What to expect…today, tomorrow and beyond

Steps for coping with the medical, emotional and practical concerns of breast cancer

LIVING BEYOND BREAST CANCER‘SGUIDE TO UNDERSTANDING

Lymphedema

TABLE OF

ContentsSECTION I:

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

SECTION II:

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

SECTION III:

TAKING CONTROL OF LYMPHEDEMA RISK. . . .12

SECTION IV:

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

SECTION V:

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

SECTION VI:

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

SECTION VII:

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

SECTION VIII:

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

LIVING BEYOND BREAST CANCER FREE HELPLINE (888) 753-LBBC (5222)

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.

Dear Friend: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.

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.

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.

Warmly,

Jean A. Sachs, MSS, MLSPChief Executive Officer

hen you hear you need breast cancertreatment, most likely your immediateconcern is getting the best therapy for

you. Your healthcare providers are focused on that same goal.

What might be overlooked is a discussion about aside effect of cancer treatment that affects somewomen: lymphedema. This condition happens whenlymph fluid builds up in the body, resulting in swellingand other possible symptoms.

Lymphedema can occur anytime after treatment—even many years later. For women affected by breastcancer, it usually develops in the tissues under the skinof your hand, arm, breast or torso, on the same sideas the cancer. As fluid builds up and the area swells, itcan 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 nothave told you much about lymphedema or made itsound very unlikely you would develop it. Or youmay have heard nothing about the condition untilyou were diagnosed with it. What’s more, somemedical professionals know little about lymphedema.

Researchers believe that lymphedema is largely unrecognized and underdiagnosed. Studies show that between 10 percent to 50 percent of womentreated 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 cancertreatment is 15 percent to 20 percent.

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WLOOKING AT

Lymphedema

SECTION I

node(s) to which the breast lymph drains, typically one to three nodes in the lower armpit. Lymphedema candevelop 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 lymphflow. The wider the area of the breast radiated andthe more of the underarm the radiation reaches, thegreater the lymphedema risk. Postmastectomy radia-tion (radiation to the chest wall after the breast isremoved or reconstructed) can lead to lymphedema,especially if the lymph node area also is radiated. Ifyou had both breasts removed (bilateral mastectomy),your risk is on the side or sides where nodes were taken.

Who Gets Lymphedema?

Developing lymphedema is not your fault. We do notknow why one woman gets lymphedema after breastcancer treatment while another, who has the sametreatment, does not. Genetic differences may play a role. If you have concerns about your risk, discuss themwith your healthcare team. Worry about possibly devel-oping lymphedema should not keep you from gettingthe breast cancer treatment that is best for you.

People who develop lymphedema tend to share certaintraits, although having those traits does not mean youwill get lymphedema. Lymphedema is linked to: havingradiation therapy; an infection on the side of your body that had surgery; overuse or trauma to the handor arm on that side; younger age at diagnosis; highblood pressure; having more than ten nodes removed;having multiple lymph nodes with cancer; and beingoverweight or obese. Weight gained after breast cancertreatment seems to contribute more to developing lymphedema than does being overweight beforehand.

Race does not increase risk. Research also shows thatwomen who exercise regularly, learn about lymphedemabefore breast cancer treatment and follow self-careadvice develop it less often.

The amount of swelling with lymphedema can be lessened with early and proper detection, skilled therapyand 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 managelymphedema and move forward with their lives.

How Breast Cancer Treatment Can Lead to Lymphedema

Your lymphatic system lies just under your skin, aboveyour 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 andwaste and store white blood cells. The fluid, which isimportant for fighting infections, then drains to otherparts of the body. The lymph system also removesfluid that normally leaks out of blood vessels andreturns it to the vascular system.

To stay healthy, lymph must keep moving. Whenlymph nodes are damaged or removed (as duringbreast cancer surgery or radiation), scar tissue developsand fluid cannot drain. At first, the tissue affected bylymphedema may feel firm and thickened. As fluidbacks up, swelling and inflammation set in. If notdrained, the protein-filled fluid promotes the risk forinfection and more swelling.

Your risk for developing lymphedema depends, in part,on the breast cancer procedure you had, the locationand number of any lymph nodes involved in treatmentand how your body heals afterward. Surgery can cutthrough the lymphatic channels, breaking up the path-ways where lymph travels. Surgery in the armpit (or axillary) region removes lower nodes where the breastand underarm tissue meet and may also remove highernodes in the underarm area.

An axillary dissection removes multiple nodes in thelower to mid-upper underarm. A common procedurecalled sentinel node biopsy removes only the main

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Axillary lymph node dissection: Surgery removing lymph nodes from armpit (axilla) area to examine them for breast cancer cells.

Cellulitis: Infection and swelling that causes skin to be warm, red and tender; may also producefever, chills, swollen lymph nodes or blisters.

Certified lymphedema therapist: Specially trained professional, often a physical therapist,occupational therapist or nurse, who has passed a lymphedema certification course.

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 aroundswollen area to support and stimulate the lymphaticsystem, reducing swelling. Compression garments(sleeves, fingerless gloves or gauntlets, vests orbras) are used after CDT and must be well-fitted or they can worsen lymphedema.

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Lymph node: Round mass of lymphatic tissue that filters bacteria and waste from lymph (fluid) and stores white blood cells. Also called lymph gland.

Lymph vessel: Thin tube that transports lymph and white blood cells.

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.

Sentinel node biopsy: Surgical removal andexamination of the first lymph node(s) to whichbreast cancer cells are likely to travel from a primary tumor. Also called sentinel lymph node biopsy.

10 KEY TERMS TO KNOW

I f lymphedema is developing, you probablywill 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 backcover). Taking early action can help you getthe condition under control before it progresses.

Lymphedema often develops in stages. Before swelling becomes apparent, you may feel an achiness, heaviness, tingling or increased warmth inyour limb or hand. Monitor the tissue texture andskin on the side where you had surgery or radiation.Are the veins or tendons on one hand harder to seethan they used to be? Can you see valleys betweenyour knuckles? If you notice changes, have your condition evaluated by your healthcare provider orget a referral to a certified lymphedema therapist(see “Lymphedema Professionals,” page 10).

Swelling might occur during the course of the day and then go away during the night, or start and then go away after you elevate the swollenarea. When this happens, many women mistakenlythink there is no real problem. Follow up on thesesigns if they persist because they could mean youhave lymphedema.

Many women do not go for a medical evaluationuntil visible changes appear—either slowly or suddenly—and there is fibrosis or hardening of the underlying tissue. By then, the condition needsmore rigorous treatment.

Take note: Immediately following breast cancer surgery or radiation, you may have swelling, oredema, that is not lymphedema. If your swellingpersists three to six months after surgery, get a lymphedema evaluation.

KNOW THE

9

Early Signs

8

SECTION II

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Lymphedema Professionals

It’s important to see a special therapist who can reduce the swelling and other problems of lymphedema as well as teach you ongoing care. The Lymphology Association of North America(LANA) certifies therapists in complete decongestivetherapy techniques (see “Treating Lymphedema,”page 16) according to national standards. Therapistsmay also be certified by the particular program thattrained them.

Certified providers are often physical therapists (PTs)or occupational therapists (OTs), as well as nurses,doctors or massage therapists. Physical therapistswho do not have certification also learn to treat lymphedema as part of their education.

When choosing lymphedema therapists, ask abouttheir training (several schools provide lymphedemaprofessional education) and whether insurers reim-burse for their services. You can find LANA-certifiedtherapists at clt-lana.org/therapists/default.asp or(773) 756-8971. Your healthcare provider also mayhave suggestions. For lists of lymphedema treatment centers, go to lymphnotes.com/treatment.php orlymphnet.org/resourceGuide/treatmentCenters.htm. If you don’t have a computer, your local publiclibrary will help you.

I f breast cancer surgery or radiationinvolved your lymph nodes, there is no surefire way to prevent lymphedema.

You can lower your risk or lessen the severity of lymphedema by paying attention to changes on your treated side (see “Know the EarlySigns,” page 8), following a few common-sense precautions (see “10 Ways to Reduce YourLymphedema Risk,” page 14) and getting medicalattention quickly if signs occur. It helps to see a lymphedema therapist after breast cancertreatment to talk about your personal risk.

Some things seem to trigger lymphedema: trauma orstress to the arm or hand on the treated side; cuts,scrapes, burns, bites and infection; too much heat, coldor weight. If you develop an infection, it is important tosee a physician on the same day symptoms appear.Lymphedema also may occur without a known cause.

After breast cancer treatment, lymphedema can developin the arm(s). Taking measurements helps detect it. Ifpossible, have the circumference (the distance around) of your arms measured before surgery or radiation. Thisprovides a baseline for volume and size. A few cancercenters and oncology practices take pretreatment base-line measurements, followed by regular measurementsafterward. If size changes, intervention can begin quickly.

Other measurement methods sometimes used in medical offices include water displacement (volumeter),electronic limb cross-sections (perometer) and bioimpedance, electrical currents that analyze themakeup of tissue. For diagnosing lymphedema, somedoctors use special x-rays to see lymph flow or look at the area on a CT (computed tomography) or MRI(magnetic resonance imaging) scan.

You can also monitor arm size at home. Using a spring-loaded (not cloth) tape measure to keep constant pressure, measure around your arm everyfour to ten centimeters (you may need someone tohelp you). If the circumference has increased bymore than two centimeters, have your arm checked by a lymphedema therapist.

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TAKING CONTROL OF

Lymphedema Risk

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SECTION III

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Avoid wearing tight rings, watches, bracelets, sleeves or cuffs; do not carry a heavy shoulder bag or grocery bags on yourtreated side. Stay away from tight clothing, especially if your swelling is in the chest or trunk.

Extreme cold or heat may cause problems. If you want to use a hot tub or sauna, limit yourtime (the National Lymphedema Network suggests no more than 15 minutes). Keep youraffected area out of the hot tub.

Because a cut can cause infection, push cuticlesback gently with a towel after showering orbathing; avoid cutting. Reconsider acrylic nailsbecause they can cause infections.

Physical exercise is important and helpful torecovery, but because it can stress lymphatics, it should be done with guidance and supportfrom your healthcare team and a physical therapist. Exercise slowly and increase effortgradually, even if you were very active beforebreast cancer treatment. Vigorous exercise oroveruse of a limb may trigger lymphedema. If you have the condition, wear bandages or a compression garment while exercising (be sure to consult an experienced provider for proper fit)and modify your routine. If you are at risk, talkwith your healthcare provider about whether towear compression bandages or garments. Watchfor pain or swelling. If you take a break of twoweeks or more from physical activity, start up at alower intensity. Lymphatic exercises (see “Basics ofComplete Decongestive Therapy,” page 17) differ from general physical exercise and help inrisk reduction and lymphedema treatment.

Protect your hands, fingers and arms. Use anoven mitt when cooking or baking; keep theaffected arm away from hot steam. Wear gloveswhen gardening, doing house repairs or cleaning,and a thimble for sewing. You may want to usean electric razor for underarms to avoid nicks.

There’s little research on the best ways to lowerrisk, but women and experts shared this advice:

Avoid vaccinations, injections, acupuncture,blood draws or blood pressure testing on the sideof your body where you had node-related surgeryor radiation. You may want to wear a lymphedemaalert bracelet on that arm (see “Resources,” page34). If you had treatment on both sides, ask tohave procedures on the side that had fewernodes removed or was treated in the more distantpast. Another part of the body, such as the leg,also may be used for some procedures.

Clean cuts and scrapes quickly and apply anantibiotic to prevent infection. Treat all infectionsimmediately. Call your doctor if you have a feveror feel cold after getting an infection or see red-ness, feel increased heat in the area or swelling.

Keep your weight down. Extra pounds increaseyour lymphedema risk. If you have lymphedema,losing weight may help reduce symptoms.

Travel: Decreased aircraft cabin pressure or highaltitudes may affect lymphatic system function.Wear a compression sleeve, garment or bandageswhen you fly if you already have lymphedema.Make sure the sleeve fits you correctly; poor fitcan worsen the condition. To minimize handswelling, wear a compression glove or gauntlet inaddition to the sleeve and squeeze a rubber ballto help stimulate lymphatic flow. If you haven’tyet developed lymphedema, talk with yourhealthcare provider about whether you shouldwear a compression garment when you fly. Ifyou’ve had cellulitis (infection) or lymphedemabefore, carry antibiotics with you.

Use insect repellant to avoid bug bites and sunscreen (SPF 15 or greater, with UVA and UVBprotection) to prevent sunburn. Use a nutrient-rich lotion to nourish and protect skin.

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10 WAYS TO REDUCE YOUR LYMPHEDEMA RISK

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t one time, people believed you could do little about lymphedema. We know now that is not true. There

are effective treatments that help manage and lessen the condition.

The standard approach is to begin with an intensiveregimen. A trained lymphedema therapist givescomplete decongestive therapy (CDT), which includeslymphatic drainage, wrapping with compressionbandages, skin care and lymphatic exercises. Thistreatment takes time—you might have daily medicaloffice visits for several weeks—but is the “gold standard” for reducing lymphedema. Talk with your healthcare provider about what treatment isappropriate for you.

Basics of Complete Decongestive Therapy (CDT)

Lymphatic decongestion or massage, also knownas manual lymphatic drainage (MLD), gentlymoves excess lymphatic fluid and protein from aswollen area to a part of the body where it candrain better. This helps the fluid find new drainagepathways to replace those damaged by breast cancer treatment.

Unlike traditional massage, which uses forceful pressure to manipulate muscles and can increaseswelling, lymphatic massage uses a very light touch to stimulate the region just below the skin.Lymphatic massage therapists receive special training and certification to ensure they are doingthe technique correctly.

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TREATING

Lymphedema

SECTION IV

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Decongestive lymphatic exercises help you regainactivity during the intensive treatment period. Thesemovements differ from standard physical exercisesby being more gentle and promoting good lym-phatic flow. You must wear compression bandagesor garments while doing the exercises.

Other Treatment Methods

Compression pumps with inflatable garments applyon-and-off pressure to move lymph fluid. Researchrecommends using pumps only if you also do complete decongestive therapy. Some pumps mayworsen lymphedema by pushing fluid when the lymphatic system has not been decongested. If youare prescribed a pump, it is very important to followthe directions you are given for use.

Medicines and supplements do not reduce lym-phedema. Diuretics, water pills that increase urineproduction, do not lessen lymphatic fluid and can cause harm. Surgery, such as liposuction and removing body tissue affected by lymphedema, carries risks and does not eliminate the need forcompression garments.

There are a few promising developments: A smallstudy showed that a mechanical system, which simulates manual lymphatic drainage movements,reduced arm volume more than lymphatic massage you do yourself. Further research could find this system, which has U.S. Food and DrugAdministration (FDA) clearance, beneficial for in-home use. The FDA also cleared a laser therapyunit, for professional use, to treat the fibrosis andswelling of postmastectomy lymphedema.

After lymphatic massage, the therapist wraps the area in multiple layers of padding and “short-stretch” compression bandages. These woven bandages look somewhat like Ace bandages, but stretch much less, which is very important fortreating lymphedema.Compression bandages arewrapped with careful layering to provide the rightpressure to help the muscles during exercise topump lymph fluid. Most people wear bandagesround-the-clock throughout the intensive period to control swelling and soften tissue.

When swelling is under control, you may switch frombandages to an elastic compression garment, suchas a sleeve, hand gauntlet or chest garment, wornduring the day and bandaging or a compression gar-ment at night. Elastic and nonelastic garments areavailable in off-the-shelf and custom-made models.Compression sleeves cost about $50 to $300, somemade from attractive fabrics. You probably will needto buy two garments so you have one to wear whilethe other is in the wash. Elastic garments wear outand need to be replaced every three to six months.

A certified lymphedema therapist can help you getfitted correctly for a garment. Poor-fitting garmentscan worsen lymphedema, so check sizing regularly. Ifswelling or your overall weight lessens or increases,you will need to change size. Special garmentsaccommodate the needs of women who have hadbilateral mastectomies. (For some manufacturers ofbandages and garments, see “Resources,” page 34.)

Some therapists also use elastic kinesio tape (you mayhave seen some Olympic athletes wearing it) as partof treatment. Kinesio taping for lymphedema shouldonly be done by someone trained in the technique.

Because lymphedema swells and stretches the skin, you need diligent skin care to avoid injury or infection. Your therapist will monitor your skinclosely and recommend the best ways to clean, dryand moisturize the affected area.

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Begin physical exercise in small doses, at a slowpace. Pushing too hard can trigger or worsen lymphedema. Lifting weights is fine if you start withlight loads and increase weight gradually. Do notoveruse your arms or rush to get to a higher exerciselevel. If your arm begins to feel tired, stop exercising.If, during or after exercise, you notice pain or oddsensations in the arm on your treated side, you maywant to decrease your exercise intensity.

Weight loss can be part of self-care. If you are overweight and drop pounds after developing lymphedema, it can lessen the swelling. Eating a balanced, low-salt diet may help. Always talk withyour healthcare team before starting any exercise or weight loss program.

Self-Care Is Vital

After intensive treatment reduces swelling, you must continue with CDT at home. The therapist will make sure you get a garment that fits youproperly. Your therapist will teach you (or a care-giver) how to do lymphatic decongestion or massage, wrap bandages, wear and care for compression garments, exercise, take care of your skin and use risk-reduction tips. Self-care may feel like a burden, but you must do it to keep the lymphedema in check.

Depending on the severity of your condition, youmay not need to bandage regularly at home. Youmay find a small amount of swelling acceptable ifyou do not have to bandage daily. Others bandageor wear a compression garment only at night.

Your therapist may advise that you wear a garmentall day. There are different garment types, with varying amounts of pressure. With help from yourtherapist, make sure yours is not tight and does notirritate your skin. A too-snug garment can makelymphedema worse. As treatment reduces swelling,you will need to change size. If you have arthritis,zippered garments can help with manipulating thesleeve on or off.

Self-care includes the lymphatic exercises from intensive treatment, but now you may also be ableto add aerobic, resistance and stretching activities(wear a compression garment or bandages for allexercise). Swimming is great for lymphedema. Thewater supports your body and helps prevent injury,while the water pressure provides a gentle decon-gestion. Walking and bike riding are other goodchoices. Some women find yoga helpful. You alsomight enjoy therapeutic movement programs in aclass or at home on a DVD.

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10 BEST BITS OF BEEN-THERE ADVICE FROM WOMEN WITH LYMPHEDEMA

“See a certified lymphedema therapist before surgery or radiation to get baseline measurements and learn about precautions.”

“Realize that you are always at risk for developing lymphedema, even years after your breast cancer treatment.”

“Know the early signs of lymphedema. Many women ignore them, thinking it will go away.”

“Review how to wrap the bandages everytwo to three months. If you haven’t wrappedin a year, it’s hard to remember.”

“You have to be compliant. Once lymphedemadevelops, it’s hard to keep it under controlunless you’re diligent.”

“Get every piece of information on lym-phedema. Talk with someone who has it.”

“Body image-wise, my compression sleeve makes me feel a little sexy, believeit or not! I think it may be the fact that it’s black...like Madonna from the earlyyears. I think it also shows that I’ve beenthrough something and I’m pretty proudI’m still here!”

“Never give up any part of your life. Learnto listen to your body. When somethingstarts to hurt, stop what you’re doing.”

“Join whatever support group you can.You’ll get tips on things the doctors don’ttell us.”

“Treat lymphedema care as a routine youneed to do. Focus on the pleasure in life, if you can, rather than the size of yourarm…You can get beyond it.”

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 causedyour condition (you did not). If you have achanged body image or limits to your activities,you could fear that lymphedema affects yourpersonal life or work. Since lymphedema worsens if not controlled, you might focus anxiously on what could happen next. You may feel sad or depressed.

What’s more, while breast cancer may be wellbehind you, lymphedema presents a daily physicalreminder of it that can feel distressing. If you arewearing compression bandages or a garment, people—even complete strangers—may ask youquestions. Having lymphedema means you may have to struggle again to look and feel normal, this time with a condition that few outsiders haveheard of or understand.

Some women, embarrassed by their swollen arms,hands or torsos, cover up with baggy clothes, stayinside, decline social invitations or avoid intimacy.The visible evidence of lymphedema causes somesingle women to worry about dating, realizing thatthey will have to talk about breast cancer soonerthan they might have wanted to.

Importance of Reaching Out

Not surprisingly, such emotional challenges can loweryour enthusiasm for self-care, which can cause lym-phedema symptoms to return or worsen. Even if youare dedicated, it is hard to stick to a lifetime regimenthat puts most of the treatment burden on you. Toovercome this, talk openly with your lymphedematherapist or other members of your healthcare teamabout what you reasonably can do to manage yourcondition. When you make the choices, you feel moreempowered and committed to treatment.

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YOUR EMOTIONS AND

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For emotional support, create a personal network of friends and family to turn to when you are feelingoverwhelmed. Relieve your stress by talking, journalwriting, blogging or taking a walk. If you are strug-gling with your feelings or think you may be clinicallydepressed, connect with a professional who under-stands breast cancer and the impact of lymphedema.You will find counseling help at cancer centers or bycontacting the Association of Oncology Social Workat (215) 599-6093 or aosw.org or the AmericanPsychosocial Oncology Society at (866) 276-7443 orapos-society.org for a referral.

Many centers and hospitals have lymphedema supportgroups. The National Lymphedema Network lists someat lymphnet.org/patients/supportGroups.htm. Youcan find support and message boards on our Website at lbbc.org and other organizations’ Web sites(see “Resources,” page 34) or by calling our Survivors’Helpline at (888) 753-LBBC (5222). We can matchyou with a woman living with lymphedema.

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I f you have health insurance, check withyour insurer to find out whether yourplan covers lymphedema services and

supplies. Private health plans vary. Medicaidplans differ from state to state, so ask whetheryour state covers lymphedema treatment. TheWomen’s Health and Cancer Rights Act of 1998requires that all group insurance policies coverthe treatment of lymphedema resulting frommastectomy. About half of all states have similar laws which extend to women coveredby other types of policies.

Your coverage may require that you get a prescriptionto receive an evaluation and treatment by a certifiedlymphedema therapist. Insurers may pay for providerswho are physical therapists (PTs) or occupationaltherapists (OTs), but not massage therapists or nurses,unless they are nurse practitioners (NPs). Medicaredoes not cover most nurse-administered lymphedematherapy, bandages, garments or compression devices,but it does cover pumps. A few appeal decisionshave ruled that such supplies are reimbursable as“prosthetic devices.”

You may file an appeal if you are denied coverage.Have your doctor submit a supporting letter statingthat lymphedema treatment is a medical necessityfor you, along with a prescription with the lym-phedema diagnosis code. Include records showingthat your condition improves with therapy and paidinvoices describing supplies and services.

If you are employed, you may be able to pay for lymphedema care with funds from a flexiblespending or health savings account. Regardless ofyour coverage, keep records of all lymphedemaexpenses, because you may be able to take adeduction when you file your federal income taxes.

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PAYING FOR

Lymphedema Care

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Finding Financial Help

If you find it difficult to pay for what you need,check with these groups:

National Lymphedema Network (NLN), Marilyn Westbrook Garment Fund:pays for one set of garments per applicant annually; must be NLN member with demonstratedfinancial need. Call (800) 541-3259 or go to lymphnet.org/patients/westbrookFund.htm.

Linking A.R.M.S.: a program for medically under-served women that provides grants for lymphedemasupplies and other needs, through a partnershipbetween CancerCare and Susan G. Komen for the Cure. Call (800) 813-4673.

Hospitals and cancer centers in your area also mayhave assistance programs.

I f you have lymphedema, it may be hardto accept that this condition is part ofyour life. It is okay to acknowledge that

lymphedema is unpleasant and unfair, especiallyafter you have been through breast cancertreatment. The key is to be able to move pastyour reasonable and normal feelings so you can manage the therapy that will help youmaintain your quality of life.

One thing that may help you is getting answers to all of your questions. By networking with otherwomen who have experienced breast cancer-relatedlymphedema, finding good medical guidance andincorporating some practical adjustments into yourroutine, you will be able to live with an improvedquality of life despite having the condition.

Keep in mind that lymphedema therapy usuallybrings good results, especially if diagnosed andtreated early. Women talk about how they haveincorporated it into their daily lives, using strengthgained from their breast cancer experiences, supportnetworks, faith and even humor to put lymphedemainto perspective as much as possible. Some find thatafter connecting with other women for help, theydecide to volunteer support and advice to others. In time, you may want to do that, too, or campaignfor more public awareness and better insurance coverage for lymphedema care.

When you understand this side effect of breast cancer treatment, you can take the necessary stepsto enhance your health. Getting the information,evaluation and lymphedema therapy you need willput you well on track for managing the conditionand enjoying your life. We hope this guide helps andsupports you. Please let us know what you think.

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MOVING

Forward

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ere is a list of where to go to find outmore. This list is not all inclusive, andmany other groups have resources

that may help you.

Lymphedema Organizations

National Lymphedema Network: informationincluding lists of support groups, therapists and centers, funding for garments, (800) 541-3259, lymphnet.org; for assistance in filing insuranceappeals, contact LymphActivist@aol.com

Lymphatic Research Foundation: information on clinical trials, fundraising for research, (516) 625-9675, lymphaticresearch.org

Lymph Notes: patient education, online forums,lymphnotes.com

Lymphology Association of North America: listof certified therapists, (773) 756-8971, clt-lana.org

Organizations that Have Information about Lymphedema

Living Beyond Breast Cancer: education and support, online message boards, Survivors’ Helpline,(888) 753-LBBC (5222), lbbc.org

Breast Cancer Network of Strength:(formerly Y-ME National Breast Cancer Organization) information, message boards, hotline, (800) 221-2141, networkofstrength.org

Breastcancer.org: education, online discussionboard, breastcancer.org

CancerCare: education and workshops, (800) 813-4673, cancercare.org

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Lymphedema Supplies

Consult your healthcare provider for product recommendations. Manufacturers include:

Short-stretch bandages: BSN-Jobst, (800) 537-1063, www.jobst-usa.com; Hartmann-Conco, (800) 243-2294,us.hartmann.info; KT Medical, (888) 443-3362,ktmedical.com; Lohmann-Raucher, www.lohmann-rauscher.com

Elastic compression garments: BSN-Jobst, (800) 537-1063, www.jobst-usa.com; Juzo,juzousa.com; LympheDIVAs, fashion products, (866) 411-3482, lymphedivas.com; Medi, (800) 633-6334, www.mediusa.com; Sigvaris, sigvaris.com

Other garments: Bellisse, bras for breast or chestlymphedema, (877) 273-1683, bellisse.com; CircAid,non-elastic garments, (800) 247-2243, circaid.com;JoViPak, foam-filled garments, (866) 888-5684,jovipak.com

Lymphedema alert products: G Sleeve, alert garment, (866) 975-3383, g-sleeve.com; Lymph Notes, bracelets, free wallet card, lymphnotes.com/article.php/id/128/bracelet;National Lymphedema Network, bracelet, necklace,lymphnet.org/usefulLinks/NLNStore/alertBracelet.htm

Compression pumps with inflatable garments:Bio Compression, (800) 888-0908,biocompression.com; Flexitouch, pump that simulates manual lymphatic drainage, (866) 435-3948, tactilesystems.com; Lympha Press, (888) 596-7421, lympha-press.com

SHARE: Self-Help for Women with Breast andOvarian Cancer: education and support, New YorkCity programs, national toll-free hotline staffed byEnglish and Spanish speakers, (866) 891-2392,sharecancersupport.org

Sisters Network Inc.: national and chapter programs, support for African-American women,(866) 781-1808, sistersnetworkinc.org

Susan G. Komen for the Cure: grants to localgroups for lymphedema programs and supplies,(877) 465-6636, komen.org

The Wellness Community: support groups and workshops, (888) 793-9355, thewellnesscommunity.org

Young Survival Coalition: support and informationgeared to younger women’s concerns, messageboards, (877) 972-1011, youngsurvival.org

Lymphedema Exercise Programs

The Lebed Method: Focus on Healing:therapeutic movement program with special emphasis on exercises for lymphedema, programs in hospitals and community centers in United States, Canada and elsewhere, (877) 365-6014, lebedmethod.com

Moving On Aerobics: dance exercise for womenaffected by breast cancer, New York City, Oakland, California, and elsewhere, (212) 229-8391, movingonaerobics.org

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Physical Medicine and RehabilitationAndrea L. Cheville, MD, CLT-LANA, Mayo Clinic,Rochester, MN

Physical TherapyJoy Cohn, PT, CLT-LANA, Penn Therapy and Fitness—Good Sheperd Penn Partners, Philadelphia, PAMargaret Rinehart-Ayres, PT, PhD, Thomas JeffersonUniversity Hospital, Jefferson College of HealthProfessions, Philadelphia, PA

Radiation OncologyJennifer R. Bellon, MD, Dana-Farber Cancer Institute,Boston, MA

Surgical OncologyDahlia M. Sataloff, MD, FACS, Pennsylvania Hospital,Philadelphia, PA

CONSUMER ADVISORY COMMITTEE REVIEWERSKathy Fantini, Ambler, PACharlotte Grieselhuber, Hamilton, OHTina Krieger, Rossmoor, CARhonda Nichols, Antioch, TNTia Riggins, Moreno Valley, CATracey Roberts, Charlotte, NCMarisa Sanchez, Huntingdon Beach, CAMary Sommers, San Jose, CAPearl Hiat Weiss, Porter Ranch, CA

CREATIVE DEVELOPMENTLaurie Beck PhotographyMasters Group Design

Living Beyond Breast Cancer’s Understanding seriesis designed for educational and informational pur-poses only, as a resource to individuals affected bybreast cancer. The information provided is general in nature. For answers to specific healthcare questionsor concerns, you should consult your healthcareprovider, as treatment for different people varieswith individual circumstances. The content is notintended in any way to be a substitute for professionalcounseling or medical advice.

© 2008 Living Beyond Breast Cancer

Many thanks to these individuals who volunteered their time and expertise for this guide:

AUTHORRobin Warshaw

LIVING BEYOND BREAST CANCER REVIEWERSLisa BlackElyse S. Caplan, MAAmy GrilloJanine Guglielmino, MAJean A. Sachs, MSS, MLSP

LEAD MEDICAL EDITORDahlia M. Sataloff, MD, FACS

HEALTHCARE PROFESSIONAL ADVISORY COMMITTEE REVIEWERS

AdvocatesIvis Febus-Sampayo, SHARE: Self-Help for Womenwith Breast and Ovarian Cancer, New York, NYRobert Weiss, MS, National Lymphedema Network,Porter Ranch, CA

EpidemiologyKathryn H. Schmitz, PhD, MPH, University ofPennsylvania School of Medicine, Philadelphia, PA

Medical OncologyVirginia F. Borges, MD, University of Colorado HealthScience Center, Denver, CO

Oncology NursingMarcia Beck, APRN, BC, CLT-LANA, Truman MedicalCenters, Kansas City, MOSheila Ridner, PhD, RN, ACNP Vanderbilt UniversitySchool of Nursing, Nashville, TN Evelyn Robles-Rodriguez, RN, MSN, APN-C, CooperCancer Institute, Camden, NJ

Oncology Social WorkSteven Passik, PhD, Memorial Sloan-KetteringCancer Center, New York, NY

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Notes

hen you are ready, we

encourage you to call

our SURVIVORS’ HELPLINE

at (888) 753-LBBC (5222) for

guidance, information and peer

support about lymphedema or any

other breast cancer concern. Our

national, toll-free service is staffed

by trained volunteers affected by

breast cancer. Spanish-speaking

Helpline volunteers are available.

Read about 10 Common Signs of Lymphedema

on the reverse side

354 West LancasterAvenue, Suite 224Haverford, PA 19041(610) 645-4567 phone(610) 645-4573 faxSurvivors’ Helpline:(888) 753-LBBC (5222)

W

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10 COMMON SIGNS OF

LymphedemaTell your healthcare provider ifyou notice any of these symp-toms in your arm, back, chest,breast, hand, fingers, elbow orelsewhere on the side(s) whereyou had surgery with lymphnode removal or radiation:

Heavy or full feeling in arm, hand, chest/breast or other area

Ache, soreness or pain

Pulling sensation

Swelling (may come and go)

Your bra feels tighter orleaves an indentation. A ring, bracelet, watch or shirt-sleeve feels tighter

When you press the skin nearthe treatment site, it leavesan indented spot

Redness from infection or swelling

Skin feels warm or tight

Numbness or tingling (beyondwhat you experienced post-surgery)

Decreasing flexibility at the shoulder, elbow, wrist or fingers

354 West Lancaster Avenue, Suite 224Haverford, PA 19041(610) 645-4567 phone(610) 645-4573 fax

Survivors’ Helpline: (888) 753-LBBC (5222)

Supported by a grant from