Being breast cancer veterans, we're
used to seeing specialists for every aspect of our care. Most of us
aren't
medical professionals,
so
we depend on our referring doctors and on the licensing standards
that the government has put in place to assure us that the
specialists who treat us are adequately trained and experienced. So
it's surprising – and daunting – to discover that the quality of
care we receive for our lymphedema may depend in large part on how
much we know about what that care should include, and on our own
insistence on receiving it.
WHO'S QUALIFIED TO
TREAT LYMPHEDEMA?
The specialist
to see for lymphedema treatment is a well-trained lymphedema
therapist. In many parts of the world (including the U.S.) there are
no mandated training standards for lymphedema therapists, so anyone
with physical therapy or occupational therapy certification can set
up shop as a lymphedema therapist with little or no specific
training in the pathology or treatment of lymphedema.
Since this lack
of standardized qualifications and training
can seriously affect the outcome of your
treatment, a licensing organization called the
Lymphology
Association of North America (LANA) has stepped in and set up
standards and a testing system to certify a minimum level of
training, knowledge and experience. These standards are endorsed by
the
National Lymphedema Network
(NLN) as well.
For now, though,
the
LANA
standards are strictly voluntary, so you'll want to be sure that
any lymphedema therapist you see meets those standards. Call before
you go and ask about their training and
LANA
certification.
According to
LANA and the
NLN,
the minimum requirements for a lymphedema therapist are at least 135
hours of specifically lymphedema training beyond his or her
certification as a physical therapist or occupational therapist.
(Massage therapists, nurses and doctors can also take the training
and become LANA certified lymphedema therapists, but Medicare does
not currently cover their services). One-third of those training
hours should be spent in the classroom learning about how the
lymphatic system works and what to do about it, and the other two
thirds in the lab, doing the intensive hands-on work of learning to
move sluggish lymph fluid on lymphedema patients.
Additional
requirements for
LANA certification include at least a year's
experience treating lymphedema patients, and recertification every
six years by completing at least 24 hours of on-going lymphedema
training.
One more note,
to help you avoid confusion: Therapist's may call themselves
"certified," but that may only mean they've been graduated from a
short lymphedema course of a few days or a week. Don't assume that
the doctor who refers you for treatment will know what the
LANA
standards are, or whether the therapist s/he refers you to has met
them. Check it out yourself to be sure any therapist you're referred
to meets the
LANA
training and practice standards.
Please do your homework and
make sure you are dealing the a
LANA certified, appropriately
trained lymphedema therapist, and be sure to ask our
List of Questions
to ask your Therapist before Treatment.
(top
of page)
HOW DO YOU FIND
A WELL-TRAINED THERAPIST?
There are
several on-line resources to help you find a therapist in your area
who has the recommended training.
The
LANA web site
lists therapists in the U.S. and Canada.
The
National Lymphedema Network
also has a therapist locater guide.
The
Therapist Locator
at
My Lymphadema
also lists
additional links to locating therapists in many parts of the world. Click on the Locator
and follow all the links. Some will give you results online, others
ask for your zip code and email address and will promptly send you
names of nearby therapists. Most of the links provide international
listings.
Another place to
find a qualified lymphedema therapist is
provided
by
Academy of Lymphatic
Studies.
MLD-UK, a
professional association of lymphedema therapists in the UK and
Eire, offers a listing for those countries and a few others as well.
(top of page)
A List of
Questions to ask your Therapist Before Treatment
1)
How many hours of specifically lymphedema training do you
have and from where did you receive your training?
2) Do you take continuing education courses?
3)
Are you aware of the standards for therapist training
established by the Lymphology Association of North America
(LANA), and do you meet those standards?
4) How
much of your practice is devoted to lymphedema?
5) How
do you handle fitting and purchasing of Durable Medical
Equipment (sleeves, gloves, compression bras, night
garments)?
6) Can
we discuss what your treatment plan is for me, and how it
compares to the
National Lymphedema Network's position paper
on Treatment?
7) How
will my visits be scheduled?
8)
Will you be available for maintenance visits as well as
acute care? How may I contact you when questions arise?
Be
sure to ask about any special circumstances you face, such
as living far from the therapist's office, having no help at
home, or limitations to self-massage and self-bandaging due
to arthritis or neuropathy.
Any
reasonable therapist should welcome the opportunity to go
over those points with you.
(top of page)
WHAT
SHOULD A THERAPIST DO ABOUT YOUR LYMPHEDEMA?
So, you've found
a well-trained therapist, gotten the referral from any member of
your healthcare team, and made the appointment. Here are some things
you should expect from lymphedema therapy.
The
National Lymphedema Network also offers a Position Paper on
Treatment
that can guide you in knowing what to expect. (Therapists can be either
male or female, but since most are women we'll use the feminine
pronouns to refer to them.)
Evaluation
Your therapist
will use information about your medical history, a physical
examination, and arm measurements to help her determine what your
specific treatment needs will be. She should be able to tell you
about the stage and condition of your lymphedema, what her treatment
plan is, and how it will be scheduled. (You may be surprised to
discover areas of swelling you were not aware of, since lymphedema
can be hard to judge by sight alone.) She should discuss with you
other areas of treatment she will be working on, including any
wounds, scar adhesions, radiation fibrosis, or range of motion
limitations.
You and your
therapist should agree on treatment goals that include decreasing
swelling, improving lymph drainage, restoring tissue softness and
skin condition, relieving lymphedema-related pain and movement
limitations, and teaching you the skills needed to maintain good
self-control.
Measuring will
be done again at intervals during therapy, and the therapist should
be able to tell you the amount of volume reduction. You may also
want to review your treatment goals together from time to time and
make any adjustments you feel are needed.
(top of page)
Complete
Decongestive Therapy – CDT
(also known
as Complete Decongestive Physiotherapy – CDP)
Lymphedema
treatment is known as Complete Decongestive Therapy. It involves
daily sessions, four or five days a week for two or more weeks, and
includes all the following:
-
Manual Lymph Drainage (a gentle
lymphatic massage)
and compression
bandaging (wrapping in layered short-stretch bandages) should
be done at each visit by the therapist,
not by you. In the end, though she needs to teach you to do
these yourself, as tools to help you maintain the reduction in
your arm or breast/chest. Very early stage lymphedema may not
require bandaging, but you should insist on beings taught to do
the self lymph drainage massage. While some deep massage may be
necessary to release scarring and fibrosis, lymph massage should
be as gentle as petting a kitten, barely moving the skin. It
should not cause discomfort, redness, or additional swelling.
-
Exercises,
which you'll need to do while wrapped as a way of promoting
lymph drainage, should be simple and gentle. They should not
stress or tire your arm, though they will probably seem awkward
due to the stiffness of the layered bandages.
-
Patient Education
and Self-Management
is an important aspect of therapy. Your therapist should have
the patience to answer your questions, repeat instructions and
procedures until you gain a comfortable grasp of them, and allow
a friend or loved one to learn along with you. Providing you
with written materials about each aspect of treatment is crucial
to helping you review and remember all the details when you're
finally on your own.
-
Compression garments
are essential for maintaining the fluid reduction. When the
swelling is adequately reduced, or a temporary plateau reached,
your therapist should fit you for garments or refer you to an
experienced fitter. You should return to your therapist for a
check on the fit
of compression
garments when you receive them.
-
How to Cope
is key
to continuing self-care, especially with a condition that
demands attention throughout the day. Your therapist should be able
to offer practical tips for coping with the day-to-day demands
of lymphedema, as well as an attitude that encourages, rather
than demands, successful self care.
(top of page)
Other Treatment Options
There are
currently two other treatment options that are not part of Complete
Decongestive Therapy but are generally accepted (with some
qualifications) as adjuncts to lymphedema therapy.
-
Pumps
(also referred to as
Intermittent Pneumatic Compression or Pressotherapy) have been
used as standard treatment in the past, but poor results coupled
with a growing understanding of the mechanics of the lymph
system have made pump use suspect. As a result of that new
understanding, newer versions of this old therapy stand-by have
been developed that operate in a way that corresponds to the
movements of Manual Lymph Drainage (one popular example is the
Flexitouch). A devise such as the Flexitouch is not a substitute
for Manual Lymph Drainage performed by a lymphedema therapist,
but it may have its place for certain patients. If your
therapist uses a pump as part of your treatment or recommends
one to you for home use, be sure to discuss with her the
specific reasons why she thinks it appropriate for you.
-
Kinesio taping
is a recent
addition to lymphedema therapy that is quickly gaining
credibility among therapists trained in its application. If you
and your therapist agree to try it, be sure she tests it on a
part of your body that is not at risk for lymphedema before
applying it to any affected area. Skin reactions and adhesive
allergies can create an infection risk.
Besides
pumps and
Kinesio
taping, there are a variety of other treatment ideas that some
therapists use or recommend. Some – like the
Acuscope,
Gas Ionization Lymph
Drainage XP tuning forks, magnets, and some herbals –
fall into the category of alternative treatments. Others – including
the
laser,
surgical interventions like
anastomosis and
node transplant, and prescription drugs – can be
considered experimental, without sufficient research as yet to
evaluate their long-term effectiveness or safety. Before agreeing to
interventions like these, you will want to ask questions and do your
own background research.
(top of page)
WHAT IF
YOUR THERAPIST ISN'T DOING THESE THINGS?
We hire these
people, so we should feel comfortable asking about anything we don't
understand. If the answers aren't there, it's time to find someone
new. Lymphedema therapists operate as free agents in their practice,
often supervised by other physical therapists who have no training
in lymphedema therapy themselves. Like anyone else, they can get
sloppy, or stubborn, or overworked – and they can take shortcuts.
Those shortcuts can put us at risk for lymphedema progression or
serious infection, so we can't afford to be afraid to ask tough
questions or find a new therapist.
The relationship
with our lymphedema therapists is a long-term one. We need to feel
comfortable calling them in an emergency, picking up with visits if
our swelling should flare, or checking out new developments in the
lymphedema field. If the thought of contacting your therapist makes
you anxious or hesitant, consider looking around for someone else.
(top of page)
THERAPISTS ARE PEOPLE TOO.
There are things
we can do to help them. When you find promising new research or
lymphedema products, pass that information along to your therapist.
Write a thank you note for the many extra, generous things she does,
and send a letter of commendation to the local chapter of her
professional organization. Next time you have an appointment with
your referring doctor, be sure to tell her or him about your
experience.
You're in a
unique position to encourage her in the things she does best. Try
not to expect her to solve all your lymphedema problems instantly
(though that's not easy!) Drop her a note from time to time to tell
her you're doing well, or that something she suggested is working.
Your thoughtfulness will not only strengthen your relationship – it
may even go a long way toward assuring she'll be there for others as
well.
(top of page)
