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GUIDE TO UNDERSTANDING
Lymphedema
What to expect…
today, tomorrow and beyond
SECTION VII:
At Living Beyond Breast Cancer, we encourage MOVING FORWARD. . . . . . . . . . . . . . . . . . . 32
you to get answers to all of your questions.
We’re here for guidance and support—just call SECTION VIII:
our Survivors’ Helpline at (888) 753-LBBC (5222)— RESOURCES. . . . . . . . . . . . . . . . . . . . . . . . . 34
whenever you need us.
LOOKING AT
2 3
The amount of swelling with lymphedema can be node(s) to which the breast lymph drains, typically one
lessened with early and proper detection, skilled therapy to three nodes in the lower armpit. Lymphedema can
and ongoing self-care. Yet, even if swelling disappears, develop after sentinel node biopsy, but it happens at
lymphedema is a chronic condition and remains a lower rate than with an axillary dissection.
a health concern for the rest of your life. Despite
such challenges, many women successfully manage Radiation also can damage your lymph system,
lymphedema and move forward with their lives. causing scarring, or fibrosis, that prevents lymph
flow. The wider the area of the breast radiated and
the more of the underarm the radiation reaches, the
How Breast Cancer Treatment greater the lymphedema risk. Postmastectomy radia-
Can Lead to Lymphedema tion (radiation to the chest wall after the breast is
removed or reconstructed) can lead to lymphedema,
Your lymphatic system lies just under your skin, above
especially if the lymph node area also is radiated. If
your muscles. This system has tiny vessels (thin tubes)
you had both breasts removed (bilateral mastectomy),
that carry nutrient-rich lymph (a fluid) through a web
your risk is on the side or sides where nodes were taken.
of nodes—small, round masses that filter bacteria and
waste and store white blood cells. The fluid, which is
important for fighting infections, then drains to other Who Gets Lymphedema?
parts of the body. The lymph system also removes
fluid that normally leaks out of blood vessels and Developing lymphedema is not your fault. We do not
returns it to the vascular system. know why one woman gets lymphedema after breast
cancer treatment while another, who has the same
To stay healthy, lymph must keep moving. When treatment, does not. Genetic differences may play a
lymph nodes are damaged or removed (as during role. If you have concerns about your risk, discuss them
breast cancer surgery or radiation), scar tissue develops with your healthcare team. Worry about possibly devel-
and fluid cannot drain. At first, the tissue affected by oping lymphedema should not keep you from getting
lymphedema may feel firm and thickened. As fluid the breast cancer treatment that is best for you.
backs up, swelling and inflammation set in. If not
drained, the protein-filled fluid promotes the risk for People who develop lymphedema tend to share certain
infection and more swelling. traits, although having those traits does not mean you
will get lymphedema. Lymphedema is linked to: having
Your risk for developing lymphedema depends, in part, radiation therapy; an infection on the side of your
on the breast cancer procedure you had, the location body that had surgery; overuse or trauma to the hand
and number of any lymph nodes involved in treatment or arm on that side; younger age at diagnosis; high
and how your body heals afterward. Surgery can cut blood pressure; having more than ten nodes removed;
through the lymphatic channels, breaking up the path- having multiple lymph nodes with cancer; and being
ways where lymph travels. Surgery in the armpit (or overweight or obese. Weight gained after breast cancer
axillary) region removes lower nodes where the breast treatment seems to contribute more to developing
and underarm tissue meet and may also remove higher lymphedema than does being overweight beforehand.
nodes in the underarm area.
Race does not increase risk. Research also shows that
An axillary dissection removes multiple nodes in the women who exercise regularly, learn about lymphedema
lower to mid-upper underarm. A common procedure before breast cancer treatment and follow self-care
called sentinel node biopsy removes only the main advice develop it less often.
4 5
10 KEY TERMS TO KNOW
Axillary lymph node dissection: Surgery
6 7
SECTION II
KNOW THE
Early Signs
I f lymphedema is developing, you probably
will notice changes in skin sensation
or movement before anyone else sees
swelling, including your healthcare provider.
Be sure to speak up about any change you
feel! Early diagnosis and treatment are key.
Familiarize yourself with the 10 Common
Signs of Lymphedema (see bookmark on back
cover). Taking early action can help you get
the condition under control before it progresses.
8 9
Lymphedema Professionals
10 11
SECTION III
TAKING CONTROL OF
TREATING
Basics of Complete
Decongestive Therapy (CDT)
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After lymphatic massage, the therapist wraps Decongestive lymphatic exercises help you regain
the area in multiple layers of padding and “short- activity during the intensive treatment period. These
stretch” compression bandages. These woven movements differ from standard physical exercises
bandages look somewhat like Ace bandages, by being more gentle and promoting good lym-
but stretch much less, which is very important for phatic flow. You must wear compression bandages
treating lymphedema. Compression bandages are or garments while doing the exercises.
wrapped with careful layering to provide the right
pressure to help the muscles during exercise to
pump lymph fluid. Most people wear bandages Other Treatment Methods
round-the-clock throughout the intensive period Compression pumps with inflatable garments apply
to control swelling and soften tissue. on-and-off pressure to move lymph fluid. Research
recommends using pumps only if you also do
When swelling is under control, you may switch from complete decongestive therapy. Some pumps may
bandages to an elastic compression garment, such worsen lymphedema by pushing fluid when the
as a sleeve, hand gauntlet or chest garment, worn lymphatic system has not been decongested. If you
during the day and bandaging or a compression gar- are prescribed a pump, it is very important to follow
ment at night. Elastic and nonelastic garments are the directions you are given for use.
available in off-the-shelf and custom-made models.
Compression sleeves cost about $50 to $300, some Medicines and supplements do not reduce lym-
made from attractive fabrics. You probably will need phedema. Diuretics, water pills that increase urine
to buy two garments so you have one to wear while production, do not lessen lymphatic fluid and can
the other is in the wash. Elastic garments wear out cause harm. Surgery, such as liposuction and
and need to be replaced every three to six months. removing body tissue affected by lymphedema,
carries risks and does not eliminate the need for
A certified lymphedema therapist can help you get compression garments.
fitted correctly for a garment. Poor-fitting garments
can worsen lymphedema, so check sizing regularly. If There are a few promising developments: A small
swelling or your overall weight lessens or increases, study showed that a mechanical system, which
you will need to change size. Special garments simulates manual lymphatic drainage movements,
accommodate the needs of women who have had reduced arm volume more than lymphatic
bilateral mastectomies. (For some manufacturers of massage you do yourself. Further research could
bandages and garments, see “Resources,” page 34.) find this system, which has U.S. Food and Drug
Administration (FDA) clearance, beneficial for
Some therapists also use elastic kinesio tape (you may in-home use. The FDA also cleared a laser therapy
have seen some Olympic athletes wearing it) as part unit, for professional use, to treat the fibrosis and
of treatment. Kinesio taping for lymphedema should swelling of postmastectomy lymphedema.
only be done by someone trained in the technique.
18 19
Self-Care Is Vital
After intensive treatment reduces swelling, you Begin physical exercise in small doses, at a slow
must continue with CDT at home. The therapist pace. Pushing too hard can trigger or worsen
will make sure you get a garment that fits you lymphedema. Lifting weights is fine if you start with
properly. Your therapist will teach you (or a care- light loads and increase weight gradually. Do not
giver) how to do lymphatic decongestion or overuse your arms or rush to get to a higher exercise
massage, wrap bandages, wear and care for level. If your arm begins to feel tired, stop exercising.
compression garments, exercise, take care of If, during or after exercise, you notice pain or odd
your skin and use risk-reduction tips. Self-care sensations in the arm on your treated side, you may
may feel like a burden, but you must do it to want to decrease your exercise intensity.
keep the lymphedema in check.
Weight loss can be part of self-care. If you are
Depending on the severity of your condition, you overweight and drop pounds after developing
may not need to bandage regularly at home. You lymphedema, it can lessen the swelling. Eating a
may find a small amount of swelling acceptable if balanced, low-salt diet may help. Always talk with
you do not have to bandage daily. Others bandage your healthcare team before starting any exercise
or wear a compression garment only at night. or weight loss program.
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10 BEST BITS OF BEEN-THERE ADVICE
FROM WOMEN WITH LYMPHEDEMA
“See a certified lymphedema therapist
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SECTION V
Lymphedema
H aving lymphedema can stir a range
of emotions: You may feel angry
and betrayed that your body let you
down or feel guilty that you somehow caused
your condition (you did not). If you have a
changed body image or limits to your activities,
you could fear that lymphedema affects your
personal life or work. Since lymphedema
worsens if not controlled, you might focus
anxiously on what could happen next. You
may feel sad or depressed.
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SECTION VI
PAYING FOR
Lymphedema Care
I f you have health insurance, check with
your insurer to find out whether your
plan covers lymphedema services and
supplies. Private health plans vary. Medicaid
plans differ from state to state, so ask whether
your state covers lymphedema treatment. The
Women’s Health and Cancer Rights Act of 1998
requires that all group insurance policies cover
the treatment of lymphedema resulting from
mastectomy. About half of all states have
similar laws which extend to women covered
by other types of policies.
28 29
Finding Financial Help
30 31
SECTION VII
MOVING
Forward
I f you have lymphedema, it may be hard
to accept that this condition is part of
your life. It is okay to acknowledge that
lymphedema is unpleasant and unfair, especially
after you have been through breast cancer
treatment. The key is to be able to move past
your reasonable and normal feelings so you
can manage the therapy that will help you
maintain your quality of life.
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SECTION VIII
Resources
H ere is a list of where to go to find out
more. This list is not all inclusive, and
many other groups have resources
that may help you.
Lymphedema Organizations
34 35
SHARE: Self-Help for Women with Breast and Lymphedema Supplies
Ovarian Cancer: education and support, New York
City programs, national toll-free hotline staffed by Consult your healthcare provider for product
English and Spanish speakers, (866) 891-2392, recommendations. Manufacturers include:
sharecancersupport.org
Short-stretch bandages: BSN-Jobst,
Sisters Network Inc.: national and chapter (800) 537-1063, www.jobst-usa.com;
programs, support for African-American women, Hartmann-Conco, (800) 243-2294,
(866) 781-1808, sistersnetworkinc.org us.hartmann.info; KT Medical, (888) 443-3362,
ktmedical.com; Lohmann-Raucher,
Susan G. Komen for the Cure: grants to local www.lohmann-rauscher.com
groups for lymphedema programs and supplies,
(877) 465-6636, komen.org Elastic compression garments: BSN-Jobst,
(800) 537-1063, www.jobst-usa.com; Juzo,
The Wellness Community: support groups juzousa.com; LympheDIVAs, fashion products,
and workshops, (888) 793-9355, (866) 411-3482, lymphedivas.com; Medi,
thewellnesscommunity.org (800) 633-6334, www.mediusa.com; Sigvaris,
sigvaris.com
Young Survival Coalition: support and information
geared to younger women’s concerns, message Other garments: Bellisse, bras for breast or chest
boards, (877) 972-1011, youngsurvival.org lymphedema, (877) 273-1683, bellisse.com; CircAid,
non-elastic garments, (800) 247-2243, circaid.com;
JoViPak, foam-filled garments, (866) 888-5684,
Lymphedema Exercise Programs
jovipak.com
36 37
Many thanks to these individuals Physical Medicine and Rehabilitation
who volunteered their time and Andrea L. Cheville, MD, CLT-LANA, Mayo Clinic,
expertise for this guide: Rochester, MN
38 39
Notes
10 COMMON SIGNS OF
Lymphedema
Tell your healthcare provider if
you notice any of these symp-
hen you are ready, we
toms in your arm, back, chest,
breast, hand, fingers, elbow or
elsewhere on the side(s) where
you had surgery with lymph
W
our
encourage you to call
SURVIVORS’ HELPLINE
node removal or radiation:
at (888) 753-LBBC (5222) for
Pulling sensation
3 national, toll-free service is staffed
Read about
6 When you press the skin near
the treatment site, it leaves 10 Common Signs
an indented spot of Lymphedema
on the reverse side