Updated: Jul 1, 2020
with Special Guest - The Lymphedema Guru
Our lymphatic system is a critical portion of the body's immune system and yet, sadly, it's barely covered in medical school. Tammey spoke with Joachim (Joe) Zuther who wrote the literal textbook on lymphedema. Joe, also known as the Lymphedema Guru, founded the Department of Lymphology at the School for Physical Therapy in Ulm, Germany in 1990. Having found his passion, he formed The Academy of Lymphatic Studies which provides Lymphedema Therapy Certification courses across the United States. His book, “The Textbook for Comprehensive Lymphedema Management” is now in its fourth edition and continues to be an invaluable resource to medical professionals. Joe and Tammey discuss the lymphatic system, lymphedema staging, risks from breast cancer treatment, risk reduction, and the gold standard of treatment, Complete Decongestive Therapy, or CDT.
“It's kind of a neglected system in the body even these days. Medical students only hear a couple of hours about lymphatic system through their studies, it's a shame.” -Joachim Zuther, Lymphedema Guru Click to tweet
Topics in this Episode:
Lymph – The Neglected System
Breast Cancer Surgical Interventions and the Lymphatic System
Lymphedema and Risk Avoidance
Talking with Health Professionals about Your Lymphedema Risk
Knowing your Treatment Options
Free Lymphedema Resources
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Academy of Lymphatic Studies: www.acols.com
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Tammey Grable-Woodford: Hello and welcome to your killer life. I am so excited today. I have an amazing guest with us who is going to be talking with us about really demystifying some of the, oh goodness, I would say overall mystery about the lymphatic system. Joe, you began your studies into lymphedema management in 1984 and you went on, you founded the department of lymphology at the school for physical therapy in Ulm Germany, and that was in 1990. You are a certified instructor for manual lymph drainage. In 1994 you formed The Academy of Lymphatic Studies, and you also have published a book, The Textbook for Comprehensive Lymphedema Management, which is now in its fourth edition. Is that correct?
Joachim (Joe) Zuther: That's correct, Tammey. That's correct.
Tammey Grable-Woodford: Wow. Well, I only...
Joachim (Joe) Zuther: and it's available in five different languages if I may add so.
Tammey Grable-Woodford: Oh my goodness. Please do, well, and add anything else that I might've missed. I mean, you have such a great history and, and I'm looking forward to diving into this topic with you, but tell us a little bit about you and really how you got started, and why this became such a passion for you.
Joachim (Joe) Zuther: Well, thanks for having me, Tammy. Like you said already, my name is Joachim Zuther, but let's stick with Joe. It makes life easier for all of us. So, my name is Joe Zuther. I am the founder and education director of the Academy of Lymphatic Studies, which is the school that provides continuing education in treatment and management for lymphedema.
And we train healthcare professionals in this therapy since 1994 as you already correct said. I am also the author of The Textbook for Lymphedema Management currently in its fourth edition, but more important, I guess to your listeners, I'm also the author of Lymphedema Blog, which is a website completely dedicated to, provide patients affected by lymphedema and related conditions with all things lymphedema related, it's available on www.lymphedemablog.com and there are a great number of articles geared towards patients with lymphedema. There are more than a hundred articles now, which are written so patients can easily understand the issue. You find articles explaining primary and secondary lymphedema.
There are questions answered when it comes to quality of life issues, treatment issues, risk reduction issues, and so on and so forth.
Lymph – The Neglected System
Tammey Grable-Woodford: Oh my goodness. And a lot of those we're going to just barely touch on today. You know, when I was diagnosed with breast cancer and found out it was stage three, we, we did all the scans and they said, my lymph looked clear. But they still have that standard practice of removing the Sentinel nodes. And I'll be honest, you know, I remember in school, we're all taught about the nervous system. We are all taught about our circulatory system. I had no idea really the importance of the lymphatic system and how different it is from the other systems in the body. And so would you talk to us a little bit about what is that lymphatic system and why is it so important.
Joachim (Joe) Zuther: It is important and as you rightly pointed out, it's, it's kind of a neglected system in the body even these days. Medical students only hear a couple of hours about lymphatic system through their studies, it's a shame.
Tammey Grable-Woodford: Wow.
Joachim (Joe) Zuther: It's amazing. Ah, well the lymphatic system. What is it? The lymphatic system consists of a network of lymph vessels and lymph nodes that work parallel to, or in conjunction with the circulatory system, the blood system.
The lymphatic system is not a closed circulatory system, like the blood system. As you know, the blood system consists of arterial part and venous part but works on a one-way principle, which means that the lymphatic network starts with small vessels in the interstitial tissues in body tissues where they collect fluids and particles and carries the dead lymph fluid from the tissues back into the venous system.
Now, once that interstitial fluid enters the lymphatic system is called, it's called lymph fluids. This is when it's lymph fluid, so there is interstitial fluid, and once it enters the lymphatic system, it's called lymph. Lymph fluid is a clear and transparent semi-fluid medium that contains water, protein, cellular components, unfortunately in some cases, also malignant cells, which is important to understand the function of metastasis, and also fat.
So the lymph components are all a protein, cell components, and particles of fat. Now the two main components that are of interest to us, and to your listeners, are the lymphatic loads of water and protein.
So where does the water come from? You have to imagine that a large amount of fluid, approximately 24 liters or six gallons leaves the blood capillaries via filtration throughout the day. Now that fluid that leaves those blood capillaries supplies the cells with nutrients like sugars and salts and enzymes and so on and so forth.
Now, once the fluid that leaves the cap… blood capillaries is in the tissues, it cannot be returned indirectly into the blood circulatory system but has to be removed by the lymphatic system. So the lymphatics, the tissue fluid enters or blood fluid enters the tissues, and it provides the cells, the body cells with nutrients, sugars, salts, and in turn picks up metabolic waste and cell particles and transports those lymphatic loads back into the blood system.
So it's, it's… like I said before, it's like a complimentary system to the blood system.
Now, those small lymph vessels that I mentioned before are called lymph capillary. So those lymph capillaries collect the lymphatic load of water and proteins and moves that fluids through ever-larger lymph vessels from the lymph capillaries into the pre-collectors, and from there into the collectors and the lymph collectors move or transport the lymph fluid into the lymph nodes where harmful substances and toxins are filtered out.
And from there the lymph continues with ever-larger lymph vessels or ducts or collecting vessels back to the heart. And, throughout the day, approximately two to three liters of lymph are returned via the lymphatic system into the blood system. So, you can see that just with lymphatic water, the lymph system plays a very, very important role in the body's fluid management.
So, water is one of those lymphatic loads. The other important lymphatic loads are proteins, those also come from the blood, in the course of 24 hours, at least half of the proteins that circulate in the blood will leave the capillaries and travel to the interstitial spaces. Now, those proteins are needed for growth, for metabolism, they maintain proper pH levels. They transport nutrients, provide energy, and so on, so forth.
But as with the water, once the proteins leak out of the blood circulatory system, they cannot directly return back into the blood circulatory system, but also have to be moved by the lymph system. So those two main lymphatic loads, water and protein, are important to understand to understand lymphedema itself.
Lymphedema, the definition of lymphedema is an accumulation of proteins and water in the tissues, and that's a very important difference to other swellings like regular edemas. Lymphedema and edema are not the same. Lymphedema has a high protein content, where regular swellings, like if you sit too long or if you stand too long and you accumulate fluid and you're ankles, for example, this is not lymphedema.
This is regular swelling, like an excess of water in the tissues, but it does not have a higher protein content. So that's important to understand.
Tammey Grable-Woodford: Wow.
Joachim (Joe) Zuther: Now another important factor I need to mention, the lymphatic system does not only play an important part in fluid management and the removal of toxins and cellular waste, but it also plays a very, very important part in the body’s immune defense.
Now, in addition. To the lymph vessels and the lymph nodes I already mentioned, there are lymphatic organs. Like we have primary lymphatic organs like the bone marrow and the thymus where lymphocytes are produced and those lymphocytes then are circulated into the secondary organs, like the lymph nodes and the spleen, for example, where they provide a very, very important role in the body’s immune defense.
So that's in short, the lymphatic system, the components, and the function of the lymphatic system.
Tammey Grable-Woodford: I don't know how you would cover all of that in a few hours of med school. That is a very complex system.
Joachim (Joe) Zuther: Well, I mean, you know, we just covered it in like five minutes. So, you know, cause it's just a basic overview. And I tell you, you know, I don't want to talk down and talk down on doctors and the medical professionals, but you know, many, many doctors, and I know a lot of doctors, they have a hard time understanding the lymphatic system.
Tammey Grable-Woodford: Well, and you know, yes, we did an overview, but then you tie it into everything else within the body and, and it gets far, far more complicated than that overview.
Joachim (Joe) Zuther: Exactly. So what, know what if the lymphatic system works properly, there is no issue, but you know what? They are instances where you can have a disruption of lymphatic system, of disruption of the lymph flow, and then you end up with issues.
Tammey Grable-Woodford: Yes. So in my case, I had my sentinel nodes removed and they, unfortunately, both did have a metastasis, micro-mets in them and my general surgeon at the time, we had the conversation about going back and removing more nodes and he actually, he left the choice up to me saying that they are starting to find more long term side effects with removing all of the nodes rather than just removing the sentinel nodes.
But the other interesting thing he said to me was that once you re… identify and remove the sentinel nodes, it's not like you can go back, they're not like in a chain. So, it's not like you can go back and remove the next couple. You kind of have to remove them all.
But that also kind of leads me to the, to the other question of, you know, what impacts with mastectomy, bilateral mastectomy, lumpectomies, the subsequent radiation, and then of course, the Sentinel node removals. And I know that is a lot, but what are the impacts to the lymph system when it comes to those.
Breast Cancer Surgical Interventions and the Lymphatic System
Joachim (Joe) Zuther: Yeah. Well, mastectomies and lumpectomies are procedures that are performed to treat breast cancer, and I'm sure, as you know, and as most of your listeners know, breast cancer is the most common cancer in women in the Western hemisphere. Generally, it can be said that one out of eight women in the U.S. will develop breast cancer throughout their lives.
And just before our interview here, I checked the national cancer Institute website for the current numbers. And I can tell you from the NCI website that, over 276,000 new cases of invasive breast cancer and over 48,000 cases of noninvasive breast cancers in females and 2,600 breast cancer in males, will be diagnosed in the United States in 2020.
So that's a large number.
Tammey Grable-Woodford: Wow. Yeah…
Joachim (Joe) Zuther: Now again, lumpectomies and mastectomies are procedures that are both performed to remove the breast cancer, and obviously to save the patient's life. So those are very important and necessary procedures. And while both procedures are effective, they have different benefits and risks.
Now a lumpectomy. What is the difference between lumpectomies and a mastectomy? A lumpectomy is a surgery that removes the breast cancer itself while preserving the mammary glands. Those lumpectomies are used for less invasive forms of cancer. However, many patients need additional radiation to destroy any remaining cancer cells and prevent the reoccurrence of cancer as opposed to a lumpectomy.
A mastectomy treats the breast cancer by removing the entire breast, including lymph nodes. There are different types of mastectomy procedures. There are simple mastectomies. With simple mastectomies, mammary glands are removed and no lymph nodes are removed, so it's just a removal of mammary glands. It's for those cases where women looking to prevent breast cancer from ever recurring.
I'm sure many of you have heard of some well-known people, actors, and actresses recently that had the procedure done. So that would be a simple mastectomy. Then there are the radical mastectomies or radical mastectomy, removes the entire breast including the cancer, it removes the lymph nodes and the auxiliary lymph nodes and also the chest musculature, in particular, the pectoral muscle type would be a radical. Very seldom they performed, and only in those cases where the breast cancer is very invasive and spreads into the muscles of the chest.
Now, and then there's the modified radical mastectomy. With this procedure, the mastectomy removes the entire breast, and some of the lymph nodes however, the muscles are not removed would be still lumpectomies and mastectomies.
Now. As I said before, one is absolutely necessary to remove those lymph nodes that contain cancer cells. It is important to consider that any removal of lymph nodes, which is the case with lumpectomies and mastectomies, and the subsequent damage of lymphatic vessels. Remember I told you before that lymph collectors. Connects to the lymph node.
So if you remove lymph nodes, you have to sever those collectors and obviously that would have an impact on the efficacy or the sufficiency of the lymphatics. Now, again, with the removal of lymph nodes, there are also different procedures. There are Sentinel lymph node biopsy these, and they are the axillary lymph node biopsies, complete axillary lymph node removal or ALNB
Now. the Sentinel lymph node biopsy is the most common and least invasive way to remove the lymph nodes are the first nodes, the first lymph nodes into which a tumor drains. So what happens during the surgery, a surgeon checks a radioactive tracer or non-toxic dye around that tumor, which then enables the surgeon to identify.
Those lymph nodes where that malignant mass frames into, into the axillary lymph-nodes. And, the surgeon then removes those lymph nodes those sentinel lymph nodes, sends them to the lab while the patient is on the operating table. And if they come back negative meaning if there's no cancer cells detected in those, sentinel lymph nodes.
In most cases, no more lymph nodes will be removed. However, if those Sentinel lymph nodes are positive, that means metastatic cancer cells are detected in those lymph nodes, then the surgeon continues to remove more lymph nodes. So, in both cases, you have a disruption of lymphatic system, and that of course, can lead to an accumulation of fluid into the tissue.
So if you remove the lymph nodes, in the underarm, the axillary lymph nodes then the lymphatic loads coming from the arm would accumulate. So you may end up with a swelling of the arm. If you have a removal of lymph nodes in the groin area, the inguinal lymph nodes, you would have an accumulation of lymph fluid in predominantly in the lower extremities.
However, they are not only, you know, the axillary lymph nodes and inguinal, there are also lymph nodes in the neck, so we have head and neck cancers where those lymph nodes need to be removed or radiated. Then you have an accumulation of lymphoid in the head. So it's a, it's a very involved issue.
So if lymphedema, if, if the accumulation of protein-rich fluid in the tissues is caused by breast cancer surgery, those lymphedemas are labeled as secondary lymphedemas. If a patient has breast cancer and those lymph nodes are removed. Those patients would have a good chance of development of lymphedema. While the numbers are not consistent in the data of the incidents of lymphedema, and most statistics are available on those related to breast cancer lymphedema.
They are not really consistent and not quite reliable. However. It was reported at the five-year cumulative incidence of lymphedema following breast cancer surgery. Women, remember it's about 42 cancer, 42 I'm sorry, 42% in the United States. So that's a large number of women that can be affected by secondary lymphedema.
Tammey Grable-Woodford: Wow. That is a large number. And you know, I have, once you're diagnosed with breast cancer, you, you get, you gain a bunch of “breasties”. Y'all find each other, right? Because you're trying to navigate this together. And one of the things that kind of surprised me, and I found this to be common, is that we don't get a lot of information.
Oftentimes from our providers. And it varies a lot. And I'm not picking on the system at all either. It's just, it's very interesting to me that I pretty much did my own research and decided to get a bracelet, for myself after having just the Sentinel nodes removed. And I have a girlfriend who had all of her nodes removed and, and she had surgery the same month I did. And she ended up with lymphedema a few months later. But. There's still risk with each of those procedures and the impacts. And so a lot of the questions I see. Are questions like what are the risks of needles and blood pressure to that arm? I guard that arm like you wouldn't believe. Nobody gets to touch it.
And whether or not lymph nodes grow back. That's another question that I've seen and, and I honestly don't know the answer to and whether or not if they don't grow back, if the system reroutes itself at all, like you will see with other. Comes in the body and then exercise. That's another one too. What level of normalcy can you go or are there risks that are created if you do certain things over other things.
Lymphedema and Risk Avoidance
Joachim (Joe) Zuther: Yeah, I mean, you know, risk avoidance. So first of all, you know, as you already mentioned, and I'm sure some of your listeners may well know. Uh, there's not a lot of communication, you know, post-surgery post-mastectomy or post lumpectomy surgery when it comes to risk reduction practices. You know, that, you know, it's first of all, you know, 42% of those women.
That's half cancer and reports or accounts of lymphedema they have, well they have lymphedema already. However, there is a large number, like 48% so the remaining 50% of women do not develop breast cancer post-surgery. However, even if you don't have lymphedema directly after surgery. Secondary lymphedema, post-mastectomy post lumpectomy could occur immediately after surgery, sometimes it occurs weeks, months after surgery, sometimes even 20 years or longer after surgery, and some women don't develop lymphedema at all.
However, they are always at risk of developing lymphedema because they have been damaged sufficiency that the efficiency of the lymphatic system is impaired. So if you do anything that could upset that fragile balance with the reduced transport capacity of the reduced efficiency of lymphatic system, uh, if you, uh, do anything that could offset this delicate balance, you could end up with having lymphedema.
So it's very important, you know, to not have lots of draws, for example, in the affected arm.
And if you have a bilateral mastectomy, then you know the nondominant arm, for example, should be for blood pressure readings. Blood pressure readings should not be taken on the affected extremity. For example.
Now, when it comes to exercises, that's a whole new, uh, that's a very involved topic. You know, exercises are important for patients that are affected by lymphedema.
The most important forms of exercise support, lymphatic return, like those are called decongestive exercises. So, you know, risk reduction practices. You know, it's, it's a long, long conversation, but you can have, it is important to avoid any injury that would lead to an increase in lymphatic load that could cause infection.
If you have an infection and your lymphedema extremity, that lymphedema will increase in volume. So it's very, very important to avoid anything that could cause the lymphedema to increase. And it's always a good idea. For example, if a patient that has lymphedema or that is in danger of developing lymphedema, to always carry, you know, an alcohol swab or Band-Aids with them.
So if you injure yourself or if you have a cat, for example, you play with your cat, or if you go into the garden and cut back your roses and you get a little puncture, it's important to clean that wound immediately and put a Band-Aid on it. Also what is important when it comes to risk reduction practices if you have, if you had, if you had, if you don't have lymphedema, even if you have lymphedema, is to avoid tight clothing for example. You know bras-straps, for example, those small tiny bra straps are often a contributor contributing factors to the development of lymphedema. There are those pads you can place underneath your bra straps, you should wear comfortable underwear. You should not wear any bracelets on rings or rings that are restrictive. But you know, it's like I said, there are many, many more things you have to should be careful with. You should not be afraid to continue living, obviously, you know, you still have a life you have to live, but if you're interested or if your listeners are interested to find more about this, you can go to Lymphedema Blog and click on the risk reduction practices.
Tammey Grable-Woodford: You know, it wasn't until… and there is so much. You're right. I mean, we could have a week-long podcast probably, and not, and still not get down to too far into the depths of where we could go. Listening to you. I'm thinking about myself with a bilateral mastectomy and I had the sentinel nodes removed from the left, and I get my blood pressure and my blood draws and everything on the right and until I came across your blog and across your videos, I did not fully understand the staging and even the risks of doing that. And my right arm, the one that with the blood draws and the and the blood pressure is also the dominant arm. So… point taken about still living your life and not being afraid. But I will tell you after some research I’m like, maybe I need to ask them to tackle my ankles for this stuff from here on out.
Talking with Health Professionals about Your Lymphedema Risk
Joachim (Joe) Zuther: Yeah, but you also have to, I mean, the healthcare professionals should do anything to avoid the onset of lymphedema and the healthcare professional usually knows that. Most nurses, they are well aware of the dangerous of lymphedema. With doctors, not so much. But the nurses in general are. Especially if you wear a bracelet and if you're an informed patient and you communicate with those nurses.
However, you know, if there's any emergency and you have to have an infusion or whatever, or if you have to go for an MRI or a CT and an IV line is necessary, I mean, those things are just necessary procedures, you know what I mean? But if possible, always avoid it. Especially if you have lymphedema, like you know, the different stages of lymphedema.
There is the subclinical latent stage. So you know, if you had a lumpectomy or mastectomy and you do not develop lymphedema, that does not mean you are not in danger in developing lymphedema. You know, you don't have a visible onset of swelling, but you always have to risk of developing lymphedema because the lymphatic system is impaired. So you have to be always very, very careful.
Now, once you have lymphedema, you know lymphedema is a progressive condition. That means it doesn't get better by itself. You know, there is no cure for lymphedema. It can be well managed, it can be well-maintained, but so far we don't have a cure, there is no magic pill. There is no injection or anything that could cure lymphedema, so you have to be careful.
Once lymphedema develops, it's usually, you know, it's called stage one. Which is called the reversible stage of lymphedema. That means patients that have the onset of swelling, you know, you see an increase in volume. However, in, you know, in your clothes may become to tight and you know, it's, it's a cosmetic issues, cosmetic issue. So in, in the earliest stage of lymphedema, stage one lymphedema, which has also labeled reversible lymphedema.
That's really can be completely reversed by appropriate treatment. You know, the treatment is available. It's not that you are… that you now have a life sentence when you have to run around with a swollen extremity, be that upper or lower extremity.
However you need to, you need to go for appropriate treatment because if you don’t the lymphedema progresses. It goes from stage one to stage two, stage two lymphedema, in, in those cases lymphedema in stage one is usually very, very soft, and pitting. However, the longer lymphedema persists, the harder the tissues get and the more difficult it becomes to remove the excess lymph fluid.
So that would be stage two, which is also called spontaneously irreversible lymphedema. And if you still don't have any treatment done or if you just don't have access to treatment to the treatment of lymphedema, or you don't know about lymphedema, then your lymphedema can develop into a stage three. Which is labeled lymphostatic elephantiasis and those cases can be really, really difficult to treat.
Sometimes they reach monstrous proportions to volume increases, the tissue become harder, and harder, there is usually the lymphedematous tissue is very susceptible to infections, so patients develop cellulitis or encephalitis with a further complicated situation. So it is really, really very important to treat lymphedema as soon as possible.
Knowing your Treatment Options
Tammey Grable-Woodford: And that leads me to my next question, which I know could be a really long conversation. So just sort of at the very high level, what are some treatment options? I know there's machines, there’s endermologie, there are sleeves, there's exercise, so a massage. So what are some of the options that folks could ask about? Could inquire with their nurse navigator or their physicians, or asked about.
Joachim (Joe) Zuther: Well, there is one longstanding, treatment option for lymphedema, which is called complete decongestive therapy or CDT. CDT is listed, for example, on the websites of the American cancer society, the National Cancer Institute, the international society of lymphology, the national lymphedema… lymphedema network as the main component in the treatment and management of primary and secondary lymphedema. It’s the gold standard.
Complete decongestive therapy is the gold standard.
CDT is performed by certified lymphedema therapists, CLTs. CLTs, this is what we do here at the Academy of Lymphatic Studies. We train those healthcare professionals, which could be physical, occupational, massage therapists, nurses, and doctors, and we teach them incomplete the congestive therapy.
Now complete decongestive therapy is a multi-component treatment approach. It consists of four treatment techniques, which are applied in combination. Complete decongestive therapy consists of manual lymph drainage, compression therapy, skincare, and decongestant exercises.
What happens is if you have lymphedema, and you come to a certified lymphedema therapist, but you have to make sure you see a certified lymphedema therapist, and this very important.
A certified lymphedema therapist, if I may add that real quick, a certified lymphedema therapist goes to 135 hours of training in the certification of lymphedema, so that's very important. Those therapist needs to be trained, appropriately, and thoroughly because you can do more harm than good if you touch a lymphedema patient.
For example, if you go and have a massage on your lymphedematous extremity, like a regular Swedish massage, most likely you will worsen the symptoms. You will increase the volume of that extremity. And that's also an issue, which you know, would require a longer conversation, but it's also on Lymphedema Blog.
But again, you know, I don't want to tell all your listeners, don't ever go for a massage. That is also not what I want to say, but for example, if you have the lymphedema on your right arm, just don’t have a massage on that right arm. You can have a massage on your lower extremities, you can have on your back, on your front anywhere, but not on the affected extremity.
So manual lymph drainage, one component of complete decongestive therapy. Manual lymph drainage is a very gentle and superficial manual treatment technique that manually reroutes stagnated lymphedematous fluid from the affected extremity into areas with sufficient lymphatic drainage.
For example, if you have an axillary lymph node dissection on the right side and you have upper extremity lymphedema, which is located on the right side, your lymphedema therapist would reroute that stagnated lymph fluid out of your affected right extremity into lymph nodes that are still intact, meaning the lymph nodes, the contra axial lymph nodes on the other side, and also into lymph nodes that are located in the groin, the right inguinal lymph nodes.
So manual lymph drainage gently reroutes, manually reroutes, lymph fluid out of those insufficient areas into areas where you have a sufficient lymphatic system. But again, manual lymph drainage and massage are two completely different things. The only thing that manual lymph drainage and massage have in common is that both techniques are applied manually. That's it. That's it.
As you know, and I guess most of your listeners that ever received a massage, like a regular Swedish massage, with massage therapy your aim is to treat muscles, tendons, ligaments, and those anatomic structures. Those are deep structures.
Now, lymphedema manifests itself in the superficial tissues. That means above the fascia, which is above the muscle layer. That lymphedema manifests itself within the skin, within the subcutaneous and the skin. So very, very light pressure is needed to reroute that fluid out of the affected areas. And if you would use deeper techniques like massage for example, which I mentioned before, you could have the opposite effect because if you apply massage, you will have an increase in blood flow.
That was massa… that is what massage does. Massage… one goal of massage is to increase blood flow into areas where you have injured muscles and you know, provide nutrients to those muscles, and so on and so forth. However, if you have lymphedema and you increase the lymph flow to that area, you will make the lymphedema worse because if you have an increase in blood flow, you have an increased rate of fluid filtration, which would, in turn, increase the lymphatic load.
Like that, that part of the lymph… of the tissue fluid that needs to be removed by the lymphatic system, which in our case or in the case of lymphedema, is not sufficient. So big, big difference. Like manual lymph drainage is not massage. Just I need, I always say that for 35 years or longer because, oh, you know, people tell me, oh, you even use that before you go to massage.
No, no, no, no. You don't go to massage, you go to have manual lymph drainage, which is part of complete decongestive therapy. So manual manual lymph drainage is part of complete decongestive therapy. Then there is compression therapy, which is applied directly after the manual lymph drainage. It's important because if you have lymphedema, the elastic fibers of your skin lose their elasticity.
So, if you evacuate lymph fluid manually with manual lymph drainage and you do not follow up with compressing the affected body part, lymph fluid would reaccumulate in a matter of hours.
So it's very important to follow up with compression therapy. So those are the two main pillars of complete decongestive therapy.
Another pillar is skincare. Lymphedema, the skin tends to be very dry and scaly. It's very susceptible to infections. So it's important to keep the skin moist, to maintain the proper pH level, usually around five. So the neutral to the slightly acidic range. So, lotions and, and appropriate lotions are applied and the patient is also instructed to perform certain exercises.
But wearing the compression material and materials, let it be compression bandages or compression garments. So there is a, an appropriate resistance to whatever working in musculature underneath. And the goal of those deconstructive exercises is to further remove lymph fluid from the affected extremity. So, this is in a nutshell what complete decongestive therapy does.
Now, there are different phases of CDT. There is an intensive phase in which the patient is seen on a daily basis. That means five days a week, Monday through Friday, until, the lymphedema is reduced to a normal, or your normal size. In an uncomplicated upper extremity lymphedema case, for example, can take anywhere between two and three weeks. So, 10 to 15 treatments in most cases. It takes a little longer with lower extremities and, once the extremities decongested, like during the intensive phase of therapy, where the patient is seen on a daily basis. Once the extremity reaches a normal size and measurement, which the therapist takes on the patient's extremity plateau, then the therapist, then the treatment automatically goes into phase two of CDT, which is the maintenance or the self-improvement phase where the patient maintains and improves the results that were achieved in the first place with CDT.
Yeah. And that involves self MLD, like self manual lymph drainage, like the therapists (patients) are instructed by the lymphedema therapist to perform very easy to learn and very easy to administer, administer techniques of manual lymph drainage. The patient’s instructed to wear their compression garments. The patients are instructed in proper skin care and exercises.
So, in a nutshell, this is CDT, the components of CDT of complete decongestive therapy and the phases of complete decongestive therapy, the intensive and the maintenance or improvement phase.
Tammey Grable-Woodford: Wow. So much information. And, I have to tell you, the more we talk, the more questions I have,
Joachim (Joe) Zuther: I’m sure.
Tammey Grable-Woodford: Fortunately, you have compiled on Lymphedema Blog a huge amount of resources that are no cost to all my breasties out there that are listening and wanting to learn more, and especially about the phases. I know I do. I've, I've been to this point, I don't have active lymphedema. And it's something that I try to be as careful and cautious about as possible. But honestly, Joe, it wasn't until I came across your information that I realized that there were additional steps that I could and should be taking. And the other thing on your site is that out on the Lymphedema Blog you have “find a therapist.”
Did you want to talk about that?
Free Lymphedema Resources
Joachim (Joe) Zuther: Yeah. There are many, they are not only articles, and for those of you who plan to visit Lymphedema Blog, if you're interested in certain topics, there's a list of of articles, like an index on the left side of the page and you just click on any article and you know it comes up and you can read whatever interests you. Obviously, if you have upper extremity lymphedema, you may not be interested in learning about lower extremity lymphedema. So there's an index.
And on the top of that page, you do have other functions, and one of those functions is to find a therapist. Like I said before, it's very, very important to go to a lymphedema therapist that is properly trained, that meets the requirements set by Lymphology Association of North America, LANA, which, which requires 135 hours of training. And if you click on that link. You are redirected to a page that lists schools, not only the Academy of Lymphatic Studies but the other big schools in the United States that provide lymphedema training. And if you click on any of those links, usually you are prompted to put in your zip code, and in return, you'll receive an email that provides you with a list of certified therapists in your area. And I always hope that patients are lucky because there's still a severe shortage of lymphedema therapists in the United States. Currently, the statistics are, there is one certified therapist to every 100,000 lymphedema patients. So, yeah, it's amazing. There is an extreme shortage of trained specialists in this field.
Tammey Grable-Woodford: That's incredible.
Joachim (Joe) Zuther: I know. I know. I know.
Tammey Grable-Woodford: Well, as we begin to wrap up, what would you like to leave our listeners with and what, where can they find the book? I'm assuming that that is available on Amazon, but is that something that would be of interest to someone like us, or is that more for the medical professional?
Joachim (Joe) Zuther: It's good that you mentioned this because this, because this should not be a, you know, a push to sell the book. And most likely it won't be, because the book is very expensive. It's a medical textbook. It's anywhere between 60 and a hundred dollars, wherever you buy. It's available on Amazon. However, I mean, if you have the means to buy the book, please do so.
There is a large section in that book that is geared towards patients. I mean, it's geared towards the medical professionals, you know, universities use that book to teach patients, lymphedema schools use that book to teach patients, but it's really not necessary for your listeners to buy that book because everything you need to know is on Lymphedema Blog exactly for that reason, because not everybody has $60 dollars laying around, you know? And it's not necessary.
So let's go to Lymphedema Blog. It's free, you know, it's always maintained. It's always up to date. And if you find any, if you can’t find any topic that you are looking for. Please shoot me an email. My email is on the website. I think it's under the author information. Shoot me an email. If I oversaw anything in the past, I don't know how many years I do that blog, let me know and I make sure I write an article within a couple of days and publish it. So if I may leave you with that.
Again, it's not necessarily to buy the book, but please, if you wish, so please do so.
It would make me happy too, but please, it's not necessary. Go to Lymphedema Blog, www.lymphedemablog.com. Anything you need to know, hopefully anything you need to know, is on that website.
Tammey Grable-Woodford: Wonderful. And you also have the Lymphedema Guru Facebook page, which is also where I found you. And you do post there regularly and you post some great articles, some, some breaking stuff and, and so that's really great too.
Joachim (Joe) Zuther: Well, that's what I, that's what I do. So, you know, it's not a big deal for me because that's all I do. I'm the Educational Director at the Academy, and my job is to be always up to date with new developments. I go to conferences, throughout the States, obviously these days it's a little bit difficult since we are in the middle of this COVID-19 crisis. If we listen to the podcast in a couple of years from now, hopefully, hopefully everything will be over. But unfortunately right now there are no lymphedema conferences, but this is what I do, you know, I keep up to date and I share that information that is important to lymphedema patients on the Lymphedema Guru Facebook page and those posts are daily.
Tammey Grable-Woodford: Wonderful. Joe, thank you so much for your time today. Taking a moment to talk with us and, and really demystify the lymphatic system and talk to us about staging, which is something I didn't know. I learned so much from our conversation today. I appreciate you. Thank you.
Joachim (Joe) Zuther: I'm very glad. Thank you for having me. Thank you. And have a good weekend, Tammey.
Tammey Grable-Woodford: Oh, you too. And for our listeners, thank you so much for listening. And if you have any questions, all of the links will be in the show notes. But again, it's lymphedemablog.com or out on Facebook, you can find the Lymphedema Guru. And if you haven't already subscribed, please give us to subscribe and like, and until next time, keep building your killer life.
Remember the conversations you hear on the show are based on unique experiences and varying diagnosis. And we all had our own medical teams. We are not giving medical advice. So if you hear something inspiring, please talk with your providers.
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