Lymphedema 101: What Cancer Patients Should Know

00:00:00:00 - 00:00:25:18
Unknown
Welcome to the recording of Lymphedema 101: What Cancer Patients Should Know. I'm Megan-Claire Chase, and I'm SHARE Breast Cancer Program Director and Co-host of Our BC Life podcast. Plus, I'm an eight year cancer survivor. We have a series of questions that we will ask today to get an understanding of what all cancer patients should know about Lymphedema.

00:00:27:01 - 00:01:20:13
Unknown
Now, I'd like to hand it over to our guest speaker Cynthia Shechter. She briefly introduced herself. Cynthia, Thank you. Hi, everyone. I'm Cynthia Shechter. I own Schecter Care previously in Manhattan, and I moved out to New Jersey just before COVID, which happened to be excellent timing. I've been practicing in the breast cancer and lymphedema arena for about 20 years, and I've studied under many different schools of thought and have sort of come to a cluster of what I believe is the most important thing for treatment and implementing programs for an individual rather than following something that is a verbatim program.

00:01:20:15 - 00:01:54:01
Unknown
And I think that what I've learned is that patients are generally happier with something like that because they are part of their care, which is really important. You should always be a partner in your care. It's your body, it's your life, and you deserve to be able to communicate everything. So that's pretty much how I practice as a clinician and even though I treat lymphedema, which is sometimes very rigid, we can we can break the rules and still get better.

00:01:54:03 - 00:02:16:09
Unknown
And a lot of things are contingent upon what you need to do in your life. So that's basically how I feel about treating lymphedema. It's how I implement my care for secondary lymphedema, whether it's upper or lower extremity. And that's what I'm going to be talking about today, and I hope you guys find it helpful. Thank you so much, Cynthia.

00:02:16:11 - 00:02:51:13
Unknown
Well, we have a series of questions that we compile from our different communities here at Share about with the DMA. So let's get to it. I'm ready. All right. So, Cynthia, you provide a high level overview of the lymphatic system. So, yes, so the lymphatic system is a system that exists of many, many vessels. Every individual has between four and 800 lymph nodes in their body.

00:02:51:15 - 00:03:26:17
Unknown
So there are primary drainage points within our anatomy that we use during therapy. But the number of lymph nodes that we have is quite often related to the number of lymph nodes that they take. So somebody may have five lymph nodes removed with a level two axillary node dissection, and somebody else may have 32 nodes removed. But that doesn't mean that the person who had 32 nodes removed had a more aggressive surgery.

00:03:26:19 - 00:03:57:19
Unknown
They may be a human who has more lymph nodes than the person who had five nodes removed. So when you balance it and you think about the diagnostics and you think about the number of nodes, you also have to think about the fact that you might not have as many. So when you're looking at the lymphatic system and you're thinking about what happened, and so you do develop lymphedema and you had five nodes removed, it seems much more unfair.

00:03:57:21 - 00:04:16:04
Unknown
But then when you think about the anatomy of the lymphatics, you may be a person who has about 300 lymph nodes throughout their body. So 300 lymph nodes, they have a lot of work to do. It's a whole body as opposed to the person who had 35 nodes removed. They may air on the side of a thousand lymph nodes in their body.

00:04:16:06 - 00:04:43:18
Unknown
The numbers are averages. So we never know how many nodes we have in our areas of drainage, whether it's our axillary nodes, which is in our armpit, or if it's our inguinal or pelvic nodes which are in your groin. And those are affected by various cancers and various types of radiation. So you can get lymphedema no matter how many nodes they're removed.

00:04:43:20 - 00:05:16:08
Unknown
It's more it's more related to how you you were cared for after your surgery and what you did in terms of prevention. So there's lots of secondary lymphedema as it comes from removal of nodes and or the radiation that they do. So radiation damages the nodes. It also has scatter. So even if they're just radiating a breast, they're scattered to the armpit.

00:05:16:10 - 00:05:43:03
Unknown
If there is damage to the lymphatics in there, it's the way it is. And that can happen from a lumpectomy. A mastectomy project to me. It it just happens. And we don't know who it happens to or why. And there is no study as to who it happens to. They say that generally lymphedema will occur in the first two years.

00:05:43:05 - 00:06:08:05
Unknown
It could develop really early. Generally, to be diagnosed with lymphedema, it has to be existing swelling for more than three months. So a lot of times people are swollen because they had surgery and that causes swelling. That does not mean that they have lymphedema right off the bat. When you have axillary web recording and we'll talk about that later, you may have swelling.

00:06:08:06 - 00:06:34:11
Unknown
That swelling is not considered lymphedema. It's swelling because you have that condition and we work on it. And as it goes away, then we evaluate whether or not the swelling is a permanent sort of condition. And there's lots of different ways to look at things, and there's lots of different ways to think. I like to think in terms of making people as better as I possibly can.

00:06:34:13 - 00:07:06:00
Unknown
So it's not a cure, but it is a dedication. And I dedicate myself to each patient that I treat because I think that's what we're supposed to do as clinicians. Every single person is different. Every single person does something different. And the way that it affects their body is my job to figure out how to get lymphedema under control and still have everyone living their lives as they did previously, because that's the most important thing.

00:07:06:06 - 00:07:30:09
Unknown
That's why you fought so hard. That's what you were getting back to. So that is my job. My job is to get everybody back to their life as quickly as I possibly can. And if I can do that, then I not only are my patients happy, but honestly, I am more gratified and what I do, because, of course, I want success.

00:07:30:11 - 00:07:55:16
Unknown
I strive to make people feel better and they help them be happy again because the surgeries that we have are just terrible and they make us feel horrible. And people should know you're not the only one who felt horrible. Pretty much everybody feels horrible. And then you get better. So it's the looking to be better that I am part of.

00:07:55:22 - 00:08:29:01
Unknown
I'm also part of the psychosocial support. But the lymphatics themselves will do what they do. So we may have new techniques in surgery like sentinel biopsies, and that does decrease the amount of lymphedema incidence. But it doesn't guarantee that somebody is not going to have lymphedema. I have patients on program who have lymphedema who had sentinel biopsies. They just have very sensitive systems and their body reacts to surgery.

00:08:29:03 - 00:09:00:04
Unknown
It doesn't mean somebody did anything wrong. It means that their body has a reaction. So the lymphatics are vessels that have valves. They break down protein, rich fluid. So in a person who has lymphedema, the texture of the tissue in the arm is generally a little bit firmer than normal skin. So if we feel and we leave a fingerprint in our forearm, then we know, okay, I might have a problem.

00:09:00:06 - 00:09:36:01
Unknown
I should call my doctor, I should get a prescription, I should go, I should meet a therapist, I should find out what this is. And it's difficult because your lymphatics are the only vessels in your body that actually have these valves to break down the protein molecules. So because your lymphatics do that when they're sacrificed and they're not working anymore, even though there are a lot of surgical procedures that we can do during the functional part of what our bodies can do, you no longer have those valves breaking things down.

00:09:36:03 - 00:10:06:02
Unknown
So you need your therapist to provide additional tools so that you can continue to work on your own lymphedema once you're discharged. And that doesn't always mean 2 hours of self massage. It could mean a lot of different things. But we have to pay attention to what is lost. And what's lost is the ability for your body to break down the protein molecules and the bacteria that the lymphatics clean up because that is their job.

00:10:06:04 - 00:10:40:07
Unknown
So what happens is that bacteria or impurities get built up, protein gets built up. It has nothing to do with what we eat. It has to do with what is in our tissue. And we have to pay attention to how our body responds. And I think that's probably it's almost motivating to pay more attention. And you're paying attention to something because you want to prevent it and feel good rather than react to it and then manage it.

00:10:40:09 - 00:11:10:06
Unknown
So the sooner you sort of identify that you feel like you might have a problem and the sooner you get your self-care, the easier it is to get things under control. And you could even resolve lymphedema if it's very early on. So that lymphatics are responsive to therapy. It just has to include a lot of different things and we have to see how the body reacts and then reassess.

00:11:10:08 - 00:11:47:07
Unknown
So every day with the patient, I'm reassessing how their lymphatic system is working, have their VEENA systems working, and honestly, just how they're swelling is and how they're feeling. Because if I'm not doing something, I have to edit. So I listen to the lymphatic system by touch, and that's how everybody should listen to the lymphatic system. But I, I advise not comparing to others how many nodes they had removed because how many nodes they had removed is directly correlated to the number of nodes in their body, which nobody knows.

00:11:47:13 - 00:12:12:17
Unknown
But it would make sense that the higher number that more you have. So it's it's almost like you had an epiphany. It doesn't matter. Right? I mean, you know, because so often in our community, we're like, well, what causes it? And, you know, and often feeling like it must have been something we did or that the surgeon did.

00:12:12:17 - 00:12:38:16
Unknown
And so the fact that you're you're saying it's based off of the number of companies that you have and no one knows is able to tell exactly how many lymph nodes a person has, whether it's in their upper or lower extremities. Wow. Like what? And then we have primary drainage points. But it depends on how damaged they are.

00:12:38:16 - 00:13:07:15
Unknown
Right. What if your bilateral what if there's so many different aspects and it affects the way that you're treated, but it doesn't affect your ability to get better. So every single person with a swollen condition, whether it's in their upper or lower extremities, has the ability to get better. Your body has the ability to either heal or learn to function better, whether if it's lower extremity.

00:13:07:19 - 00:13:28:15
Unknown
The only problem is, is that you're fighting gravity all the time because you're not going to walk around on your hands. And it would be great if you could always have your legs elevated, but really you're sending that fluid to your groin. And that's where it's stopping because that's where it's not working. So what's missing is out in that fluid.

00:13:28:17 - 00:13:50:05
Unknown
And when you're in a dependent position, you'll find that you have a tendency to be more swollen. So I would say upper extremity swelling. It's easier to keep your arm elevated, but not when we're working, not when we're going through our day to day. And we have to pay attention to everything. A lot of people are going for surgeries now.

00:13:50:07 - 00:14:18:16
Unknown
They're going for either lymph node venous bypass where they actually attach a superficial vein to a lymphatic vessel, and that works for a period of time and hopefully makes you better. But we have to keep in mind that that vein does not have those valves to break down the protein molecules. So if if it can't break down the protein molecule, sorry about that.

00:14:18:18 - 00:14:58:23
Unknown
My computer does its own thing. If your body can't figure out where to send that fluid and jarred lymphatic vessels are not able to be activated, that's when we have this chronic problem. So when we do a little intravenous bypass, we have to hope that we caught your swelling early, that you aren't going to have radiation thereafter, and that we figure out a regimen to break up some of the stuff that builds up in the extremity so that then you're able to not be swollen.

00:14:59:00 - 00:15:27:09
Unknown
But just having the surgery is not going to cure the lymphedema. It's going to assist in drainage. And those vessels will be there until they're reabsorbed by the body. But hopefully by that time we've sort of taught and that's, I think, the theory behind the lymph node penis bypass. They also do lymph node transfers where they take lymph nodes from the abdomen, they take superficial ones.

00:15:27:10 - 00:15:45:18
Unknown
I like to call them benchwarmers, like sort of like a football game. And they're the benchwarmers and they're just sort of sitting there. It's not that they're not functional, it's just that they're not necessary. So they hang out and wait until they're needed. So they take a couple of those nodes and put them in the area where you have dysfunction.

00:15:45:20 - 00:16:12:06
Unknown
The hope is, is that vessel, those vessels will be enough to get your system functioning again. Will they be? I have no idea. Honestly, these surgeries have changed over the years. They started doing them for venous bypass in the eighties. So the idea that now we're researching them, I guess there was no data from previous Lymphopenia to bypass that in order to know whether or not it works.

00:16:12:06 - 00:16:41:04
Unknown
We need data. So now they're collecting data, they're doing surgeries, they're trying things, but some things do great and some things don't. And sometimes it's just based on the body. So there's lots of different treatment options for them to Vima. And then yes, with that, I'm sorry, with the but that type of surgery, is that only for the upper extremities or is it at all doing that?

00:16:41:06 - 00:17:16:01
Unknown
it's for in the lower extremities as well. Although have I ever seen someone with a lymphoma in a bypass in their leg? No, I don't know if they do it for lower extremities. Actually, the lymph node transfer, they definitely do, because they can take they they take a couple of nodes from it. I still think it's the abdomen, but it could be they could have to take it from the axilla, which is then makes me a little bit nervous because how do you know which one you're taking now?

00:17:16:01 - 00:17:37:11
Unknown
When they do that surgery, they inject dye into the system, they inject the dye into the area between your fingers. So those are wonderfully lovely injections. And they're the I, I can't say that they're not painful. And then the next day you're green. So you show up and you look like, I don't know, you have the green thumb except you have a green hand.

00:17:37:13 - 00:18:03:00
Unknown
And it's because you had a study done and the studies showed the doctor what vessels might be good to use during a live of bypass surgery. It also shows the vessels that will be good for a lymph node transfer. So they do a lot of different testing and screening now. And so they're able to take nodes from, say, the axilla because they look for the benchwarmer nodes.

00:18:03:06 - 00:18:38:01
Unknown
And if they find them, then there's no no, there shouldn't be a complication of having swelling in the upper extremity. Is there a risk, I would assume. Have I seen surgeries where people end up with lower extremity swelling after having a lymph node transferred from to their from their abdomen to their axilla? Yes, but that was probably, I would say, 15 years ago, and I haven't seen it as of late.

00:18:38:03 - 00:19:03:11
Unknown
Some of my patients do complain of subclinical symptoms and those are real. But a lot of the time it's that people have sort of thing in their groin because they had an incision there and that incision can tighten. They can get almost axillary web, but it's in your groin. Actually, I had abdominal surgery and I had a cord and it felt like somebody was pouring battery acid into my groin.

00:19:03:11 - 00:19:22:22
Unknown
And I was like, God, this is ridic, this is terrible. And I sat there and thankfully I know how to work it and I will induce pain on myself if it means that I'm going to feel better in the end. Most people wouldn't be able to do it, but I got the cord to snap and it finally went away.

00:19:22:22 - 00:19:44:07
Unknown
But I have to say it took me about seven months and it was seven months of having battery acid poured down somewhere in my groin. And I was like, This is horrible. But then it's not so horrible anymore. So we all go through like something bad and then we learn from it and we move on and, you know, hopefully we spread goodness like you do.

00:19:44:09 - 00:20:08:14
Unknown
You went through breast cancer and you're an amazing advocate for people and you're a supporter. And I think that that's sort of how I want to be in a totally different role. So I think people need to be people need to know that they can try to do things to themselves and they're not going to break something and you're not going to ruin your reconstruction.

00:20:08:14 - 00:20:33:04
Unknown
You're not going to ruin your lymph node transfer, you're not going to ruin anything because you're still going to follow your precautions, but you can still do certain things that may be helpful. So I that's sort of the long and the short of the surgeries. They do still do liposuction, but it's unusual. It takes a lot of convincing to the physician.

00:20:33:06 - 00:20:58:10
Unknown
So patients really have to advocate for themselves. But I had a patient who had the lymph node transfer 15 years ago when they first started doing them, and it failed. And the doctor inserted fat here, fatty tissue with the notes and unfortunately, he said will remove that tissue later. But the tissue became one with her arm and he couldn't remove it.

00:20:58:12 - 00:21:17:09
Unknown
And she was upset because she used to be able to wear three quarters sleeved shirts and then all of a sudden they were too tight on her one arm because of where the tissue was grafted to. So she must have asked him for seven years, can you please do liposuction? Can you please? Finally, she had it. And you know what?

00:21:17:11 - 00:21:41:01
Unknown
She it was great because she manages her swelling the same way she used to. A lot of doctors will tell you, you have to wear garment all the time. She will not. The fact is a lot of people what I would it I'm a terrible patient. I have to be honest so as a patient I know I would say, okay.

00:21:41:03 - 00:22:05:18
Unknown
But I would probably only do these like mandatory things for three months. I don't know that I would be able to continue with everything mandatory. I mean, life has a lot of mandatory. I think instead of telling everybody, like all the things that you have to do, we have to tell you the things that we want you to do or that you can do, or you tell me what you can do.

00:22:05:20 - 00:22:40:10
Unknown
And that's how the relationship should work. It shouldn't be a dictated situation because dictation doesn't work for everybody. Gotcha. Well, so it's like you mentioned a little bit about hoarding and like, does that happen if you're someone who is at super high risk of, look, the DNA is like, what are what are those risk factors? And then even what are the symptoms Like, what should we even be looking for?

00:22:40:10 - 00:23:05:17
Unknown
Because if we just had surgery and were swollen, you know, interesting ending, we need to wait for for for that to heal. But is that the same also for like the lower extremities, like water? How would we know that something isn't right? So, I mean, I, I look at the so there's a machine it's supposed to measure fluid levels.

00:23:05:19 - 00:23:35:11
Unknown
It does measure fluid levels. I should not say it doesn't. It's it's too helpful and it's very expensive. So to me, so as a single practitioner practice, I actually it's very expensive. So but what dated it as a gift when when somebody is complaining of, say, heaviness in their arm and it just feels achy all the time to me you have subclinical lymphedema that that could be the precursor.

00:23:35:13 - 00:24:07:03
Unknown
So I would actually initiate manual lymphatic drainage. I would work on scar tissue, I would work to make sure that there is no axillary web or pointing in the lower in the groin for the lower extremity. Sometimes people actually get caught in behind the knee in the lower extremity where all of the sudden that's where it is. Sort of like when sometimes people extend their arm and you'll actually see like a piece of fishing wire in their extremity and that's actually a non atomic structure.

00:24:07:05 - 00:24:36:11
Unknown
And what axillary web or porting is, is in my opinion, it there's a vessel that is so when they go in and they do the surgery and you're looking at the lymphatic something, go back. So here we are, we're looking at lymph nodes right? We're looking at the lymphatic system. When they come into the axilla and they take nodes, they don't they don't cauterize the vessel like they would if they were taking something from a vein.

00:24:36:13 - 00:25:00:06
Unknown
They just go in, they take a pooling of tissue and they get out. And the reason is because the lymphatic system is a very delicate system. It makes sense to do it that way. The thing is, is that then you have a lot of scar tissue in the armpit and that scar tissue could be blocking your system from being able to function appropriately.

00:25:00:08 - 00:25:30:15
Unknown
So to me, we work on all of the radiated tissue. We work on the scar tissue from the surgery. Even when people have flap surgery, the scar tissue that forms in, especially in the abdomen, can cause pulling all the way down the leg. So if somebody tells me that it feels like it's really weird, I have something in my muscle, I mean, in the lower extremity, I worry more about blood clot.

00:25:30:17 - 00:25:54:00
Unknown
So when people are complaining of pain and I would say in the upper extremity as well, if you have the pain and you have aching and it's like severe, I would say you should speak to your doctor and, and more than likely they're going to have you go for a Doppler just to make sure that you're fine. So a Doppler is an image of the vessels to make sure that you don't have a blood clot.

00:25:54:02 - 00:26:35:16
Unknown
So the the risk of that comes along with breaking up the scar tissue would decrease the risk of having a problem with any vascularization when we can actually work on that tissue. So rather than waiting for an issue, I prefer for people to come like when they're cleared from surgery, just come. Because then not only will you have a connection to a clinician who can help you, but you can also find out just what's going on with your body so that there are people who come for breast swelling and they think that the breast well, and this lymphedema, but it's actually just post-op swelling.

00:26:35:18 - 00:26:57:05
Unknown
Now, just because it's post-op swelling, that doesn't mean that I can't get rid of it. And if I get rid of it, it's only going to facilitate the next stage of the surgery. And it's also going to facilitate your body to start getting function back in the lymphatics. So if we're proactive and not reactive, we can actually stop them.

00:26:57:07 - 00:27:32:07
Unknown
So I have a huge thing with the medical profession. Whenever I speak to my doctors, I say, I don't know why you guys wait. Why do you wait until someone complains? And it's actually I mean, a lot of people say, well, because if we say that they should go to therapy, they'll think something is wrong. And I don't believe that that's true, because I think that people really think and I think that especially after you go through any type of cancer treatment, all you do is think and reflect and wonder and you're fearful.

00:27:32:09 - 00:27:59:00
Unknown
So isn't it better to have a connection with someone and meet them before you even have any issue? You get your range of motion back, you start exercising and you decrease your risk. As long as we can open up flow, then you're at decreased risk. So instead of having tight radiated tissue in your chest wall or in your groin, if we work on that tissue and we loosen it up, then there's vascularization.

00:27:59:00 - 00:28:30:00
Unknown
You have blood flow and you're at a lesser risk of developing a problem. So I always say, you know, as soon as you feel anything that feels weird in your arm, ask for a prescription to go to therapy and go to somebody who specializes in breast cancer and lymphedema, because if you don't, it might not be picked up on because if you don't measure that, you have excess fluid, then they'll say that you're fine, but you're not making up your symptoms.

00:28:30:00 - 00:28:58:02
Unknown
So there is something happening. But what is it now? I use the Soso as something to help me track how fluid levels are. Do it. But it's a little bit complicated because there's protein molecules. When there's more protein, there's less fluid. So you actually measure at a lower number. And so I struggle with sort of trying to figure out what that means, although they're very good at explaining it.

00:28:58:02 - 00:29:21:03
Unknown
I'm not very good at remembering it, to be quite honest with you. I think that it is a helpful tool, but I do not think that it necessarily can diagnose subclinical lymphedema as early as an individual can, because for that machine you have to have access fluid and for you to know how you feel. You don't to have access anything.

00:29:21:05 - 00:29:58:18
Unknown
So to me, aching or pain or even just an odd discomfort where you just feel like there's something wrong that's a subclinical symptom of lymphedema. So that's something that you should address right away. Even if your doctor says, well, you don't have any swelling, you know what? Can I just go to therapy and see what's going on? And that would be something that then you were actually not only able to advocate for yourself, but we could probably stop the lymphedema and tracks so that it would never advance.

00:29:58:18 - 00:30:31:09
Unknown
Right? So everything lymphedema is one of those things They said that it's a progressive, debilitating disease. I know that that is what is said and that's the definition. But the thing about lymphedema is it doesn't have to be a progressive, debilitating disease. We could stop it early and cure it. We could manage it and just never have swelling again, or we can manage the swelling that you have so that it doesn't get any worse.

00:30:31:11 - 00:31:11:23
Unknown
Or we could just sort of fix some of the function so that you don't have symptoms. So that your arm appears very close to what the other arm looks like, so that you're symmetrical because most people now, especially me, because I mean, if we talk about just breast cancer and we talk about women, which is certainly a generalization, and I realize that, but we're going through a lot of body changes, but we're also it's not like it was when lymphedema therapy came about, when Dr. Lerner opened his clinic in the we we worked we worked every day.

00:31:12:00 - 00:31:39:19
Unknown
We have a lot of things to do. There are a lot of different ways that your lymphedema could be controlled. And it doesn't mean that you can't do your job anymore because you're supposed to wear compression. It's not about stopping all the things that you did before. It's actually about getting stronger and making sure your body's ready to take on impact or a full and actual daily function for you.

00:31:39:21 - 00:32:08:00
Unknown
So your body should protect you. And when lymphedema comes about, it's just it's like that miss wiring where your body is just looking for what it had before. And unfortunately, isn't it isn't there, but we can help it communicate better. That makes sense. Yeah. So, you know, it's it's hard. How does that work, though, when it is your lower extremities?

00:32:08:00 - 00:32:48:01
Unknown
Because, you know, I'm thinking of the patients who are going to watch this and maybe they have you know, one of the gynecologic type of cancers is that the swelling or the heaviness or pain is that are those kind of the same things that they should be mindful of, too? Yes. Yes. And as somebody with lower extremities should swelling should be mindful of the way that their pants fit, both in their waist, in their thigh, in their calf, they should pay to the shoes and socks whether or not they get pitying from the socks.

00:32:48:03 - 00:33:13:02
Unknown
Somebody with the upper extremity swung should pay attention to whether or not their clothes are tighter on one side than the other. It's the same thing if somebody's shoe is too tight on their right foot and they had right surgery, then Is there something going on? Did you have previous swelling? If you had a previous swollen condition, then I think, you know, speak to your doctor.

00:33:13:04 - 00:33:33:22
Unknown
I wish the people could fix the doctor pre-op and say I already have a swollen condition in this leg. So what do I do? And nine times out of ten, the doctor would say, Well, we'll start you on therapy right away. As soon as you're cleared, we'll start. You know, I, I work on people who still have their drains in.

00:33:33:24 - 00:34:04:09
Unknown
It depends on surgeons, though. If a surgeon really trusts a clinician, they'll send people who have their drains. If the surgeon is questionable or just doesn't want to do that because they're afraid of infection, you might have to wait six to start. But then at that six week mark, you better have an appointment because a lot of these clinics have they they'll do your evaluation and they'll say, okay, your next appointment is going to be in eight weeks and then we're going to start.

00:34:04:11 - 00:34:24:15
Unknown
And that's just a terrible thing because you're like so excited that you were evaluated and then you're completely let down because you are not going to be treated. So that's not how my practice works because I would feel absolutely horrible that I had to say that. But I just end up working more hours. But I think that's our responsibility as clinicians.

00:34:24:18 - 00:34:43:15
Unknown
So my responsibility is always to the patient. I think most of us it is, but a lot of people don't have control over their schedule like that. I mean, I happen to be lucky. I own my practice and I don't have a boss, but there's probably there's a reason for every person who owns their own practice to own their own practice.

00:34:43:15 - 00:35:06:18
Unknown
And generally it's because you're not good at listening to all the rules. And I'm not generally a rule follower. So I think for my practice it would be different and you wouldn't struggle. But if you do, hopefully you also have other tools and maybe you go for a pre surgical evaluation so that you can already know what to do.

00:35:06:20 - 00:35:29:17
Unknown
So a lot of people come in and I give them exercises to do post-op. I certainly warn them that their doctor may have a 90 degree limit, which is basically your arm out to your side and your arms straight in front, but you don't go any higher than this. You said shoulder level. So a lot of people who have flap surgery have that limitation for a period of time.

00:35:29:19 - 00:36:00:10
Unknown
The lower extremity is easier. There are in as many precautions because there can't be. And it's interesting because somebody with lower extremity swelling, I mean, what is really there a progression in just don't want to open your scar, which is usually people's biggest fear. I would generally say that once you're put back together, once you're 7 to 10 days post-op, your surgical side is actually pretty healed.

00:36:00:12 - 00:36:27:03
Unknown
You just you have to listen to your physician. And if they give you a warning, sure. But you can actually start doing some stretching exercises at that point. You can start trying to, you know, do wall slides. I don't like the fingers. I'm more of a double handed slide. I like it to be even. But there are things that we can learn to do before we end up with an issue.

00:36:27:05 - 00:36:53:10
Unknown
And so the proactivity really does help. And even getting lymphatic drainage post-op, even if you're not having it. What just happened, even if you're not having a problem, you can go and get manual lymphatic drainage and it can stimulate the lymphatics to work better. And we could that could be done immediately post-op. And actually, you have no precautions for that.

00:36:53:15 - 00:37:18:04
Unknown
We're rerouting the fluid. So the idea is to send the fluid to the healthier areas. So if you have inguinal nodes on the right, you want to send the fluid to the right axilla and you could send it to the other the contralateral groin, and you want to open up the whole system. So there's lots of different ways to do that.

00:37:18:06 - 00:37:53:19
Unknown
This is an image that I drew of basically how upper extremity lymphatic drainage would work. And as you see, there's an area here you can see my inter. Yep. So I, I drew this because in this area of your wrist you have a cluster of lymph nodes that can help with lymphatic flow. So that would be an area where I would take a moment and just massage and I would come just straight here and I would make sure I was opening that up because isn't that a wonderful spot to know about?

00:37:53:19 - 00:38:15:24
Unknown
It's easy to reach. You don't even have to worry about the position of your arm and you could massage that all day. And basically you really just want to make a you. And as long as you're going in an upward direction at the end, you know that you're basically opening it up and you're sending the fluid, any of it in an upward motion in to the lymphatics.

00:38:15:24 - 00:38:46:14
Unknown
So if even when you're massaging a cluster of lymphatics, you still want to go into the upper motion. So it's a hands on technique where you're basically trying to mimic the way that the body works. So if we look at the arrows, they're all pointing that you go in, but watch as you go up to the extremity and over, you come into this cluster of the lymph nodes, which is on the side of your elbow.

00:38:46:20 - 00:39:08:13
Unknown
So you could actually also work that area and you're in an upward direction and then you're stimulating your lymphatics. And I mean, I'm not even saying doing the manual lymphatic drainage. I'm just saying if you do a like a you and you end your you in an upward motion, then you're actually stimulating your lymphatics to work better. So that's easier.

00:39:08:16 - 00:39:24:24
Unknown
I mean, and if you're sitting there and you're at work and you have a desk job and you're just rubbing your wrist, nobody's really going to ask you what you're doing. Sometimes people just do it because it feels good. So, okay, you're doing that. Then you can, you know, you can even come to your elbow. There's no reason that you can't.

00:39:24:24 - 00:39:55:07
Unknown
You just rest your arm on a pillow on your desk and you can actually stimulate. So we're stimulating these areas of the lymphatics, right? So we're stimulating. When I work on people, I start at the collarbone because that's where you see these cervical implodes. Yes. These cervical lymph nodes play a very important role. Now, what we need to know is did someone have radiation to they're super clever killer.

00:39:55:09 - 00:40:20:23
Unknown
They're in for mammary, which are not on this image. For some reason. We have nodes that go straight down within the middle. So when we have a mastectomy, if post-op, if we're irradiated and they're radiating all of the areas of the lymph nodes, they're radiating the super clavicle or the axillary and the infirmary. So that's a lot of radiation.

00:40:20:23 - 00:41:00:23
Unknown
And that's going to damage the lymphatics. So we're stimulating these areas. But really, is this area up to 100 function? No, it was radiated, but we're sending the fluid, which is what the next image over here shows. We're actually rerouting and this area up above our clavicle where we're actually stimulating and it might be radiated, but that's where the terminus is and that's where basically all of the fluid in the end when we're doing manual therapy, is being directed to the terminus.

00:41:01:00 - 00:41:34:00
Unknown
So this is like where all of your drainage goes and then everything gets sort of reabsorbed by your body and we we get rid of waste and we get rid of fluid and anything that we need sort of goes back to where it was. So but if you look, if we look at this surgery and say we had these nodes here removed, so say we had even just three, so we had a few nodes removed from our armpit, but we have some swelling, where are we going to direct this fluid?

00:41:34:02 - 00:42:02:08
Unknown
We're going to direct it across the chest wall to the other axilla because we have healthy nodes over here and we're going to reroute it down the side because our inguinal nodes are also in very good shape. So we're going to borrow the other lymphatic areas, the other lymphatic bundles, if you will, so that we can actually send the fluid back into the lymphatic system.

00:42:02:10 - 00:42:26:22
Unknown
And if we can do that and use these, these are called watersheds. If we can use our anastomosis in our watersheds, then we actually know how to work the tissue. So there's also if we have people turn over, you can do the same thing on the back. We have these watersheds that go across the lower back and across the basically the shoulder blades.

00:42:26:24 - 00:42:49:21
Unknown
So that watershed is very useful. That's another way to stimulate the lymphatics to get the fluid moving so we could get rid of all of that trunk swelling that we get after the a lot of people have swelling that just keeps their arm away from the side of their body and it drives them a little bit bananas. I think anything would drive me bananas.

00:42:49:21 - 00:43:13:24
Unknown
So, yeah, we want to get rid of that. I want to get rid of everything because everything that's abnormal in the body you feel. So I don't want anyone to feel anything. So those are the watersheds. But it's interesting, if we look at this woman over here, they're actually showing you the inguinal nodes. They're showing you what you would do for drainage.

00:43:14:01 - 00:43:45:03
Unknown
You're sending the fluid up, you're having the patient turn over, you're working on the back of the knee, the back of the knee, even though this image doesn't show it as the cluster of nodes over here, you have the same thing here that you have in your wrist that was on the previous image. So you would be able to then stimulate behind the ankle, behind the knee, and then you send it in the fluid up and over, and then you're using the watershed.

00:43:45:03 - 00:44:10:21
Unknown
So instead of it going down, you're going up and you're coming to this armpit. So everything's about sort of borrowing from one area to help the other. And I think our bodies do that naturally, right? We our bodies can fix themselves to a degree. So our body is always borrowing from someplace else. Something times it comes out well, and sometimes it doesn't.

00:44:10:23 - 00:44:41:17
Unknown
But we're our body is always trying to fix itself, but we actually know where these areas are and how to stimulate them. So if we can do that, then we should be able to resolve a lot of swelling. Does that mean you're cured from lymphedema? No, but it does mean that we have it somewhat controlled, and when the swelling is controlled, you're at less risk for infection because your tissue is getting rid of all of that bacteria.

00:44:41:19 - 00:45:03:03
Unknown
It's not sitting in that extremity. That's why we have so many rules about cuts and mosquito bites and everything. Burns. I'm trying to think of the things that happen to us, even a broken toe. It's going to cause an increase in swelling. So they say be careful. But as soon as someone tells me not to burn myself, the first thing I do is burn myself.

00:45:03:03 - 00:45:25:17
Unknown
I don't know. I don't know about the rest of you, but it's very hard to. Make sure that nothing ever happens to you. Things happen to us, and that does not make it our fault. It makes it something that happened and something that we have to take care of. And that's why I have people like me. And there are a lot of people out there like me who exist just to help you get better.

00:45:25:19 - 00:45:49:17
Unknown
So if anything is uncomfortable, if you have that heaviness, if you have that horrible feeling, if you feel like you have fishing wire under your skin and all it does is pull, or like me, it felt like I always say, it feels like pulling. And for me it was battery acid. I was positive it was a vessel filled with bad battery acid that was just burning through my body just to my groin.

00:45:49:19 - 00:46:17:19
Unknown
And then as soon as it broke, it was better. And it was fascinating because, you know, I may teach people, but I don't actually know because I didn't have breast cancer. I had a cord because I had abdominal surgery and it happened to form. But I feel like I was privileged almost to have it because now I know what it feels like and knowing what it feels like motivates me even more to get rid of it.

00:46:17:19 - 00:46:41:14
Unknown
I mean, that is terrible. I wouldn't want anyone to have that for a long period of time. So it's it's wonderful. And also, like, it's it's your it's your gift, it's your curse. But I think if you know how to sort of work it a tiny bit, then you're already working on helping yourself. So I'm hoping maybe we could even make these slides available.

00:46:41:20 - 00:47:02:05
Unknown
Yeah, that and look at them and see those drainage points so that at least you can cross your arms in front of you and you can do above your cervical and you're just doing a U so that you're going so. Okay. So when you go to your collarbone, well, I'm going to do this. I'm excited that we come to our collarbone.

00:47:02:07 - 00:47:27:15
Unknown
You feel that area where it dips right in? Yes. You have to be on the deck and you're on the dip with like I do two fingers because it's really a two finger area. So it's just where that hole is where you fall into. Yep. So you take those two fingers and you're going to make I come out around and step out, round up and up.

00:47:27:17 - 00:47:56:09
Unknown
And basically I use the stop because it's easier. Now my mentor, her name is Linda miller, she's a physical therapist and she's been one for a very long time. She did more evidence based research I've ever seen in my life, and she always told me that you're not supposed to stop. But I trained with a different person and they taught me to stop and I can't stop that.

00:47:56:11 - 00:48:16:18
Unknown
So she tried to undo it and then she said, You know what? It works. I don't know why I'm being such a pain. Just do it your way. And basically I do what feels right. But when I do it, if you're just making a U, you just want your fingers to finish in that upward. Almost like you're taking a scoop of like, peanut butter out of a jar.

00:48:16:20 - 00:48:50:23
Unknown
You're taking those two fingers and you're taking the scoop. You're you're scooping. As long as you're scooping, you're doing well. So you can even do that. Come to your armpit, you can raise your arm and you can put your hand here. And it's the same. You do your little circle and you're coming and you're stimulating that area. So I usually I would say nine times out of ten, I only stimulate the area on the unaffected side because most of my therapy is sending the fluid there.

00:48:51:00 - 00:49:08:11
Unknown
Know there are a lot of therapists who will actually stimulate the other side. I just think it might be a waste of time because we have a certain period of time that we can have our session. I do 60 Minutes hands on, but then I want you to go into the German do exercise. So I have to show that as well.

00:49:08:13 - 00:49:34:12
Unknown
And I want to make sure that everybody sort of knows what's going to work for them. So I feel like on the affected side, it's more about managing the scar tissue, getting rid of it, getting rid of the axillary web. Sometimes people get underneath their breast. In this area, you see how you have lymphatic vessels all over your body, so you see how many there are.

00:49:34:14 - 00:50:08:06
Unknown
So every time there's a vessel like right here where my arrow is. So this area here could cause something called Mandara syndrome. And Manaus syndrome is it happens actually, even when women have breast augmentation, it's a chord that forms and it's painful. And when you go to bend to the side, it's excruciating because you're pulling at your breast tissue or your reconstructed breast tissue, but it's pulling into the ribs.

00:50:08:06 - 00:50:34:05
Unknown
It connects into some of those intercostal muscles and it really hurts. But if we can get rid of it, you're in such better shape. So I actually even have a picture. I'm writing it away. I marked up someone's body because she has horrible Manaus syndrome, but it goes through her whole entire abdomen. I'm not going to find it, but it goes through her whole abdomen.

00:50:34:09 - 00:51:07:06
Unknown
So if you look at her, imagine having a cord that pulls down this way and you have one over here that comes to here and look at how it goes. It goes straight to where you would have an incision site from having your surgery. So the decisions slap the it's all right. So they do alone incision and you add pulp is everywhere.

00:51:07:11 - 00:51:39:22
Unknown
So if people have discomfort in these areas, if you go to raise your arms and you feel a pull here, that is so incredible, you don't even know what to do with yourself. It's not fake. None of the symptoms that anybody has is fake. The symptoms that you're experiencing are real and they deserve attention so that your body feels better because the whole idea of what you went through is so that you are a healthy human who can go on and live your life and that is what a therapist is supposed to help you with.

00:51:39:24 - 00:52:03:00
Unknown
And so I'm working with this woman, and I also actually sent her to a pity because she does something called dry needling, and I thought maybe it would be helpful. So of course I got authorization from the doctor's office, but she feels a little bit better and that's all that I want, so I'm so excited. I don't even care if she cuts therapy with me so he can work on it.

00:52:03:02 - 00:52:25:09
Unknown
I want him to I want him to get rid of it for her because she is a seven year survivor and she still has discomfort because nobody listened to her. And she knows that people told her she has complex regional pain syndrome, which is a it's a pain syndrome. So basically they told her, you're going to have pain for the rest of your life.

00:52:25:11 - 00:52:52:24
Unknown
Take Gabapentin. And she does not have a pain syndrome. She has something real. And if you palpate, you can feel it. So if you feel it, it's there and you need to be evaluated and somebody can help you. So hopefully you have therapists in your area. There are lots of therapists in the world that there are lots of places to access information about where you can find therapy.

00:52:53:01 - 00:53:31:22
Unknown
This all of the schools of therapy have lists of therapists, learn has lists. The National Lymphedema Network has lists. And a lot of organizations like Cher have lists. So you just use your resources. And if you can't find someone, honestly, call me. I will find you someone close enough to your zip code. There's a lot of people who say you have to go to a center for excellence from from learn and it's very difficult because a lot of people don't live anywhere near one of those Centers for excellence, and so they can't go there for care.

00:53:31:22 - 00:54:03:16
Unknown
It can't be their permanent place. You can go for an evaluation if you'd like, but generally their specialization is not necessarily lymphedema. They are a center of excellence of breast cancer care or ovarian cancer care, or both, or bladder cancer or rectal cancer. I mean, you're going to specialty facilities and they have lymphedema therapists, but not every lymphedema therapist is going to be a match.

00:54:03:16 - 00:54:31:09
Unknown
And this is a personal therapy. You can tell it's a lot of manual. There's a lot of tissue in the breast that actually becomes necrotic when that tissue becomes necrotic, I can actually help increase the blood flow. So that's something that I can do. So I would love it if people came because honestly, that area of scar tissue or tissue necrosis is frightening because it's reminiscent of having a lump.

00:54:31:09 - 00:54:49:03
Unknown
So if you find a lot, I that and you felt it right, like then all of the sudden you have a lump and you feel you feel it like it's petrifying. Yeah. So did you really take it? My tumor, actually. What the heck is this thing then? And what were they like? Like you get a lot of scar tissue.

00:54:49:03 - 00:55:06:07
Unknown
Some people develop so much scar tissue and, they wait until the scar is so stuck, and then they send you for therapy. And I wish like, I'm always like, God, I really wish I got to this scar when it was like brand new because it wouldn't have ever stuck like this. But what released it to a degree.

00:55:06:09 - 00:55:34:15
Unknown
But I can't guarantee that I can release the whole thing. It's stuck. It's been radiated, it's been sitting there and I wish I could, but I think the more that we pay attention to our bodies and what's going on, the more that you'll actually realize whether or not you're having any subclinical symptoms of lymphedema, whether or not you're having any cording or man Doors syndrome, and whether or not any of these things that I just thought it would be helpful.

00:55:34:17 - 00:56:08:24
Unknown
But there are also exercises. So, you know, you have to just listen to yourself. Right. But and, you know, like you said, I think it's a learning of what this body is doing now because those feelings will be different and new and something we've never actually had to experience and we will make sure every one that these slides are available for you to look at, as well as another resource.

00:56:09:01 - 00:56:51:21
Unknown
You know, Cynthia, as we're as we're starting to wrap up here, are there any ways that we can I don't know, like what are the best ways to manage the lymphedema to, I guess, keep it from progressing if like you already have it, Are there certain things that we should avoid that would potentially exacerbate it? Everybody is body is different, so it's difficult to ensure there are a lot of theories about not lifting more than a certain weight where they say don't lift more than five or £10.

00:56:51:23 - 00:57:16:05
Unknown
But I don't think that that could be an accurate statement because a lot of people are new moms. A lot of people have young children, and if their kid falls off a swing, they're not going to ask the guy sitting next to them to go pick their child up. They're going to go pick their child up. So I think what we have to do, number one, is a lot of strengthening, a lot of flexibility, exercise.

00:57:16:05 - 00:57:39:17
Unknown
So this is flexibility, exercise. She's stretching. She's making sure that she's getting that range of motion. She's minimizing her chance of having a joint contracture or even a scar that contracts and holds her back. But it has to be slow and gradual. You can't expect yourself to wake up from surgery and be able to this. This is a big angle.

00:57:39:19 - 00:58:04:12
Unknown
So even if you get to say this angle, that's fine. You don't have to even bend your body in the beginning. There are very simple exercises to do that would be helpful. You could get a pulley. I think I have a picture of a pulley. You can even just do diaphragmatic breathing where you're practicing, breathing through your diaphragm.

00:58:04:13 - 00:58:32:23
Unknown
Your diaphragm is actually a supplemental lymphatic. So if you can get your diaphragm moving, you also get something called you thoracic duct moving. And both of them are supplemental lymphatics. So as you do your belly breathing, not only are you relaxing and getting rid of some of your stress, which is always good for the body because that exacerbates almost anything, and you're also increasing your lymphatic flow.

00:58:33:00 - 00:58:58:21
Unknown
You're decreasing the amount of adhesions because you're doing a repetitive breathing technique. So that works wonderfully. So if you're limited in your movement, start off with diaphragm at it, breathe in and see how it makes your body feel. This is the pulley. So the pulley goes over the door and you're sitting in a chair and you're working on bringing your arms up and down.

00:58:58:23 - 00:59:27:22
Unknown
The only thing I'd say about this is I like to do everything with your thumb facing up. So if it's a thumbs, it's good. So when you're doing exercises to bring your arms overhead, thumbs up. The reason for that is when you go to raise your arms with your hands down, actually, even if you've never had surgery, you can really only get to a certain point because it impinges on your shoulder when you have your thumb facing up, it glides all the way.

00:59:27:24 - 00:59:55:15
Unknown
So even when you come out by your sides, if it's all the way with your thumb up, you'll feel the difference. You tell me. So now do it. See? yeah. I'm still feeling that, right. thumbs up. Always. It's my biggest thing. So I don't teach anyone to do any exercise without having a thumb facing up. If you have lymphedema, you want to.

00:59:55:17 - 01:00:25:12
Unknown
You want to go walking, biking, do yoga, something that increases flow. So you want to do some sort of aerobic exercise. Swimming is wonderful because the water actually mimics the bandaging technique that a lymphedema therapist would use. It gives a working pressure to the extremity and as you're going through the water and you're bringing your arm through, you're actually stimulating the lymphatics to reduce your swelling.

01:00:25:14 - 01:01:04:06
Unknown
So very rarely do I have a patient who goes swimming and says I had an exacerbation. Now, as far as weight training, you have to start small no matter what because your body isn't ready and honestly, you don't want to do anything that's going to cause harm. So one of the things about exercise that's so important to know is that if you if you don't work on your strengthening, then the problem that comes in is you end up falling on an outstretched arm and your body is not ready to take that weight.

01:01:04:07 - 01:01:19:06
Unknown
So to me it's more important to actually get your strength back. If you were a mountain climber before you, should be able to mountain climb again. There's no reason that anybody with or without lymphedema should be limited in doing so.

01:01:19:06 - 01:01:34:18
Unknown
because you just went through the fight for your life and you don't want to be debilitated either, do I? So that's why we figure out what's right for you, because if we don't, you'll be great for three months and then you'll stop doing whatever it is that we told you to do.

01:01:34:20 - 01:01:57:18
Unknown
So I think you I think we all have listening problems and we don't like being told what to do. And you know what? We're all grown up and we don't want to be told what to do. So why don't we be partners rather than a boss? Love it. I love it. But the thank you so, so much for walking us through with the DMA one on one.

01:01:57:20 - 01:02:28:02
Unknown
I think it's going to be really helpful and informative and. Also, it'll help empower patients to really get to know their bodies as they are now and speak up. They can and, you know, take those precautionary measures where we can better make sure that we ask questions and notice differences in our body. So thanks again for your time and your expertise and everyone.

01:02:28:04 - 01:02:45:17
Unknown
We will have our slides available and we will add her contact information should you have further questions. After listening to our fabulous look at Gemma. 101 Thank you, Cynthia. You're welcome. It was a pleasure. Thanks for having me. You bet.