Managing Life With Lymphedema

Dr. Marisa Weiss: Hello, everyone. I'm Dr. Marisa Weiss. Thank you all for joining us to talk about lymphedema. For those of you concerned about the risk of getting lymphedema or currently living with this challenging condition, we hope that today we can help you better understand your options for risk reduction and management so that you can live the best life possible.

In the Breastcancer.org online community, many people have shared that they feel alienated because of their lymphedema, and they feel frustrated or angry about having to deal with this side effect after going through so much already with a breast cancer diagnosis and treatment. We see you. We know how it affects your mood, relationships, self-esteem, physical capabilities, and productivity.

While the risk of getting lymphedema can remain long after treatment, there are ways to help reduce swelling, prevent complications, and make you more comfortable and function better as symptoms come and go or symptoms stay. And there are communities like the one at Breastcancer.org to help you manage this side effect and feel less alone.

Before we welcome our featured speakers, I want to thank the Center for Restorative Breast Surgery for their longtime support of Breastcancer.org, including making today's event possible.

We are honored to be joined by an excellent group of lymphedema experts. 

Dr. Shailesh Agarwal is an associate surgeon in the Division of Plastic Surgery at Brigham and Women's Hospital, as well as an associate professor at Harvard Medical School. His clinical expertise and research interests include breast reconstruction and lymphedema surgery, as well as other types of reconstruction surgery.

Dr. David Cabiling is a board certified plastic surgeon specializing in breast reconstruction and lymphedema surgery. He is a member of the team at the Center for Restorative Breast Surgery and leads their lymphedema Institute. Dr. Cabiling has published in numerous medical journals and textbooks and has been rated as a top performer in patient satisfaction among physicians in the nation.

Dr. Patrick Martone specializes in cancer rehabilitation medicine at multiple hospitals within the Northwell Health network. He's also an assistant professor at the Zucker School of Medicine at Hofstra Northwell. Dr. Martone's focus is on improving quality of life and function that have declined due to cancer and cancer treatments. He helps people with conditions that include lymphedema, neuropathy, fatigue, and much more.

Blanca Moreno has been a physical therapist for 15 years specializing in helping people with lymphedema and neurologic conditions. She is currently practicing at Cooperman Barnabas Medical Center. 

Thank you all so much for being here.

Before we get into our panel discussion, let's go over some key information about lymphedema. 

Your body has a complex plumbing system that handles the flow of fluids in your body to keep the fluids moving in circulation. Arteries bring fresh blood from the heart to your tissues, and the veins send the used blood back to the heart. But there's also another system of drainage pipes called lymphatics that return the fluid within your tissues back into circulation. Basically, the arteries are one way in, and the two ways out are the veins and the lymphatics. This is from your tissues back into circulation.

Lymph is a fluid that circulates through our lymphatic system, removing waste, bacteria, and other substances, including cells that can be trying to leave that area, from the body's tissues.

Lymph nodes are filters on the lymphatic channels. So when lymph nodes are removed, the lymphatic channels that run through them can get narrow or cut off. Like when part of the Interstate 95 collapses, there's a major traffic backup. That's how breast cancer treatment such as lymph node removal or radiation to the lymph nodes and breast surgeries can damage nearby lymphatic channels leading to fluid backup and buildup called lymphedema.

Some people use the term swelling, and that is commonly used, in fact. And while we'll be talking mostly about lymphedema in the arm or hand, people who've had treatment for breast cancer can also have lymphedema in the breast, in the chest area, armpit, trunk, or the back also.

Lymphedema is predictably unpredictable. You can get it, it can go away and never come back. Or you can do everything right, take all the preventative steps, and it can still occur even years later. More research still needs to be done to understand why some people get it and others don't.

Anything that might damage the lymphatic vessels in your tissues can interrupt lymph flow and increase the risk of developing lymphedema or having a flare-up of lymphedema that you already have. This includes lymph node removal – and the risk increases with the number of lymph nodes that have been removed. Surgical procedures, as I said, like mastectomy or lumpectomy, although the risk is greater with mastectomy. Multiple chest procedures can increase the risk. Radiation to lymph nodes can lead to lymphedema if scar tissue from the radiation presses against or narrows lymphatic vessels after surgery, after radiation.

If you have an injury to the skin or an infection, that can trigger lymphedema. Needles; like, any type of test that you get or intravenous solutions that you may receive can increase the risk if placed in the arm on the same side where the lymph nodes were removed from. And being overweight can contribute to some people getting lymphedema after surgery. Just the pressure of the extra fat can slow down or obstruct the flow of lymph fluid.

It's also important to know that Black and Hispanic women may have a higher risk of getting lymphedema when compared to white women. Research is being done on the reasons why and we hope to learn more about this in the future.

There are categories of lymphedema ranging in severity from stage zero to stage three, and this is totally different from stages that we use to describe the extent of cancer. So put that other thing aside. These are just stages to describe the extent of lymphedema.

Stage zero/one are often reversible. They might come and go, so it's important to see your doctor as soon as you notice signs and symptoms to increase the chance that it will go away. Plus, it's pretty common for the stage of lymphedema to vary over time for various reasons.

It's important to become knowledgeable and take steps to reduce your risk of lymphedema starting even before breast cancer surgery. Reducing the risk of lymphedema requires a daily commitment and a high level of awareness that you need to integrate into your everyday lifestyle. I mean, I went through breast cancer 13 years ago, and I had a lymph node dissection on my left side. And even today, I'm very mindful of taking care of my arm to reduce the risk of ever getting lymphedema.

And if you do develop lymphedema, there are ways to treat the triggers, reduce those triggers, minimize the risk of it getting worse or coming back, and to keep symptoms under control as much as possible. And we'll go into those details soon when we discuss all this with our great panel.

Here are some things you can talk about with your doctor about before you have surgery. 

Making lifestyle changes like limiting alcohol or stopping smoking can be helpful. Ask if lymph node biopsy is possible instead of an axillary lymph node dissection. Lymph node biopsy has pretty much replaced lymph node dissection because of this risk of lymphedema and other issues. But ask your doctor about limiting the extent of a lymph node removal. Because, again, the more lymph nodes that are removed, the higher the risk of disrupting the lymphatic drainage system.

And for example, if you have DCIS or noninvasive breast cancer, you usually should be able to avoid having any lymph nodes removed. But, the main priority for you and your doctor should always be effective treatment of the cancer. And in some cases, that may mean axillary lymph node dissection is required. If you could ask your doctor about meeting with a lymphedema specialist before surgery to learn about which arm stretches and exercises you can do before and after the procedure, that's helpful.

After your surgery, slight swelling in your arm may be difficult to notice. If your care team measures the volume or the circumference of your arms before surgery, they can track any changes in size over time to help detect the onset of lymphedema. And you can be  your own best advocate by learning about your risks. To get started, all the information I'm sharing today and much more is available at breastcancer.org/lymphedema.

Now, let's talk about reducing risk and minimizing flare-ups after surgery. After breast cancer surgery, you can ask to  meet with a physical therapist, if you haven't met with one already. They may talk to you about how to properly elevate the affected arm while recovering, and when it's safe to stretch your arm or do gentle exercises to restore full range of motion and get the limb flowing again, which can ease swelling and improve flexibility and function. Even years after breast cancer surgery, it can be a good idea to avoid any extra stress, strain or pressure in your hand, in your arm or your upper body.

It's very important to protect your skin with things like wearing gloves while you're cooking or cleaning or doing dishes, gardening or working around the house, as well as using sunscreen to avoid sunburn and bug spray to keep the bugs away.

When you take these extra steps to avoid cuts, bug bites, poison Ivy, overly aggressive manicures or sunburns, those are really important because that will lower your risk of having an infection which is a common trigger for lymphedema. Remember to keep your skin moisturized to prevent cracking, and use gentle soaps and lotions. You may want to switch to a cream hair remover for your underarms instead of shaving with a razor as one example. Avoid being in very hot conditions such as using heating pads on the affected area because the heat can cause more blood and extra lymph fluid to flow there.

Avoid wearing heavy bags or tight-fitting clothes or jewelry that can restrict the flow of lymph. You can talk to a lymphedema specialist about a safe exercise program that's right for you to get back in the groove of things to keep yourself strong, flexible with good range of motion.

And if you're overweight, talk to your doctor or nutritionist about a plan to help manage your weight. This is something to work on over time, of course, because managing your weight can lower your risk of developing lymphedema and can help reduce lymphedema if you already have it. If you spot any signs or symptoms of lymphedema or any signs of infection, let your care team know. It's especially important to call immediately with any signs of infection like new redness, tenderness, warmth, a fever, tenderness, as I said, in a particular area, discharge from the arm or a cut, which may or may not be related to an injury, bug bite, or a specific thing that you remember that happened. It can just happen on its own without something that you did that you remember.

Consider getting a medical alert bracelet that indicates that you don't want blood draws IV or blood pressures taken from the arm on the same side that the lymph nodes were removed from or treated. And if both hands and arms are affected, like let's say, you had bilateral mastectomies and all that, you can ask your doctor if it's possible to use another part of your body for blood draws or blood pressure or use the side that didn't have the lymph node surgery. You may have had prophylactic mastectomy on one side, treatment mastectomy on the other side, and then you could choose which side to use accordingly.

Based on the severity of your lymphedema, a plan that uses one or a combination of treatments may be recommended, things like compression garments, manual lymphatic drainage, special exercises, or even pumps may be used.

It's important to know that everyone's treatment plan should be tailored to their specific needs and provided by a lymphedema specialist. And for people with persistent significant lymphedema, there are a number of surgical options like lymph node transfer. We'll be talking much more about this with a panel in a few minutes.

Lymphedema experts caring for you could include doctors, nurses, physical therapists, occupational therapists, and massage therapists. It's important that the people you're working with are experts in lymphedema. To find qualified experts, you can ask your cancer center or search online directories provided by the National Lymphedema Network or the Lymphedema Association of North America.

It's always helpful to call your health insurance company to find out what is covered by your insurance, the number of visits covered, the types of treatments, the co-pays you might run up against so that there are no billing surprises. The cost for ongoing physical therapy sessions can add up. All these things can add up, so it's best to plan for it, especially if this is a chronic condition that requires an ongoing long-term treatment plan and strategy.

The good news about compression garments, which can be an expensive out-of-pocket cost, is that a Federal Act Expanded Medicare Coverage to cover these items, that will go into effect at the start of 2024. And hopefully, it will lead to other healthcare plans expanding their coverage too.

I wanted to share this powerful quote from a member of the Breastcancer.org community that speaks to the struggles of life with lymphedema: “Many days, I'm joyful, see good all around me and know how blessed I am. But then, there are those times that I am Alice going down that rabbit hole every single day, having to deal with lymphedema, massage, exercise, washing gloves and bandages, pain, on and on and, worst of all, loss of function, and my world shrinking. Raking leaves, forget about it. Pushing a shopping cart, it's getting tough. I'm trying to stay balanced in an ever-changing world.”

Finding yourself again after breast cancer can be daunting, especially when you're dealing with the physical side effects. These side effects can end up being a condition completely separate from breast cancer that you just have to live with. So let's talk about what more can be done to help you.

Now, it's my pleasure to introduce Dr. Shailesh Agarwal, Dr. David Cabiling, Dr. Patrick Martone, and Blanca Moreno. They are all dedicated to helping people with lymphedema, and we're thrilled to get their insights today. Dr. Cabiling, let's start with risk reduction. A lot of people in our audience today are asking, "What can be done before surgery to help reduce their risk of getting lymphedema?"

Dr. David Cabiling: Hello, everyone. It's a great pleasure to be here today to discuss this topic of lymphedema. As Dr. Weiss mentioned, I am a plastic and reconstructive microsurgeon at the Center for Restorative Breast Surgery here in New Orleans. My practice is dedicated solely to the surgical treatment and care of breast cancer patients.

And over the years taking care of this population of patients, I have been witness to the multitude of challenges and difficulties that lymphedema can bring. For a long time, despite being a disabling condition that affects many, many patients, lymphedema has really been an understudied sort of under-recognized, under-diagnosed and undertreated condition. However, it's exciting time to be a microsurgeon because in recent times, a number of people, particularly within plastic surgery, have done tremendous work in furthering our understanding of the disease as well as creating and refining some new surgical treatments for lymphedema, which I'm sure we'll talk about later here.

And to your question about prevention. So among the biggest risks for developing upper extremity lymphedema after breast cancer treatment are, as you mentioned, the extent of axillary lymph nodes removal at the time of surgery and radiation to the axilla.

Obviously, neither one of these patients can really modify, but equally important in the risk of developing lymphedema are obesity in a sedentary lifestyle. Obesity, is a well-known risk factor that increases one's risk of lymphedema, and it's one area that's very much within the hands of patients to be able to modify to help reduce their risk of developing the condition. This risk reduction goes both before and after surgery and really should be a goal, I think, for all patients at risk for developing lymphedema.

After surgery, as you, Dr. Weiss, mentioned, a number of these are a number of best practices to help reduce the risk of lymphedema for patients that are at risk of that. These are all really focused on not further damaging the at-risk lymphatic system of that arm.

So again, maintaining a healthy weight is important, avoiding injury to the lymphatics and, in particular, paying close attention to the skin health as our lymphatics that drain the arm are really just below that skin layer. So patients should have a good skincare regimen keeping their skin clean and well moisturized, paying close attention to all the small common injuries of life. Nicks and scrapes and insect bites as all these little injuries can sometimes further lead to additional damage to the lymphatic system and then increase your risk of ultimately developing lymphedema of that arm.

Dr. Weiss, you mentioned a number of other things such as care with shaving, avoiding aggressive nail care, generally not cutting too much of the cuticle, bug sprays, sunscreens, protective clothing such as gloves on day-to-day activities, all with the goal of really kind of protecting that upper extremity. Patients really should avoid real tight, constrictive clothing or jewelry on that arm, so they shouldn't be very tight.

And it's generally good practice to avoid having blood pressures, as you mentioned, on that arm if at all possible. That being said, usually, well-fitted compressive garments during activities that are more vigorous or when patients are on airplanes or sometimes in extreme temperatures are usually pretty good practices. But, overall, the goal is to protect the arm and its lymphatic channels under the skin from further injuries.

Preventing lymphedema during surgery was another question in there. I think that probably goes to one of the more new exciting developments in the surgical treatment of lymphedema. And maybe, we'll talk a little bit more about that later, but it's what's been termed sort of immediate lymphatic reconstruction. And so, this is a procedure performed for patients that are undergoing axillary lymph node removal that thus makes them at higher risk for developing lymphedema.

And the procedure is done by a microsurgeon, such as myself, iImmediately after the lymph node removal has been completed. What we do is we map the lymphatic system, identify the cut ends of the lymphatic channels under our microscope, as there are very small structures. They're identified in the armpit. And then, we repair the lymphatic system by reconnecting those lymphatics that have been cut during the lymph node removal and reconnecting them back into the circulatory system.

And that surgery has really been shown to be very promising, maybe potential risk for reducing lymphedema perhaps as much as tenfold. So there are some newer exciting things coming out in terms of preventing it along with the mainstays that have been helpful for patients for decades.

Dr. Marisa Weiss: Well, thank you so much for all that information. This is a dynamic area of medicine where we're learning more and more about how to manage it and to help people along the way to get back to a life that is full without discomfort and without limitations. 

Dr. Martone, ahead of breast cancer surgery, should patients be looking into physical or occupational therapy as an essential part of their post-surgical care?

Dr. Patrick Martone: That's a great question. And thank you so much for having me here. So absolutely, cancer rehabilitation and rehabilitation throughout cancer treatments is becoming more of a mainstay of everyone's treatment. And now, we actually have the idea of something called prehabilitation. So actually starting to do therapy before you even undergo any surgeries to really maximize your outcomes. So especially in the case of breast cancer surgery, especially patients who have some time, if maybe they're getting chemotherapy before their surgery, they can be doing certain exercises to help maximize their function, especially before breast surgery, to help stretch the chest wall, to help with your rotator cuff strengthening so that after that breast surgery, you have better shoulder and arm function. And then certainly after that surgery, sometimes, there can be post-surgical pain where rehabilitation can be very helpful for improving that.

Dr. Marisa Weiss: Absolutely. That's really important. I mean, I see patients all the time who after their surgery, they're curled up like this because they're guarding the area, and they're healing in this position. And the healing tissues are stiffer.

Dr. Patrick Martone: Right.

Dr. Marisa Weiss: So, go to try to open up later, they get pulled in because the scar tissue sort of pulls them in. So trying to maintain the full flow of fluids and proper posture and positioning and range of motion and strength building before surgery, particularly since so many people today are having neoadjuvant treatment. That's their medicine therapies – chemotherapy, immunotherapies, anti-HER2 therapies, for example – ahead of their surgery.

Dr. Patrick Martone: Absolutely. And especially in the case of patients who might need radiation treatment. So number one, it's important to be able to get into the proper positioning for radiation, which sometimes can be difficult after those surgeries. And then number two, any time after radiation treatment, there can be a progressive tightness of your muscles even years down the line. So keeping up with these exercises to maintain that range of motion and stretching is really important.

Dr. Marisa Weiss: Absolutely. And for the women who are listening and for men too, for everybody, we're often working like this. And there's a tendency for us to curl up rather than keep our bodies open. So that body awareness is really important. 

Dr. Agarwal, thank you for joining us. Can you tell us about the lymphedema warning signs that might be hard to recognize but should not be ignored, and how soon after surgery can these signs appear?

Dr. Shailesh Agarwal: Well, thank you for the invitation to speak today and to interface with our patients and with other experts in the field as well. So I think there are a couple of things to think about from an objective and subjective perspective. And what I mean by objective is more numerics and the numbers, the measurements. And subjective are the symptoms and the signs the patients are experiencing.

Technically, if you look in the literature, lymphedema is defined at the point of about six months out from surgery. So it's oftentimes the case that one would expect the arm to be swollen, especially after lymph node surgery during the first few months after the procedure's performed. If that persists for six plus months afterwards, that's where that official formal diagnosis of lymphedema occurs. It can be frustrating for patients because they may have had those symptoms the whole time along beforehand, but many of those patients who have those signs and symptoms may actually resolve after those first few months.

The signs that can be subtle though are numbness or tingling in the arm, even in areas down the arm further away from just where the surgery is performed. Oftentimes, there's this insidious feeling of heaviness that can creep up along the arm. And, oftentimes, it occurs very slowly, and it may not be something that directly disrupts one's ability to perform usual activities, but it's something that's noticeable. If something doesn't feel right, oftentimes, there's something that you just can't put your finger on, but that there's something that's going on in that arm.

Other things that one may notice are changes in the hair, changes in the hair growth on the affected arm, including it could be hair loss, but it could also be thickening of some of the hair follicles on the affected arm. And in addition, lymphedema, it doesn't necessarily present as kind of necessarily a generalized swelling of limbs.

So there may be different areas of the arm that become more swollen, oftentimes, around the elbow there might be more swelling that can actually feel more tight, so there's more tightness when you're using the elbow. And, oftentimes, initially at least, these are things that one may experience later in the day, not necessarily earlier in the time, but later when they've been using the arm more that some of that swelling starts to build on itself and compound. And the fluid that's built up starts to show itself later in the day.

So those are the things that I think patients should pay attention to and bring up when they're following up with their oncologist or at least contacting their oncologist or primary care physician if they experience those symptoms.

Dr. Marisa Weiss: Thank you. That's so helpful. 

Dr. Martone, we received this comment from someone attending the webinar, echoing what Dr. Agarwal just said is like, "I'm really angry because it took six months to get an official diagnosis of lymphedema." What tools are used to diagnose lymphedema, and is it easy to miss this condition in its earlier stages?

Dr. Patrick Martone: So again, very good question. So we use multiple tools to try and diagnose lymphedema. So like we were saying, there are objective measurements where we can do tape measurements if there's a significant difference. We definitely want to listen to those subjective symptoms that if people are experiencing that signs of heaviness or tightness in their arms.

There's other methods like volume displacement, actually seeing how much volume is being displaced if you put your arm somewhere. And then, there's other technologies called bioimpedance spectroscopy. And so, we can have lymphedema at that stage zero that you were talking about before. And so, that's when, when you do have lymphedema forming, but you don't actually have clinical signs, we're not seeing that swelling yet, and really, that's the time where we want to catch this. And so, that there's this new technology, bioimpedance spectroscopy that helps us look at these fluid changes that we can detect it at that stage zero level.

Dr. Marisa Weiss: That's great to identify it early, which gives you the best chance of managing it, and keeping it from flaring up.

Dr. Patrick Martone: Exactly, because it's at those early stages where it's still possibly reversible. So that's always where we want to be trying to catch it.

Dr. Marisa Weiss: Right. And when you have lymphedema, then you're at higher risk for having an infection that could make it flare up further. So being vigilant and really keeping an eye out and just getting the information you need to know; “How do I live with this arm, how do I watch it every day, and make sure that it's okay?” 

Let me ask Blanca. After a lymphedema diagnosis is confirmed and the patient, let's say, is sent to you as a physical therapist or to your colleagues who are occupational therapists, how do you develop a treatment plan for that individual person's needs?

Blanca Moreno: Good afternoon. Thank you for having me, and just wanted to let you all know that as a physical therapist and I work with a lot of other physical therapists and occupational therapist, on the day of their initial evaluation, we will take subjective history from the patient, finding out about their cancer, the cancer stages, if they needed any type of surgery, or lumpectomy, mastectomy. Also, are they requiring chemotherapy, and are they going to undergo or underwent radiation? Depending on the subjective history all patients undergo objective measurements; we address their posture, we address the body mechanics on how they're performing transfers. We also observe active range motion and passive range motion for their neck and bilateral shoulders. And we do take circumferential measurements. Everything is measured in centimeters, and we measure the involved… and the uninvolved arm if there is over two-centimeter [inaudible] bandaging.

But the complete decongestive treatment entails five components. We're going to be teaching patients about skincare and how important it's to perform daily self-checks. We will teach patients how to perform a manual lymphatic drainage, which is a manual technique, not to be confused with massage.

We will also apply compression bandages if there is significant swelling, and we will get those patients also for garment fitting. We will divide our sessions into two stages: reduction stage, where we'll try to decongest the limb as much as we can, and these patients are required to wear the compression bandages for 22 hours and come back to us at least three times a week, and we will teach them, also their caregivers, to bandage them or perform self-bandaging.

And as they progress and we see the limb being decongested, less pitting edema, improved skin pliability, improved range of motion, then, they'll meet with the compression fitter and be measured for compression garments both daytime and nighttime, depending on where they are in their lymphedema. A lot of patients, when they come back to us, they may not show any signs. But we monitor them closely, and we take measurements weekly.

Dr. Marisa Weiss: Well, that's so helpful. That's so good to know. It's great that you have that going at your hospital. Thank you.

Dr. Martone, I was going to ask you if you can explain what complete decongestive therapy is and how it's used and also the principles of applying these bandages. I mean, what Blanca just described, of course, requires expertise. The application of the bandages has to be applied in a certain way, of course. But can you explain how this decongestive therapy works, and how it's used?

Dr. Patrick Martone: Sure. So just to expand a little bit on what Blanca was saying, so that there are those main components. So one, the manual lymphatic drainage, and again, I like to emphasize what Blanca said, that it's not just a massage. It's actually a very specific technique that should be done by certified lymphedema therapists.

And the idea is that we are draining the proximal areas, so the areas that are closer to where our lymphatic channels are draining to then make room to push the fluid out of that limb. So that's the manual lymphatic drainage component.

The bandaging component, again, I always tell patients, again, "You want to go to a certified lymphedema therapist,” because we can't use things just like ACE bandages to do this. It needs to be a special gradiated compressions so that we are actually creating that gradient, that change in pressure to push the fluid up out of the arm. And then again, there's the education piece of exercises that we can do, of the skin care, and then obtaining those appropriate compression garments.

Dr. Marisa Weiss: Right. I mean basically, where your arm is below the heart level and the gravity just can pull that fluid down, and so the techniques that you need to help massage the fluid, I mean, I know you don't want to use the word massage, but sort of the targeted massage techniques, the manual lymphatic drainage to sort of move the fluid up the arm and then into the drainage pipes that the bigger drainage pipes are in the armpit is an important practice and a very specialized technique that physical therapists like Blanca are experts in delivering. Thank you.

I was going to ask Dr. Cabiling, what do you view as the most cutting-edge surgical options for treating lymphedema right now? And also, when you answer that, just give us your opinion about how long should somebody pursue the more conservative treatments before considering something more aggressive like surgery to treat lymphedema?

Dr. David Cabiling: Yeah. For most of our patients that are going to be considering having a surgical intervention for treatment of their lymphedema, I usually recommend at least three months of compliant, good non-surgical treatment. One, because a good connection with a skilled therapist will still be a component of their post-surgery life as well. And so, having that component of their treatment team in place is very critical and important for them. So three months is usually the recommendation that I offer my patients.

In terms of surgical procedures, I think the more cutting edge ones would be the ones that are sort of termed physiologic procedures. And these are the ones that are not necessarily just trying to reduce the size of the extremity, which have been around for decades. But some of the newer ones are designed about actually improving the function, the physiologic lymphatic function of that extremity. And there are a number of them.

The two most common ones that are utilized would either be our lymphovenous bypasses, essentially recreating a new channel or a new outlet for the blocked lymphatic systems to drain out by draining through the blood or vascular system in a vein. And then, additionally, vascularized lymph node transplants where we will harvest a living packet of lymph nodes from a donor site elsewhere in the body, and then transplant them to the affected arm, which can then also improve the lymphatic function.

And those procedures can be combined together, as well, for patients with more severe disease, and they can be more synergistic together. And so, I think the development of these physiologic procedures is really the forefront of the surgical treatment and where a lot of the promising effects are going to be harvested from.

Dr. Marisa Weiss: And when you use the term physiologic, which is a big word, basically, you're taking advantage of the body's drainage system. It's plumbing or... Go ahead.

Dr. David Cabiling: Exactly. We're improving the actual drainage of the extremity, not necessarily just trying to reduce its volume with, say, liposuction or other procedures that will remove the excess tissue or the excess fluid. We're trying to actually improve the function of the arm and try to restore it back to the way it was working, or at least as close to that as we can with these types of procedures.

Dr. Marisa Weiss: Right. And I would just emphasize that these surgical procedures are extremely complex, require a expert to do it. We're talking about reattaching two things together that are the size of a small piece of spaghetti, basically, using a microscope.

And so, we have great respect for you all as the expert surgeons in this area of lymphedema management, because you trained many years to do this, and this procedure should not be attempted by somebody who doesn't have the experience. So if you're listening and this is something you want to investigate further, you may not have someone like that near you. You might have to travel to someone who does have that expertise. And it's important to only get this done by someone who really knows what they're doing. 

So let's get back to a little more practical thing, Blanca. I know people want to get back in the swing of things, and I have patients who I take care of who say, "Can I play tennis again? And when can I exercise?" How do you advise people to get back in the swing of things but not to injure themselves as they heal up from their procedures?

Blanca Moreno: So I want patients to understand that physical activity, we encourage it and it’s recommended to be performed daily. But depending on where they are at in their cancer rehabilitation, if they are post-surgical, they have to follow up the protocol from the surgeon. If they had required radiation, they shouldn't move the affected arm above 90 degrees for the first for during radiation, and after six weeks. They can do a lot of trunk mobility. They can work on posture, but they shouldn't do repetitive motion during radiation and six weeks after. If they're clear to return to activities, I encourage patients to do a group of different exercises, which include flexibility and stretches because that is going to prevent scarring of the tissue and is going to enhance lymph flow.

They can return to resistive exercises including lifting weights and using resistive bands, but they have to pay close attention to strength training because as they're doing repetitive movement with weights, that it can increase the blood flow to the area so it can actually trigger or worsen lymphedema.

Aerobic exercise, everybody should be walking or jogging, cycling, swimming because it actually involves larger muscles and it's going to actually help them feel better because it's going to also affect the cardiovascular fitness. It's going to manage their weight, and it's also going to help improve the limb flow and the venous return.

So if patients want to return to more strenuous exercises such as heavy lifting, playing tennis, golfing, or anything that requires constant repetitive movements, we do recommend that they do wear compression garments prior to initiating the exercise, during the exercise, and to maintain and have those compression garments on for at least two hours after exercising. And they should be fitted correctly to their arm. 

But patients should not be scared about exercising, but they have to be cautious about it. They should really reach out to their medical team before initiating, and they should start as low level activity and progress accordingly.

Dr. Marisa Weiss: Right. And we have studies that show the value of getting active and resuming regular exercise sooner than we used to recommend, but that requires to be guided by experts like yourself that those studies included physical therapists who were experts in rehabilitation medicine after surgery to help people reduce the risk of lymphedema and to help them improve their strength, their comfort, their range of motion, their flexibility.

But you just don't want to do this all on your own. And this is not a time to, right after surgery, decide to learn how to play pickleball or hit a golf club with some violent motion. We're talking about training your body back to do repetitive motions in a way that is helpful and not likely to cause injury.

Just so people know that, again, the lymphatic channels are a system of drainage pipes that take the fluid from the tissues back into circulation, and there's not muscles in the wall of those lymphatic channels. It depends on the muscles flexing and the activity of that arm to propel the fluid back into circulation. So when you use your arm, and you use the muscles of the arm, that helps push the fluid back up the lymphatic channels into circulation. And when you're doing exercise with a sleeve on your arm, it helps exert more pressure on the fluid to propel it up and out of the arm. So that's why often the physical therapist will recommend, or your plan will include wearing a sleeve while you're exercising to help propel the fluid up and out of the arm to get it back into circulation.

Dr. Agarwal, one question that was asked multiple times is: “How long after initial breast cancer treatment can someone get lymphedema? Is it possible to develop it decades later?”

Dr. Shailesh Agarwal: So it is possible to develop it many, many years later. There's not a restricted timeframe. The things that we talked about though initially to help reduce risk are also the things which, if not attended to, could lead to development of lymphedema even later. So things like injuries to the arm, to the arm that has had previous axillary lymph node surgery could then lead to lymphedema even a decade or two decades out.

So really, it depends on what types of activities and exposures that arm is being exposed to. And so, that could include, for example, gardening and not wearing a glove while gardening. And one may be okay with that for 10 years. And then on the 11th year, 11th summer, there could be a cut, a scratch, something that could then lead to the formation of lymphedema.

So I don't think there's a restricted timeframe, but I also think that, oftentimes, the majority of patients are going to present earlier. And so, you're going to see this curve where things kind of slow down, and there's a leveling off. But the fact is you're probably never completely out of the woods.

Dr. Marisa Weiss: I mean, I'm 13 years beyond my surgery, and I've trained myself, like Blanca has said and all of you have said, to have a high level of attention, to be really watching your arm, looking at the cuticles on your fingernails beds to make sure that nothing looks red or puffy or tender or any sign of infection because infection can make things way worse very quickly. So you definitely want to attend to that.

If you have new redness of the arm that's spreading, that has irregular edges, that's stiff, tender, you might have some hot flashes or a fever – that's a medical emergency. You really need to ring the bell, and come in, and use the words on the phone with your doctor to say, "I need to be evaluated immediately for this," and use your voice to speak up, because it's much better to find out that it's nothing than it would be to find out that you have an infection that's been festering for a while that could make the lymphedema issue worse.

Blanca, we have a question about can people learn to use manual lymphatic drainage at home on their own? Because we know that this is a chronic problem. And over time, people can't keep seeing you three times a week even though they love you, I'm sure. They need to be able to do things on their own. Is that something that they can learn to do on their own at home?

Blanca Moreno: Yes. The manual lymphatic drainage, the technique itself, can be taught to the patients, and we encourage patients to learn... sometimes it’s the compliance with it because patients do like it when it's performed on them. But patients have to understand this is a life-long condition. So self-care must be done and performed daily.

So the manual lymphatic drainage should be taught by one of the lymphedema-certified therapists. And it's actually a manual technique, and it actually stimulates the lymphatic transfer system of the superficial lymphatics. And its purpose is to move the fluid from congested areas to healthier areas.

So we have to also make sure the patients understand their anatomy, where was the cancer, because they need to understand if my congested area is my right axillary lymph nodes, now, I need to move away from it towards my healthy left axillary lymph nodes. But I also have the same ipsilateral lymph nodes in renal lymph nodes.

So we have to create connections, anastomosis. And once patients learn how to do it, it’s a very easy technique. It's very slow, manual technique, but they need to learn that it's a specific stroke. It's a pumping mechanism, which uses your entire hand. And it's always best done skin on skin.

You don't want to perform manual lymphatic drainage technique over clothing, and you don't want to apply any type of lotion because you want to create the traction that you gently are lifting the skin because as you're lifting it and as you’re moving it away, you have to also be make sure that you clear was proximal and then move distally. So sometimes a lot of patients tend to use a dry brush that they just dry brush their arm from distal, but the manual lymphatic drainage starts activating both lymph nodes, even the affected ones, and is slowly leaving the proximal areas moving away to the healthy lymph nodes. And then, once that – okay.

Dr. Marisa Weiss: Yeah. To make sure that people understand the words that you're using. So, distal means the further down, and proximal means closer to the heart area. So you're trying to move fluid from down below up towards the place where it can drain out. 

Thank you for that information. That's great to know what people can do on their own. It's so important.

And the body has a lot of resilience and flexibility, just like 95 in the Philadelphia area just collapsed. But people are finding other roads to get past that obstruction. And your body does have a lot of backup systems. And as Blanca was saying, you're trying to move the fluid to other areas where it can drain off. And maybe, some of those channels can open up to get bigger to accommodate more fluid to get it off. Maybe, new channels can form over time. These are all parts of the miracles of your body that you can heal in amazing ways in that way. 

Dr. Martone, someone asked about how long do you wear compression sleeves, and where do you recommend people get them from?

Dr. Patrick Martone: Yeah. So it's very dependent on at what stage we are in the lymphedema process. There's studies that in that early stage where we're trying to reverse it, that you'd wear compression sleeve for 12 hours a day. Then, there's also different types of compression. So we have different garments for during the day versus garments that we wear at night. So those are two separate things that we would typically get for people in later stages.

And then additional things is, there's actually things like pneumatic compression pumps, we call them. So they're actually puffy pumps that you put on your arm, and they actually simulate that lymphatic drainage technique. So these are all things that we can use for that.

And as for places to get it, I always recommend that patients get it at a place where they are measured for the garments. Lots of people may be able to use just off the shelf. Sometimes, we need more custom ones that really need to be tailored specifically. And if there's any questions, see lymphedema therapist.

Dr. Marisa Weiss: Thank you. And you mentioned the pneumatic pumps. These are pumps that use air to propel the fluid up the arm back into circulation. And they usually create a gradient where there's a bit more pressure lower down than there is up above, trying to encourage the fluid to go up. And also, it's sequential. It doesn't compress the arm all at once. It sort of milks the fluid up.

And these pumps do give people a sense of freedom or if they have a chronic condition and they've got kids at home and they can't pay the co-pays of coming into a physical therapist, or there isn't one in the area, they can get set up with a pump at home under the supervision of someone who's expert in how to use a pump and how to set the settings and all that. And you can use the pump privately in your own home watching TV on a regular basis. So that's something to look into, particularly if this is a chronic problem for you, and you need a solution that you can use at home that you can't get out and go to a physical therapist on such a regular basis. Dr.-

Dr. Patrick Martone: Absolutely.

Dr. Marisa Weiss: Go ahead.

Dr. Patrick Martone: Sorry. And there's also chest wall pieces for the pumps as well, so that can be very helpful for people who have lymphedema in the chest wall or the breast region too.

Dr. Marisa Weiss: Yeah. Well, thank you for adding that. That is really important to know. 

And again, this requires supervision from someone who knows what they're doing. You don't just have the pump and take it out of the box and buy it from Amazon. No, it's a special pump that you need to get medical insurance coverage for work with your physical therapist or your occupational therapist or your physical medicine doctor to make that happen. 

Dr. Cabiling, I was just going to ask you just about diet and the things that you should or shouldn't eat and other lifestyle choices that you advise your patients about during the time that you're trying to manage things conservatively. And even after you have a surgical procedure, you still want people to be following the healthiest lifestyle possible.

Dr. David Cabiling: Yeah. Exactly right. And I think, overall, my approach towards that is sort of a holistic approach towards a healthy lifestyle and maintaining an active lifestyle within the careful constraints that Blanca was talking about for patients that are exercising and doing activities. Compressive garments during those times are helpful to prevent fluid excess backup.

But having a healthy lifestyle and maintaining a well-balanced diet and trying to maintain an optimal weight, I think, are all very helpful features of reducing your risk of worsening lymphedema if you have it, or developing it if you don't have it at the current time.

Dr. Marisa Weiss: Thank you. Thank you. 

And Dr. Martone, what about the use of the compression sleeves on airplanes? What do you tell people if you have a short flight, a longer flight, how do you manage all that? What do you recommend?

Dr. Patrick Martone: So the recommendations are if you have lymphedema – active lymphedema, you have swelling – you should absolutely be wearing compression on a flight. For patients who are still at risk for lymphedema, you have a discussion with your provider about what your actual risk factors are. And so, for patients who feel more comfortable for getting that, we get them compression. The important thing is that you wear a compression sleeve and also a glove. So you have full compression throughout the arm during that flight.

Dr. Marisa Weiss: And why is it that on airplanes, lymphedema can get worse? Can you explain the pressure? What happens in the cabin that can make that an issue?

Dr. Patrick Martone: So the theory is that a change in pressure can make you more susceptible to that lymphedema, those changes in pressure with flying, essentially.

Dr. Marisa Weiss: Okay. Thank you. I appreciate that. 

And Dr. Agarwal, I mean you've got patients, for example, that have all these different jobs that are physical that... Let's just say you work for Amazon. You're like loading packages, or you're an assembly line, or you're a chef in a hot kitchen. What do you tell people, get another job, or how do you modify the life that you have already to minimize the risk of lymphedema?

Dr. Shailesh Agarwal: Yeah. So my approach to this is really our job, especially as reconstructive surgeons, is to allow the patient to perform the activities that they want to perform and be able to do what they want to do and optimize that as much as possible.

And so, that may mean for the chef, making sure to avoid burns and observing for those types of things and mitigating risk. I don't think we can eliminate risk in any facet of our life, including in lymphedema development, but mitigating it and being observant are important. And frankly, if the time comes where lymphedema is developing in a patient, then, we have to think about whether they can safely perform the activities that they're doing for their workplace. But in the absence of that, I think you keep doing what you're doing, but you have to be vigilant to make sure that we're not doing anything that could increase the risk directly.

Dr. Marisa Weiss: Right. I would say get off the frying machine. When I worked at McDonald's during medical school, I was in charge of frying the apple pies, and I would get burns up and down my arms. So I'd say stay away from the fryers. But absolutely, we want you to get back to the life that you want to be living. And for each of you, you do so much to help each person restore that sense of purpose, meaning, and life and joy, and the independence to do what you want to do when you want to do it.

Well, before we go, I'd like to ask each of you, if you have one message for our community members who are struggling to manage lymphedema right now, a short message, what would that be? Dr. Agarwal, I'll ask you first,

Dr. Shailesh Agarwal: I was thinking about this and thinking about what I talk about with my patients. Lymphedema, it's not a binary thing. It's not either you have it or you don't. There are different degrees of lymphedema, and there are different extent to which it can affect an individual. So keep in mind that if lymphedema does develop, there are treatment options. There are management options. And those management options, while not curative, may make it to a point where you'll be able to continue doing the things that you love to do.

Dr. Marisa Weiss: Thank you. Thank you. Dr. Cabiling?

Dr. David Cabiling: Yeah. I would echo what Dr. Agarwal was saying as an important message to take, in that a diagnosis of lymphedema while, in current times, is still oftentimes a lifelong condition, there have been tremendous improvements in technology, understanding techniques for treatment of that, that really can significantly improve the quality of life of patients affected by that, that there are options for patients that are facing a diagnosis of lymphedema.

Dr. Marisa Weiss: Thank you. Thank you. Blanca Moreno, please, what would your short message be to our community? 

Blanca Moreno: Lymphedema does not define you as an individual. So you shouldn't let lymphedema take charge of your life. You can take charge of your lymphedema, and you have such a great supportive system, your doctors, your family members.

Dr. Marisa Weiss: Thank you. Thank you. And Dr. Martone, let's share your message.

Dr. Patrick Martone: All right. I think we have to find a way and find something that works for you as an individual. And if we're having trouble with it, we reach out to support groups because the people out there have tried lots of different things that can be successful for them. And really always getting that input under medical supervision is always a great idea.

Dr. Marisa Weiss: Right. And we can learn so much from each other. And at Breastcancer.org, we have a lot of information. And within our community, people share with each other, things that help. And what worked for you, may not work for you now, but it might help somebody else. So thank you all so much. We are so grateful. 

And thank you to everyone attending. I hope today's webinar helps you become more empowered in your care. 

And if you're looking to connect with others who understand what you're going through, we welcome you to join the Breastcancer.org online community. 

Thank you again. And take care, everyone.