Lymphedema Prevention and Treatment:
What You Need To Know
LANITA MOSS:
Welcome, everybody, to “Lymphedema
Prevention and Treatment: What You Need to
Know.” My name is Lanita Moss. I am one of the
co-founders and vice president of the Young
Survival Coalition [http://www.youngsurvival.org].
It is an absolute honor to be here this weekend with
so many young women [and] that somehow, out
of dumb luck, three women about seven years ago
pulled an organization together that can impact so
many people in their lives. I am honored to be in
the presence of all of you guys, and I’m glad you
made the trip to Denver this weekend.
I would like to introduce our speaker, Trudy
Turvey, the president and clinical director of
HealthLinks Clinic in Boulder, Colorado. She has
over 30 years of experience as a clinician,
administrator and teacher. She’s well known for
her expertise in the areas of postsurgical therapy
for breast cancer, lymphedema and exercise
assessment and training. She has been a speaker
for the nationally acclaimed Day of Caring. She
values her personal relationships with her patients
and, above all, offers individualized quality care to
each of them. I’m going to turn this over to Trudy.
She’s going to give her presentation, and then we’ll
do 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 at
the number of people who are here. HealthLinks
Clinic in Boulder addresses the needs, such as
lymphedema, of individuals who have been
diagnosed with cancer. We try to help people
once they’re diagnosed look at their lives in terms
of survivorship – what are you going to do to be
the healthiest survivor? – and try to pull together
all kinds of things like nutrition and exercise,
lymphedema care, postsurgical care and
emotional support.
February 25, 2006
Trudy Turvey, MS, PT
Through that clinic, I have, since 1999, seen
many individuals with lymphedema. My approach
tends to be not quite as “cookbook” as you might
have encountered, those of you who have
lymphedema. I try to look at the latest science and
see every individual as an individual, because if you
have lymphedema, your lymphedema is not like
the person’s next to you. Everybody’s lymphedema
is different, and you’ll respond to treatment
differently. That is something I have observed
through my time of treating people.
Many people go to clinics and are given a
cookbook way of approaching their lymphedema.
Some of that cookbook works and some of it
doesn’t, yet the whole cookbook is expected to be
followed. That’s not how anybody should approach
any treatment, least of all lymphedema, as far as
I’m concerned. I encourage you during this
presentation to please ask me questions. You might
have tried something, if you do have lymphedema,
that didn’t work. The question is, “Well, why didn’t
it work for me? It worked for so-and-so.” I will try
to help you through that.
If you feel comfortable, if you have
lymphedema, would you let me know that in the
audience just with the raising of your hands?
Thank you. My other experience is that people
with the diagnosis often know a lot more than the
people who are treating it, so if you have something
to offer, this is the time to offer it to people,
because I’m really open to hearing whether
something different worked for you. I know
everybody else would welcome that as well.
Let’s talk a little bit about what lymphedema
is. For those of you who do not have it and
perhaps have not been exposed, lymphedema
essentially is an accumulation of fluid. It’s in the
tissues. If you’ve had breast cancer surgery, it would
most obviously be in your arm, your trunk, your
breast, sometimes your back. If you’ve had neck
surgery, it would be in your neck. If you’ve had
surgery for, say, colon cancer or ovarian cancer, it
more than likely would be in your legs and your
abdomen. It can be in many different places.
There are different ways of categorizing
lymphedema. Primary lymphedema – they call it
hereditary, but that’s not necessarily the truth of
it. It is a lymphedema that we don’t totally
understand; we don’t understand either of them,
frankly, very well. [Primary lymphedema] might
[arise] because there are malformations or there is
a poorly developed lymphatic system from the get-
go. This lymphedema might not show up for years,
but later in the teens or even adulthood, something
might trigger that. The treatment for that
lymphedema is the same as for secondary
lymphedema, which is really what we’re here to talk
about today. Those of you here who have
lymphedema, it would be categorized as secondary
lymphedema, and it’s from some type of trauma or
insult to the system later in life.
Let’s talk a minute about the anatomy. The
lymphatic system is not a very well understood
system – I should tell you that. When your
physicians don’t know what to do, it’s because this
system was not really addressed in medical school.
Perhaps in medical school, survivorship wasn’t as
much of an issue, but now we have many, many
survivors, and lymphedema as a complication of
treatment or the disease certainly exists plentifully.
The lymphatic system, by the way, is
microscopic. For someone to actually dissect the
lymphatic system is a very specialized dissection; [it
requires] someone with skills beyond the normal,
if you will, anatomist. It is microscopic. These
capillaries – they’re called lymphatic capillaries –
many of them lie right underneath the skin. That’s
important to know because that’s part of why the
treatment approach is used. These capillaries
connect to deeper vessels, which connect and go
through nodes, and the fluid is filtered through
the nodes. It ultimately gets back up to the heart
and dumped back into the cardiac system to be
put in with the blood, and back out it goes.
 Lymph fluid is not a special fluid that people
with lymphedema have. It’s fluid that I have and
anyone else has. They call it lymphedema –
“edema” meaning swelling, and “lymph” because
it’s the lymphatic system that’s not working very
well. Some people have a sense that it’s some other
fluid, but it’s really not.
To put it in a nutshell for you, you have arteries
delivering proteins, tissue nutrients and fluid to
your tissues. For my arm to work, my muscles need
those nutrients. Once my tissues are done with it,
the venous system brings back the majority of it.
The lymphatic system brings back approximately
10 percent of what’s not used.
The other very important thing about the
lymphatic system is that because of its structure, it
is able to bring back larger molecules – the protein,
the fatty deposits. Hence, if it’s not working, that
stuff stays out in the tissues, and therein is the
reason for the infections, the cellulitis that people
get. That’s a very important thing to understand,
because one of the biggest issues for people with
lymphedema is the whole infectious process.
WOMAN:
When you were talking about the lymph
system taking bigger things, do you mean bigger
toxins?
TRUDY TURVEY, MS, PT:
Well, bigger molecules. Proteins are larger
molecules, and those can’t travel through the venous
system. 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 have
lymphedema? Well, certainly surgery, and that can
be any surgery. It could be knee surgery, surgery
totally unrelated to cancer. For individuals with a
cancer diagnosis, it has some particular things that
we’re dealing with.
Radiation, tumor, venous insufficiency – when
you see elderly people walking around and their
legs are really swollen, that’s not just venous
insufficiency. What happens is the lymphatic
system gets overwhelmed, so those individuals also
will respond to lymphatic therapy. Infection – I
have two people in my practice right now who did
not have lymphedema but got infections in their
arms through some other process. They are breast
Page 2
cancer survivors. Their arms became very swollen,
and now they do have lymphedema, but they did
not have it prior to the infection.
Insect bites – we’ll talk a little bit more about
how important insect repellent is for you all – and
burns: The reason some of these things cause
lymphedema, like insect bites and burns and
infection, is that the body is going to respond to
that and send a lot of blood to try to heal. When
more blood than normal is sent and the lymphatic
system is impaired, the system cannot handle that
overload. There is a much greater supply of tissue
nutrients than the lymphatic system is prepared
to handle. The surgery for breast cancer most of
the time involves removal of nodes. When you
remove those nodes, you remove part of the
lymphatic system.
Try to visualize this with me. Nodes are not
discrete little things that physicians can pull out
one by one. They are, by and large, embedded in
your tissue. When they’re doing the surgery, they
reach in and pull out this bunch of tissue, and
maybe there are four nodes in there for me; maybe
there are seven nodes in there for somebody else.
There’s no discreet way of pulling them out.
Occasionally there will be an enlarged one, and
perhaps that could be pulled out. With that [tissue]
are all of these lymphatic tubules that are
connected there, so now you’ve lost these ways for
the fluid to get back through the nodes and back
into the central system to be handled by the cardiac
system. That’s what this surgery does.
I’ve had people say, “But they only took one
node out.” It is our hope that sentinel node surgery
can reduce the risk for lymphedema. In fact, the
fewer nodes you have taken out, the less is your
likelihood of developing [lymphedema], at least
as far as we know right now. Even with a sentinel
node [surgery], I have had patients who have had
lymphedema. It’s not a way of totally preventing
it, having just one node removed – it’s important
to understand that.
Radiation itself destroys lymphatic tissue.
Radiation essentially causes the tissue to be non-
elastic and non-functioning. “Fibrosed” is the way
you might describe it. Those tissues become
scarred, and once they’re scarred, they’re really non-
functioning; those tissues will not regenerate. There
is some good evidence that without radiation,
lymphatic tissues can regenerate, but not across
the board. Saying to yourself, “Well, darn it, if I
hadn’t had that radiation, I might not have that
lymphedema,” that’s a really iffy thing. I have seen
people, of course, who did not have radiation
who’ve had lymphedema. It’s not a cure-all, refusing
the radiation. In fact, we know radiation does
improve chances for survival, so I wouldn’t want
someone to make that choice – and radiation adds
only 1 percent to 2 percent in terms of the total
risk 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, what
test has your physician done?”We need to make
sure it’s not a blood clot. We need to make sure it’s
not new tumor. Should you develop lymphedema,
you don’t go straight to the therapist who’s going
to provide lymphedema therapy. You go straight
to your oncologist so he or she can do these tests
and make sure you don’t have a clot and you don’t
have tumor. It’s very important, because treating
lymphedema with tumor preset, you won’t get
anywhere – you can’t. The tumor needs to be
addressed as to where that tumor is, and probably
there will be some other chemo or radiation to
manage 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 you
do 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, an
ultrasound is done to rule out a clot. Let me give
you an example: tamoxifen. If you were newly put
on tamoxifen and you got some arm swelling, that
could be a clot, and usually that is painful. That’s
one way to differentiate, but don’t diagnose
yourself. I mean, truly, that’s a life-threatening
emergency and you need to have that addressed.
With tamoxifen, as many of you may know, one of
its unpleasant side effects is blood clotting.
This is very important: I have had many
people who have been treated for lymphedema
when really what they had was postsurgical
swelling. You can imagine, if any of you are in this
category, getting some swelling after your surgery,
going to a therapist who claims to have
lymphedema experience, and he or she says, “Oh,
 my gosh, you have lymphedema. You need to get
these treatments. And, by the way, you didn’t have
insurance, so you’re going to have to pay for these
out-of-pocket, and they are about $1,000 to
$2,000. And you need to wear a sleeve for the rest
of your life.”
I have had patients who have had that done,
and the depression that follows that and the trauma
of that, to me, is just really unnecessary. Most
people after surgery are going to have some
swelling. It would be unusual to not have some
swelling in your trunk, in your breast tissue area
and in your arm. It usually resolves in six to 12
weeks. The treatment is to use your arm. Move it,
because moving it is going to help that lymphatic
system function. Elevate it – that kind of swelling
does respond to elevation.
Lymphedema, unless it’s very, very early, and
even then it’s a little questionable, does not respond
very well to elevation – maybe a smidge; not a
whole lot – but [postsurgical] swelling will respond
to elevation. You can do hand open-and-close
exercises; that will also facilitate the lymphatic
system. Remember, this is not lymphedema, so if
you have a gut sense that, “Oh, gosh, I have this
swelling [but] I just had surgery” and someone’s
told you that, try to get another opinion, because
it’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 three
surgeries, and it would usually swell up my arm
more after the surgery. The last one was in
December. … It kind of swells up after the
surgery, but I’ve still got lymphedema. Do I need
to go somewhere to make sure it’s not? Can I have
the 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 goes
on there. For that, the treatment would be the
same. You would wear your sleeve or your
bandages, whatever you’ve been used to. You could
get some treatments, some massage – I will do
massage for this, but I would never put someone in
a sleeve for this swelling.
Let me tell you this so maybe it will motivate
you. The earlier you get to it, the more likely it is
to respond. If you would treat it now, it would be
much better than if you wait six months, and you’ll
have a good chance of having it go down.
Page 3
WOMAN:
The first time I got lymphedema, a doctor –
how did I find out I had lymphedema? They didn’t
do any type of tests. It just swelled up and I took
different types of therapies for six weeks, and then
it 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 about
treatment. … You could just go to bed for the rest
of your life, and you could still get lymphedema.
I say that by way of telling you to throw out the
guilt. This is not about guilt. You could get it; you
could not get it. It’s not because you stood on your
head or you had too much wine or anything.You
just get it.
People have said to me, “Well, I was really
bad.” Well, the last thing any of you need is to
perceive yourselves as bad. You have had more than
your lion’s share of things to deal with.
Lymphedema is going to come or it’s not going
to come, and then the question is, “What do we
do?”There are a few things I can tell you, however,
that had they not happened, this person, at least
at that time, might not have gotten lymphedema.
The first of them is infection. It’s not like you
go around asking for infection, right? Sometimes
people end up having maybe a second surgery.
Maybe their margins weren’t clean, or whatever
reason, and they get a little infection. They might
get some lymphedema. Patients who get that kind,
for the most part, have a good chance of being
treated and having it be minimal.
Of all of the things the National
Lymphedema Network [recommends], not letting
someone put a needle in that surgical arm is
probably the most important thing, because a
needle opens the skin. Bacteria get in there, and
the lymphatic system does not like having bacteria
in there. I don’t care what shot it is. I have a patient
right now who is 30 years out from her surgery.
Thirty years – you can imagine that at that time
she had the radical mastectomy. She never had
lymphedema until she got a flu shot 30 years later.
Of all of the things in the world I think to tell
people, 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 to
put the [needles], but not in that arm.
IVs: I had another patient who had a problem
with putting them in the opposite arm, but you’ve
got to make the health care worker work a little
harder and find another place for that IV. She had
an IV put in her surgical arm, and she got arm
lymphedema and breast lymphedema. This is
number one: Don’t let anybody do this.
Good skin care: Again, I say these things
because these are things you can do. In the winter
when we get these little cuts … on the end of our
fingers – they’re very prevalent, and it’s hard to not
get them. Try to keep your skin very well
moisturized, because dry skin is more prone to
having openings and more prone to inviting
bacteria in.
I urge people to use something that does not
have a fragrance, because you never know when
you might have a reaction to a fragrance. Some of
my elderly people, I tell them to just use the canola
oil in the cupboard. That’s great – non-aromatic,
and it really keeps the moisture in. Put moisturizer
on when your skin is still wet, not after you’ve
dried, because the whole idea of cream is to keep
moisture in. Once you’ve taken it away, the cream
is just there.
Protective gloves: I urge people to do this for
a couple of reasons. If they work with roses in the
garden, thorns can really cause a problem. I am a
gardener and I hate gloves, but around the rose
bushes is a good place to wear them. Also, use
protective gloves when you’re reaching into the
oven, because burns can cause lymphedema. Your
body wants to heal that burn, so it’s going to send
a lot of stuff there. Those are the two places I
think are most important in terms of gloves.
Insect repellents: If you have an arm or a leg
that already has some kind of impaired lymphatic
system and you get a mosquito bite … it’s an
invasion of the system, and your body is going to
try to heal that area, right? It’s the same thing as a
burn. Use the insect repellents. I know people have
a problem with DEET and all of that, but you
can use the other ones and just put them on a lot
more frequently. That’s a really important one. I
had 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 was
looking great. He walked out in his garden with
shorts on; his leg came back bigger than when I
first saw him because he had one mosquito bite.
Please be careful about that.
 WOMAN:
I was just wondering, is the lymphedema worse
[when there’s] bigger, more swelling? Is that how
you 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, but
a 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 system
that’s been set up. An inch to 2.5 inches is
moderate, 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 frozen
shoulder, 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 redirect
your 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 to
address your frozen shoulder. When you say you
get a fever, do you get a temperature change, or
does 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 of
activity you’re doing and the intensity of it. Because
your shoulder is frozen, the lymphatic system
doesn’t have a very good leeway, if you will. It’s not
open for that fluid to get through, and then it sits
there, and then you get a little cellulitis. I’m going
to talk about cellulitis in a minute.
Signs of an infection: Infection is really
important for you to treat – not tomorrow, not
the next day, but as soon as you think you have an
infection. This type of infection can land you in
the hospital if it’s untreated. What happens is that
if the lymphatic system is not working –
remember, the lymphatic system is responsible for
bringing those proteins and fatty deposits and all
of that back, and if that sits in the system, it’s a
medium for a bacterial infection without you doing
anything. Just sitting there, you can brew an
infection. People say, “I didn’t do anything. I don’t
have a cut or anything, and I have an infection.”
And that is very true.
Page 4
If you think you have [an infection], run, don’t
walk, to your physician and get antibiotics. I try
to get my patients to think about this way ahead of
time. If they travel, they need to know where they
are going to get antibiotics if they’re out of the
country. I’m thinking of one patient who had gone
to Costa Rica. She was on a hiking trip, got a ton
of bites and didn’t take antibiotics. Oh, my
goodness – she was so swollen, and not for
months, but for years. Really, [if you get] an
infection, take those antibiotics.
Take a scrip with you if you’re going to be in
the United States. If you’re out of the country,
take the antibiotics with you. If your physician will
give them to you, take the antibiotics with you so
you can just take them immediately. Now, there is
a difference between an infection and an arm that
just feels warm. If the lymphatics get irritated –
and they can get irritated by aggressive activity or
because they’re going to get irritated – the arm
may feel a little red, a little warm. That’s called
lymphangitis, by the way.
A lot of people postsurigcally have breasts that
are red and warm, and antibiotics don’t do anything.
That’s because that’s not an infection. It’s really a
lymphangitis, and the thing that helps that the most
is the massage that I’m going to talk about – very
gentle lymphatic drainage massage. [The redness
and warmth] can last for months, but that is not
an infection. Any time you have redness and
warmth, though, you should at least try the
antibiotics and see if that’s what’s happening.
Temperature and chills: If you have
temperature or chills, it’s gone a little too far. You
need to get into your doctor or get into the ER. I
had a patient who came to me who had pretty
significant lymphedema, and we had been treating
it. Her arm was a little warm, but the telling thing
was that she said, “Oh, Trudy, I’m so cold.” I mean,
this was summer in Boulder, and she’s a big
woman, so it wasn’t like she was skinny and didn’t
have anything to keep her warm. Systemically, she
was getting an infection. Not only was it in her
arm, but she needed IV antibiotics and needed to
be in the hospital. Don’t ignore temperature and
chills – very important.
Prevention of burns: Well, we’re not supposed
to be getting a sunburn anyhow, right? That should
be pretty clear to people. When you think about a
sunburn, it’s a burn. It’s not just, “Oh, I’m tan.”
It’s a burn, and a burn is going to require your
system to respond to it. Again, a lot of blood goes
to that area and tries to heal it. I’m hoping that if
you understand the physiology of it, then when
other circumstances come up that I missed and
didn’t address, you can say, “Huh, this is probably
what’s going to happen here. I better take care of
this this way.” That’s why I’m emphasizing this.
Use oven mitts when you reach into the oven so
you don’t get a burn.
Saunas and hot tubs – the biggest question I
get is, “Can I please go in the hot tub?”Well,
physiology, again: If your core gets hot, how does
your body try to cool down your core? It sends
blood out here, right, or to the legs? If it sends blood
out 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. Keep
your arms out and keep part of your trunk out so
the heat can be dissipated without sending it out
to your arms, but go ahead and go in. Saunas are
the same way. It’s a little harder to keep part of you
out of the sauna, however, so I feel like maybe you
don’t want to do that. To tell you the truth, do we
have good research about this? No. Those
recommendations are purely based on physiology
and what might happen. Have I ever had a patient
come to me and say, “I got this when I was in the
hot 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. These
are the things I’ve seen problems with, so I will tell
you those. I’ve seen more than one problem. These
are not things I’ve seen once in my lifetime with
lymphedema. I’ve seen it over and over again. The
once-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 be
backpacks, hiking, heavy purses. If you were at risk
for lymphedema and you hang something here,
you are shutting off that pathway that’s already
impaired. A good thing to think about doing: Get
a fanny pack; get a purse that doesn’t hang on your
shoulder. Besides that, most people have shoulder
problems after their surgery anyhow, and that purse
is not helping them. I like to have people try to
minimize that, and don’t carry everything but the
kitchen sink in it, either.
Blood pressure: This is a big one. Everybody’s
been told, “Don’t have your blood pressure taken
in that surgical arm,” because one person said, “I
got my lymphedema after I did the blood pressure.”
Probably not. There was a study done, relatively
in the last couple of years, where they took women
who had carpal tunnel problems, women who had
had breast cancer surgery – carpal tunnel, for those
 of you who don’t know, is basically a wrist-pain
issue – and when they do that surgery now they
put a tourniquet on, and you have that tourniquet
on for four hours.
None of those people developed lymphedema,
and in none of the people who had lymphedema
did it get worse. Is the blood pressure thing a real
issue? I would say not. Do I still take blood
pressures on other arms? Yes. Because people are
so freaked out about it, it’s not worth it to me to
freak them out more and give them the big, long
lecture about the study. But, just so you know, it’s
probably really not the issue.
Range of motion: It is really important for
you to have the best range of motion possible in
that surgical arm. That includes minimizing scar
tissue. If you have not seen a physical therapist
after your surgery, you should see a physical
therapist who can evaluate the extent of scar tissue
and can treat it. Physical therapists know how to
treat it, and it’s really important, because just having
scar tissue massage can minimize lymphedema.
That’s all it might take.
Now, if you have full range of motion and
everything feels really lose in there, chances are you
don’t have a lot of scar tissue. But there are many
people walking around whose range of motion is
less than what I would say is desirable, and they
have a fair amount of scar tissue. Some people scar
more than others internally and externally. You
know, when you get cut, some people get scars
there, and for other people it’s just flat as could be.
That’s just a difference in our bodies and how
much keloid we produce.
Scar tissue massage is a very important thing
if it’s appropriate for you. I was at a talk several
years ago where a woman on the panel was a
gardener, and she had some lymphedema and was
told essentially to never garden again. Well, if you
tell me to never garden again, I’m checking out,
because that is my love. It’s my therapy. It’s the only
thing that keeps me sane, and that’s what was true
for her. She was just in tears.
She was also told she couldn’t go to altitude. In
Colorado? What is that about? I couldn’t really say
anything in that panel because the person who was
treating her was on the panel, but the woman sat
next to me in the next conference and I asked her
if she’d had PT. She said no, so I referred her to a
PT in her area who did scar tissue massage on her.
Her lymphedema went away. She was able to do
all this stuff. So, don’t stop – I just want to urge
you to get good treatment.
Page 5
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 around
your shoulder and your trunk and your surgical
side, it should be very gentle, not deep tissue
massage. Really deep tissue massage can worsen
lymphedema or produce it if you’re at risk, so make
sure your massage therapist realizes that and don’t
do deep tissue massage there.
Active range of motion: This is my plea to get
the best range of motion you can get after your
surgery. That does not mean that you do the Reach
to Recovery exercises and say, “Oh, great, I can get
up here.”You know what? That’s not anywhere near
full range of motion. You really need someone to
evaluate that. Those Reach to Recovery exercises
are great to get you started, but it’s a rare bird who
can figure out, “I don’t really have full range of
motion and I need someone to help me with this.”
Please go for that.
Progressive resistance training: This is the whole
repetitive motion issue. For a long, long time all of
you in the room – three years ago, even – would have
been told to minimize your exercise and don’t do any
repetitive motion. Probably some of you are being
told that even today. It’s not the repetitive motion
that’s a problem. It’s the eight hours of canoeing or
the eight hours of washing your windows that are a
problem when you haven’t done it in months.
The research is showing us, and I will say to you
that PTs’ experience, PTs who specialize in this, is
that if you train someone and start slowly and do
progressive resistive training and get that arm strong
with full range of motion, then the repetitive motion
is not an issue, unless she does it for eight hours.
But you know what? I shouldn’t be doing eight hours
of repetitive motion. Some of it is a little bit of
common sense in terms of what you do.
When I see people for exercise – these are
women who maybe were pretty active prior to their
diagnosis – and I hand them a one-pound weight,
they look at me like I’m crazy, but I’m not. They
need to start out very low, some of them without
any resistance, and build up. I build them up from
one pound, five repetitions, up to ten. No pain
and no problems? Great – two pounds, five
repetitions, then six, seven, up to ten and come
back; then three pounds.
By and large, they do just fine. They have very
few shoulder problems, unless they had preexisting
shoulder problems; then it’s a little different. A lot
of women get rotator cuff issues, maybe because
they were really active before or they were really
weak before, and there are some special
considerations there. By and large, though, a slow,
progressive resistive training program is how you
want to do it. It may seem silly to you to lift one
pound if you lifted 25 before, but I guarantee you
if you do it that way, you’re going to be far happier
and you won’t set yourself back.
WOMAN:
I was thinking more like using a computer
mouse or washing dishes or even walking outside
with an arm swinging, like, in the heat. I haven’t
had swelling, but all of those caused my arm to
ache for a longer period of time. One of the young
women I know who has lymphedema, it started
to hurt after she was working on the computer
and using the mouse quite a bit with that hand. I
just wondered what you thought of that.
TRUDY TURVEY, MS, PT:
The question – without knowing her, of course
– that I would have is whether lymphedema was
bothering 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 some
inflammation of her forearm tendons because of
the computer work. Again, the body sends blood
[and nutrients, etc.] to heal it, and her whole arm
swells because she has a compromised lymphatic
system. What should she have done? She probably
should have started on the computer very slowly,
for a few minutes. Work up to five, work up to
ten, so those muscles are not going to get inflamed.
It’s the inflammation that’s the problem. It’s not
the 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?
 TRUDY TURVEY, MS, PT:
Well, it would be a concern for me. What you
need to know is that for an arm to be visibly
swollen, the tissue has to have an increase of about
60 percent of its fluid in there. I can’t measure it
until it’s that high. Chances are, there is some fluid
in there, and one of the best tests for that is to find
someone who’s a specialist who can wrap you with
short stretch bandages and see if that helps. If it’s
a lymphedema issue, I would be willing to say that
is 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 good
thing.
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 like
this, it would stretch forever, right? Well, short
stretch, that’s the amount of stretch. Those are the
types of bandages that are used in lymphedema
treatment. I urge you to keep walking, though. I
would never say to you, “Don’t walk.” Let’s figure
out if we can help with this achiness and figure
out why it’s really aching.
Is it lymphedema? Is it postsurgical weakness?
There are a lot of reasons for that aching to
happen. Again, let me say to you, please, if you’re
not exercising, please find yourself someone to
work with you on progressive resistive training as
well as some other stuff, which we’ll talk about.
It’s very important for you.
Normal body weight: Not that people who
have normal body weight don’t get lymphedema,
but increasing your weight or being overweight at
diagnosis increases the risk. I have had people who
normalized their body weight after they came to
me for lymphedema whose lymphedema by and
large was not visible to anyone but them and
myself. Losing weight makes a big difference in
lymphedema.
WOMAN:
What about waxing underneath the affected
arm?
Page 6
TRUDY TURVEY, MS, PT:
Ouch. I don’t know. If you wax, having never
done it, I’m thinking it would cause inflammation
there. I don’t know. Those of you who do it, you’ve
got to tell me. Does it cause inflammation?
WOMAN:
If you’re pulling your skin, it could probably
… Sometimes you can get little nerve endings that
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 on
whether you’ve always waxed and your skin is
toughened there, whether repeated waxing would
coarsen 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 me
that it’s a little inflamed. It may be just fine. Again,
I would hate to tell you to do that, but people have
done worse and been just fine. There is certainly
no study.They do tell you to shave with an electric
razor.
I don’t know about you guys, but I have never
cut my underarm with a regular razor, so I think,
well, why would you do that? The caveat would be
over the scar that you had your lymph nodes
removed from, because that doesn’t have very good
sensation. I would be very careful there, because
you 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 often
enough in the armpit itself. Would that be relative
to 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 nerve
doesn’t always regenerate and produce normal
feeling. The medical word for it is “dysesthesia,”
kind of like dysfunction, or abnormal feeling.
Sometimes that’s mixed in with the scar tissue.
are stuck in that scar tissue, which is why scar tissue
massage is kind of nice. Also, at least people tell
me, 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 tends
to push fluids back into the system, and it keeps
you very fit, so I think it’s a great activity. We’ll talk
about more activities, too.
We now know that moderate exercise and –
contrary to that study that came out a week and
a half ago – a diet with about 20 percent fat does
reduce recurrence. Is it going to reduce recurrence
in 100 percent [of people]? No. But it is as
effective as or has the same risk reduction as taking
tamoxifen. Wow. That’s something you can do for
yourself. I’m not talking about running or doing
marathons. I’m talking about going out and
walking four or five times a week and doing some
weight training three times a week.
You all know – those of you who have been
introduced to the lovely tamoxifen and what it
does – that weight gain is part of that. We’re trying
to mitigate that weight gain, and it’s also going to
help the lymphedema. The lymphatic system
responds to activity. It does not respond to
inactivity.Think about patients who have been in
the hospital in bed for two weeks; if you look at
their extremities, they tend to be swollen. That’s
because their lymphatic systems are not very active.
Exercise is very important; that’s a big, big
moderator for these things.
Signs of lymphedema: Well, often someone
comes in and says, “My arm feels heavy or full.
My skin feels a little tight.” Everybody, look at
your wrist on the side. When you look, those of
you who don’t have lymphedema, you should be
able to see tendons and veins pretty clearly on both
sides. Sometimes one of the first signs is, “Huh, I
can’t see that tendon on this side, and my vein, it’s
 not the same.” Don’t ignore it; have someone look
at it. Also, your jewelry might be tight: “My ring
is tighter. My watch is tighter. My sleeve is tighter.”
Something is going on there, so you need to find
some way of addressing that.
Let’s talk about treatment. First of all, good
skin care. I already talked about that. Keep your
skin moist, clean; minimize the chance for bacteria
to get in there. The type of treatment that’s most
recognized for lymphedema includes the manual
lymphatic drainage. It’s very light massage.
Remember, the capillaries are right underneath the
skin, so the skin being moved by that very light
massage opens those lymphatics.
It’s very important to understand that there
are people out there, including PTs and OTs, who
never have had any specialized training, so they
decide the best way to treat this person’s swelling is
to pump the arm up toward the chest, because
that’s where all fluid is supposed to go, right? Well,
they do it deeply, and to tell you the truth, it doesn’t
really work. When you do deep massage, you’re
pushing against those lymphatics. You’re probably
closing them rather than opening them.
If a therapist who doesn’t have lymphedema
experience says, “Oh, I can treat this,” you’re going
to go, “Let’s talk about this a little bit. What kind
of massage are you going to do? Where were you
trained? What kind of training?” Let’s talk about
training, all kinds of training. There is Vodder
training. There’s Leduc training. There are different
methods. There has been no study whatsoever
that says Vodder training is better than Leduc is
better than this.
What you really want to know is whether they
have a good sense of this whole program of
lymphedema management. If not, they won’t do
the rest. They won’t talk to you about compression
sleeves and bandages. They won’t talk to you about
the exercise research. Be wary; be a good advocate
for yourself in terms of these people.
Let’s talk about compression bandages and
sleeves. Along with the massage, you want to have
some type of compression, because the
compression does a couple of things. It supports
the tissues, and it feels better.The sleeve does mostly
that. For some people, it minimizes the fluid that’s
going out in the arm, and it maybe treats it a little
bit. For other people, what treats better are these
bandages that I just spoke to you about. In fact, we
know that with those bandages on, particularly
when you exercise, you can increase lymphatic flow
by 15 times its normal rate. Wow, that’s great.
Page 7
If you have lymphedema and you’re exercising,
you should have bandages on, or the sleeve. I think
the bandages work better. They’re a nuisance – no
doubt about it – but I think they work better. Do
they work for everybody? No. There are a number
of people in my practice for whom they don’t do
a thing, and neither does massage. They end up in
sleeves because it’s the only thing that seems to
matter, except for the exercise and losing weight.
This person who’s treating you should know all
of this. When you exercise, if you have
lymphedema, 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 your
right hand and it’s your left arm, you do pretty
well. I teach families, whomever.
WOMAN:
I have a question about the compression sleeve.
I had a sleeve that was custom made. They did the
measurements and all of that, but the sleeve seems
to cut into my inner arm. If it’s a custom-made
sleeve, is there any hope that getting a different one
would help in that particular area, or is there
anything I could put in that particular area that
would 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 from
the 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. Custom
sleeves are for arms that have distorted shapes or
are really, really big, and you don’t look to me like
you qualify. Yes, they measured you, which means
you get a size one, two, three or four. That would
be my first question to whoever got it for you. I
would take that sleeve and say, “This isn’t working.
I need something else,” because a sleeve should not
cut into you. It should not cause problems, except
at 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 of
silk sewn in. They can do that at the place where
they ordered it, like Juzo or Jobst, depending on
where you got it. People take it to seamstresses.
That would be the best solution; anything else will
just 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 slack
out 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 at
the top to stay up. That could be a problem. I
would recommend, if you’re going to get an arm
sleeve, to get the silicone tops. For many people,
the ones without a top slide down a little bit. It
depends on the shape of your arm as to whether
it 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 problems
right 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 further
damage if I put something like some cotton or
something 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 a
concern. There is a type of soft, cotton batting.
Are you from here?
WOMAN:
I’m from Houston.
 TRUDY TURVEY, MS, PT:
You could try cotton batting, and there are a
lot of different types of gloves. Some of them have
seams in there. Do you have a seam? Sometimes
that is just not the right kind for you. It fits
everybody differently.
The one Margaret has just brought to me –
see, hers is very different. Hers is separate. It’s also
a lighter weight. With the ones that have the sleeves
built in, you’re kind of committed to wearing that
hand piece all of the time, so you can’t take it off
for dishes and you can’t take it off to do anything.
I try to get people two separate pieces. But it
should not be so tight. We have repeated problems
with that.
If they measured you for a true custom one,
you really have the right to go back and say, “This
is not working for me.” With the standard ones,
which are a lot less expensive, you end up having
more of those problems and trying to solve them.
If it’s causing redness anywhere, though, you don’t
want that. That’s irritating your skin, and it could
cause breakdown. You definitely want something
different to be done.
For those of you who have to wear sleeves but
want to be fashion bunnies at the same time, we
have something called the [Sliver Sleeve]. Kim is
going to show it to you. Stand up, Kim, and show
yours. A lot of people don’t like that boring beige,
and if you want to go out, I just wanted to show
this to you. This is Kim’s new company, and she
has some great bookmarks up here to show you
what stretches you should be doing. … They’re all
adjustable, and you can ask questions about them
after. 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 and
things like that, should you wear the sleeve when
you’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’t
have lymphedema, I don’t know. I have a real thing
about getting people to wear sleeves if they don’t
already have lymphedema. It’s like being told to
wear one when you fly.
Let’s talk about flying. That recommendation
came after a retrospective study, which means they
wrote to everybody who had lymphedema on this
list and asked them how they got their
lymphedema. One of them wrote back and said
Page 8
she got it after a plane ride – one out of 100
women. How does she know she got it because of
the plane? How does she know she didn’t get it
because she lifted her suitcases, because she was
under 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 get
them [a sleeve]. The same with weight training –
if you don’t have lymphedema, no, that’s not where
I 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 who
flew all the way to India and back who has
lymphedema who said she didn’t wear anything
and it was fine. Does that mean that out of this
whole room one person isn’t going to come back
swollen? Maybe, but why? Is it really because you
were on the plane, or is it because you decided to
lug those suitcases and eat salty food and caffeine
and you didn’t hydrate well enough? I don’t know.
I would not recommend that you [wear a sleeve] as
a preventive, and the reason is that we don’t have
any study. We have no study at all that says it
prevents it, so that’s a huge market and a lot of
money.
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 lifted
15 pounds since your surgery. You get yourself
strong so that 15 pounds is nothing. That’s the
whole point of it, and that’s the research that’s
coming out. That is not a recommendation
anymore. It’s a recommendation if you’re just
postsurgical and you haven’t had any PT and you
haven’t healed and you haven’t done any exercise
to 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 is
swollen and your watch isn’t fitting anymore, does
it just go away? And if it does just go away, is it
not lymphedema? Don’t you have some kind of
treatment 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 [go
away].
WOMAN:
If it does go away by itself, should you take
precautions, like wearing the arm sleeve to go
fly, even though you said you don’t have to wear
it? Do you have to take precautions then? If
you’re prone to it once, are you prone to it over
and over again?
TRUDY TURVEY, MS, PT:
Yes. Once you have it, you have it. There is no
cure for lymphedema. Can it be minimized? Can
you actually say, “Well, my arms look pretty close
to normal”? Yeah, you can definitely get there. But
once you are at risk for lymphedema, you are
always at risk for lymphedema. These precautions
that I’ve given you, you always should have those
in your head. Should you wear a sleeve every time
you fly? As I said, I don’t think we know that.
People tell people that, but there is no research that
supports 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 hard
for me to tell. Today I had a short-sleeved shirt
on, and on my surgery arm, the sleeve was tighter
than on the other one. What else can I look for
to see if that’s a sign of lymphedema or if it’s just
fat? My arm is irritating me, but it has been since
I had surgery.
TRUDY TURVEY, MS, PT:
How old is your surgery?
WOMAN:
August.
 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 it
wasn’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’s
different, isn’t it? When something’s different than
what it was, that’s when you get it looked at.
Hopefully the answer from somebody who really
knows lymphedema will be, “We’re just going to
watch 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 have
somebody measure you. Measure yourself before
your wrist bones, at your elbow and then maybe
in the middle of your arm on both sides. If there
is a difference of more than a centimeter, or more
than a quarter of an inch, I would want you to be
looked at. You’d have to go to your physician.
Now, here is the thing. I have to tell you, I’m
married to a physician, so I get to say anything I
want about physicians. Our physicians are focused
on the primary thing, which is the cancer, and that’s
as it should be. Many of them are not going to
think a tiny bit of swelling is [a problem]. It’s your
body and it’s your life, and I urge you to say, “Well,
I appreciate that you see it that way, but I would
like to see a physical therapist, and please write me
a prescription.”
Page 9
There is nothing wrong with being your own
advocate. Don’t take that, “Well, you’re okay.”You
know something is different, right? So act on it.
The worst that could happen is that somebody
says, “Yeah, I think this is lymphedema; here is
what we need to do,” and you’ll feel better rather
than it getting worse.
WOMAN:
I was diagnosed at 25, and I’m 16 years out.
(Applause) Sixteen years ago, they didn’t ever tell
me not to do these things, and I’ve been doing
them for 16 years. In the past six months or so,
I’m having an extreme amount of swelling on the
left side of my body, which is where my surgery
was. It’s not just my arm and my trunk, but all the
way down into my leg, my ankles, my feet, toes,
the whole shebang, and a lot of joint pain.
I’m confused. Could it possibly be
lymphedema? 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 swelled
up like a balloon on the left side of my body, and
I’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 about
why you would swell on the entire left side of your
body. That doesn’t make physiological sense in
terms of just your cancer surgery. If it’s new and
they haven’t quite figured it out, I would ask them
to do a few more studies to try to find out why,
because that’s not normal. Having both of your
legs swell on a flight, that’s perfectly normal. Most
people 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 to
figure that out. You have to also remember that if
you’re on a new medication, medications can cause
swelling. Arimidex can cause joint pain and some
swelling. 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 need
to see me anymore. Do you think I should start
with 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 your
opinion on. You were talking about carrying a
purse. 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 carry
it. I think that’s fine.
WOMAN:
What about pulling something like a suitcase?
You were talking about lifting a suitcase. I understand
your point was whether you’re prepared to lift that
kind of weight, but pulling something or pushing
something, 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 decide
you’re going to clean the whole darn house, yeah.
Those are normal activities, and you should be
able to do them.
 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 other
questions. Deep breathing: One of the things the
lymphatic system responds to – it facilitates it, it
makes it more active – is deep breathing. When
you are exercising, if you are treating yourself in
terms of lymphatic massage, deep breathing is
really important. It creates a pressure inside the
chest. It helps to empty the system. It pulls in the
parasympathetic nervous system, which is your
calming one. That’s what facilitates the lymphatic
system versus the sympathetic one, which is your
fight-or-flight, let’s get out of here kind of thing.
That’s a really important thing.
Again, normalize body weight. Exercise: I
cannot stress it enough. Flexibility exercises,
strengthening exercises, aerobic exercises, core
strengthening exercises – all of those things are
good for you. Everybody in this room should be
doing that if for no other reason than it’s
something you can control. It’s a way to hedge your
bets about recurrence. It’s going to make you feel
good. It’s going to improve your quality of life,
and it’s going to help with lymphedema if you
have it. I heartily recommend that.
Well, you all asked me about simple things.
Let me tell you some of the wild things people
are doing. Has anybody seen the dragon boat
stuff ?
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 of
her patients and trained people to row these dragon
boats and compete. They did progressive resistive
training, flexibility and aerobic activity, and you
know what? No one’s lymphedema is worsening,
and no one got lymphedema doing this. There are
now, I think, over 30 dragon boat teams in Canada,
and it’s gotten very big in Australia, I’m told – over
31 teams.
Page 10
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 a
therapist in Philadelphia – those of you in that
area, Linda Miller is, I think, one of the best
therapists you could go to; I trained under her –
and she takes her patients golfing. She thinks it’s
one of the best things for range of motion,
strengthening, you name it.
Walking. There is a study right now on bench
presses to see if it’s a problem, since you’re told
not to do this. Swimming. Dancing. Sherry Lebed
has put out a video on dancing for lymphedema.
I don’t know if it was her or her relative who had
breast cancer surgery. Anyhow, it’s kind of cool.
Triathlons – we have patients doing triathlons.
Don’t limit yourself, but do it smart. Figure
out what it is you need to do to get strong and
flexible, and take care of yourself and figure out
the best way to do it. Don’t give up something you
love to do.
WOMAN:
Just as an aside, you guys, I ran a marathon
seven months post-surgery, and my arm didn’t get
any 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 lifting
your body weight. Boy, that would be great for
your scapular muscles. What are the problems with
exercise? This is where people get into trouble: too
much, too fast. They don’t warm up and they don’t
cool down, so your system doesn’t get a chance to
get back into an equilibrium. You need to gradually
build your endurance for all activities, both
muscular and cardiovascular.
Vigorous, repeated activities when you’re not
prepared – those examples I gave you were real life.
Someone who was really fit prior to her cancer
decided she was great. She went out and canoed
for eight hours. She could have just done that for
a couple of hours; she didn’t have to do the whole
day. That’s the kind of stuff that happens.
Keep hydrated. Keeping hydrated facilitates
your 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 you
wonderful things are new. I will tell you a couple.
Something called kinesiotaping – anybody know
about this? What’s your experience?
WOMAN:
I developed lymphedema four years post-
surgery, and I’ve tried basically everything at this
stage. I tried the kinesiotaping as well. This is in
the past couple of months. It had a short-term
effect. When I put it on or wore it, you could see
the difference, but I wouldn’t wear it all of the time.
I just continued to wear my sleeve. But it was easy
to wear.
TRUDY TURVEY, MS, PT:
We need more research in this. Let me explain
to people. Kinesiotaping is a way of taping, and
you tape along the lines of where you want the
lymphatic flow to go. Margaret’s experience was
that it helped while it was on. Did it last for any
time 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 replacement
with a huge amount of swelling. I also did a
massage. But I couldn’t keep the bandages on her,
so I thought, “Oh, heck, I’ll just try this.” I was
absolutely amazed. The next day, she came in and
it was probably down a half-inch. Her swelling was
a little different from lymphedema swelling.
 I just tried it on another woman whose
swelling was the result of an infection, so it was
relatively new swelling. While it didn’t change the
girth, what it changed was the induration, or the
amount of cellular debris, so there was some
change in the lymphatic flow.
My sense is that we need some more research.
It may be that the extent of fibrosis in the arm is
the dictator of how well the kinesiotaping works.
I don’t know, but I think it’s an interesting area that
we’re looking at.
There is a physician in Arkansas looking at
laser and infrared. It’s a preliminary study; there
are no results. I did have a patient who used
infrared on her leg swelling. She felt it helped a
great deal. I have mixed feelings about it, because
I continue to treat her. I’m not really sure. Then
again, only she knew how her leg felt.
Then there are homeopathic remedies. Does
anyone have any experience with anything that they
felt worked? There are a couple of things. They
are doing a study at [University of Wisconsin]-
Madison where they’re looking at horse chestnut,
which has been used in Europe for years for venous
insufficiency…
Page 11
The other big thing is that in Australia and a
number of countries they have used benzopyrenes,
otherwise known as coumarin – not Coumadin,
which many of you have been or are on, but
coumarin. This helps to break down that cellular
stuff and really helps lymphatic flow.
Unfortunately, there were a lot of liver toxicity
issues. There are foods that are high in coumarin:
celery, for example. I thought to myself, “I wonder
if that would have the same effect as the coumarin
itself.” You can get coumarin through some
pharmacy in Texas. You would have a very different
time getting a physician to prescribe it for you here,
however, because of its toxicity.
We’re looking more and more. A new research
group that’s been established is feeling like many
of you with lymphedema do: that there has got to
be some other way to do this. So, with hope, we
may 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’s
in there.” There is no study. There is nothing to
tell you. You might turn green before it does
anything, so I don’t really know. …
LANITA MOSS:
A quick housekeeping, guys, because we’re
running over. Thank you, Trudy, very much. It was
very 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]