LANITA MOSS:Welcome, everybody, to “Lymphedema

Prevention and Treatment: What You Need toKnow.”My name is Lanita Moss. I am one of theco-founders and vice president of the YoungSurvival Coalition [http://www.youngsurvival.org].It is an absolute honor to be here this weekend withso many young women [and] that somehow, outof dumb luck, three women about seven years agopulled an organization together that can impact somany people in their lives. I am honored to be inthe presence of all of you guys, and I’m glad youmade the trip to Denver this weekend.

I would like to introduce our speaker, TrudyTurvey, the president and clinical director ofHealthLinks Clinic in Boulder, Colorado. She hasover 30 years of experience as a clinician,administrator and teacher. She’s well known forher expertise in the areas of postsurgical therapyfor breast cancer, lymphedema and exerciseassessment and training. She has been a speakerfor the nationally acclaimed Day of Caring. Shevalues her personal relationships with her patientsand, above all, offers individualized quality care toeach of them. I’m going to turn this over to Trudy.She’s going to give her presentation, and then we’lldo a question-and-answer period.

TRUDY TURVEY, MS, PT:Thanks, Lanita. Well, thanks for being here.

I’m happy to be here and absolutely amazed atthe number of people who are here. HealthLinksClinic in Boulder addresses the needs, such aslymphedema, of individuals who have beendiagnosed with cancer. We try to help peopleonce they’re diagnosed look at their lives in termsof survivorship – what are you going to do to bethe healthiest survivor? – and try to pull togetherall kinds of things like nutrition and exercise,lymphedema care, postsurgical care andemotional support.

Through that clinic, I have, since 1999, seenmany individuals with lymphedema. My approachtends to be not quite as “cookbook”as you mighthave encountered, those of you who havelymphedema. I try to look at the latest science andsee every individual as an individual, because if youhave lymphedema, your lymphedema is not likethe person’s next to you. Everybody’s lymphedemais different, and you’ll respond to treatmentdifferently. That is something I have observedthrough my time of treating people.

Many people go to clinics and are given acookbook way of approaching their lymphedema.Some of that cookbook works and some of itdoesn’t, yet the whole cookbook is expected to befollowed. That’s not how anybody should approachany treatment, least of all lymphedema, as far asI’m concerned. I encourage you during thispresentation to please ask me questions. You mighthave tried something, if you do have lymphedema,that didn’t work. The question is, “Well, why didn’tit work for me? It worked for so-and-so.” I will tryto help you through that.

If you feel comfortable, if you havelymphedema, would you let me know that in theaudience just with the raising of your hands?Thank you. My other experience is that peoplewith the diagnosis often know a lot more than thepeople who are treating it, so if you have somethingto offer, this is the time to offer it to people,because I’m really open to hearing whethersomething different worked for you. I knoweverybody else would welcome that as well.

Let’s talk a little bit about what lymphedemais. For those of you who do not have it andperhaps have not been exposed, lymphedemaessentially is an accumulation of fluid. It’s in thetissues. If you’ve had breast cancer surgery, it wouldmost obviously be in your arm, your trunk, yourbreast, sometimes your back. If you’ve had necksurgery, it would be in your neck. If you’ve hadsurgery for, say, colon cancer or ovarian cancer, it

more than likely would be in your legs and yourabdomen. It can be in many different places.

There are different ways of categorizinglymphedema. Primary lymphedema – they call ithereditary, but that’s not necessarily the truth ofit. It is a lymphedema that we don’t totallyunderstand; we don’t understand either of them,frankly, very well. [Primary lymphedema] might[arise] because there are malformations or there isa poorly developed lymphatic system from the get-go. This lymphedema might not show up for years,but later in the teens or even adulthood, somethingmight trigger that. The treatment for thatlymphedema is the same as for secondarylymphedema, which is really what we’re here to talkabout today. Those of you here who havelymphedema, it would be categorized as secondarylymphedema, and it’s from some type of trauma orinsult to the system later in life.

Let’s talk a minute about the anatomy.Thelymphatic system is not a very well understoodsystem – I should tell you that. When yourphysicians don’t know what to do, it’s because thissystem was not really addressed in medical school.Perhaps in medical school, survivorship wasn’t asmuch of an issue, but now we have many, manysurvivors, and lymphedema as a complication oftreatment or the disease certainly exists plentifully.

The lymphatic system, by the way, ismicroscopic. For someone to actually dissect thelymphatic system is a very specialized dissection; [itrequires] someone with skills beyond the normal,if you will, anatomist. It is microscopic. Thesecapillaries – they’re called lymphatic capillaries –many of them lie right underneath the skin. That’simportant to know because that’s part of why thetreatment approach is used. These capillariesconnect to deeper vessels, which connect and gothrough nodes, and the fluid is filtered throughthe nodes. It ultimately gets back up to the heartand dumped back into the cardiac system to beput in with the blood, and back out it goes.

Lymphedema Prevention and Treatment: What You Need To Know

February 25, 2006Trudy Turvey, MS, PT

Lymph fluid is not a special fluid that peoplewith lymphedema have. It’s fluid that I have andanyone else has. They call it lymphedema –“edema”meaning swelling, and “lymph”becauseit’s the lymphatic system that’s not working verywell. Some people have a sense that it’s some otherfluid, but it’s really not.

To put it in a nutshell for you, you have arteriesdelivering proteins, tissue nutrients and fluid toyour tissues. For my arm to work, my muscles needthose nutrients. Once my tissues are done with it,the venous system brings back the majority of it.The lymphatic system brings back approximately10 percent of what’s not used.

The other very important thing about thelymphatic system is that because of its structure, itis able to bring back larger molecules – the protein,the fatty deposits. Hence, if it’s not working, thatstuff stays out in the tissues, and therein is thereason for the infections, the cellulitis that peopleget. That’s a very important thing to understand,because one of the biggest issues for people withlymphedema is the whole infectious process.

WOMAN:When you were talking about the lymph

system taking bigger things, do you mean biggertoxins?

TRUDY TURVEY, MS, PT:Well, bigger molecules. Proteins are larger

molecules, and those can’t travel through the venoussystem. They’re too large to get into it.

WOMAN:Oh, so if your lymph system isn’t working,

they get stuck?

TRUDY TURVEY, MS, PT:They stay there. Right. What are the causes

of lymphedema? Why would one havelymphedema? Well, certainly surgery, and that canbe any surgery. It could be knee surgery, surgerytotally unrelated to cancer. For individuals with acancer diagnosis, it has some particular things thatwe’re dealing with.

Radiation, tumor, venous insufficiency – whenyou see elderly people walking around and theirlegs are really swollen, that’s not just venousinsufficiency. What happens is the lymphaticsystem gets overwhelmed, so those individuals alsowill respond to lymphatic therapy. Infection – Ihave two people in my practice right now who didnot have lymphedema but got infections in theirarms through some other process. They are breast

cancer survivors. Their arms became very swollen,and now they do have lymphedema, but they didnot have it prior to the infection.

Insect bites – we’ll talk a little bit more abouthow important insect repellent is for you all – andburns: The reason some of these things causelymphedema, like insect bites and burns andinfection, is that the body is going to respond tothat and send a lot of blood to try to heal. Whenmore blood than normal is sent and the lymphaticsystem is impaired, the system cannot handle thatoverload. There is a much greater supply of tissuenutrients than the lymphatic system is preparedto handle. The surgery for breast cancer most ofthe time involves removal of nodes. When youremove those nodes, you remove part of thelymphatic system.

Try to visualize this with me. Nodes are notdiscrete little things that physicians can pull outone by one. They are, by and large, embedded inyour tissue. When they’re doing the surgery, theyreach in and pull out this bunch of tissue, andmaybe there are four nodes in there for me; maybethere are seven nodes in there for somebody else.There’s no discreet way of pulling them out.Occasionally there will be an enlarged one, andperhaps that could be pulled out. With that [tissue]are all of these lymphatic tubules that areconnected there, so now you’ve lost these ways forthe fluid to get back through the nodes and backinto the central system to be handled by the cardiacsystem. That’s what this surgery does.

I’ve had people say, “But they only took onenode out.” It is our hope that sentinel node surgerycan reduce the risk for lymphedema. In fact, thefewer nodes you have taken out, the less is yourlikelihood of developing [lymphedema], at leastas far as we know right now. Even with a sentinelnode [surgery], I have had patients who have hadlymphedema. It’s not a way of totally preventingit, having just one node removed – it’s importantto understand that.

Radiation itself destroys lymphatic tissue.Radiation essentially causes the tissue to be non-elastic and non-functioning. “Fibrosed” is the wayyou might describe it. Those tissues becomescarred, and once they’re scarred, they’re really non-functioning; those tissues will not regenerate. Thereis some good evidence that without radiation,lymphatic tissues can regenerate, but not acrossthe board. Saying to yourself, “Well, darn it, if Ihadn’t had that radiation, I might not have thatlymphedema,” that’s a really iffy thing. I have seen

people, of course, who did not have radiationwho’ve had lymphedema. It’s not a cure-all, refusingthe radiation. In fact, we know radiation doesimprove chances for survival, so I wouldn’t wantsomeone to make that choice – and radiation addsonly 1 percent to 2 percent in terms of the totalrisk for lymphedema.

Tumor, of course, can block the lymphatics.When I get a patient who has new lymphedema,the very first thing I’m going to ask is, “Well, whattest has your physician done?”We need to makesure it’s not a blood clot. We need to make sure it’snot new tumor. Should you develop lymphedema,you don’t go straight to the therapist who’s goingto provide lymphedema therapy. You go straightto your oncologist so he or she can do these testsand make sure you don’t have a clot and you don’thave tumor. It’s very important, because treatinglymphedema with tumor preset, you won’t getanywhere – you can’t. The tumor needs to beaddressed as to where that tumor is, and probablythere will be some other chemo or radiation tomanage that.

Any questions about the causes?

WOMAN:I’m curious about what you were just saying

about having a clot. What kind of tests would youdo for that?

TRUDY TURVEY, MS, PT:They would do an ultrasound.

WOMAN:Of your arm?

TRUDY TURVEY, MS, PT:Of the arm. Any time new lymphedema

appears, I would say nine times out of ten, anultrasound is done to rule out a clot. Let me giveyou an example: tamoxifen. If you were newly puton tamoxifen and you got some arm swelling, thatcould be a clot, and usually that is painful. That’sone way to differentiate, but don’t diagnoseyourself. I mean, truly, that’s a life-threateningemergency and you need to have that addressed.With tamoxifen, as many of you may know, one ofits unpleasant side effects is blood clotting.

This is very important: I have had manypeople who have been treated for lymphedemawhen really what they had was postsurgicalswelling. You can imagine, if any of you are in thiscategory, getting some swelling after your surgery,going to a therapist who claims to havelymphedema experience, and he or she says, “Oh,

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my gosh, you have lymphedema. You need to getthese treatments. And, by the way, you didn’t haveinsurance, so you’re going to have to pay for theseout-of-pocket, and they are about $1,000 to$2,000. And you need to wear a sleeve for the restof your life.”

I have had patients who have had that done,and the depression that follows that and the traumaof that, to me, is just really unnecessary. Mostpeople after surgery are going to have someswelling. It would be unusual to not have someswelling in your trunk, in your breast tissue areaand in your arm. It usually resolves in six to 12weeks. The treatment is to use your arm. Move it,because moving it is going to help that lymphaticsystem function. Elevate it – that kind of swellingdoes respond to elevation.

Lymphedema, unless it’s very, very early, andeven then it’s a little questionable, does not respondvery well to elevation – maybe a smidge; not awhole lot – but [postsurgical] swelling will respondto elevation. You can do hand open-and-closeexercises; that will also facilitate the lymphaticsystem. Remember, this is not lymphedema, so ifyou have a gut sense that, “Oh, gosh, I have thisswelling [but] I just had surgery” and someone’stold you that, try to get another opinion, becauseit’s really not lymphedema.

WOMAN:I’m confused, too, now. I’ve got lymphedema.

I say it’s been like six years, but last year I had threesurgeries, and it would usually swell up my armmore after the surgery. The last one was inDecember. … It kind of swells up after thesurgery, but I’ve still got lymphedema. Do I needto go somewhere to make sure it’s not? Can I havethe swelling after the surgery and lymphedema?

TRUDY TURVEY, MS, PT:You could have both. If you already had

lymphedema and then you had some more surgery,you could have some additional swelling that goeson there. For that, the treatment would be thesame. You would wear your sleeve or yourbandages, whatever you’ve been used to. You couldget some treatments, some massage – I will domassage for this, but I would never put someone ina sleeve for this swelling.

Let me tell you this so maybe it will motivateyou. The earlier you get to it, the more likely it isto respond. If you would treat it now, it would bemuch better than if you wait six months, and you’llhave a good chance of having it go down.

WOMAN:The first time I got lymphedema, a doctor –

how did I find out I had lymphedema? They didn’tdo any type of tests. It just swelled up and I tookdifferent types of therapies for six weeks, and thenit went away.

TRUDY TURVEY, MS, PT:Well, we’ll talk a little bit about the going away

business, because it doesn’t always go away.

WOMAN:That’s what she said.

TRUDY TURVEY, MS, PT:Lymphedema is its own little monster. Let’s

talk about prevention, and then we’ll talk abouttreatment. … You could just go to bed for the restof your life, and you could still get lymphedema.I say that by way of telling you to throw out theguilt. This is not about guilt. You could get it; youcould not get it. It’s not because you stood on yourhead or you had too much wine or anything.Youjust get it.

People have said to me, “Well, I was reallybad.”Well, the last thing any of you need is toperceive yourselves as bad. You have had more thanyour lion’s share of things to deal with.Lymphedema is going to come or it’s not goingto come, and then the question is, “What do wedo?”There are a few things I can tell you, however,that had they not happened, this person, at leastat that time, might not have gotten lymphedema.

The first of them is infection. It’s not like yougo around asking for infection, right? Sometimespeople end up having maybe a second surgery.Maybe their margins weren’t clean, or whateverreason, and they get a little infection. They mightget some lymphedema. Patients who get that kind,for the most part, have a good chance of beingtreated and having it be minimal.

Of all of the things the NationalLymphedema Network [recommends], not lettingsomeone put a needle in that surgical arm isprobably the most important thing, because aneedle opens the skin. Bacteria get in there, andthe lymphatic system does not like having bacteriain there. I don’t care what shot it is. I have a patientright now who is 30 years out from her surgery.Thirty years – you can imagine that at that timeshe had the radical mastectomy. She never hadlymphedema until she got a flu shot 30 years later.Of all of the things in the world I think to tellpeople, it’s don’t let anybody put a needle there.That includes acupuncture needles. … Do not let

them do that. I don’t care where else they want toput the [needles], but not in that arm.

IVs: I had another patient who had a problemwith putting them in the opposite arm, but you’vegot to make the health care worker work a littleharder and find another place for that IV. She hadan IV put in her surgical arm, and she got armlymphedema and breast lymphedema. This isnumber one: Don’t let anybody do this.

Good skin care: Again, I say these thingsbecause these are things you can do. In the winterwhen we get these little cuts … on the end of ourfingers – they’re very prevalent, and it’s hard to notget them. Try to keep your skin very wellmoisturized, because dry skin is more prone tohaving openings and more prone to invitingbacteria in.

I urge people to use something that does nothave a fragrance, because you never know whenyou might have a reaction to a fragrance. Some ofmy elderly people, I tell them to just use the canolaoil in the cupboard. That’s great – non-aromatic,and it really keeps the moisture in. Put moisturizeron when your skin is still wet, not after you’vedried, because the whole idea of cream is to keepmoisture in. Once you’ve taken it away, the creamis just there.

Protective gloves: I urge people to do this fora couple of reasons. If they work with roses in thegarden, thorns can really cause a problem. I am agardener and I hate gloves, but around the rosebushes is a good place to wear them. Also, useprotective gloves when you’re reaching into theoven, because burns can cause lymphedema. Yourbody wants to heal that burn, so it’s going to senda lot of stuff there. Those are the two places Ithink are most important in terms of gloves.

Insect repellents: If you have an arm or a legthat already has some kind of impaired lymphaticsystem and you get a mosquito bite … it’s aninvasion of the system, and your body is going totry to heal that area, right? It’s the same thing as aburn. Use the insect repellents. I know people havea problem with DEET and all of that, but youcan use the other ones and just put them on a lotmore frequently. That’s a really important one. Ihad a gentleman who had primary lymphedema.He just all of a sudden had these legs that swelled.We had treated for about six weeks, and he waslooking great. He walked out in his garden withshorts on; his leg came back bigger than when Ifirst saw him because he had one mosquito bite.Please be careful about that.

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WOMAN:I was just wondering, is the lymphedema worse

[when there’s] bigger, more swelling? Is that howyou tell if it’s worse?

TRUDY TURVEY, MS, PT:Yes. That’s how it’s graded. There are a couple

of different grading systems for lymphedema, buta simple one uses mild, moderate and severe grades.Mild is less than an inch compared with the other.I don’t typically call that mild, but that’s the systemthat’s been set up. An inch to 2.5 inches ismoderate, and anything more than that is severe.

WOMAN:I also have a frozen shoulder that I developed.

If I do too many of the exercises for the frozenshoulder, the lymphedema comes and I get a fever.I never get that swollen, but I get a little swollen,so then we cut that down. Can you ever redirectyour lymph gland system?

TRUDY TURVEY, MS, PT:Yes – that’s what the treatment is aimed to do.

I’ll talk about that in a minute. I’d also like toaddress your frozen shoulder. When you say youget a fever, do you get a temperature change, ordoes your arm just get warm?

WOMAN:My arm and my breasts get warm, but I

actually get a fever.

TRUDY TURVEY, MS, PT:In that instance, probably what’s happening is

– well, one [possibility] would be the type ofactivity you’re doing and the intensity of it. Becauseyour shoulder is frozen, the lymphatic systemdoesn’t have a very good leeway, if you will. It’s notopen for that fluid to get through, and then it sitsthere, and then you get a little cellulitis. I’m goingto talk about cellulitis in a minute.

Signs of an infection: Infection is reallyimportant for you to treat – not tomorrow, notthe next day, but as soon as you think you have aninfection. This type of infection can land you inthe hospital if it’s untreated. What happens is thatif the lymphatic system is not working –remember, the lymphatic system is responsible forbringing those proteins and fatty deposits and allof that back, and if that sits in the system, it’s amedium for a bacterial infection without you doinganything. Just sitting there, you can brew aninfection. People say, “I didn’t do anything. I don’thave a cut or anything, and I have an infection.”And that is very true.

If you think you have [an infection], run, don’twalk, to your physician and get antibiotics. I tryto get my patients to think about this way ahead oftime. If they travel, they need to know where theyare going to get antibiotics if they’re out of thecountry. I’m thinking of one patient who had goneto Costa Rica. She was on a hiking trip, got a tonof bites and didn’t take antibiotics. Oh, mygoodness – she was so swollen, and not formonths, but for years. Really, [if you get] aninfection, take those antibiotics.

Take a scrip with you if you’re going to be inthe United States. If you’re out of the country,take the antibiotics with you. If your physician willgive them to you, take the antibiotics with you soyou can just take them immediately. Now, there isa difference between an infection and an arm thatjust feels warm. If the lymphatics get irritated –and they can get irritated by aggressive activity orbecause they’re going to get irritated – the armmay feel a little red, a little warm. That’s calledlymphangitis, by the way.

A lot of people postsurigcally have breasts thatare red and warm, and antibiotics don’t do anything.That’s because that’s not an infection. It’s really alymphangitis, and the thing that helps that the mostis the massage that I’m going to talk about – verygentle lymphatic drainage massage. [The rednessand warmth] can last for months, but that is notan infection. Any time you have redness andwarmth, though, you should at least try theantibiotics and see if that’s what’s happening.

Temperature and chills: If you havetemperature or chills, it’s gone a little too far. Youneed to get into your doctor or get into the ER. Ihad a patient who came to me who had prettysignificant lymphedema, and we had been treatingit. Her arm was a little warm, but the telling thingwas that she said, “Oh, Trudy, I’m so cold.”I mean,this was summer in Boulder, and she’s a bigwoman, so it wasn’t like she was skinny and didn’thave anything to keep her warm. Systemically, shewas getting an infection. Not only was it in herarm, but she needed IV antibiotics and needed tobe in the hospital. Don’t ignore temperature andchills – very important.

Prevention of burns: Well, we’re not supposedto be getting a sunburn anyhow, right? That shouldbe pretty clear to people. When you think about asunburn, it’s a burn. It’s not just, “Oh, I’m tan.”It’s a burn, and a burn is going to require yoursystem to respond to it. Again, a lot of blood goesto that area and tries to heal it. I’m hoping that if

you understand the physiology of it, then whenother circumstances come up that I missed anddidn’t address, you can say, “Huh, this is probablywhat’s going to happen here. I better take care ofthis this way.”That’s why I’m emphasizing this.Use oven mitts when you reach into the oven soyou don’t get a burn.

Saunas and hot tubs – the biggest question Iget is, “Can I please go in the hot tub?”Well,physiology, again: If your core gets hot, how doesyour body try to cool down your core? It sendsblood out here, right, or to the legs? If it sends bloodout here and your lymphatic system is compromised,it has a devil of a time getting rid of that.

What I tell people is to go in up to here. Keepyour arms out and keep part of your trunk out sothe heat can be dissipated without sending it outto your arms, but go ahead and go in. Saunas arethe same way. It’s a little harder to keep part of youout of the sauna, however, so I feel like maybe youdon’t want to do that. To tell you the truth, do wehave good research about this? No. Thoserecommendations are purely based on physiologyand what might happen. Have I ever had a patientcome to me and say, “I got this when I was in thehot tub”? No.

I’m a big believer in living your life, by the way,and not giving you a long list of don’t-dos. Theseare the things I’ve seen problems with, so I will tellyou those. I’ve seen more than one problem. Theseare not things I’ve seen once in my lifetime withlymphedema. I’ve seen it over and over again. Theonce-in-a-lifetime things could have been anything,and I’ll give you an example of that a little later, too.

Constriction: The biggest issue might bebackpacks, hiking, heavy purses. If you were at riskfor lymphedema and you hang something here,you are shutting off that pathway that’s alreadyimpaired. A good thing to think about doing: Geta fanny pack; get a purse that doesn’t hang on yourshoulder. Besides that, most people have shoulderproblems after their surgery anyhow, and that purseis not helping them. I like to have people try tominimize that, and don’t carry everything but thekitchen sink in it, either.

Blood pressure: This is a big one. Everybody’sbeen told, “Don’t have your blood pressure takenin that surgical arm,” because one person said, “Igot my lymphedema after I did the blood pressure.”Probably not. There was a study done, relativelyin the last couple of years, where they took womenwho had carpal tunnel problems, women who hadhad breast cancer surgery – carpal tunnel, for those

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of you who don’t know, is basically a wrist-painissue – and when they do that surgery now theyput a tourniquet on, and you have that tourniqueton for four hours.

None of those people developed lymphedema,and in none of the people who had lymphedemadid it get worse. Is the blood pressure thing a realissue? I would say not. Do I still take bloodpressures on other arms? Yes. Because people areso freaked out about it, it’s not worth it to me tofreak them out more and give them the big, longlecture about the study. But, just so you know, it’sprobably really not the issue.

Range of motion: It is really important foryou to have the best range of motion possible inthat surgical arm. That includes minimizing scartissue. If you have not seen a physical therapistafter your surgery, you should see a physicaltherapist who can evaluate the extent of scar tissueand can treat it. Physical therapists know how totreat it, and it’s really important, because just havingscar tissue massage can minimize lymphedema.That’s all it might take.

Now, if you have full range of motion andeverything feels really lose in there, chances are youdon’t have a lot of scar tissue. But there are manypeople walking around whose range of motion isless than what I would say is desirable, and theyhave a fair amount of scar tissue. Some people scarmore than others internally and externally. Youknow, when you get cut, some people get scarsthere, and for other people it’s just flat as could be.That’s just a difference in our bodies and howmuch keloid we produce.

Scar tissue massage is a very important thingif it’s appropriate for you. I was at a talk severalyears ago where a woman on the panel was agardener, and she had some lymphedema and wastold essentially to never garden again. Well, if youtell me to never garden again, I’m checking out,because that is my love. It’s my therapy. It’s the onlything that keeps me sane, and that’s what was truefor her. She was just in tears.

She was also told she couldn’t go to altitude. InColorado? What is that about? I couldn’t really sayanything in that panel because the person who wastreating her was on the panel, but the woman satnext to me in the next conference and I asked herif she’d had PT. She said no, so I referred her to aPT in her area who did scar tissue massage on her.Her lymphedema went away. She was able to doall this stuff. So, don’t stop – I just want to urgeyou to get good treatment.

WOMAN:What kind of doctor or massage person

would do scar tissue massage?

TRUDY TURVEY, MS, PT:A physical therapist.

WOMAN:But a physical therapist dealing with ... ?

TRUDY TURVEY, MS, PT:Dealing with lymphedema and breast cancer

surgery.

WOMAN:You haven’t mentioned, I think, repetitive

motion.

TRUDY TURVEY, MS, PT:I’m getting there. We’re going to talk about

gentle massage. Go get that massage, but aroundyour shoulder and your trunk and your surgicalside, it should be very gentle, not deep tissuemassage. Really deep tissue massage can worsenlymphedema or produce it if you’re at risk, so makesure your massage therapist realizes that and don’tdo deep tissue massage there.

Active range of motion: This is my plea to getthe best range of motion you can get after yoursurgery. That does not mean that you do the Reachto Recovery exercises and say, “Oh, great, I can getup here.”You know what? That’s not anywhere nearfull range of motion. You really need someone toevaluate that. Those Reach to Recovery exercisesare great to get you started, but it’s a rare bird whocan figure out, “I don’t really have full range ofmotion and I need someone to help me with this.”Please go for that.

Progressive resistance training: This is the wholerepetitive motion issue. For a long, long time all ofyou in the room – three years ago, even – would havebeen told to minimize your exercise and don’t do anyrepetitive motion. Probably some of you are beingtold that even today. It’s not the repetitive motionthat’s a problem. It’s the eight hours of canoeing orthe eight hours of washing your windows that are aproblem when you haven’t done it in months.

The research is showing us, and I will say to youthat PTs’ experience, PTs who specialize in this, isthat if you train someone and start slowly and doprogressive resistive training and get that arm strongwith full range of motion, then the repetitive motionis not an issue, unless she does it for eight hours.But you know what? I shouldn’t be doing eight hoursof repetitive motion. Some of it is a little bit ofcommon sense in terms of what you do.

When I see people for exercise – these arewomen who maybe were pretty active prior to theirdiagnosis – and I hand them a one-pound weight,they look at me like I’m crazy, but I’m not. Theyneed to start out very low, some of them withoutany resistance, and build up. I build them up fromone pound, five repetitions, up to ten. No painand no problems? Great – two pounds, fiverepetitions, then six, seven, up to ten and comeback; then three pounds.

By and large, they do just fine. They have veryfew shoulder problems, unless they had preexistingshoulder problems; then it’s a little different. A lotof women get rotator cuff issues, maybe becausethey were really active before or they were reallyweak before, and there are some specialconsiderations there. By and large, though, a slow,progressive resistive training program is how youwant to do it. It may seem silly to you to lift onepound if you lifted 25 before, but I guarantee youif you do it that way, you’re going to be far happierand you won’t set yourself back.

WOMAN:I was thinking more like using a computer

mouse or washing dishes or even walking outsidewith an arm swinging, like, in the heat. I haven’thad swelling, but all of those caused my arm toache for a longer period of time. One of the youngwomen I know who has lymphedema, it startedto hurt after she was working on the computerand using the mouse quite a bit with that hand. Ijust wondered what you thought of that.

TRUDY TURVEY, MS, PT:The question – without knowing her, of course

– that I would have is whether lymphedema wasbothering her arm or she’s developing a carpal tunnel,which is almost like an epidemic that we have.

Probably what happened in that instance is… she had irritation. She probably had someinflammation of her forearm tendons because ofthe computer work. Again, the body sends blood[and nutrients, etc.] to heal it, and her whole armswells because she has a compromised lymphaticsystem. What should she have done? She probablyshould have started on the computer very slowly,for a few minutes. Work up to five, work up toten, so those muscles are not going to get inflamed.It’s the inflammation that’s the problem. It’s notthe activity itself; it’s what the activity does to us.

WOMAN:So, an arm that aches without any swelling –

is that an early sign of lymphedema or a concern?Page 5

TRUDY TURVEY, MS, PT:Well, it would be a concern for me. What you

need to know is that for an arm to be visiblyswollen, the tissue has to have an increase of about60 percent of its fluid in there. I can’t measure ituntil it’s that high. Chances are, there is some fluidin there, and one of the best tests for that is to findsomeone who’s a specialist who can wrap you withshort stretch bandages and see if that helps. If it’sa lymphedema issue, I would be willing to say thatis really going to help you. Most people say, “Oh,gosh, this feels so good.” Do you live here?

WOMAN:Yeah.

TRUDY TURVEY, MS, PT:If we could find someone who knew how to

do this wrapping for you, that would be a goodthing.

WOMAN:What do you mean by short stretch?

TRUDY TURVEY, MS, PT:They’re called short stretch bandages. When

you think about Ace bandages, if I pulled it likethis, it would stretch forever, right? Well, shortstretch, that’s the amount of stretch. Those are thetypes of bandages that are used in lymphedematreatment. I urge you to keep walking, though. Iwould never say to you, “Don’t walk.”Let’s figureout if we can help with this achiness and figureout why it’s really aching.

Is it lymphedema? Is it postsurgical weakness?There are a lot of reasons for that aching tohappen. Again, let me say to you, please, if you’renot exercising, please find yourself someone towork with you on progressive resistive training aswell as some other stuff, which we’ll talk about.It’s very important for you.

Normal body weight: Not that people whohave normal body weight don’t get lymphedema,but increasing your weight or being overweight atdiagnosis increases the risk. I have had people whonormalized their body weight after they came tome for lymphedema whose lymphedema by andlarge was not visible to anyone but them andmyself. Losing weight makes a big difference inlymphedema.

WOMAN:What about waxing underneath the affected

arm?

TRUDY TURVEY, MS, PT:Ouch. I don’t know. If you wax, having never

done it, I’m thinking it would cause inflammationthere. I don’t know. Those of you who do it, you’vegot to tell me. Does it cause inflammation?

WOMAN:If you’re pulling your skin, it could probably

…

TRUDY TURVEY, MS, PT:I would think it would inflame that area.

WOMAN:It would be like sunburn.

TRUDY TURVEY, MS, PT:Yeah, it would be an irritation, and the body

is going to want to heal that. It may depend onwhether you’ve always waxed and your skin istoughened there, whether repeated waxing wouldcoarsen the skin. I don’t know.

WOMAN:No, it’s much softer.

TRUDY TURVEY, MS, PT:Oh, it’s much softer? Really? I would look to

see if it’s red. That would be the indication to methat it’s a little inflamed. It may be just fine. Again,I would hate to tell you to do that, but people havedone worse and been just fine. There is certainlyno study.They do tell you to shave with an electricrazor.

I don’t know about you guys, but I have nevercut my underarm with a regular razor, so I think,well, why would you do that? The caveat would beover the scar that you had your lymph nodesremoved from, because that doesn’t have very goodsensation. I would be very careful there, becauseyou might not know you’ve nicked yourself.

WOMAN:Doctor, as opposed to pains in the arm itself

– I don’t have any pains in my arm – but I do oftenenough in the armpit itself. Would that be relativeto lymphedema in some way?

TRUDY TURVEY, MS, PT:How long ago was your surgery?

WOMAN:Ninety-eight.

TRUDY TURVEY, MS, PT:I would say those are more related to scar

tissue. When you get nerve regeneration, the nervedoesn’t always regenerate and produce normalfeeling. The medical word for it is “dysesthesia,”kind of like dysfunction, or abnormal feeling.Sometimes that’s mixed in with the scar tissue.Sometimes you can get little nerve endings thatare stuck in that scar tissue, which is why scar tissuemassage is kind of nice. Also, at least people tellme, it kind of never really feels the same again.Those might be some of the reasons.

WOMAN:Have you found swimming to be helpful?

TRUDY TURVEY, MS, PT:I think swimming is a great activity, once you

have good range of motion and if you start slowly.It keeps you really limber. The water pressure tendsto push fluids back into the system, and it keepsyou very fit, so I think it’s a great activity. We’ll talkabout more activities, too.

We now know that moderate exercise and –contrary to that study that came out a week anda half ago – a diet with about 20 percent fat doesreduce recurrence. Is it going to reduce recurrencein 100 percent [of people]? No. But it is aseffective as or has the same risk reduction as takingtamoxifen. Wow. That’s something you can do foryourself. I’m not talking about running or doingmarathons. I’m talking about going out andwalking four or five times a week and doing someweight training three times a week.

You all know – those of you who have beenintroduced to the lovely tamoxifen and what itdoes – that weight gain is part of that. We’re tryingto mitigate that weight gain, and it’s also going tohelp the lymphedema. The lymphatic systemresponds to activity. It does not respond toinactivity.Think about patients who have been inthe hospital in bed for two weeks; if you look attheir extremities, they tend to be swollen. That’sbecause their lymphatic systems are not very active.Exercise is very important; that’s a big, bigmoderator for these things.

Signs of lymphedema: Well, often someonecomes in and says, “My arm feels heavy or full.My skin feels a little tight.” Everybody, look atyour wrist on the side. When you look, those ofyou who don’t have lymphedema, you should beable to see tendons and veins pretty clearly on bothsides. Sometimes one of the first signs is, “Huh, Ican’t see that tendon on this side, and my vein, it’s

Page 6

not the same.”Don’t ignore it; have someone lookat it. Also, your jewelry might be tight: “My ringis tighter. My watch is tighter. My sleeve is tighter.”Something is going on there, so you need to findsome way of addressing that.

Let’s talk about treatment. First of all, goodskin care. I already talked about that. Keep yourskin moist, clean; minimize the chance for bacteriato get in there. The type of treatment that’s mostrecognized for lymphedema includes the manuallymphatic drainage. It’s very light massage.Remember, the capillaries are right underneath theskin, so the skin being moved by that very lightmassage opens those lymphatics.

It’s very important to understand that thereare people out there, including PTs and OTs, whonever have had any specialized training, so theydecide the best way to treat this person’s swelling isto pump the arm up toward the chest, becausethat’s where all fluid is supposed to go, right? Well,they do it deeply, and to tell you the truth, it doesn’treally work. When you do deep massage, you’repushing against those lymphatics. You’re probablyclosing them rather than opening them.

If a therapist who doesn’t have lymphedemaexperience says, “Oh, I can treat this,” you’re goingto go, “Let’s talk about this a little bit. What kindof massage are you going to do? Where were youtrained? What kind of training?”Let’s talk abouttraining, all kinds of training. There is Voddertraining. There’s Leduc training. There are differentmethods. There has been no study whatsoeverthat says Vodder training is better than Leduc isbetter than this.

What you really want to know is whether theyhave a good sense of this whole program oflymphedema management. If not, they won’t dothe rest. They won’t talk to you about compressionsleeves and bandages. They won’t talk to you aboutthe exercise research. Be wary; be a good advocatefor yourself in terms of these people.

Let’s talk about compression bandages andsleeves. Along with the massage, you want to havesome type of compression, because thecompression does a couple of things. It supportsthe tissues, and it feels better.The sleeve does mostlythat. For some people, it minimizes the fluid that’sgoing out in the arm, and it maybe treats it a littlebit. For other people, what treats better are thesebandages that I just spoke to you about. In fact, weknow that with those bandages on, particularlywhen you exercise, you can increase lymphatic flowby 15 times its normal rate. Wow, that’s great.

If you have lymphedema and you’re exercising,you should have bandages on, or the sleeve. I thinkthe bandages work better. They’re a nuisance – nodoubt about it – but I think they work better. Dothey work for everybody? No. There are a numberof people in my practice for whom they don’t doa thing, and neither does massage. They end up insleeves because it’s the only thing that seems tomatter, except for the exercise and losing weight.This person who’s treating you should know allof this. When you exercise, if you havelymphedema, use the bandages.

WOMAN:Do you always have to get the bandages put

on you, or can you put them on yourself ?

TRUDY TURVEY, MS, PT:I teach people to do it themselves. It depends

on whether you’re left- or right-handed. If it’s yourright hand and it’s your left arm, you do prettywell. I teach families, whomever.

WOMAN:I have a question about the compression sleeve.

I had a sleeve that was custom made. They did themeasurements and all of that, but the sleeve seemsto cut into my inner arm. If it’s a custom-madesleeve, is there any hope that getting a different onewould help in that particular area, or is thereanything I could put in that particular area thatwould help?

TRUDY TURVEY, MS, PT:When you say it cuts, do you mean it rubs or

it actually is too tight?

WOMAN:It rubs and causes almost an abrasion. It’s not

tight at all, but it rubs. I still have the scars fromthe last time I wore it, so it’s a problem.

TRUDY TURVEY, MS, PT:Even though you were measured, it probably

was not custom. You can get measured. Customsleeves are for arms that have distorted shapes orare really, really big, and you don’t look to me likeyou qualify. Yes, they measured you, which meansyou get a size one, two, three or four. That wouldbe my first question to whoever got it for you. Iwould take that sleeve and say, “This isn’t working.I need something else,”because a sleeve should notcut into you. It should not cause problems, exceptat the elbow there are some problems.

WOMAN:On the elbow side, I had no problems, just on

the inside.

TRUDY TURVEY, MS, PT:Probably that wasn’t a custom sleeve – I’ll

repeat that. What you can do is have a piece ofsilk sewn in. They can do that at the place wherethey ordered it, like Juzo or Jobst, depending onwhere you got it. People take it to seamstresses.That would be the best solution; anything else willjust kind of crinkle and be a problem. Yes?

WOMAN:I was going to answer her question. Maybe the

sleeve was too long. You can take some of the slackout of it or put something ...

TRUDY TURVEY, MS, PT:It’s a frequent problem, that elbow stuff. It may

be a little too long or not fit you snugly enough atthe top to stay up. That could be a problem. Iwould recommend, if you’re going to get an armsleeve, to get the silicone tops. For many people,the ones without a top slide down a little bit. Itdepends on the shape of your arm as to whetherit slides down. You might check that out. Yes?

WOMAN:My question is along the same line as the

previous question, except that I’m having problemsright here in the thumb area. It’s all red.

TRUDY TURVEY, MS, PT:Is that a glove, or is that part of the whole

sleeve?

WOMAN:It’s one sleeve. It goes from here up to here. It’s

getting sore and red in there. Would I do furtherdamage if I put something like some cotton orsomething in there?

TRUDY TURVEY, MS, PT:I don’t know that you’d do further damage.

First, it’s not fitting you well if you’re red. That’s aconcern. There is a type of soft, cotton batting.Are you from here?

WOMAN:I’m from Houston.

Page 7

TRUDY TURVEY, MS, PT:You could try cotton batting, and there are a

lot of different types of gloves. Some of them haveseams in there. Do you have a seam? Sometimesthat is just not the right kind for you. It fitseverybody differently.

The one Margaret has just brought to me –see, hers is very different. Hers is separate. It’s alsoa lighter weight. With the ones that have the sleevesbuilt in, you’re kind of committed to wearing thathand piece all of the time, so you can’t take it offfor dishes and you can’t take it off to do anything.I try to get people two separate pieces. But itshould not be so tight. We have repeated problemswith that.

If they measured you for a true custom one,you really have the right to go back and say, “Thisis not working for me.”With the standard ones,which are a lot less expensive, you end up havingmore of those problems and trying to solve them.If it’s causing redness anywhere, though, you don’twant that. That’s irritating your skin, and it couldcause breakdown. You definitely want somethingdifferent to be done.

For those of you who have to wear sleeves butwant to be fashion bunnies at the same time, wehave something called the [Sliver Sleeve]. Kim isgoing to show it to you. Stand up, Kim, and showyours. A lot of people don’t like that boring beige,and if you want to go out, I just wanted to showthis to you. This is Kim’s new company, and shehas some great bookmarks up here to show youwhat stretches you should be doing. … They’re alladjustable, and you can ask questions about themafter. I think they’re pretty cool. Another question?

WOMAN:I just had a question. I don’t have lymphedema

yet, and I hope I don’t, but in lifting weights andthings like that, should you wear the sleeve whenyou’re lifting or doing exercise like that now?

TRUDY TURVEY, MS, PT:My next thing about sleeves. If you have

lymphedema, you should wear them. If you don’thave lymphedema, I don’t know. I have a real thingabout getting people to wear sleeves if they don’talready have lymphedema. It’s like being told towear one when you fly.

Let’s talk about flying. That recommendationcame after a retrospective study, which means theywrote to everybody who had lymphedema on thislist and asked them how they got theirlymphedema. One of them wrote back and said

she got it after a plane ride – one out of 100women. How does she know she got it because ofthe plane? How does she know she didn’t get itbecause she lifted her suitcases, because she wasunder stress, because she had a lot of salty food,because she sat on the plane like this?

There are a lot of ways to get lymphedema.Unless someone is really scared, I don’t usually getthem [a sleeve]. The same with weight training –if you don’t have lymphedema, no, that’s not whereI start.

WOMAN:I was told specifically that … you have to do

that.

TRUDY TURVEY, MS, PT:I never had a patient who flew who came back

and said her arm swelled. I just had a patient whoflew all the way to India and back who haslymphedema who said she didn’t wear anythingand it was fine. Does that mean that out of thiswhole room one person isn’t going to come backswollen? Maybe, but why? Is it really because youwere on the plane, or is it because you decided tolug those suitcases and eat salty food and caffeineand you didn’t hydrate well enough? I don’t know.I would not recommend that you [wear a sleeve] asa preventive, and the reason is that we don’t haveany study. We have no study at all that says itprevents it, so that’s a huge market and a lot ofmoney.

WOMAN:On that same note, I was told never to lift

anything more than 15 pounds.

TRUDY TURVEY, MS, PT:Oh, my gosh. Why don’t you just go to bed?

WOMAN:I know.

TRUDY TURVEY, MS, PT:I’m sorry. This just drives me crazy. You can

lift 15 pounds, but not if you haven’t ever lifted15 pounds since your surgery. You get yourselfstrong so that 15 pounds is nothing. That’s thewhole point of it, and that’s the research that’scoming out. That is not a recommendationanymore. It’s a recommendation if you’re justpostsurgical and you haven’t had any PT and youhaven’t healed and you haven’t done any exerciseto get you there.

WOMAN:I’m not sure whether this is lymphedema, but

it sounds like it, based on the slide you just showed.If you have tightness in your arm and your wrist isswollen and your watch isn’t fitting anymore, doesit just go away? And if it does just go away, is itnot lymphedema? Don’t you have some kind oftreatment in order to make the swelling go down,like you mentioned?

TRUDY TURVEY, MS, PT:Maybe, but I will tell you that for a lot of

people, it does go away.

WOMAN:It can just go away by itself ?

TRUDY TURVEY, MS, PT:It could. I would never tell anybody to not get

it looked at, though, because it might not [goaway].

WOMAN:If it does go away by itself, should you take

precautions, like wearing the arm sleeve to gofly, even though you said you don’t have to wearit? Do you have to take precautions then? Ifyou’re prone to it once, are you prone to it overand over again?

TRUDY TURVEY, MS, PT:Yes. Once you have it, you have it. There is no

cure for lymphedema. Can it be minimized? Canyou actually say, “Well, my arms look pretty closeto normal”? Yeah, you can definitely get there. Butonce you are at risk for lymphedema, you arealways at risk for lymphedema. These precautionsthat I’ve given you, you always should have thosein your head. Should you wear a sleeve every timeyou fly? As I said, I don’t think we know that.People tell people that, but there is no research thatsupports doing that.

WOMAN:I just gained a lot of weight, so I’m not used

to seeing my arms as large as they are, and it’s hardfor me to tell. Today I had a short-sleeved shirton, and on my surgery arm, the sleeve was tighterthan on the other one. What else can I look forto see if that’s a sign of lymphedema or if it’s justfat? My arm is irritating me, but it has been sinceI had surgery.

TRUDY TURVEY, MS, PT:How old is your surgery?

WOMAN:August.

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TRUDY TURVEY, MS, PT:Was the sleeve tighter on the non-surgical arm?

WOMAN:It wasn’t as tight. It was tighter, yeah. I mean,

I’ve gained a lot of weight. It was tighter, but itwasn’t as tight.

TRUDY TURVEY, MS, PT:Are you right-handed or left-handed?

WOMAN:I’m right-handed.

TRUDY TURVEY, MS, PT:Which is your surgical side?

WOMAN:My left.

TRUDY TURVEY, MS, PT:You should have somebody look at it to see.

The best answer would be, “You’re fine,” but it’sdifferent, isn’t it? When something’s different thanwhat it was, that’s when you get it looked at.Hopefully the answer from somebody who reallyknows lymphedema will be, “We’re just going towatch this, no big deal.” I say that a lot. Like,“Okay, let’s just try this.”

WOMAN:I just didn’t know if there would be any other

obvious signs that I could look for.

TRUDY TURVEY, MS, PT:Well, that’s a big obvious sign. The other thing

you could do is measure yourself at home or havesomebody measure you. Measure yourself beforeyour wrist bones, at your elbow and then maybein the middle of your arm on both sides. If thereis a difference of more than a centimeter, or morethan a quarter of an inch, I would want you to belooked at. You’d have to go to your physician.

Now, here is the thing. I have to tell you, I’mmarried to a physician, so I get to say anything Iwant about physicians. Our physicians are focusedon the primary thing, which is the cancer, and that’sas it should be. Many of them are not going tothink a tiny bit of swelling is [a problem]. It’s yourbody and it’s your life, and I urge you to say, “Well,I appreciate that you see it that way, but I wouldlike to see a physical therapist, and please write mea prescription.”

There is nothing wrong with being your ownadvocate. Don’t take that, “Well, you’re okay.”Youknow something is different, right? So act on it.The worst that could happen is that somebodysays, “Yeah, I think this is lymphedema; here iswhat we need to do,” and you’ll feel better ratherthan it getting worse.

WOMAN:I was diagnosed at 25, and I’m 16 years out.

(Applause) Sixteen years ago, they didn’t ever tellme not to do these things, and I’ve been doingthem for 16 years. In the past six months or so,I’m having an extreme amount of swelling on theleft side of my body, which is where my surgerywas. It’s not just my arm and my trunk, but all theway down into my leg, my ankles, my feet, toes,the whole shebang, and a lot of joint pain.

I’m confused. Could it possibly belymphedema? Do I need to look at something else?My doctor just gave me Lasix. I can’t say it helps.After flying in yesterday, I have to admit, I swelledup like a balloon on the left side of my body, andI’m very uncomfortable.

TRUDY TURVEY, MS, PT:Did you take the Lasix?

WOMAN:Yes.

TRUDY TURVEY, MS, PT:Did it help?

WOMAN:No.

TRUDY TURVEY, MS, PT:Lasix does not help lymphedema – that’s

number one.

WOMAN:What is Lasix?

TRUDY TURVEY, MS, PT:Lasix is like a water pill. It gets rid of water.

WOMAN:It’s a diuretic.

TRUDY TURVEY, MS, PT:Yes, it’s a diuretic. Lasix doesn’t help. Almost

everybody gets Lasix to try. I’m not clear aboutwhy you would swell on the entire left side of yourbody. That doesn’t make physiological sense interms of just your cancer surgery. If it’s new andthey haven’t quite figured it out, I would ask themto do a few more studies to try to find out why,because that’s not normal. Having both of yourlegs swell on a flight, that’s perfectly normal. Mostpeople do; that I can see. Swelling in your left arm– that might be lymphedema.

WOMAN:Normal?

TRUDY TURVEY, MS, PT:But it’s kind of odd that it would also come

with swelling in your leg. I’d be asking them tofigure that out. You have to also remember that ifyou’re on a new medication, medications can causeswelling. Arimidex can cause joint pain and someswelling. Try to look at everything that’s changed.

WOMAN:I don’t actually see an oncologist anymore.

Three years ago, my oncologist said he didn’t needto see me anymore. Do you think I should startwith an oncologist? Should I see a family doctor?Where do you think I should start?’

TRUDY TURVEY, MS, PT:I’d be at the oncologist.

WOMAN:Regarding the repetitive motion discussion, I

have a couple of things that I just want youropinion on. You were talking about carrying apurse. What about carrying things like bags down?

TRUDY TURVEY, MS, PT:That’s okay as long as it doesn’t have the

kitchen sink in it and your arm is prepared to carryit. I think that’s fine.

WOMAN:What about pulling something like a suitcase?

You were talking about lifting a suitcase. I understandyour point was whether you’re prepared to lift thatkind of weight, but pulling something or pushingsomething, like sweeping or a vacuum cleaner?

TRUDY TURVEY, MS, PT:If you’re healed surgically and you’ve been

active and you start slow and you don’t decideyou’re going to clean the whole darn house, yeah.Those are normal activities, and you should beable to do them.

Page 9

WOMAN:Or you can use it as an excuse not to do that

anymore.

TRUDY TURVEY, MS, PT:Well, that, too. Let me see if I can just finish

the slides, and then I’ll stick around for any otherquestions. Deep breathing: One of the things thelymphatic system responds to – it facilitates it, itmakes it more active – is deep breathing. Whenyou are exercising, if you are treating yourself interms of lymphatic massage, deep breathing isreally important. It creates a pressure inside thechest. It helps to empty the system. It pulls in theparasympathetic nervous system, which is yourcalming one. That’s what facilitates the lymphaticsystem versus the sympathetic one, which is yourfight-or-flight, let’s get out of here kind of thing.That’s a really important thing.

Again, normalize body weight. Exercise: Icannot stress it enough. Flexibility exercises,strengthening exercises, aerobic exercises, corestrengthening exercises – all of those things aregood for you. Everybody in this room should bedoing that if for no other reason than it’ssomething you can control. It’s a way to hedge yourbets about recurrence. It’s going to make you feelgood. It’s going to improve your quality of life,and it’s going to help with lymphedema if youhave it. I heartily recommend that.

Well, you all asked me about simple things.Let me tell you some of the wild things peopleare doing. Has anybody seen the dragon boatstuff ?

WOMAN:Yeah.

TRUDY TURVEY, MS, PT:It’s so exciting. These women in Canada, all

breast cancer survivors, some with lymphedema,some not – Susan Harris started this with one ofher patients and trained people to row these dragonboats and compete. They did progressive resistivetraining, flexibility and aerobic activity, and youknow what? No one’s lymphedema is worsening,and no one got lymphedema doing this. There arenow, I think, over 30 dragon boat teams in Canada,and it’s gotten very big in Australia, I’m told – over31 teams.

WOMAN:They just did it in Houston a couple of

months ago.

TRUDY TURVEY, MS, PT:That is great. Look at that kind of activity

that people are doing. Golfing: Linda Miller is atherapist in Philadelphia – those of you in thatarea, Linda Miller is, I think, one of the besttherapists you could go to; I trained under her –and she takes her patients golfing. She thinks it’sone of the best things for range of motion,strengthening, you name it.

Walking. There is a study right now on benchpresses to see if it’s a problem, since you’re toldnot to do this. Swimming. Dancing. Sherry Lebedhas put out a video on dancing for lymphedema.I don’t know if it was her or her relative who hadbreast cancer surgery. Anyhow, it’s kind of cool.Triathlons – we have patients doing triathlons.

Don’t limit yourself, but do it smart. Figureout what it is you need to do to get strong andflexible, and take care of yourself and figure outthe best way to do it. Don’t give up something youlove to do.

WOMAN:Just as an aside, you guys, I ran a marathon

seven months post-surgery, and my arm didn’t getany worse for the wear.

TRUDY TURVEY, MS, PT:Yay!

WOMAN:Not that I like doing them, but I was told not

to do push-ups because of the downward weight-bearing motion. Is that just a myth also?

TRUDY TURVEY, MS, PT:Yeah, I don’t see why you can’t do push-ups. I

wouldn’t tell you to do 20 to start, but ...

WOMAN:Oh, I wasn’t.

TRUDY TURVEY, MS, PT:There is a way to progress push-ups, too. You

start on the wall, which is much easier than liftingyour body weight. Boy, that would be great foryour scapular muscles. What are the problems withexercise? This is where people get into trouble: toomuch, too fast. They don’t warm up and they don’tcool down, so your system doesn’t get a chance toget back into an equilibrium. You need to graduallybuild your endurance for all activities, bothmuscular and cardiovascular.

Vigorous, repeated activities when you’re notprepared – those examples I gave you were real life.Someone who was really fit prior to her cancerdecided she was great. She went out and canoedfor eight hours. She could have just done that fora couple of hours; she didn’t have to do the wholeday. That’s the kind of stuff that happens.

Keep hydrated. Keeping hydrated facilitatesyour lymphatic system, makes it move more fluid.If you have lymphedema, during these activities,do wear your sleeve and/or bandages.

What’s new? Well, gosh. I wish I could tell youwonderful things are new. I will tell you a couple.Something called kinesiotaping – anybody knowabout this? What’s your experience?

WOMAN:I developed lymphedema four years post-

surgery, and I’ve tried basically everything at thisstage. I tried the kinesiotaping as well. This is inthe past couple of months. It had a short-termeffect. When I put it on or wore it, you could seethe difference, but I wouldn’t wear it all of the time.I just continued to wear my sleeve. But it was easyto wear.

TRUDY TURVEY, MS, PT:We need more research in this. Let me explain

to people. Kinesiotaping is a way of taping, andyou tape along the lines of where you want thelymphatic flow to go. Margaret’s experience wasthat it helped while it was on. Did it last for anytime after you took the tape off, Margaret?

I’ve had a couple of patients I’ve tried it on.One was a post-surgical total knee replacementwith a huge amount of swelling. I also did amassage. But I couldn’t keep the bandages on her,so I thought, “Oh, heck, I’ll just try this.” I wasabsolutely amazed. The next day, she came in andit was probably down a half-inch. Her swelling wasa little different from lymphedema swelling.

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I just tried it on another woman whoseswelling was the result of an infection, so it wasrelatively new swelling. While it didn’t change thegirth, what it changed was the induration, or theamount of cellular debris, so there was somechange in the lymphatic flow.

My sense is that we need some more research.It may be that the extent of fibrosis in the arm isthe dictator of how well the kinesiotaping works.I don’t know, but I think it’s an interesting area thatwe’re looking at.

There is a physician in Arkansas looking atlaser and infrared. It’s a preliminary study; thereare no results. I did have a patient who usedinfrared on her leg swelling. She felt it helped agreat deal. I have mixed feelings about it, becauseI continue to treat her. I’m not really sure. Thenagain, only she knew how her leg felt.

Then there are homeopathic remedies. Doesanyone have any experience with anything that theyfelt worked? There are a couple of things. Theyare doing a study at [University of Wisconsin]-Madison where they’re looking at horse chestnut,which has been used in Europe for years for venousinsufficiency…

The other big thing is that in Australia and anumber of countries they have used benzopyrenes,otherwise known as coumarin – not Coumadin,which many of you have been or are on, butcoumarin. This helps to break down that cellularstuff and really helps lymphatic flow.Unfortunately, there were a lot of liver toxicityissues. There are foods that are high in coumarin:celery, for example. I thought to myself, “I wonderif that would have the same effect as the coumarinitself.”You can get coumarin through somepharmacy in Texas. You would have a very differenttime getting a physician to prescribe it for you here,however, because of its toxicity.

We’re looking more and more. A new researchgroup that’s been established is feeling like manyof you with lymphedema do: that there has got tobe some other way to do this. So, with hope, wemay see that change.

WOMAN:How much celery are you talking about?

(Laughter)

TRUDY TURVEY, MS, PT:I have no idea. I only throw that out, as I

thought, “Well, that’s very interesting that that’sin there.”There is no study. There is nothing totell you. You might turn green before it doesanything, so I don’t really know. …

LANITA MOSS:A quick housekeeping, guys, because we’re

running over. Thank you, Trudy, very much. It wasvery informative.

TRUDY TURVEY, MS, PT:Thank you. Great. Thank you. If anybody has

any questions, I’ll be happy to be here.[END OF TRANSCRIPT]

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