Maggie McKay (Host): You may have heard of lymphoma, but if you've never heard of lymphedema, you're not alone. Today, our guests, Radiation Oncologist, Dr. Anne McCall, Lymphedema Therapists, Anna Kopacz, and Beth Leonard, will shed some light on what it is, the causes, the treatments, and more.

Welcome to Silver Cross Hospital's IMatter Health podcast, where medical experts bring you the latest information on health topics that matter most to you and your family. I'm your host, Maggie McKay. Thank you all for being here. Let's start with you, Beth. What is lymphedema and what causes it?

Beth Leonard: So lymphedema is a collection of protein rich fluid. It's a chronic swelling that occurs in the body and it can occur anywhere. It can occur in arms, legs, trunk, abdomen, even sometimes in the face and neck. And it happens for primary lymphedema, that occurs when usually someone's born with a problem with their lymphatic system. And so the swelling can develop when they're younger, or it can develop sometime later in life.

Then there's secondary lymphedema and that can usually is caused mostly people know from cancer treatment and that can occur when there's damage to lymphatic system. So lymph nodes that are removed or that are damaged due to radiation.

Host: And Dr. McCall, what are the implications of surgery and radiation?

Anne McCall, MD: So anytime there's either a disruption or scarring of that lymphatic system, the fluid can back up, not travel through the lymphatic system. In breast surgery especially, we've noticed that there's a decrease in lymphedema because we tailor what we do and how we do it. There's a common term in breast treatment now called de escalation. So we know that removing fewer lymph nodes or not giving radiation to a specific part of the body, decreases the overall risk of lymphedema for that patient.

Host: And Dr. McCall, how do you all work together with the breast team?

Anne McCall, MD: To us, the lymphedema team is really at our right hand. In fact, our patients are seen by the lymphedema clinic right after they have their surgery, really before they start any other treatment. And that has helped tremendously because they gain their mobility, they understand the risks of lymphedema, and they're already starting preventative measures before they even come to us.

So we work very closely.

Host: Anna, is it only seen in cancer patients, lymphedema? Who else can suffer from it?

Anna Kopacz: So, anyone can get lymphedema. The vast majority of the patients we see, especially the breast, are cancer related patients, but lymphedema can occur in anyone. As Beth said, primary or secondary lymphedema, primary can start at birth, secondary lymphedema is caused mostly by cancer, but it could also occur with patients who have venous insufficiency issues on their legs, any kind of injury to the legs, any kind of injury to head and neck as well. But most of what we see is cancer related and it can happen to young and old, men and women, respectively.

Host: And Beth, what are some common treatments for lymphedema?

Beth Leonard: So the gold standard of treatment for lymphedema is what we call complete decongestive therapy. And what that means is it's a combination of manual lymphatic drainage massage. So it's like a massage that we do to the whatever body part's involved. And then we end up, not for everyone, but many times do compression.

So it's compression bandages. It's a series of bandages and foam that we place on a, on a leg or an arm to help reduce the swelling. And then the whole goal of that is to get the, whatever body part, get that swelling down. And then we get the patient measured for a compression garment that they end up wearing, basically for the rest of their lives to help keep that swelling down.

Host: Wow, for just like on the limb or wherever it's affected?

Beth Leonard: That leg or arm, sometimes we have people who have head and neck cancer. They end up having a compression garment that is put on their head or their neck to help keep the swelling down as well.

Host: And they have to wear it 24/7?

Beth Leonard: Typically, so if someone has an arm or a leg swelling, they're going to be wearing it during the day. They don't want to be wearing at nighttime. Well, there are different types of garments that you can wear for nighttime, depending on how bad the swelling is. If someone has significant swelling, then we recommend they get a nighttime garment as well.

But if it's not as bad, they can just wear it during the day. For someone who has head and neck swelling, typically they wear it more at nighttime, because that's when they're laying down, when the swelling starts to accumulate more.

Host: Okay. Anna, how do you approach treating lymphedema from a physical therapy standpoint? I imagine each patient is different.

Anna Kopacz: Right. So it's case to case basis. No two patients are the same. Here at Shirley Ryan, we have the patients come in usually with a script from the doctor. Any doctor can issue a script as long as it has a lymphedema diagnosis. They get on the schedule, they come in for an evaluation. Our therapists evaluate each patient.

We take limb volumes and measurements depending on what it is that we're treating. We do a full evaluation. We take history. We use technology called Lymphotec where we measure limb volumes using a iPad type of device that scans the limb, whether it's the arm or the leg, and it gives us circumferential measurements, that are a little bit more precise than using an old fashioned tape measure.

And then we go over exercises with patients that they can do. And we explain to them the course of treatment, what it's going to consist of. Like Beth had mentioned, manual lymphatic drainage, is the massage that we use. It's a very gentle massage. It's not to be confused with a deep tissue, because the lymphatic system is located right underneath the skin, two to three centimeters deep.

It is a very light type of massage, almost like skin stretching. We do also incorporate range of motion exercises if we can. And then if appropriate, patients are bandaged using short stretch bandaging, that looks a lot like ACE bandaging, except it is a little different, and that can, you know, vary depending on the limb that we're treating, whether it's the arm or the leg.

 Typically, each session is 45 minutes, up to an hour and a half, depending on the body part that we are treating. And we typically will see patients two to three times a week, if needed more or less, depending on the severity of the treatment. We also do work very closely with University of Chicago Cancer Center, where we see patients throughout chemo.

We do see patients throughout radiation as well, just to make sure that we are keeping an eye on the limb, keeping an eye on their skin, looking for any skin changes, any changes in swelling, and then, of course, reporting back to the doctor and to the team, as necessary. And so we do work as a team every day, making sure that we're all on the same page.

We do, you know, conference with each other, making sure that the patient is getting the best absolute treatment and the course of treatment is all on track.

Host: That's got to be really reassuring to patients that you cover so much and there's so many people looking out for them and that you're all connected. Dr. McCall, what is the clinical course of lymphedema recovery time like?

Anne McCall, MD: One thing I want to say before that, is that the lymphedema physical therapists have special training in lymphedema. So when we send patients to Shirley Ryan, we specifically send them to the Lymphedema Clinic. This is very skilled, sub-specialized treatment that they have spent an enormous amount of time getting certification for, and I think that we're really lucky to have them with us.

Because, that's the answer to your question, this could be a, like a waxing and waning long time thing. So some women are fine, and then they're out shoveling the snow, and they come in to see me, and they've got some pulling in their arm, or they've noticed a little bit of swelling. And then we just send them right back to their team at Shirley Ryan, and they take care of them, and they re-instruct them, and they get the swelling under control, and the patient goes back to their life.

So, sometimes the patient will see Shirley Ryan once just for education and they're fine. Sometimes they do need intensive treatment and they'll do that for the course of their cancer care. Sometimes they see them, they're fine for four to six months or a year or two years and they have to go back for what we call a refresher course.

So this relationship is really not one and done. It's an ongoing relationship as part of their comprehensive care, not only as a patient, but as a survivor.

Host: And Beth, can someone get back to normal, everyday activities eventually?

Beth Leonard: Absolutely. Even during treatment, sometimes we have some people that go to work even with their bandages. We bandage them up and they go to work with bandages on, but absolutely they can go back to doing their everyday treatments. There are some things that we do suggest that they don't do, in terms of trying to aggravate their lymphedema.

So someone who might be doing a lot of vacuuming at home if they have arm lymphedema, we try to have them use the other hand so they don't aggravate the lymphedema. But for the most part, as long as they're wearing their compression garments, we tell them, yes, they can do most things.

Host: And Anna, I know we've been talking about the Shirley Ryan Ability Lab at Silver Cross. We've touched on a lot of things it does. Is there anything else that we didn't cover about what it offers to patients? Well, how is it different than maybe somewhere else?

Anna Kopacz: So we do have four therapists that we have here. We have someone here five days a week. So we are open Monday through Friday. We are located in Pavilion A at Silver Cross Hospital, right on the first floor next to the pharmacy. We do offer other types of therapy. Sometimes we do work with the different teams that we have here, whereas, ortho and or speech therapy, if we have a patient that requires other kinds of therapies along with the lymphedema therapy that they're also receiving. I always say, it's not it's the best kind of therapy that you can get because it's massage, it's bandaging, it's education.

And I think a lot of patients, truly understand the value of it. And like Dr. McCall said, it's not a one and done. We do have patients that come back twice a year, every other year because it's something that they will have to live with. Lymphedema is not, it's a chronic condition.

It's not something that once you treat it, it just goes away. It doesn't work like that. So once you have it, you have it for life, but it is treatable. It is manageable, and that's what we, you know, try to educate our patients right from the get go. We provide a lot of education, a lot of resources, a lot of support.

 We teach families how to bandage if that is available to them, and just try to kind of let them know that they're going to be in good hands and they'll get the best possible care that they deserve.

Host: Well, that's all so encouraging. I just would like to repeat what Dr. McCall said earlier that I think they're so lucky to have you therapists who are so trained specifically for those patients and they're lucky to have you and Dr. McCall. So thank you all for joining us today. This has been so educational. I have never even heard of lymphedema, I have to say, I've heard of lymphoma, but so now we know a lot more and we really appreciate you being here.

Again, that's Dr. Anne McCall, Anna Kopacz, and Beth Leonard. If you'd like to find out more, please visit silvercross.org/lymphedema. If you found this podcast helpful, please share it on your social channels and check out our entire podcast library for topics of interest to you. I'm Maggie McKay.

Thank you for listening to this edition of Silver Cross Hospital's IMatter Health podcast. To learn more, again, silvercross.org.