Managing lymphedema during the coronavirus outbreak

Lymphedema is a common side effect of breast cancer treatment that can cause pain, leave you more vulnerable to infection, and interfere with daily activities. Not treating lymphedema can lead to challenging side effects, but treatment often involves one-on-one physical therapy, one of the many services that has been stopped or changed to prevent the spread of the coronavirus.

Living Beyond Breast Cancer CEO Jean Sachs, MSS, MLSP, spoke with Crystal Champion, PT, DPT, CLT-ALM, Cert. DN, a certified lymphedema therapist. Dr. Champion discusses how lymphedema care has been affected by the outbreak, what you can do now if you have swelling, and what precautions therapists are taking to protect you for in-person appointments. Watch, listen, or read the transcript below.

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Crystal Champion, PT, DPT, CLT-ALM, Cert. DN

Dr. Champion is a physical therapist, a certified lymphedema therapist, and owner of Eminence Physical Therapy, LLC. She has a special interest in oncology rehabilitation and was instrumental in developing the oncology rehabilitation program and the outpatient lymphedema treatment program for a major hospital system in Atlanta. Read more.

 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer, Living Beyond Breast Cancer

Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission everyday by speaking with newly diagnosed women about their needs and gaps in support. Read more.

 

Jean Sachs (00:01):

Good afternoon, everybody. I hope you're well and safe and finding ways to have some fun during this very challenging time. I'm Jean Sachs, the CEO of Living Beyond Breast Cancer. For the last 7 weeks we have been working hard to address issues that we know are really important to the breast cancer community during the COVID-19 pandemic.

Today we're going to address the issue of lymphedema and I'm very pleased that we have Dr. Crystal Champion who is a physical therapist, a certified lymphedema therapist practicing in suburban Atlanta. Welcome, Dr. Champion.

Crystal Champion (00:42):

Thank you for having me.

Jean Sachs (00:43):

It's great to have you. I know you hold a very unique perspective both because of your professional background but then also because you yourself have been diagnosed with breast cancer. Feel free to add in your personal experience as well.

Before we get into the meat of it I know you're in Atlanta. We're here in Philadelphia, so we're in really different stages of the shutdown; you're much more open than we are. How are things going in Atlanta?

Crystal Champion (01:11):

Pretty well. Our state has started to reopen. I think that's posed some challenges, and people are thinking of ways to stay as safe as possible right now with the COVID-19 pandemic. But certain businesses are definitely open here, I'm in the Atlanta area.

Jean Sachs (01:27):

Yeah. We're watching you and we'll see what happens here.

Let's start with the question that we ask every healthcare professional that we talk to. Everybody's really worried about being immune compromise right now. If you have lymphedema, are you at any higher risk of being immune compromised?

Crystal Champion (01:47):

I would say yes. And that's because the lymphatic system is a part of your immune system and your lymphatic system is responsible for circulating white blood cells through the body, which are responsible for helping you to fight infection. Especially for women that have breast cancer and they have lymphedema, having lymphedema means that there's an impairment in the lymphatic system. That makes it harder to fight off infections if you were to get an infection. Definitely the symptoms or the severity of contracting COVID-19 could have a worse impact on patients with breast cancer-related lymphedema.

Jean Sachs (02:29):

That's really important to know. Thank you for clarifying that. I know in the regular world, the normal world, you're treating a lot of patients with breast cancer, so what guidance are you giving patients today who have lymphedema and need treatment?

Crystal Champion (02:46):

Well, right now, being that we are in the middle of the COVID-19 pandemic, I'm really urging clients to try to utilize telemedicine services, especially for those that are immunocompromised because of the pandemic. There are a lot of lymphedema clinics that have closed down or they're operating with limited hours or they're only offering telemedicine services at this time. I highly recommend that if you're seeking treatment or if you needing any type of follow up for lymphedema, definitely utilize telemedicine services for those practitioners in your local area that are offering that service to you.

Jean Sachs (03:24):

Tell us how that works. I know I've been to physical therapy quite a bit in my life and it's a very tactile experience. I mean you, you touch your patients and you probably reposition them and make sure they're doing the exercises properly. What does it look like when it's over a video screen or a phone screen or an iPad?

Crystal Champion (03:43):

It's very important that the therapist still knows the patient's full medical history. That's just as important via telemedicine as it is in an in-person visit. Even though we can't put our hands on you to physically assess your swelling and how much scar tissue you have or how much muscle tightness you have using the video platform, we can still get a visual idea of what your swelling looks like, what your range of motion in your arm may look like, an idea of what your function is. We can also do basic strength screenings by assessing your ability to lift or pick up certain objects or things that are around your home that are within reason.

Patients can be guided to take just very simple measurements of their arm to give the therapist an idea of how much they're swollen. That can be as simple as taking a tape measure and measuring around the palm of the hand, around the wrist, around the middle of the forearm, and then again around the upper part of the bicep area. Having patients track those measurements weekly can give your therapist a good idea if you're managing your lymphedema symptoms or if your symptoms are worsening and warrant a visit to the clinic at that point.

Jean Sachs (05:02):

What would you consider an urgent situation where you would actually say that you have to come in and you need to be treated in person.

Crystal Champion (05:12):

An urgent situation to me is if there's a sudden increase in swelling that you're not able to manage although you're under the guidance of a therapist and they're recommending certain things you do at home. If you feel like you're not able to manage at home, if you feel like you develop pain that is definitely impacting your level of function or your ability to use the arm, those are definitely symptoms that warrant trying to get an in-person appointment if you possibly can.

Jean Sachs (05:41):

Are you seeing new patients as well as recurring patients during this time?

Crystal Champion (05:49):

Right now via the telemedicine platform, patients that have already established treatment with me they are more appropriate for the telehealth platform. If it's a new patient it can be difficult to initiate that contact and establish a rapport and get a good feel for the patient via telehealth. We can start telehealth and if [the client is] showing symptoms that maybe you should come into the clinic instead, then I'll make that recommendation.

Jean Sachs (06:22):

For those that get to come into the clinic, tell us what kind of special precautions you're taking to keep the space safe.

Crystal Champion (06:31):

Yes. Number one, there's no waiting in the lobby area. Patients are asked to wait in their cars until I call them in. They're not allowed to have a visitor with them unless it's someone that's helping them to be able to transfer and to help them walk or with their functional mobility. Clients are asked to wear a mask into the clinic. As the therapist myself, I also wear a mask the entire treatment.

I do temperature checks and I also do a line of questioning to screen for COVID-19 symptoms. I'm asking if they had a known exposure to someone with COVID-19 or have they recently had a positive test or are they having some of the symptoms of sore throat, fever, cough, shortness of breath, chills, those types of things.

I'm also visibly assessing the patient. If I feel that they don't look like they feel well, I will ask them to return home and reschedule that appointment, or as I said, try to do the telemedicine platform.

Jean Sachs (07:38):

It's reassuring with all the healthcare professionals we're talking to. Everyone's taking very careful measures and it is a more controlled environment than going to the grocery store and and other locations.

Many people that have lymphedema wear sleeves regularly or gauntlets to manage their swelling during this time where they might not be able to come in for regular visits. Are you asking your patients to do anything specific, either wear their garments more often or anything else?

Crystal Champion (08:08):

Yes, absolutely. Wearing compression garments is definitely an important piece of managing lymphedema. Those that have compression garments, they're definitely asked to wear those consistently as indicated by their therapist.

I've had some questions of patients asking, with COVID-19 and the constant need to wash and sanitize your hands, what if I have on a glove or a gauntlet for my swelling? Being that I maybe just have one glove that's the only one I have to wear. How do I keep that clean and how do I keep down the risk of infection with that? My answer to that is definitely wear your glove or your gauntlet if it's needed to control swelling, but what you can also do to protect that hand is you can put over it a protective glove, like the latex-free, powder-free gloves, put that over your compression garment and that will at least give some protection of that glove or gauntlet that's on the hand. I would say keep several of those gloves with you so you can change them out until you can get to a place where you can get home and change your garments out or wash your hands appropriately.

Jean Sachs (09:23):

That's really good advice, thank you.

If you are new to lymphedema, maybe you recently had surgery or you had it years ago but you've never had [lymphedema] but suddenly you're noticing swelling, what are some of the important things that women need to be looking for so that they know they might need to consult with a physical therapist?

Crystal Champion (09:44):

Definitely. Some of the signs of lymphedema are visible swelling in the arm or hand. Sometimes you may notice that you're not able to see the veins on the back of your hand as much or if you make a fist, your knuckles are not as defined. Some people will complain of a heaviness or a full feeling in the affected arm. Some people will also have pain. Pain is something that can also be indicative, but it's not always present with lymphedema.

If you notice your rings or your watches or your bracelets or any sleeves on your clothing feeling tighter or not comfortable, that can also be a sign that you're developing lymphedema. At that point it's imperative that early diagnosis of lymphedema is very important in successful maintenance and management of it so that it doesn't progress to a worst stage of lymphedema. Definitely getting an order from a physician to have a referral to a lymphedema therapist is so important if you're starting to notice those early signs.

Jean Sachs (10:54):

That's an important question. If you need the referral, do you go back to your surgeon, your medical oncologist, your primary care [physician], or who would be the best person to talk to?

Crystal Champion (11:03):

Any doctor can write an order for a referral to a lymphedema therapist, but I would suggest if you're still under the care of your oncologist or your surgeon, definitely use them as the first line of defense to obtain that referral. A lot of times if you try to schedule with the lymphedema therapist or a clinic, they can help obtain that referral for you. There are definitely ways to get that done so it's not a stressful situation and such a long waiting period before you have a referral to see a lymphedema therapist.

Jean Sachs (11:37):

It is important for everyone to know that you need a referral for insurance for you to see a patient and to get coverage. And it is our understanding that many insurance companies now are waiving the copay for telemedicine visits. Check on that. that might be happening for a while.

If you are a new patient and your doctor doesn't give you as a particular physical therapist to see, what are the kinds of credentials people should be looking for, where should they be looking to find someone?

Crystal Champion (12:11):

You definitely want to look for therapists in your area. I know some people may live in remote areas where there's not a lymphedema therapist that's close that they can receive services from. The closest lymphedema therapist may be 3 hours away or 5 hours away, but the best thing you can do is look for the lymphedema therapist that is closest to you and also look for the credential “CLT” behind their name. That stands for certified lymphedema therapist.

A lymphedema therapist can be a physical therapist by trade, they can be an occupational therapist by trade, or also some massage therapists are also lymphedema certified. Looking for the initials CLT ensures that that therapist has been trained by an accredited school for lymphatic therapy and they definitely have a great understanding of the lymphatic system and how it works in the body because if the therapist does not have a good understanding of that, they can definitely cause harm to the patient by moving fluid in a way that would cause another part of the body to swell or there are things that can happen like the fluid can accumulate around the heart. Those are definitely things you want to be careful of.

The CLT designation for your therapist is definitely important and there are also other websites that you can look at to find a lymphedema therapist in your area such as the Lymphatic Association of North America. You can find certified therapist there. The LE&RN network for lymphedema, you can go to their website, and also the National Lymphedema Network. Those are some websites you can go to, to find a lymphedema therapist in your area, or simply call your insurance company to see who is in your network. A lot of times they can also help you find a provider in the area.

Jean Sachs (14:03):

Those are really helpful resources, and I just want to reiterate, it's not just a cosmetic issue. If your arm is swelling it can be a life threatening problem.

Can you tell people why it's so important to keep these symptoms under control?

Crystal Champion (14:20):

Yes. It's very important to keep the symptoms under control because if lymphedema is not treated, it can progress to later stages. And when it progresses, it becomes more difficult to treat, because swelling causes a hardening of the skin, which is known as fibrosis. When the skin is hard, it's harder for fluid to move out of the area and is harder for the swelling to reduce.

You're also at increased risk for skin infections with lymphedema that is not treated. The swelling stretches the skin that can introduce openings into the skin and wounds that can cause infection. It’s definitely important to seek treatment sooner versus later for lymphedema because early intervention is so important.

Jean Sachs (15:05):

We're also worried about getting COVID-19 and we certainly don't want to get it, but we have to also be taking care of all these other health issues that also can be really serious.

My final question was just about how things are opening up and you addressed that at the beginning, but it is reassuring to hear that, if it is an urgent situation, it sounds like people can see a physical therapist, so don't sit in your room and just wait. Even if it's not serious, you can still get help, but it will be over telemedicine.

Crystal Champion (15:41):

Exactly. Lymphedema [therapy] is a type of treatment that requires one-on-one attention and one-on-one treatment. If you go into a clinic, I'll use myself as an example. I see one patient at a time, so there's never an overlap of me treating one client and another. There's definitely just one-on-one contact and there's plenty of time left between clients to properly sanitize everything before bringing the next patient.

I also offer the ability to see patients in their homes. I make home visits because there are some people who need a clinic visit, but they still don't feel comfortable enough with COVID-19 to leave their home. In the event that someone requests that service from me, I still take all the precautionary measures in terms of, I make sure I sanitize and wash my hands in and out of the patient's home. I'm checking my temperature, I'm checking their temperatures, I'm trying to limit who's in the room with us during that treatment. We're still wearing mask. I'm still screening for COVID-19 symptoms. It's more of a unique situation, but it's definitely doable if there's someone in your area who offers home care for lymphedema, that's another option.

Jean Sachs (16:53):

Dr. Champion, one other question I have is: If someone is home, what are some of the things they can do to manage their lymphedema?

Crystal Champion (17:01):

Under the guidance of a therapist there are a lot of things that someone can do at home to manage their symptoms of lymphedema. For example, if you're sitting down and you're resting, try to elevate your arm to at least shoulder level or higher to help bring the swelling down. I also recommend watching your salt intake with your diet because a lot of sodium can cause fluid retention in the body.

I usually tell clients to make sure you watch your sodium intake and also to drink a lot of water. Water is great for also flushing toxins out of the lymphatic system. Some clients think that if you drink a lot of water, won’t that make my lymphedema worse? Actually, it won't. If you're dehydrated, that actually causes your body to hold onto fluid and that can make your lymphedema or your swelling worse.

Definitely make sure you're hydrated, make sure you're taking good care of your skin, so making sure your skin is nice and moisturized.

If you're outside and you'd like to exercise or do gardening, make sure you're wearing long sleeves or trying to wear insect repellent to protect against bug bites because those, depending on the severity of the bite, can lead to infection, which can also cause increased swelling. Definitely protect your skin.

Wear your compression garments as much as you're able to, or as instructed by your therapist. Some people have compression pumps that they use at home to manage swelling. Under the guidance of a therapist, if you have a compression pump and you've been using it before, that can also serve as a gateway to manage symptoms until you're able to go in person to see a lymphedema therapist to get the manual lymphatic drainage that that therapist would provide.

Jean Sachs (18:51):

Thank you so much, Dr. Champion, and thanks for being such an incredible advocate for the breast cancer community and [sharing] your expertise. I know there's a lot of things you do personally outside of your professional life to help women and families impacted by breast cancer. We are very grateful to you.

And I want to thank everybody for tuning in. Remember, Living Beyond Breast Cancer is continuing to update our content as quickly as possible as this situation continues to be really fluid. If you are in need of support, please remember that we have closed Facebook communities. All you have to do is log onto our website and we will add you. There's a lot of support and it really happens in real time.

As I always end, stay strong, stay safe, and stay well, and keep checking into LBBC. Thank you again.