lymphedema at a higher rate than many other medical team members. And so being able to follow up with your regular appointments will get another person helping to screen for this condition. Again, see your primary physician. Even if your primary physician is not familiar with lymphedema, primary physicians aren't trained in swelling, they will be able to help recognize when things are progressing and they can use resources to help find lymphedema therapists.

Another thing that you want to do is you want to reduce trauma to the body part. A lot of people who go through breast cancer surgeries, that have mastectomies or lumpectomies and undergo node removal, will often receive information about reducing blood pressure cuff taking and needle sticks to the body part, especially that at-risk body part. So if the left arm has had that surgery or the left chest has had that surgery, then that left side is the at-risk body part. That is to reduce the level of trauma. One blood pressure cuff or one needle stick, most likely will not trigger a lymphedema, but repetitive trauma over time can challenge the lymphatics to the point where it can actually push into a lymphatic issue.

So if you're getting treatment and you're getting a lot of blood pressure cuff measurements taken, you're getting a lot of needle sticks, maybe you have a pet that has really sharp claws and loves to scratch, maybe you work in a garden and you work with sharp gardening tools and you work with thorns, finding ways to protect, either moving to the other side for things that are medical and you need to have taken any way, or finding gloves or light clothing that can cover and protect the limb is a good way to start keeping that limb from being a higher risk for lymphedema.

Another thing we talked about already was weight. And this is not a lecture on weight loss or weight gain. We all struggle with weight issues. But ultimately, if you're a person who's dealing with an at-risk body part, just knowing that if you gain weight you want to monitor that body part more closely because it does increase your risk of lymphedema. Whereas if you lose weight, you can actually reduce the risk of lymphedema.

Another thing to watch out for is compression restriction to the body part. So if you have a tendency to wear really tight clothing, really tight undergarments, it may be worthwhile, especially if you're seeing some early symptoms, try changing those things to more comfortable, less restrictive clothing.

The last question that I have here is, "I have swelling. Do I go ahead and purchase a compression sleeve?”

Again, in the medical world everything depends. So for an early stage swelling where it's mostly felt but not seen, a compression garment can be very helpful for reversing that stage, making it so that ultimately the person doesn't swell as easily as often. And in some cases can actually reverse a person out of a lymphatic stage even though they're still at risk. The downside behind that is that if you don't know what type of compression you need, or if you don't know how to fit it appropriately, you can do more harm than good by getting a compression sleeve that's not fitting or getting a compression that's not covering what needs to be covered.

So this is again where your lymphedema therapists come into play. If you're actively swelling, I strongly encourage seeing a lymphedema therapist or someone who specializes in compression garments. That may be a medical supply company along those lines or maybe a therapist with experience in this line of work. But ultimately seeing someone who can help you measure appropriately, especially when you're swollen. If you're swollen to a certain extent, you need to reduce because a compression garment will not make you smaller; it'll just help keep you small or keep you at the same level. So if you're swollen, you won't go down until you reduce that body part and then put a garment on top of it.

So ultimately I do encourage seeing a lymphedema therapist, even if it's for one or two appointments. It's just to help you organize what you need, because it's truly beneficial to have a person who knows you, who you know, that can help monitor your lymphedema. Again, this is a lifelong condition and it can be very disheartening and very challenging to live with at that extreme level, so the earlier we make this aware, the earlier we get adjusted to treatment, the better the outcomes are.

That is it for all of the questions that I have today. I hope you all found this very informative and educational. If you have questions, you're welcome to touch base with me. Again, I'm Candace. I'm one of the physical therapists with CHI Saint Joseph Health. You can reach us at 859.967.5737 or you can go online at www.CHISaintJosephHealth.org. Thank you again for joining us on Let's Break to Educate. Have a good day, and everyone stay safe.