LIVING BEYOND BREAST CANCERS Guide to Understanding Lymphedema.pdf

LIVING BEYOND BREAST CANCER‘S

GUIDE TO UNDERSTANDING

Lymphedema

What to expect…

today, tomorrow and beyond

Steps for coping with the medical,

emotional and practical concerns

of breast cancer

Dear Friend:

Contents

You may be reading this guide before your

breast cancer therapy begins or while you are

in the middle of it. Or you could be years past

your breast cancer experience and just learning

that you have developed a side effect. After

spending so much time and thought choosing

the best plan for you, it can be distressing to

learn about lymphedema, a health problem that

can arise from breast cancer treatment.

SECTION I:

LOOKING AT LYMPHEDEMA. . . . . . . . . . . . . . . 2

SECTION II:

KNOW THE EARLY SIGNS. . . . . . . . . . . . . . . . . 8

SECTION III:

TAKING CONTROL OF LYMPHEDEMA RISK. . . . 12

The purpose of our Guide to Understanding

Lymphedema is to empower you with information

to understand how lymphedema develops, what

your risks are, which signs to watch for and

what to do should you develop it. By treating

lymphedema early, you can keep it from turning

into a serious problem.

SECTION IV:

TREATING LYMPHEDEMA. . . . . . . . . . . . . . . . 16

SECTION V:

YOUR EMOTIONS AND LYMPHEDEMA. . . . . . . 24

SECTION VI:

PAYING FOR LYMPHEDEMA CARE . . . . . . . . . 28

At Living Beyond Breast Cancer, we encourage

you to get answers to all of your questions.

We’re here for guidance and support—just call

our Survivors’ Helpline at (888) 753-LBBC (5222) —

whenever you need us.

SECTION VII:

MOVING FORWARD. . . . . . . . . . . . . . . . . . . 32

SECTION VIII:

RESOURCES. . . . . . . . . . . . . . . . . . . . . . . . . 34

Warmly,

LIVING BEYOND BREAST CANCER

FREE HELPLINE (888) 753-LBBC (5222)

Jean A. Sachs, MSS, MLSP

Chief Executive Officer

All women pictured in this brochure are

LBBC volunteers whose lives have been affected

by breast cancer. We thank them for sharing

themselves and their experiences.

TABLE OF

SECTION I

LOOKING AT

Lymphedema

hen you hear you need breast cancer

treatment, most likely your immediate

concern is getting the best therapy for

you. Your healthcare providers are focused on

that same goal.

What might be overlooked is a discussion about a

side effect of cancer treatment that affects some

women: lymphedema. This condition happens when

lymph fluid builds up in the body, resulting in swelling

and other possible symptoms.

Lymphedema can occur anytime after treatment—

even many years later. For women affected by breast

cancer, it usually develops in the tissues under the skin

of your hand, arm, breast or torso, on the same side

as the cancer. As fluid builds up and the area swells, it

can cause pain, reduced movement, serious infections,

emotional upset and reduced quality of life.

You may have learned about lymphedema briefly

during planning for breast cancer therapy but felt

too overwhelmed with other concerns to focus on

a possible side effect. Your healthcare team may not

have told you much about lymphedema or made it

sound very unlikely you would develop it. Or you

may have heard nothing about the condition until

you were diagnosed with it. What’s more, some

medical professionals know little about lymphedema.

Researchers believe that lymphedema is largely

unrecognized and underdiagnosed. Studies show

that between 10 percent to 50 percent of women

treated for breast cancer develop the condition,

depending upon the treatment they receive.

According to the American Cancer Society, the

risk of upper arm lymphedema after breast cancer

treatment is 15 percent to 20 percent.

The amount of swelling with lymphedema can be

lessened with early and proper detection, skilled therapy

and ongoing self-care. Yet, even if swelling disappears,

lymphedema is a chronic condition and remains

a health concern for the rest of your life. Despite

such challenges, many women successfully manage

lymphedema and move forward with their lives.

node(s) to which the breast lymph drains, typically one

to three nodes in the lower armpit. Lymphedema can

develop after sentinel node biopsy, but it happens at

a lower rate than with an axillary dissection.

Radiation also can damage your lymph system,

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

greater the lymphedema risk. Postmastectomy radia-

tion (radiation to the chest wall after the breast is

removed or reconstructed) can lead to lymphedema,

especially if the lymph node area also is radiated. If

you had both breasts removed (bilateral mastectomy),

your risk is on the side or sides where nodes were taken.

How Breast Cancer Treatment

Can Lead to Lymphedema

Your lymphatic system lies just under your skin, above

your muscles. This system has tiny vessels (thin tubes)

that carry nutrient-rich lymph (a fluid) through a web

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

parts of the body. The lymph system also removes

fluid that normally leaks out of blood vessels and

returns it to the vascular system.

Who Gets Lymphedema?

Developing lymphedema is not your fault. We do not

know why one woman gets lymphedema after breast

cancer treatment while another, who has the same

treatment, does not. Genetic differences may play a

role. If you have concerns about your risk, discuss them

with your healthcare team. Worry about possibly devel-

oping lymphedema should not keep you from getting

the breast cancer treatment that is best for you.

To stay healthy, lymph must keep moving. When

lymph nodes are damaged or removed (as during

breast cancer surgery or radiation), scar tissue develops

and fluid cannot drain. At first, the tissue affected by

lymphedema may feel firm and thickened. As fluid

backs up, swelling and inflammation set in. If not

drained, the protein-filled fluid promotes the risk for

infection and more swelling.

People who develop lymphedema tend to share certain

traits, although having those traits does not mean you

will get lymphedema. Lymphedema is linked to: having

radiation therapy; an infection on the side of your

body that had surgery; overuse or trauma to the hand

or arm on that side; younger age at diagnosis; high

blood pressure; having more than ten nodes removed;

having multiple lymph nodes with cancer; and being

overweight or obese. Weight gained after breast cancer

treatment seems to contribute more to developing

lymphedema than does being overweight beforehand.

Your risk for developing lymphedema depends, in part,

on the breast cancer procedure you had, the location

and number of any lymph nodes involved in treatment

and how your body heals afterward. Surgery can cut

through the lymphatic channels, breaking up the path-

ways where lymph travels. Surgery in the armpit (or

axillary) region removes lower nodes where the breast

and underarm tissue meet and may also remove higher

nodes in the underarm area.

An axillary dissection removes multiple nodes in the

lower to mid-upper underarm. A common procedure

called sentinel node biopsy removes only the main

Race does not increase risk. Research also shows that

women who exercise regularly, learn about lymphedema

before breast cancer treatment and follow self-care

advice develop it less often.

10 KEY TERMS TO KNOW

Axillary lymph node dissection: Surgery

removing lymph nodes from armpit (axilla)

area to examine them for breast cancer cells.

Lymph node: Round mass of lymphatic

tissue that filters bacteria and waste from

lymph (fluid) and stores white blood cells.

Also called lymph gland.

Cellulitis: Infection and swelling that causes skin

to be warm, red and tender; may also produce

fever, chills, swollen lymph nodes or blisters.

Lymph vessel: Thin tube that transports lymph

and white blood cells.

Certified lymphedema therapist: Specially

trained professional, often a physical therapist,

occupational therapist or nurse, who has passed

a lymphedema certification course.

Lymphedema: Condition in which excess fluid

(lymph) collects in tissues and causes swelling.

Manual lymphatic drainage (MLD): Specialized

hands-on skin manipulation, or massage-like

stretching of the skin, sometimes called

lymphatic massage, that moves lymph from

affected area to elsewhere in the body

for recirculation.

Complete decongestive therapy (CDT): Treatment

to manage lymphedema through special gentle

massage (manual lymphatic drainage), use of

compression bandages, skin care and exercise.

Compression bandages and garments: Short-stretch

(low elasticity) bandages are wrapped around

swollen area to support and stimulate the lymphatic

system, reducing swelling. Compression garments

(sleeves, fingerless gloves or gauntlets, vests or

bras) are used after CDT and must be well-fitted

or they can worsen lymphedema.

Sentinel node biopsy: Surgical removal and

examination of the first lymph node(s) to which

breast cancer cells are likely to travel from a

primary tumor. Also called sentinel lymph

node biopsy.

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