Lymphedema: Basics, Management and New Research

MD Anderson Cancer Center
Date: 05/16/2011

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Lisa Garvin: Welcome to Cancer Newsline, a weekly podcast series from the University of Texas MD Anderson Cancer Center. Cancer Newsline helps you stay current with the news on cancer research, diagnosis, treatment, and prevention, providing the latest information on reducing your family's cancer risk. I'm your host, Lisa Garvin. Today, our guest is Kathleen Smalky. She is an associate professor of Internal Medicine here at MD Anderson and our subject today is lymphedema. Dr. Smalky, let's start with the basics. What is lymphedema?

Dr. Kathleen Smalky: Actually, lymphedema is a very simple concept, is the development of fluid or accumulation of fluid in the body tissue because either you're producing too much fluid or your lymphatic system is incapable of fully removing the fluid that's produced.

Lisa Garvin: And this tends to happen when cancer patients, particularly breast cancer patients, get lymph nodes removed.

Dr. Kathleen Smalky: It actually can happen in many different situations. Many people experience a small amount of lymphedema if they're in an airplane and they notice their feet swell a little bit. Because what happens is that it's a very transient situation where your body is producing fluid and from that small amount of time, your own lymphatics even though they're not damaged anyway, cannot effectively remove the fluid. Once you're down the ground and you're moving about, your muscles are helping and you can help remove the fluid. So individuals that develop lymphedema can either have a problem with their lymphatic system either in terms of its anatomy or how it functions from birth, that's a congenital type or there are types of lymphedema that develops because of an acquired situation either infections or trauma. And in the cancer patients what we see, is we see that they can have develop lymphedema many ways from cancer either from the cancer itself or its treatment.

Lisa Garvin: What do we see mostly, and of course when we think of lymphedema, we usually think breast cancer.

Dr. Kathleen Smalky: Correct.

Lisa Garvin: And of course, a lot of breast cancer patients are fair amount get lymph nodes removed. So if they are getting lymph nodes removed, does that mean they automatically get lymphedema?

Dr. Kathleen Smalky: Absolutely not. So let's backtrack a little bit. If we think about--and we can--that's a very good example used, a breast cancer--a patient with breast cancer and has been treated that developed lymphedema. How could they develop lymphedema? Well first of all, they could have the cancer itself invading the lymph nodes, so that would cause an obstruction or their tumor could be so big that it's pressing on the lymph--lymphatic vessels, so the vessels cannot serve as good conduits of the fluid. Once they're treated either through radiation which might damage lymphatic vessels and the lymphatic vessel's ability to move or through surgery where we removed some of the lymphatics, so you don't have enough vessels to remove the extra fluid or through as I said radiation or any type of trauma from the surgery. It's interesting you bring up the lymph node because in--we use to always take a whole lot of lymph nodes out amongst those women who had a significant number of lymph nodes removed, one of the mysterious things is not everyone develop lymphedema. So two women could have had the same number of lymph nodes removed, have the same treatments and one might develop lymphedema and the other one might not. So that's a very interesting thing that we're trying to understand is it because of the difference in anatomy, the difference in functionality between those two individuals. Then we'd move to this lympha--to the sentinel node biopsy where only may be one lymph node is biopsied and you would think, "Well, we've--we didn't remove a lot of lymph nodes. We only took a little bit of one." And still some women develop lymphedema from that.

Lisa Garvin: But it's not particularly connected with breast cancer or women. I actually met a fellow few years ago here at MD Anderson who was a prostate cancer patient who have lymphedema in his legs and I remember being surprised because I always thought it was the province of women.

Dr. Kathleen Smalky: Absolutely you're correct. It has very little to do. We think whether it's a man or a woman. It's more has to do with the type of intervention or the type of cancer that they've had. So woman could have had uterine cancer, a man could have prostate cancer, bladder cancer, or even head and neck cancer individuals. We see lymphedema in all of them. And one of the--another kind of really cool mysterious thing not only do some individuals with the same treatment, some will develop lymphedema and some will not, the onset of lymphedema maybe 2, 3, 4, 5 years. So an individual once who had had cancer therapy of course, prostate, it had two lymph nodes removed. Three years later, he was playing golf and his wife said, "My goodness, your leg is swollen." He didn't notice a thing and that was his onset.

Lisa Garvin: Is it more common in the arms than the legs or is it kind of equally distributed lymphedema?

Dr. Kathleen Smalky: It's actually--It can be in the arms, it can be in the legs, it can be in the head and neck, your eyes, it can be in your throat, it can be on your trunk, so almost any body part. We tend to see it in places where gravity, okay, is pulling fluid down. So, the work of the lymphatics is more challenged. If you think about it, you can have fluid in your big toe, in your lymphatic vessels and use to move that all the way up to where your heart is, to be able to remove that extra fluid. So we see it in more dependent areas.

Lisa Garvin: What about self care? That seems to be important in the treatment of lymphedema. I mean, you know, people will come in and get diagnosed but a lot of it is the self care, the compression, the wrapping. How vital is that for people to really follow up and stay on top of their self care?

Dr. Kathleen Smalky: It is the cornerstone of all care of lymphedema. Self care, individuals need to be very diligent and I kind of think of it as a [inaudible] task where every day, you know, you roll the rock up the hill and if you don't pay attention to this, it's gonna roll right back down. So every single day you must treat, treat, treat. You take care of your skin through keeping your skin clean and dry and lotioned. You take care--to not have too tight of garments or anything that might cause cuts or scrapes. If you develop a rash it needs to be paid attention to immediately. And your actual treatment, your own self, what we call manual lymph drainage, you do it yourself or you use the other types of drainage such as a pump or bandages which all fall under this category of complex decongestive therapy. You have to wear your hose, your garments. You need to use the wrapping or some type of external compression, many types that exist to keep the fluid down. Because if the fluid starts to accumulated, it becomes larger and larger and then one of the--I think important things that happens is that it becomes irreversible. In this area of the tissue where the fluid is collecting, this fluid is not just water, it has protein, it has many different types of chemicals and it also has cells that promote fat. So soon, this--maybe an arm or leg that you think is swollen with fluid. If it stays that way, later we see it has scar tissue, it has thickened tissue and it has--a lot of the fluid has been replaced with fat and we can't get rid of that by compression. So it's very important.

Lisa Garvin: And I've heard from a therapist years ago that they said that the lymph fluid kinda gets the consistency of honey. It tends to get more viscous and harder to move through the system.

Dr. Kathleen Smalky: It tends to--Lymph fluid itself is a little thicker but what happens is that the water molecules might be more easily removed therefore what's remains tends to get a little thicker.

Lisa Garvin: Now, is lymphedema a chronic condition? I mean if you stayed on top of it with the self management, could you actually be lymphedema free or do you live with it your entire life?

Dr. Kathleen Smalky: It is a non-curable, progressive, dysfunction that will always take your absolute, complete and total attention and diligence for maintenance. It's rare that someone ever restores a normal function even with surgery and you'll hear people talk about surgery for lymphedema. One of the surgeries is that if someone has a very large, disfigured part of their body due to the swelling and the thickening and the fat.

Lisa Garvin: They'll go--Surgeons will go in and remove the extra tissue. But to maintain that area of the body back to the smaller size, you must do the manual lymph drainage, the skin care, the complex decongestive therapy. There are treatments--some individuals are trying to hook up lymphatic, the microvascular surgery. Even with that, you must maintain your own care. They have tried to grow lymphatics through angiogenesis or type of growth of the lymphatics and to have them function and to stimulate their own growth beyond what your body already does. Your body does develop collateral lymphatics but it--they just don't work as well. You still must do your own self care. And given the delayed onset, it seems--I wonder if cancer patients who have gone through treatment, I wonder if they know that lymphedema may crop up--I mean, are they aware that that happens and if they do get a swelling 5, 10 years down the line, do they even connect it to their cancer or their treatment?

Dr. Kathleen Smalky: I don't know. It all depends on their physicians' ability to have educated them early on to constantly be aware and we see that a lot of doctors are doing this very well. In fact that they are using for individuals who are at risk of developing lymphedema, they are encouraging the use of garments or if that person happens to be in a situation that might--where their body might produce more fluids such an airplane flight or overwhelm their own lymphatics. They encourage the use--that they use the garments. I would say though on a whole, most people are not aware that it has a delayed onset and I would say that on a whole, most physicians outside of a cancer center are not aware.

Lisa Garvin: What should lymphedema patients tell their primary care physician? I mean, is there anything their primary care physician should know about their treatment and followup?

Dr. Kathleen Smalky: Actually, there're quite a few things. Their primary care physician can be a very, very, very god source of supportive care for them and what the patient needs to tell their primary care is first of all, I have lymphedema or I'm at risk of developing lymphedema. Second, I'm gonna need your help and I'm gonna need you help in terms of supporting me through writing prescriptions for my garments, for my bandages, or for a pump. I'm gonna need your help by--since I am at risk of developing an infection in this arm, leg, face, trunk, I need a prescription to carry with me at all times in case I start to develop an infection cellulitis. I need you to refer me for ongoing physical therapy, manual lymph drainage, monitoring. Many of the pharmacologic interventions that doctors give patients, say for blood pressure might cause in any individual a little bit of swelling or some of the treatment for Parkinson's disease also can cause swelling. So, an individual who either has lymphedema or is at risk for lymph edema need to work with their physicians in terms of treatment of their comorbidities to try to avoid medicines that might give fluid collection. And that's something that they need to be able to say and even bring examples.

Lisa Garvin: And I would assume that their caregiver--I mean I have a neighbor who had breast cancer and lymphedema and I had to wrap her arm for her. So it seems like sometimes, somewhat depending on where it is that the caregiver or the spouse might have to actually do some of the care.

Dr. Kathleen Smalky: Caregivers, oh, absolutely, absolutely very important. One of the things that I think caregivers need to do is they need to really understand that the treatment for the individual, their treatment of their lymphedema, number one, is very time consuming. That the person with lymphedema needs to be self focused, okay? They need to be careful. They're not just giving in excuses, okay? And the way that the caregivers or spouses can be helpful is they can, right, they can learn to do the manual lymph drainage, they can learn to wrap or even unwrap. They can learn to roll the bandages. They can be helpful in terms of care of the garments because they're very expensive, okay. So an individual that has lymphedema of the lower extremities that purchases a pair of pantyhose, panty garments that are custom made. The cost of those garments 6, 700, 800 dollars per pair. And they--And technically they last 3 to 4 months and insurance does not always pay. So it's the huge expense. And so the appropriate care is very important. I think to the spouse and caregivers can help them be very--can help the person with lymphedema be diligent and can encourage them not to give up, okay, and to be involved and to recognize. It is a chronic condition and the more people supporting them the better.

Lisa Garvin: In closing, is there any sort of take home message you would give to people who are suffering through lymphedema?

Dr. Kathleen Smalky: Yes, I would say that. It's very important to realize that although you have lymphedema it does not necessarily need to define you. It is treatable condition and it can be usually successfully controlled to the point that you can continue with your full activities of daily living and other activities exercise, swimming is great and that there is also some element of learning to accept that--it's chronicity and together involvement in care it's a very, very controllable condition.

Lisa Garvin: Great. Thank you, wise words about lymphedema. If you have questions about anything you've heard today on cancer news line, contact AskMDAnderson at 1-877-MDA-6789 or online at www.mdanderson.org/ask. Thank you for listening to this episode of Cancer News Line. [Background music] Tune in next week for the next podcast in our series.