April 2008: Preventing and Treating Arm Lymphedema


Ask-the-Expert Online Conference

On Wednesday, April 16, 2008, our Ask-the-Expert Online Conference was called Preventing and Treating Arm Lymphedema. Kathryn Schmitz, Ph.D., M.P.H., F.A.C.S.M.,Nicole Stout, M.P.T. C.L.T.-L.A.N.A., and moderator Jennifer Sabol, M.D., F.A.S.C. answered your questions about ways to prevent and manage lymphedema.

Lymphedema reversible if treated early?

Question from Constance: Is arm lymphedema always reversible if treated early?
Answers - Nicole Stout I think at any stage of lymphedema there's an element of reversibility. We can soften the tissue and we can decongest the limb, especially at the early stages.
Jennifer Sabol, M.D., F.A.C.S. If I can make a comment, as a surgeon I usually tell patents that lymphedema is kind of like blowing up a latex balloon: the more you allow it to stretch out, the harder it is to get back to its original shape. That's why we try very hard to educate patients to look for signs of lymphedema so that we can start treatment early and hopefully get back to the original form of the arm as quickly as possible.
Kathryn Schmitz I don't know whether the person asking this question intended this thought to come up, but there is a possibility that with the answers that are being given, depending on how they're taken, some women may blame themselves for lymphedema – “Gee, why didn't I do something earlier?” I think there are probably women for whom it's inevitable that their arm is going to enlarge. There are women who, for reasons that are unknown, never do develop lymphedema even if they've had the same treatment. I want to be cautious in saying that it is always preventable, or that we can do a better job with it in every single case when caught early. However, I think that there is ample evidence at this time in the scientific literature that early detection and early treatment are clearly associated with a better outcome and a better clinical course, and that it is less likely if detected early and treated early that lymphedema will become severe. Even with that, there are some women for whom it's completely inevitable that they're going to have a large arm. I don't want anyone reading this thinking that they are to blame for it.

What to do for swelling caused by bandaging?

Question from PS: Do you have any suggestion for treating hand lymphedema when bandaging and sleeve/glove seem to make it swell more?
Answers - Nicole Stout That is a complicated situation, as there are so many issues that surround a complicated hand. It can range from the quality of the bandaging that's done, the size of the hand, and the compression class of the garment being used. Many times bandaging and garments become an exercise in strategy and what works for one patient isn't going to work for another. I think just sampling different garments, different bandage strategies, or different alternatives in mechanisms of compression may help. I have thousands of strategies in mind, but I think it's impossible in a conference situation like this to give very specific strategies. There are some good resources for follow-up with bandage strategies or garment strategies. Many of the custom garment companies have advice on constructing garments that could be helpful. Or collaborating with other therapists, if you have a network with other therapists you work with, passing ideas back and forth of what's been helpful, innovative strategies that you can share with one another.

Guaranteed way to prevent lymphedema?

Question from Doris: Is there any 100%-positive way to prevent lymphedema?
Answers - Nicole Stout I think the more appropriate way of looking at lymphedema is looking at it in terms of risk reduction. I think that we familiarize ourselves and our patients with how they can reduce their risk of first developing lymphedema. But secondly, if they have lymphedema, how they can reduce their risk of seeing that condition advance? There are excellent evidence based guidelines that have been offered by the National Lymphedema Network, that focus on reducing risk through skin care, prevention of infection, and just taking care of the arm with activity.
Jennifer Sabol, M.D., F.A.C.S. We get a lot of questions from other primary care providers about when it's safe to do things like blood pressure, putting IVs in someone's arm, etc., and there are some perceptions that if the arm hasn't swelled after 1 or 2 years, that it's safe to do these normal medical procedures. I think a lot of patients would like to know your opinion on that.
Nicole Stout Again, if we look at the literature, it is surprisingly scant in these areas. Venipuncture is one thing; actually dropping an IV is another thing; glucose-monitoring finger sticks is another thing. So 3 forms of skin puncture, just as an example. We don't have the evidence to say one is safer or more detrimental than the other. We do advocate for their patients to keep their skin integrity maintained, so it stands to reason we'd avoid those things on an affected or at-risk limb to avoid an infection. Again, it's a mechanism of risk reduction. However, what we need to understand to answer Dr. Sabol's question is that once the lymphatics have been damaged or removed, they never regrow, so that patient remains at risk for life. So I don't think that we can say that in a period of time that it is safe for us to undertake activities that we know may increase the patient's risk.

Swelling worsens without sleeve?

Question from Karen: If you have LE and don't wear a compression sleeve 24/7, will your swelling irreversibly worsen over time?
Answers - Kathryn Schmitz I think it needs to be known that there is at least one therapist out there who's very popular with patients who think asking women to wear compression garments all the time is an unacceptable state of affairs and that more frequent massage-based drainage can do the same thing as wearing a sleeve, perhaps in combination with pumping. I can also say that opinion, from my experience, does appear to be outlying, that most lymphedema therapists recommend the regular use of compression garments. The question of how many hours a day is truly an individual clinical decision.
Nicole Stout I would add that, if we look at some of the historical work in the literature (I refer specifically to the Casley-Smiths) that lymphedema will progress over time if it's not managed appropriately. So I agree with Dr. Schmitz that it comes down to an individual clinical decision about what is appropriate treatment. Compression garments have been shown to be very effective to maintain limb volume.

Still okay to ride exercise bike?

Question from Carol: Before several of my lymph nodes were removed due to breast cancer, I used to ride a stationary bike for exercise. Can I still ride it now or will it be too much exercise for my surgical arm?
Answers - Kathryn Schmitz The answer is you should absolutely ride your stationary bicycle, and it will not be too much for your affected arm. In fact, I would submit, and I hope that Jennifer and Nicole will agree with me – if it's controversial I suppose they'll tell me – that the risk of inactivity poses greater long-term health risks than the risks of being active. I think that there is evidence that weight gain and obesity are associated with worsening of lymphedema. And there is evidence that exercise is effective in avoiding weight gain. Therefore, aerobic exercise in particular may be quite useful in risk management and attenuating worsening of lymphedema.
Jennifer Sabol, M.D., F.A.C.S. I think it's fair to say we all agree 100%.

Exercises to prevent lymphedema? Weights okay?

Question from Marianne: I'm wondering what exercises can help prevent lymphedema? Can I lift weights at all on the affected arm, even just 5 lbs?
Answers - Kathryn Schmitz The answer would be yes. You can lift 5 pounds, you can lift 15 pounds, you can lift 100 pounds. The issue is not what you can lift; it's gradually increasing the capacity of the affected limb. You want to increase the amount that you lift gradually enough that the affected limbs have a chance to communicate through symptoms that you've done too much. So if you start by lifting 1 pound and you feel fine, then the next session you try to lift 1-1/2 pounds or 2 pounds and you feel fine after that, and the next time you increase again by 1/2 pound or 1 pound increments. As long as your limb is not changing in any negative way, there is no need for an upper limit on the amount that you can lift. But you do need to build your capacity gradually. I'll use an analogy here: after someone has a heart attack you certainly don't ask them to go out and run a marathon the next week. But there is ample evidence that individuals who have had heart attacks can and indeed do train and successfully complete marathons. They start in cardiac rehabilitation programs and gradually build up capacity of their damaged heart so that they are capable of running faster and longer than the average person. This would hold true for the lymph system as well.
Nicole Stout I feel very strongly that women who have been given the advice that they should "never lift more than 5 pounds for the rest of their life" should take that advice and throw it out the window. I truly believe that every exercise program is to be individualized. Every patient has the ability to do whatever activity they choose, whatever it is – rock climbing, dragon boat racing – as long as they choose an appropriate mechanism to train and monitor their limb.
Kathryn Schmitz I will add one thing: something women with lymphedema can't afford to do versus women not at risk can afford to do is to injure the arm due to overactivity. So women who have lymphedema do have to be smart that if they walk away from exercise for some period of time, they must back off and rebuild the limb. Muscle is a “use it or lose it” tissue. So if you stop training because you're taking care of your sick mother or you're busy at work, like any other woman wearing many hats and meeting other needs, you need to be aware of the breaks between exercise sessions and not overextend the limbs after a break. That is key.

Breast lymphedema possible?

Question from Amy: Does lymphedema only occur in the arm or can it be in the breast as well?
Answers - Nicole Stout Absolutely! Not only can it be in the breast as well, it can be exclusively in the breast and chest wall, even if it does not appear in the arm. So we need to recognize that breast edema and chest wall edema exist and should be treated.
Jennifer Sabol, M.D., F.A.C.S. As a surgeon, I probably see it more acutely than most and have a more difficult time getting other physicians to acknowledge that there is such an entity as lymphedema of the breast which is actually quite uncomfortable for some patients as well as alarming, because it is difficult to ask for treatment for swollen breasts. I think maybe you can comment on how you manage patients like this.
Nicole Stout I would say, first of all, recognition is part of the key. I believe anecdotally that I am seeing more frequency of breast and chest wall swelling – lymphedema, if you will – now with the sentinel node biopsy, as we are removing the direct drainage pathway out of the breast. Unfortunately, it is going far underrecognized. Treatment for breast and chest wall lymphedema is analogous to the way we would treat the arm, meaning that the patients would require lymphatic drainage, compression, therapy, exercise, and skin care. Many of these patients will require custom fit or near-custom compression bras.
Kathryn Schmitz I would say this is an international problem. I was at the Australasian Lymphology Association meeting in Perth in March, and this issue of seeing more breast edema was a theme there. It seems to me that the compression garments and treatments available are not as advanced as they are for arm edema, the compression garments in particular.
Nicole Stout I would agree with that to an extent. I think there are excellent compression bras that exist. I agree with you that we are as not highly evolved in this area in recognition, treatment, and management as we are with the arms.
Jennifer Sabol, M.D., F.A.C.S. I would add one note of hope, and it is sort of anecdotal. I think this is one of the few times that lymphedema does have a tendency to regress. It's probably due to the acute injury of the radiation therapy. Breast edema does tend to go down over time, though it may not disappear. It is a very slow resolution of the edema and it's almost never complete. I generally tell patients to expect a very slow, ongoing improvement, even over 2 to 3 years after their radiation therapy, until they reach a stable plateau. I'd be curious if you two have found the same sort of better overall prognosis for the breast edema.
Nicole Stout I would add one note of hope, and it is sort of anecdotal. I think this is one of the few times that lymphedema does have a tendency to regress. It's probably due to the acute injury of the radiation therapy. Breast edema does tend to go down over time, though it may not disappear. It is a very slow resolution of the edema and it's almost never complete. I generally tell patients to expect a very slow, ongoing improvement, even over 2 to 3 years after their radiation therapy, until they reach a stable plateau. I'd be curious if you two have found the same sort of better overall prognosis for the breast edema.

How common is lymphedema from radiation?

Question from JJ: What percent of patients who receive radiation treatment to the underarm node region develop lymphedema?
Answers - Nicole Stout I don't know if we can give an exact percent, but we would assume that if the patient is getting radiation to their underarm that they have positive lymph nodes and have probably had more removed, so their risk according to current research could be as high as 48%. I emphasize the “could be” – it could be as high as 48%.

Risk of lymphedema from flying?

Question from EMcK: Is it advisable for all patients to wear a sleeve when flying? What if only one or two lymph nodes were removed? Is there a difference between short and long flights?
Answers - Nicole Stout Again, I think making a blanket statement like “all” or “every” to our patients does not serve them well. I do believe that there is ample anecdotal evidence that there is a shift in fluid when people are exposed to a decreased air pressure for a long period of time. My feet swell when I go to Los Angeles on a flight. So I think everyone's body will respond to that pressure differently. If a patient is to have a compression sleeve for an airplane flight, the garment should be well-fit by a trained therapist, and the patient should be familiar with how to properly wear the garment.

How to tell normal swelling from lymphedema?

Question from Lyd: How can I tell the difference between the swelling in my arm and breast from radiation (I am 2 months out of treatment) and the signs of lymphedema?
Answers - Nicole Stout I would say the hallmark sign of lymphedema is an asymmetrical swelling in the tissue that persists over time. We also need to understand that skin changes and tissue changes related to radiation can persist for a long period of time. In fact, inflammation is high in that tissue for up to a minimum of 4 months, and longer term changes can happen for up to 5 years. So to tell the difference in the early stages I agree is difficult, and there's not a specific percent of difference we would say is accurate. But the question I would ask is does the swelling change over time? Do you see the swelling in your arm or breast change from week to week or day to day? Month to month even? Is it gradually improving over time? If it is, I'd say it's related more so to the radiation.
Jennifer Sabol, M.D., F.A.C.S. I tend to agree. I think it's very difficult to decide what is simply treatment radiation change and going to get better. Traditionally, we think of radiation swelling as being within the radiated field, meaning the breast; however, treatment's effect can also impact the lymphatics as they come out of the arm, and during radiation treatment some patients may experience more arm swelling. Again, these changes do subside slowly over time. I think while it's impossible to specifically treat lymphedema during radiation (and Nicole may have a comment about that), symptoms that persist after treatment should be managed aggressively.
Nicole Stout I think we can certainly treat someone during radiation therapy, although it becomes very difficult. I think the program, though, becomes slightly modified depending on how the tissue is responding to radiation. Certainly, we can stimulate the lymphatic system in its proximal and central and healthy areas, but we would tend to avoid massaging over the radiated field. So it does limit the treatment to some degree. Compression would also be limited during radiation treatment as we need to protect tissue. I think we need to remember that the lymphatics in the underarm drain the tissue of breasts, the chest wall, and the arm on the same side. So even if we don't directly damage the arm or the underarm with radiation, there still can be damage done that impacts the drainage of that entire quadrant.

Manicures safe with lymphedema?

Question from Website Question: Is it safe to get a manicure if you have arm lymphedema?
Answers - Nicole Stout Absolutely! As long as it's done in a safe manner, and by that I mean protecting the skin integrity. Again, we advise people not to have their cuticles cut and just simply push them back. It's a safe mechanism by which you can protect the skin. I've had patients who take their own sterile supplies to have their manicures done, because they feel more comfortable that way. There's never a never and never an always, that's what I like to say. I think that's very true when you deal with lymphedema.

Okay to do yoga after nodes removed?

Question from JSD: I have had 25 lymph nodes removed and radiation to the area. I do yoga regularly (inversions supporting the body with arms and feet, push-ups, etc.). Is this something I should continue if I was doing it during treatment and after? Is it dangerous to continue this?
Answers - Kathryn Schmitz It's perfectly safe, keep going.
Nicole Stout And good for you for doing inversions.
Kathryn Schmitz In general, I think it is important to have women learn to increase the load on the affected limb GRADUALLY. That means that you do positions such as downward dog for a moment the first time, and then increase time over weeks/months, using the same approach with other inverted or upper body intensive poses.

Why so few lymphedema therapists?

Question from Maire: Why are there so few lymphedema therapists? Is there a standard of care that should inform patients about getting evaluated early on?
Answers - Kathryn Schmitz There is actually something this audience should know about. There's a difficulty in this field, like nutritionists and exercise trainers, in that there is no current regulation of who calls themselves a lymphedema therapist and who does not. In response to this, the National Lymphedema Network, www.lymphnet.org, has published a physicians’ paper that is easily downloaded on the adequate training of lymphedema therapists. Further, the schools that fulfill those requirements publish their lists of students who have completed and are certified. Unfortunately, that's the best we've got in the United States. I can tell you, they're way beyond us in Australia.
Nicole Stout And many of the European countries as well.
Jennifer Sabol, M.D., F.A.C.S. I think part of that is there are issues with reimbursement. It's a shame we're not particularly good at reimbursing for lymphedema care in this country. It becomes hard to find therapists who feel passionately about this and want to be well trained.

Shoulder bags okay to wear?

Question from Rose-5: Is it okay to wear a shoulder strap handbag on the affected arm? Also, would activities such as painting walls cause damage or be detrimental?
Answers - Kathryn Schmitz This question comes back to the issue of overuse and understanding what overuse is for you individually. If your shoulder bag requires more of your limb than it can handle and your arm feels tired and stressed after wearing it, it's too much. Get a smaller bag. If your limb feels okay, it's fine. If your maximal capacity of the affected limb is a 10 and any activity – not just carrying a shoulder bag – requires 9.5 out of 10, that's probably too much. So rather than say you can never carry that bag again, go do some exercise so that your capacity becomes a 15 and carrying a bag that requires 9.5 isn't such a big deal any more.

Exercises to help lymphedema? Wear compression garment forever?

Question from Kay: I developed lymphedema in my left arm and my left breast (trunk area). Are there any exercises that I should be doing on a regular basis? Do I need to wear my Belisse compression bra for the rest of my life, as well as the arm sleeve? What precautions do I need to be aware of? Thank you and God bless!
Answers - Nicole Stout I think the precautions have been well outlined up to this point, as far as precaution with activity and exercise, lifting, etc. Indeed, there's no restriction; you just need to be cautious about completing those activities to the best of your abilities. As far as wearing compression garments for the rest of one's life, I think that is different for every patient. You will probably need some degree of compression on the chest wall. It's hard to say if that's every day, all day, and the same goes for the arm sleeve. I think everyone is different and as we learn our limbs, we learn our breasts also, and how much compression we need to maintain the swelling to a degree that's comfortable for us.

Exercises to cure lymphedema?

Question from SWoods: Are there exercises that one can do to make lymphedema go away?
Answers - Kathryn Schmitz No.
Nicole Stout No, but I would say when exercises are done in the context of a complete decongestive therapy program, they can maximize limb decongestion. Once we have lymphedema, it never goes away. That is vital for people to understand.

Research on drugs to increase lymph flow?

Question from Gabriela: Is there any research being done to develop pharmaceutical solutions (i.e. drugs) to increasing lymphatic flow?
Answers - Kathryn Schmitz I am aware of research that is likely at least a decade away. It is at the point of early discovery of targets that could lead to the development of a drug.
Jennifer Sabol, M.D., F.A.C.S. I don't know of any in the present right now. I know several compounds have been used in the past anecdotally, and none have proven to be either effective or necessarily safe, even.

Okay to ignore fluid build-up on elbow?

Question from Dane: There is always a little bit of build up of fluid on my arm, around the elbow area. This has been present for over 5 years. It does not worry me, so am I correct in ignoring it?
Answers - Nicole Stout No!
Kathryn Schmitz This is one of those questions that I worry about, because we don't want anyone reading this or looking at the transcript to walk away freaked out unnecessarily. That said, Nicole's No! is well taken. We've known for a long time that early intervention and management is effective at preventing or attenuating worsening of lymphedema. At the very least, monitoring that limb is worth pursuing.
Nicole Stout Your arm is telling you a story right now. It is telling you that there is a fluid congestion; it is telling you that it is likely related to lymphatic overload. Even though it hasn't progressed, it doesn't mean there's not still a risk, especially for infection. It may not bother you and it may not ever get worse, but because it exists and it's there, it's your limb telling you already that it's a little bit too stressed. You have to heed that little bit of a warning, so just keep an eye on it.

Does computer work affect lymphedema?

Question from Georgia: I use the computer for 99% of my work day. Will this affect my arm?
Answers - Jennifer Sabol, M.D., F.A.C.S. It's sort of like using a computer and the development of carpal tunnel – some people will develop carpal tunnel but some people will not. Only time and trial and error will tell you if you're going to develop lymphedema in that situation. I think my only suggestion would be to make sure your work station is ergonometrically (physically safely) positioned – the seating and desktop area.
Nicole Stout Again, if you are someone who's been using their computer for 99% of your work day for years and years, your arm is probably in tune with that level of activity.

Shaving and lymphedema risk?

Question from Ruth: What about shaving? I really hate the electric razor!
Answers - Nicole Stout This just goes back to skin care. The less opportunity we give for bacteria to enter our skin with nicks and cuts from shaving, the less exposed we are and potentially the healthier the limb will be. Again, that's not to say nicks and cuts don't happen, and bugs will certainly bite. So if these small punctures to the skin do happen, we take care of them with antibiotic ointment and prevent them from becoming infected.

How to participate in lymphedema research?

Question from Sue K956: How can one participate in a research project for lymphedema?
Answers - Kathryn Schmitz I would direct you to www.oncolink.org. That's a fantastic resource for finding about research being done in survivors and patients. I am in the process of trying to disseminate the results of a large study about exercise and lymphedema. It's difficult.

Compression sleeves and flying increase lymphedema risk?

Question from MELB: My therapist says if you've never had lymphedema, wearing a compression sleeve on a plane will actually increase the risk of developing lymphedema. She says there is already compression in the plane, and adding even more compression with a sleeve will be way too much on a compromised arm. Is there formal study evidence showing anything to support either side of the flight controversy?
Answers - Kathryn Schmitz Yes, I can answer this. I love it when you go to a conference and you hear something and can tell someone about it. Sandi Hayes in Australia has done a small study, and she's planning on repeating it larger. She asked people to get measured before and after an airplane flight, and she found no effect. She's planning on repeating on a trans-Pacific flight from Sydney to San Francisco to confirm cross-continent flights. I will also comment that I think the reality – given that lymphedema garments are not often covered by third party payers, need to be fitted individually, and need to be replaced every 6 months – of burdening a woman who does not currently have lymphedema with a non-covered visit to a lymphedema therapist and the several hundred dollars for a garment every 6 months, is overkill. I'll also say that in light of this, it's clear from my interaction with women that they take this advice and translate it into putting on poorly fitting compression garments or off-the-shelf Ace bandages, which indeed could do more harm than good.

How to respond to lymphedema emergencies?

Question from Kris: Thanks so much for sharing your expertise with us tonight. Can you talk a bit about lymphedema emergencies and how/when to respond?
Answers - Nicole Stout Great question!
Kathryn Schmitz There was a woman advocate survivor with lymphedema at the conference in Australia who regularly developed cellulitis and finds herself talking to doctors to try to get a prescription for antibiotics in remote areas of Australia. It's a difficult situation for her. Her response has been to have a script for antibiotics on her person at all times. That's one issue: having cellulitis and needing antibiotics immediately. I think it's inexcusable for physicians not to have that available to their patients if they have recurring cellulitis.
Nicole Stout I think we should define what an infection looks like for those who have never had one: rapid exacerbation of swelling in their arm, redness to the tissue, it will be warm to the touch, and it's typically painful. If a patient's limb or chest wall exhibits these signs they should proceed directly to get medical attention, because a cellulitic infection can first of all bring on lymphedema in someone who's never had lymphedema before. And secondly, it will spread very rapidly as the protein-rich fluid is a culture for bacteria. So I agree with Dr. Schmitz’s comments – patients need to recognize and respond quickly. If they're familiar with infections, if they've had recurrent infections, they should have access to antibiotics. Because Murphy's Law is that Friday night, 10pm, the redness and pain starts in their limb and having access to antibiotics prevents them the trip to the emergency room. It enables them to treat without having a seriously exacerbating situation.
Jennifer Sabol, M.D., F.A.C.S. One thing I would add is that, while sometimes you can get a pink tinge to a swollen limb, patients that have true cellulitis generally feel overall ill. They have a general sense of fever, chills, aches – much like they have the flu and the onset is fairly rapid. I agree it's never at a convenient time. So I encourage a lot of my patients if they're traveling outside of the area to simply fill a prescription and take it with them if they've had recurring episodes.

Good news for lymphedema patients?

Question from MsMadelyn: Reading this could leave someone facing lymphedema (or its possibility) feeling a little hopeless and helpless. So is there any good news about improvements in the future through research or improved methods?
Answers - Kathryn Schmitz There's already been good news. The first good news is that we're no longer ripping all the underarm nodes out of women. There was a time, less than 10 years ago, when it was common to remove all of the nodes under the arm, and the rate of lymphedema was higher. So already, we've cut the rate of lymphedema in half or more by the introduction of sentinel lymph node surgery. There has been a lot of recent research that will clarify that women do not need to be as restricted as previously thought in their activities if they have lymphedema.
Nicole Stout We're also training more and more therapists every year to become more specialized in lymphedema management, and those therapists are telling the world the fact that there is treatment available for lymphedema. A decade ago we used to tell women they had to live with lymphedema, and we have novel interventions today.
Jennifer Sabol, M.D., F.A.C.S. I have to say from a surgery standpoint, I've seen dramatic decreases again with the rate of lymphedema thanks to sentinel node biopsies. But one of the best improvements I've seen is the acknowledgment by the physical therapists we're using that it's not a question of trying to limit someone's activity so this doesn't happen. I now see more therapists asking their patients what they want to do in their life, such as water-skiing or climbing a mountain, and then finding innovative ways to help them get there.
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