What to Know About Breast Cancer-Related Lymphedema  

[00:00:00] Adam Walker: This podcast is brought to you by Impedimed. Improving patient access to revolutionary lymphedema care. Impedimed helps empower survivors of breast cancer to live their lives to the fullest by supporting early detection and intervention for breast cancer related lymphedema.

[00:00:20] From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.

[00:00:35] One in five women who have had breast cancer surgery and treatment are at risk for developing a potentially detrimental side effect of breast cancer. Breast cancer related lymphedema, a condition in which lymphatic fluid gets trapped in lymph vessels and causes chronic arm swelling, leading to reduced quality of life for many.

[00:00:55] We’re thrilled to be joined today by two guests to help educate us on this topic. Dr. Stephen Chen, a practicing surgeon, chief medical officer at Impedimed, and past president of American Society of Breast Surgeons. And Kathy Lair, who a patient advocate who will be sharing her personal experience with breast cancer related lymphedema.

[00:01:15] Dr. Chen and Kathy, welcome to the show. Thank you. Well I’m very glad to talk to you about this. I don’t know much about it, so I’m looking forward to being educated by the both of you. So, so Dr. Chen, let’s start with you and to kind of set up this conversation. Can you describe for us what is lymphedema and who is at risk for developing breast cancer related lymphedema?

[00:01:40] Dr Steven Chen: So lymphedema 

[00:01:41] very simply is just fluid that’s accumulating in this. Spaces in the tissue of an affected area. And so from that, you can get swelling in whatever the affected area is. It can be uncomfortable, and as it progresses, it can get even worse. As it pertains to what we’re talking about today for breast cancer, lymphedema is primarily related to damage to the lymph nodes and the drainage from the lymphatic channels.

[00:02:09] And you can think of the lymphatic channels as carrying this fluid that is full of protein and helps you process, almost like a parallel circulatory system, and that filters through lymph nodes. And when you operate on people. You sometimes have to remove these lymph nodes, or you can damage these lymph nodes, or chemotherapy can damage the channels themselves, or radiation can as well.

[00:02:30] And so all these things can lead to backups because you’re having difficulty draining and that can cause swelling in the arm in particular for breast cancer, Although occasionally you’ll see it in other areas as well. 

[00:02:42] Adam Walker: Okay. Okay that makes sense. I appreciate you explaining it in that way so Kathy, we know that patient advocates like you are critical in helping raise awareness and developing better treatments That decrease the risk of side effects like breast cancer related lymphedema.

[00:02:58] So Can you share your personal experience and how your provider was able to catch the breast cancer related lymphedema early on to prevent it from becoming a chronic issue? 

[00:03:09] Kathy Lahr: Yes. I had a double mastectomy. Thankfully, my lymph nodes were not affected by the cancer. However, they were disturbed during the surgery. 

[00:03:22] And I went quite a while before it was discovered. But my practitioner, my breast surgeon, Was very adamant about every follow up visit. And of course, in the beginning, you’re going every week, every 2 weeks, every month. And, you know, until you go on, I’m now in the 6 month checkup plan, but with every visit, you are measured.

[00:03:46] By the Impedimed machine, and it’s a such a simple thing. You just stand on that machine, place your hands and your feet in marked places and that measures the fluid while a nurse is watching it on her computer screen. Mine was good. I mean, I had nothing until that fateful day and it had risen quite a bit, which.

[00:04:09] Was a surprise and a shock. I had educated myself about lymphedema, but it really wasn’t at the top of my concerns at that time. I was also dealing with an ovarian cancer diagnosis. So, you know, I had to just within months. So I was surprised when there was such a change as was my doctor and my nurse and immediately Dr.

[00:04:37] Turner, my breast surgeon. He was immediately on it. I had an appointment with a physical therapist who specializes in measurement and the sleeve that you need, the correct size. And so I saw him just within, oh, maybe a week or so it was very quick appointment and I was fitted with the sleeve, which I was to wear every day for, I believe it was three weeks to a month.

[00:05:07] But in the meantime, we had COVID too. And so the doctors of course, were all not seeing patients unless it was an emergency. So I just continued to wear it. I thought, well, it probably can’t hurt anything. And then I did after a while, I thought, well, I need to check in. So I called back to the physical therapist and explained to him, you know, We’re in the throes of COVID.

[00:05:31] My doctor’s office isn’t in, although I could have reached them. That was really not a problem that I thought go directly to the therapist who fit me, had the information, had the instructions. And he said, I think if you’ve worn it longer than I prescribed, you’re probably fine. And I have been fine ever since.

[00:05:50] I was, it was unique in that It was only discovered thankfully through the Impedimed machine because I had no heaviness. I had no visible swelling. I didn’t have a clue and I didn’t have any pain. There was just nothing to show me that maybe I had something going on. So I’m thankful for that.

[00:06:15] technology being part of my care. And I still every time I go, I’m tested every time. 

[00:06:21] Adam Walker: Yeah, I’m glad they caught that for you. That’s fantastic. So, so what kind of impact in chronic breast cancer related lymphedema have on breast cancer survivors? And in what ways does it affect their quality of life? 

[00:06:35] Kathy Lahr: Yeah, Dr.

[00:06:36] Chen can probably answer that. In my experience, I think that as a child, and I had a great aunt. who had a mastectomy. And of course, we all know back then how awful it was, you know, and she had lymphedema and her arm would just get gigantic. It was huge to the point where it would even seep through her skin and she always had a tissue and she would pat at it.

[00:07:07] And that has stuck in my mind since I was a young girl. I’m probably preteen. And once I was diagnosed with it, I thought, Oh, we’ve got to get this under control now. And I feel very fortunate that short term of wearing that sleeve, Was all I needed and I’m so thankful for that But it is something that current patients need to research.

[00:07:33] They need to be aware They need to know if you feel any heaviness if you feel any swelling you have anything that just does not seem right On the side that has been disturbed with the surgery You need to get with your breast surgeon immediately. Yeah, that’s right. 

[00:07:51] Adam Walker: Dr Chen, can you weigh in on kind of what that impact looks like as well?

[00:07:54] Dr Steven Chen: Yeah, so definitely this varies by stage. Just like we stage cancers for how bad they are, we stage lymphedema by how bad it is as well. So stage zero is something like that we can detect with our devices at a med. And that, that just shows that you have fluid accumulating, but it doesn’t necessarily have symptoms yet.

[00:08:15] Or sometimes the symptoms are very subtle. You talk with someone, you say, you know what, my ring that I’ve been wearing for 20 years feels a little tight today, and it didn’t use to feel tight, or my clothes just don’t fit quite the way that they used to. And then you delve in more and you say. You know, actually it’s a little heavy and that’s as we progress into stage one, where you have fluid accumulating and you can actually start to see it.

[00:08:41] But when you elevate the arm or you wear a compression sleeve, it tends to go away. And then you get to stage, the next stage, where it’s even more swollen, it’s getting firmer and it doesn’t really go away easily. And then stage three is large swollen arms or legs, they’re dry, they blister, they get infected.

[00:09:02] And as you can imagine, the worse it gets, the harder it is to live with. So stage zero, the big thing is to have it not progress. And that’s, we’re getting into a sleep early on just as Kathy did can really help to reverse it, stage zero, stage one, and still reverse it more often than not, because you get into stage two and three, these are lifelong problems.

[00:09:23] If you’re always trying to manage, sometimes you have trouble doing. Fine motor skill, things like buttoning a shirt your shirts don’t fit well and really a lot of breast cancer patients are already dealing with body image issues. Even a modest amount of swelling can really affect someone’s self image of how they look and really riding.

[00:09:45] I like to say that. You know, we’ve gotten so good at curing cancer that the next stage is really to make sure that the people who their cancers are cured survive in a way that cancer isn’t the first thing that they wake up with and the last thing they go to bed with. And having lymphedema is just one of those things that if you wake up every morning and you’re putting on a sleeve and every night you’re saying, wow, my arm hurts.

[00:10:10] That’s just one more reminder that, yes, the cancer isn’t going to kill you, but it’s there every day in your life, and that’s just not, that’s not what we want for patients. 

[00:10:20] Adam Walker: Yeah. That’s right. That’s right. Now, Dr. Chen, how often does lymphedema occur in breast cancer survivors? And when are survivors most likely to develop breast cancer related lymphedema?

[00:10:32] Dr Steven Chen: So 

[00:10:34] in the past, lymphedema happened quite frequently. We used to remove all the lymph nodes under people’s arms routinely. And tons of people got radiation as well, and so to the underarm area, and so maybe one in three women might get lymphedema back then. As we’ve improved our treatments, that number’s closer to one in five now, and that encompasses everything from people who have almost no symptoms to people with really bad symptoms.

[00:11:00] And that varies based on What kind of operation, what kind of treatment you’ve had, most commonly people will see lymphedema pop up in the first two to three years, but it can continue to happen even further out. And this is probably what Kathy’s been hearing is even though you’ve been treated once.

[00:11:17] And it seems to have gone away. You have to keep an eye on it because it can come back at any time. I’ve seen people develop lymphedema four or five years out. Sometimes they get an infection in their arm and suddenly it pops up and it doesn’t go away and now you’ve got to treat it. 

[00:11:32] Adam Walker: And what are like some of the signs and symptoms that someone would need to watch out for or proactively monitor for?

[00:11:40] Dr Steven Chen: So, from what people can monitor themselves for is, again, these subtle symptoms, the things don’t fit right, my arm feels heavy, my arm feels tired when I get, when I get cut, it seems to get infected more easily, or it doesn’t heal up as easily. And these can be very subtle, and a lot of surgeons, and a lot of doctors, Don’t even ask you about it, unfortunately.

[00:12:03] And so you really need to bring it up to your doctor and say, I had breast cancer, particularly if you’re no longer seeing your breast cancer team anymore. And you know, my arm hurts. Do you think I have lymphedema? The other way to really monitor for this is to use a SOZO device, which is. The device that’s made by Impedimed.

[00:12:24] And just to monitor that periodically. In the beginning we do it about every three months. And as we, as you get further out, you measure less and less frequently. But to do that allows you to pick up even very small amounts of fluid. And that very small amount of fluid can get you into treatment.

[00:12:41] before you get to that chronic lymphedema. And so that’s really what, that’s really where we’re shooting for it in Impedimed 

[00:12:46] Adam Walker: that’s right. Now Cathy, you mentioned, I think you said you used a sleeve or a garment to treat yours. Did you use anything else or could you tell us a little bit more about that?

[00:12:57] Kathy Lahr: Actually, no, I was just fitted with the sleeve and elasticized sleeve, which I did wear every day. And that did the trick. But as Dr Chen said, you always have to be thinking I’m not home free. It can still come back. I could still be affected. I mean, I hope not. And I try to keep A very close watch on it.

[00:13:20] And as I said, my breast cancer team really keeps on it. We use that Soso machine and they have a name for it. I forget what it is, but and it’s quite sensitive. So if you get on there and you’re not just right. You could get a bogus reading and my team is so good. Get back off of it. Use the alcohol swabs on the hands of the feet and she swabs down the machine.

[00:13:45] And then we start over seeing that therapist as quickly as I was able to be fitted and that it, they mailed it to me. I mean, they had to order it off and they mailed it to me. And this new law where it’s now going to be paid for, that’s very interesting to me for those folks who maybe don’t have the money or that, you know, it’s a real difficult thing for them to go ahead with them.

[00:14:13] And it was not a stress for me, but I speak to a lot of women about, get those mammograms. Don’t miss your doctor’s appointment. If anything seems off, it probably is. And I’ve done some of my radio spots where don’t think I can’t afford the mammogram or I can’t afford the follow up, right? Because there is financial aid available and that’s no excuse to die for, from cancer when breast cancer is so treatable these days.

[00:14:47] We women now are living in a great time period for breast cancer and even my ovarian cancer. 

[00:14:54] the 

[00:14:56] lymphedema as is an afterthought. It was with me. I was, I knew it could happen, but I didn’t really think about it and I didn’t worry over it. But now that it did happen and I’m aware if I do anything And this is something women can be aware of and maybe like the arm that was disturbed during the surgery if it hurts a little bit or it’s, you know, wash windows, the muscles are going to be sore.

[00:15:25] But I always think I got to watch that for a couple of days. The muscle aches go away, then I’m good, but it’s just little things that you have to kind of keep in your mind because you don’t want to go backwards. Once you’ve come this far. 

[00:15:38] Adam Walker: That’s right. That’s right. And Dr. Chen, did you have something you wanted to say as well?

[00:15:41] Dr Steven Chen: Yeah, I think Kathy makes a really great point here, which is. Early detection of breast cancer is one of the, is one of your best lines of defense against lymphedema. The earlier you find the breast cancer, the smaller the amount of surgery, the less chance you need chemotherapy, the less chance you need radiation therapy to your lymph nodes.

[00:16:01] All those things play into whether you get lymphedema or not. So, finding breast cancer early improves your chances of surviving. It also improves your chances of surviving well. And so, as Cathy said there’s just, I cannot stress this enough that going in, getting a mammogram, following up on your mammogram results, making sure that you have heard from your doctor that your mammogram is actually clear, And that there is no other testing that they recommend because sometimes even if your mammogram is clear, they will still recommend other testing depending on what your risk is.

[00:16:41] It is essential for the entire breast cancer journey, not just for survival, but also for these long term side effects. 

[00:16:50] Adam Walker: That’s right. That’s right. So, so Kathy, I wonder, you know, as we’re kind of wrapping up our conversation here, I wonder what do you think is important for survivors and those living with breast cancer to know?

[00:17:02] Anything else that you want to add to your thoughts so far? 

[00:17:05] Kathy Lahr: I think just educate yourself, be aware. When you are first diagnosed, you get stacks of information and it’s like I can’t possibly go through all that. You’re emotional, how much are you going to absorb? But take it step by step, little bits, and call your patient advocate.

[00:17:24] That’s what she’s there for he or she is there for get with your breast cancer team I was fortunate. I had a fabulous team right here in my town. I didn’t have to go anywhere The same with the ovarian side. I mean I could have gone Johns Hopkins I could have gone anywhere, but I was fortunate to have really good teams here and like with my breast team There are just so good at follow up.

[00:17:51] They are excellent. And if you don’t feel your team is ask the questions, drive them crazy with an email, use the telephone, whatever you have to do, because it’s your life. Your body, your cancer and everybody’s cancer is different and how you react is different. So I don’t know why I acted, reacted so well.

[00:18:19] I didn’t cry. I didn’t get all crazy. I didn’t, I just, okay, this is my deal. I’ve got to work with it. But then I know other ladies who were just frantic and they need to work through that themselves. But they have to also be aware of what can happen, not that it’s going to happen, but be aware, I’ve got to get through this step of my biopsy.

[00:18:47] This step of my, if it’s, I had double mastectomy, I have a friend who just had a lumpectomy, whatever you’re. diagnosis requires. Get through that step. Get through the healing step. But always be aware there can be one more thing. You don’t want to dwell on it. You certainly don’t want to dwell on it.

[00:19:08] But be aware. Be aware of the health of your body. Just you. What if you got an infection from a cut, or you fell and needed stitches, or you had a broken bone? You’re going to protect those injuries. So protect what your breast surgeon has corrected for you and move forward the best you can.

[00:19:28] Adam Walker: And and Dr. Chen, I mean, I wonder if you could give some thoughts or advice on how people can prevent lymphedema from becoming a chronic condition. 

[00:19:38] Dr Steven Chen: So first, the first thing that you can do to prevent it from becoming a chronic condition is actually diagnosing early. The same thing as finding breast cancer, right?

[00:19:45] The earlier you find it, the better. The more treatment options you have, and when you find it super early, like Kathy did, wearing a sleeve for a month is often good enough, and then you are good to go for a while and just go back into monitoring. As you go forward, you sometimes need more things like lymphatic massage, or decongestion, or even having to wear a sleeve chronically, or something like that. 

[00:20:10] And as you get to more and more severe corpses of lymphedema. You can sometimes look at things that are more novel, things like certain types of surgery where we’re talking about doing lymph node transplants or even lymphatic bypasses. You don’t want to get there. So I tell people the very best thing that you can do to prevent lymphedema from being a chronic condition Is to get diagnosed and that can be by a sozo machine and the best way to use that is to actually have it measuring you before you have surgery.

[00:20:44] So you know what your baseline is continuing on because everyone has different amount of fluid in them. So it’s most accurate if you know what’s normal for you. But if you don’t have access to one of those. Maybe a tape measure will at least get you a little bit of information as to whether your arm is starting to swell.

[00:21:00] That’s a little bit later down the phase than a Sozo machine can pick up, but it’s better than nothing. But probably the most important thing, and Kathy just touched on this, is good communication with your doctor. If your doctor isn’t communicating well with you, then you’re not really getting the benefit of their expertise.

[00:21:16] They could be the best doctor in the world. But if you’re afraid to ask the question, or they don’t give you their expertise, Then you almost have to ask the question. What good is the expertise if you can’t hear it from them? And so if you don’t find that you’re communicating well with your doctor and you feel shy about bothering them And you think you’re going to drive them crazy Then i’m going to throw out the possibility that maybe that’s not the doctor and they might be great technically and they might have Amazing medical knowledge, but if you can’t communicate with them, then you’re not benefiting and so that would be my first and foremost thing is Being willing to say, you know what, my hand feels a little different than it did last time I saw you.

[00:22:02] is the first step along this journey for most women. If you have access to a SOZO machine, so much the better, they can pick it up even before you notice that. But if you don’t, for the rest of our, the rest of your listeners, just communicate. 

[00:22:19] Adam Walker: That’s right. That’s right. Communication is so important.

[00:22:21] That’s right. So so last question for either or both of you where can our listeners go for more resources about lymphedema early detection and prevention? 

[00:22:33] Dr Steven Chen: I always say there, there are a multitude of resources on the internet, of course, but you gotta filter where you’re getting the information from.

[00:22:42] The the Komen website has a very nice section on survivorship. And that you should look at, it includes a section of lymphedema on the American side of breast surgeons which I’m a part of, operates a website called Breast 360. The NIH has a website and of course, Impedimed. The company that makes a Soso machine also has a nice website that has information about lymphedema. 

[00:23:08] But I tell you, wherever you’re getting treated, the odds are your hospital also has a website about lymphedema as well. There’s no shortage of information. You just have to know to go get it.

[00:23:20] Kathy Lahr: Exactly. That’s what I found initially in the stacks of paperwork. I was given explaining the breast cancer, the surgery, everything that went with it, there was good information about lymphedema and you had to watch for it.

[00:23:35] and what the effects could be. So the basic start of information I would hope would be from your breast surgeon and his team or her team. 

[00:23:46] Adam Walker: That’s right. And I’ll just mention like you said, Dr. Chen, Komen. org. does have a great resource on this. The easiest way to find it on the common. org website is to look for the little search icon and search for lymphedema and your second search result should be exactly what you’re looking for there.

[00:24:03] So Dr. Chen, Kathy, thank you so much for joining us on the show today and informing us about this really important topic. Thank you for having me. Thank you. And thank you to Impedimed for supporting the Real Pink podcast. You can learn more about early detection and prevention for breast cancer related lymphedema at www.

[00:24:27] impedimed. com.

[00:24:38] Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink. komen. org. And for more on breast cancer, visit komen. org. Make sure to check out at Susan G Komen on social media. I’m your host Adam. You can find me on Twitter at AJ Walker or on my blog adamjwalker.

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