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LANITA MOSS:
Welcome, everybody, to “LymphedemaPrevention and Treatment: What You Need toKnow.”My name is Lanita Moss. I am one oftheco-founders and vice president ofthe YoungSurvival Coalition [http://www.youngsurvival.org].It is an absolute honor to be here this weekend withso manyyoung women [and] that somehow, outofdumb 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 ofall ofyou guys, and I’m glad youmade the trip to Denver this weekend.Iwould like to introduce our speaker, TrudyTurvey, the president and clinical director of HealthLinks Clinic in Boulder, Colorado. She hasover 30 years ofexperience as a clinician,administrator and teacher. She’s well known forher expertise in the areas ofpostsurgical therapyfor breast cancer,lymphedema and exerciseassessment and training. She has been a speakerfor the nationally acclaimed Day ofCaring. Shevalues her personal relationships with her patientsand, above all, offers individualized quality care toeach ofthem. 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 ofpeople who are here. HealthLinksClinic in Boulder addresses the needs, such aslymphedema, ofindividuals who have beendiagnosed with cancer. We try to help peopleonce they’re diagnosed look at their lives in termsofsurvivorship – what are you going to do to bethe healthiest survivor? – and try to pull togetherall kinds ofthings like nutrition and exercise,lymphedema care, postsurgical care andemotional support.Through that clinic, I have, since 1999, seenmanyindividuals with lymphedema. My approachtends to be not quite as “cookbook”as you mighthave encountered, those ofyou who havelymphedema. I try to look at the latest science andsee every individual as an individual, because ifyouhave 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 oftreating people.Manypeople goto clinics and are given acookbook way ofapproaching their lymphedema.Some ofthat cookbook works and some ofitdoesn’t, yet the whole cookbook is expected to befollowed. That’s not how anybody should approachany treatment, least ofall lymphedema, as far asI’m concerned. I encourage you during thispresentation to please ask me questions. You mighthavetried something,ifyou 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.Ifyou feel comfortable, ifyou havelymphedema, would you let me know that in theaudience just with the raising ofyour hands?Thank you. My other experience is that peoplewith the diagnosis often knowalot more than thepeople who aretreating it, so ifyou havesomethingto offer,this is the time to offer it to people,because I’m reallyopen to hearing whethersomething different worked for you. I knoweverybodyelse would welcome that as well.Let’stalk a little bit about what lymphedemais. For those ofyou who do not have it andperhaps have not been exposed, lymphedemaessentially is an accumulation offluid. It’s in thetissues. Ifyou’vehad breast cancer surgery, it wouldmost obviouslybe in your arm, your trunk, yourbreast, sometimes your back. Ifyou’ve had necksurgery, it would be in your neck. Ifyou’ve hadsurgeryfor,say, colon cancer or ovarian cancer, itmorethan likely would be in your legs and yourabdomen. It can be in manydifferent places.There are different ways ofcategorizinglymphedema. Primary lymphedema – they call ithereditary, but that’s not necessarily the truth of it. It is a lymphedema that wedon’t totallyunderstand; we don’t understand either ofthem,frankly, very well. [Primary lymphedema] might[arise] because there are malformations or there isapoorlydeveloped 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 ofyou here who havelymphedema, it would be categorized as secondarylymphedema, and it’s from some type oftrauma orinsult to the system later in life.Let’stalk 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 ofan issue, but now we have many, manysurvivors, and lymphedema as a complication of treatment or the disease certainly exists plentifully.The lymphatic system, bythe way,ismicroscopic. For someone to actuallydissect thelymphatic system is a very specialized dissection; [itrequires] someone with skills beyond the normal,ifyou will, anatomist. It is microscopic. Thesecapillaries – they’recalled lymphatic capillaries – manyofthem lie right underneath the skin. That’simportant to know because that’s part ofwhy thetreatment approach is used. These capillariesconnect to deeper vessels, whichconnect 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 backout 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 ofit.The lymphatic system brings back approximately10 percent ofwhat’s not used.The other very important thing about thelymphatic system is that because ofits structure, itis able to bring back larger molecules – the protein,the fatty deposits. Hence, ifit’s not working, thatstuffstays out in the tissues, and therein is thereason for the infections, the cellulitis that peopleget. That’savery important thing to understand,because one ofthe biggest issues for people withlymphedema is the whole infectious process.
WOMAN:
When you were talking about the lymphsystem taking bigger things, do you mean biggertoxins?
TRUDY TURVEY, MS, PT:
Well, bigger molecules. Proteins are largermolecules, and those can’t travel through the venoussystem. They’re too large to get into it.
WOMAN:
Oh, so ifyour lymph system isn’t working,they get stuck?
TRUDY TURVEY, MS, PT:
They staythere. Right. What are the causesoflymphedema? Why would one havelymphedema? Well, certainly surgery, and that canbe any surgery. It could be knee surgery, surgerytotallyunrelated 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 breastcancer 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 ofthese things causelymphedema, like insect bites and burns andinfection, is that the body is going to respond tothat and send a lot ofblood 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 oftissuenutrients than the lymphatic system is preparedto handle. The surgery for breast cancer most of the time involves removal ofnodes. When youremove those nodes, you remove part ofthelymphatic 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’redoing the surgery, theyreach in and pull out this bunch oftissue, andmaybe therearefour nodes in therefor me; maybethere are seven nodes in there for somebody else.There’snodiscreet way ofpulling them out.Occasionally there will be an enlarged one, andperhaps that could be pulled out. With that [tissue]are all ofthese 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 ofdeveloping [lymphedema], at leastas far as weknow right now. Even with a sentinelnode [surgery], I have had patients who have hadlymphedema. It’s not a way oftotally preventingit, having just one node removed – it’s importantto understand that.Radiation itselfdestroys 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, ifIhadn’t had that radiation, I might not have thatlymphedema,”that’s a really iffy thing. I have seenpeople, ofcourse, 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 ofthe totalrisk for lymphedema.Tumor, ofcourse, 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 straighttoyour 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 wherethat tumor is, and probablythere will be some other chemo or radiation tomanagethat.Any questions about the causes?
WOMAN:
I’m curious about what you were just sayingabout having a clot. What kind oftests would youdo for that?
TRUDY TURVEY, MS, PT:
They would do an ultrasound.
WOMAN:
Ofyour arm?
TRUDY TURVEY,MS, PT:
Ofthe arm. Any time new lymphedemaappears, I would say nine times out often, anultrasound is done to rule out a clot. Let me giveyou an example: tamoxifen. Ifyou were newly puton tamoxifen and you got some arm swelling, thatcould be a clot, and usually that is painful. That’sone wayto differentiate, but don’t diagnoseyourself. I mean, truly, that’s a life-threateningemergency and you need to have that addressed.With tamoxifen, as many ofyou may know, one of its 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, ifany ofyou are in thiscategory, getting some swelling after your surgery,going to a therapist who claims to havelymphedema experience, and he or she says, “Oh,Page 2
 
mygosh, 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 restofyour life.”Ihave had patients who have had that done,and the depression that follows that and the traumaofthat, 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 ofswellingdoes 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 if you haveagut sense that, “Oh, gosh, I have thisswelling [but] I just had surgery”and someone’stold you that, tryto get another opinion, becauseit’s really not lymphedema.
WOMAN:
I’m confused, too,now.I’ve got lymphedema.Isay 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 ofswells 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. Ifyou already hadlymphedema 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 inasleevefor this swelling.Let me tell you this so maybe it will motivateyou. The earlier you get to it, the more likely it isto respond. Ifyou would treat it now, it would bemuch better than ifyou wait six months, and you’llhave a good chance ofhaving 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 oftests. It just swelled up and I tookdifferent types oftherapies for six weeks, and thenit went away.
TRUDY TURVEY, MS, PT:
Well, we’ll talk a little bit about the going awaybusiness, because it doesn’t always go away.
WOMAN:
That’s what she said.
TRUDY TURVEY, MS, PT:
Lymphedema is its own little monster. Let’stalk about prevention, and then we’ll talk abouttreatment. … You could just go to bed for the restofyour life, and you could still get lymphedema.Isay that by way oftelling you to throw out theguilt. This is not about guilt. You could get it; youcould not get it. It’snot because you stood on yourhead or you had too muchwine or anything.Youjust get it.People have said to me, “Well, I was reallybad.”Well, the last thing any ofyou need is toperceive yourselves as bad. You have had more thanyour lion’s share ofthings 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 ofthem is infection. It’s not like yougoaround 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 ofbeingtreated and having it be minimal.Ofall ofthe things the NationalLymphedema Network [recommends], not lettingsomeone put a needle in that surgical arm isprobablythe 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 nowwho 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.Ofall ofthe things in the world I think to tellpeople, it’sdon’tlet anybodyput a needle there.That includes acupuncture needles. … Do not letthem 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 hadanIV 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 ofourfingers – 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.Iurge people to use something that does nothave a fragrance, because you never know whenyou might have a reaction to a fragrance. Some of myelderlypeople, I tell them to just use the canolaoil in the cupboard. That’s great – non-aromatic,and it reallykeeps the moisturein. Put moisturizeron when your skin is still wet, not after you’vedried, because the whole idea ofcream is to keepmoisture in. Once you’ve taken it away, the creamis just there.Protective gloves: I urge people to do this foracouple ofreasons. Ifthey 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. Yourbodywants to heal that burn, so it’s going to sendalot ofstuffthere. Those are the two places Ithink aremost important in terms ofgloves.Insect repellents: Ifyou have an arm or a legthat already has some kind ofimpaired lymphaticsystem and you get a mosquito bite … it’s aninvasion ofthe system, and your body is going totryto heal that area, right? It’s the same thing as aburn. Use the insect repellents. I know people haveaproblem with DEET and all ofthat, but youcan use the other ones and just put them on a lotmorefrequently. That’s a really important one. Ihad a gentleman who had primary lymphedema.He just all ofa 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.Page 3
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