living beyond breast cancer insight 2013 spring

7/30/2019 Living Beyond Breast Cancer Insight 2013 Spring

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Five ears has been the standard time length r taking

tamxien. The dail pill is given t wmen diagnsed

with estrgen receptr-psitive breast cancer

t keep the cancer rm returning and t

imprve survival.

Lauren takes tamxien as adjuvant

(ater surger and chemtherap) treatment

r stage II, ER psitive, lmph nde-psitive

breast cancer. Diagnsed when she was 32,

Lauren has suered dicult side eects,

including ht fashes.

Ive been cunting dwn the das, shesas. Im s lking rward t seeing hw I eel

when I g it.

She als has been thinking abut having anther

childsmething she cant d sael while taking tamxien

because it culd harm her etus.

Then, in December, she heard news reprts abut a large

internatinal stud, called ATLAS (Adjuvant Tamxien,

Lnger Against Shrter), presented at the San Antni

Breast Cancer Smpsium. Researchers und

that taking tamxien r 10 ears increased

the prven benets ver the standard

ve ears treatment. The ndingsculd lead t extending the length

tamxien therap.

I was hrried, Lauren recalls. I said,

This is the wrst news ever! I realie the

value the stud, but its nt a decisin I

want t have t make.

Tin Grishm, Carthage, Tenn., will als

reach the end her ve ears n tamxien

in 2014. Ater treatment r a large ER psitive tumr with n

nde invlvement, Tina started tamxien and experienced

night sweats, jint pain and vaginal bleeding.

It tk m bd a little while t adjust

t it, she sas, but then the side eect

eased. Nw 48, she made liestle changes

that helped, including lsing weight, start

ing t run and taking a less pressured jb

Hw wuld Tina eel i her dctr

advised she sta n tamxien r anther

ve ears? Id be perectl ne with it,

she sas. I cnsider it m securit blanket.

Thinking About TamoxienWmen taking tamxien ten have a lve it/hate it

endure it relatinship with the medicine as the balance

demnstrated benets against ptential side eects, impact

n amil planning and the lng treatment time required

Sme wmen experience n side eects. Fr thers,

prblems range rm anning t uncmrtable t intl-

erable. A ver small number wmen have the rare, but

mst severe, side eects bld clts r endmetrial cancer

Tamxien wrks b blcking estrgen receptrs n

breast cancer cells. This keeps estrgen rm ueling cancer

grwth. It als decreases the risk a rst breast cancer in

wmen at high risk develping the disease because

genetics r amil histr. Fr earl-stage breast cancer, it

is given primaril t premenpausal and perimenpausa

wmen. Pstmenpausal wmen nw tpicall receive

medicines called aromatase inhibitors, r AIs.

As wrd spreads abut the ATLAS research n taking

tamxien r 10 ears instead ve, man wmen are

Tamoxien: New Findings Stir Questionson Treatment LengthBy RoBIN WARSHAW, FoR LBBC

urn Mgliro, Rckawa, N.J., plans t have a part in Nvember 2014 when her ve-ear

treatment with the hrmnal therap tamxien ends.

Contin on pg 10

LAURENM

AGLIARo

NEWS INFoRMATIoN EDUCATIoNAL RESoURCES LEARN MoRE oNLINE AT LBBC.ORG

Insight

SPRING 2013

LMedICaL

INfORMaTION

TINAGRISHAM


2/12


3/12

Supporting Loved Ones, Living

Lie: Vernell Kellys StoryBy JoSH FERNANDEz

s a mm, wie, riend, hspital scheduling assistant, churchger

and leader a lcal Girl Scut trp, vrnll Kll, 51, tendedt put thers ahead hersel.AEven when she learned she had stage I breast cancer in spring

2010, Vernells rst cncern was disclsing her diagnsis t

her amil. Ater she tld her husband, Cre, Vernell tld

her daughter, Criss, wh had just nished her midterms

at the Universit Arkansas. Althugh Carissa didnt handle

the news well at rst, n the mrning

her lumpectm Vernell gt a pht

Carissa standing in a Wal-Mart hlding a

buquet fwers.

She said she culdnt ard t buthem r me, s she thught the pht

wuld give me a laugh, Vernell sas.

And it did.

Ater discvering the lump in her

breast, Vernell began t seek and accept

mre supprt r hersel. She turned t

her clleagues at the MRI center the

Baptist Health Medical CenterLittle

Rck, telling ne the radilgists

what she elt. He advised her t get a

mammgram and an ultrasund. Later

that week, Vernell learned she had

breast cancer.

Having wrked with Vernell r 15 ears, her dctr cl-

leagues tk the news her diagnsis hard. The ered

pressinal input as much as the culd n treatment,

llw-up tests and ther aspects care.

T this da, the still check n me t make sure Im

still getting scans and even er t lk at them r me,

Vernell sas.

Vernell als reached ut t her clse riend and hair

stlist, vr Jffrson. Vera was diagnsed with breast cancer

almst a ear bere Vernell, s Vernell instantl elt cm-

rtable reling n Vera r emtinal supprt. The talked

abut everthing rm lved nes reactins t diagnsis

t cncerns abut treatment.

She was the rst persn I reached ut t, because

althugh I had all the inrmatin, she was able t talk t

me and relate t me, Vernell recalls.

Vernells 90-ear-ld grandmther was als a pillar

supprt. Because she had never seen a dctr nr

taken prescriptin medicine, she was trubled when

she learned that Vernell had t underg surger,

chemtherap and radiatin. But when she saw that

Vernell was cndent in the treatment

plan, her apprehensin subsided, and she

shwed nthing but supprt.

She was just the mst cmrting verall, Vernell sas.

She asked me, Have u praed abut it? And I said, yes

maam. Then she said, oK, I have, t.

And we mved n t a dierent cnver-

satin tpic.

Vernells cncern r thers prmpt-

ed her t be mre active in makingArican-American wmen aware their

breast cancer risk. She was shcked t

learn that abut 27,000 Arican-Ameri-

can wmen were diagnsed with breast

cancer in 2012, and that Arican-American

wmen have a lwer ve-ear survival

rate r the disease77.5 percent, versus

88.8 percent r white wmen.

Because where she wrks, Vernell

thught she was prett much aware

everthing abut breast cancer. Never did

I knw hw high the numbers were r

Arican-American wmen, she sas.

In additin t participating in a 2010 cus grup and

pht sht r Living Bend Breast Cancers ree bklet,

Getting Connected: Arican-Americans Living Beyond Breast

Cancer, Vernell has encuraged her amil and riends t

take screenings seriusl, nt t hesitate i the experience

health issues and t seek treatment and guidance i the are

diagnsed with breast cancer. She creates a team each ear

r the Susan G. Kmen 3-Da, and she listens t and supprts

Arican-American wmen newl diagnsed with breast cancer.

When shes nt wrking, ging t church r spending

time with her husband and daughter, Vernell travels. She

recentl few t Atlanta t visit with amil and chaperned

a trip t Washingtn, D.C., r her Girl Scut trp. She will

return t D.C. this summer t celebrate the 100th birthda

her cllege srrit, Delta Sigma Theta.

Breast cancer put things in perspective, Vernell sas.

I learned t d things that I want t d, things like this

weeklng celebratin. M amil, Gd and wrk are still high

pririties, but s is m verall health. I thats gd, [then] I

can deal with anthing else that cmes alng.

Vernells concernor others prompted

her to be more

active in making

Arican-American

women aware o their

breast cancer risk.


4/12

An MBA graduate nce n the ast trackin the crprate wrld, ver the next

24 ears Barbara quit her jb, gt

divrced, became a parent, wrte

a bk, remarried, divrced, and

und a new rmantic partner bere

starting Sexy After Cancer, an nline

resurce named ater her bk, which

cuses n rekindling intimac and

sexualit ater cancer.

I was interested in making a lt mne,

and then m pririties reall changed. All a sudden

it was mre abut living the lie I wanted t live,sas the nw 60-ear-ld sex educatr rm San

Francisc, Cali.

Barbara is amng the man wmen wh

have experienced signicant changes as the g

thrugh the prcess living lng-term with,

thrugh and bend cancer. But hw each wman

deals with these transitins and hw she

views lng-term survivrship ma var.

Defning Long-TermSurvivorshipFr Barbara, lng-term survivrship

means living the lie she wants and

nding persnal and pressinal

balance. Emtinal and mental healing

were integral t her transitin int lie

bend cancer, because she did nt want t

live her lie eeling like a victim, she sas.

Just the language we use arund cancer disagrees

with me, calling [thse diagnsed with] it victims and

survivrs, Barbara sas. Thats nt t diminish that it

reall is a battle r man, man peple and [that] nt

everbd wins that battle, but that als can becme

a sel-ullling prphec.Its been seven ears since am J. Korn, 48, Lng

Island, N.y., was diagnsed with stage III breast cancer.

Because Am still receives the armatase inhibitr letrzle

(Femara), she still eels the saet net therap.

I hate t sund clich, but u just live each da at a

time and make the mst it, Am sas.

T dn Winstin, 65, Prtland, Maine, lng-term

survivrship means appreciating lie ull, but als eeling

trepidatin whenever cnrnting an illness r awaiting

results annual tests. She adds that it als means beingavailable t help thers and shiting pririties mre readil

Even i I hadnt had cancer, b this pint in m lie Id

prbabl be thinking, Ww, I dnt have that much time

t get in all that I want t d. Cancer mved that eeling

ahead b a decade r mre, sas Deena, wh was diagnsed

nine ears ag.

Bts Stot, 59, als Prtland, was diagnsed with

breast cancer in 1997. T her, lng-term survivrship is abut

refectin, lking at the psitives in lie and accepting

her limits.

I learn t live with nt knwing and nt

being in cntrl everthing, becauseure nt, she sas.

The Impact o Long-Term SurvivorshipRebecc Crne-Ok, Phd, RN, CNS

aOCN, a clinical nurse specialist and nurse

navigatr at Lng Beach Memrial Medical

Center in Lng Beach, Cali., sas its imprtant

t develp a llw-up care plan with a healthcare

prvider bere the end active treatment.

A survivorship care plan is a written reprt

including schedules r rutine check-ups and

exams, discussins n reducing risk recurrence

and ther health cnditins, cgnitive and emtina

cncerns and lng-term side eects.

The end treatment can be a dicult time, Dr. Crane-

okada sas. Instead experiencing j, man wmen ee

anxius abut being let n their wn.

Bets dealt with a number medical issues ater she

nished treatment. In 2004, she had a tissue fap surger

r breast recnstructin where tissue was taken rm her

bell. Fllwing the prcedure, she nticed a bulge n her

side. Ater reaching ut t her healthcare prviders, an

ultrasund revealed she had a tumr n her kidne, whichtriggered ear assciated with an uncle wh died rm

metastatic breast cancer.

I thught, Ww, Im just like Uncle JulianI just had

breast cancer and nw Im ging t have a bunch tumrs,

and then Im ging t die, she recalls.

Ater tests revealed the tumr was benign, Bets was

relieved. Because she has a amil histr breast cancer

she is underging genetic cunseling and testing r the

BRCA1 and BRCA2 genes.

Long-Term Survivorship: What It Means to MeBy JoSH FERNANDEz

ter nishing radiatin therap r breast cancer in 1989, the then 37-ear-ld Brbr Mss

transrmed her lie.

quaLITyOfLIfe

A

BARBARAMUSSER

4

LEARNMoREATLBBC.ORG

AMyKoREEN

BET

SySToUT


5/12

Am, wh wrks r an insurance cmpan, is cncerned

abut jb securit. Her empler was accmmdating,

allwing her t wrk n-and- while she underwent

chemtherap, but even nw she nds it dicult t d ever

task required her. Regular dctrs appintments, dail

ht fashes rm hrmnal therap and ther lng-term

side eects make wrk hard t manage.

I am still wrking the same jb and have the same

health insurance, but maintaining bth is a cncern r me.

What wuld I d withut m healthinsurance? M health insurance pas

r everthing, Am adds.

The hardest realit Am aced was

learning that her treatment might have

aected her ertilit. Whenever I saw

wmen walking arund with babies, I

alwas elt like I didnt knw i that was

ging t happen r me, Am sas.

She still hpes t have a child ne da

and is cnsidering adptin.

Thugh she t had ertilit

cncerns, Barbara was able t havea bab with her secnd husband. Her

daughter will be 20 this ear.

Tell ur nclgist i u are

cncerned abut ertilit. yu can

als meet with a reprductive

endcrinlgist t discuss ur amil planning ptins.

Dr. Crane-okada sas changes in sexual intimac can be

dicult r wmen during and ater treatment.

Patients taking armatase inhibitrs r an

estrgen-blcking agent ten experience

prblems like ht lashes and vaginal

drness. It is imprtant that wmen vice

such cncerns s that pssible slutins can

be ered.

Ater her active treatment was cmplete,

Barbara attended a wrkshp n intimac

and sexualit that invlved shwing attendees

her scars. She didnt have recnstructive surger

because it wasnt cvered b insurance at the time.

I std there shaking like a lea, saing I elt like

damaged gds, and I knew I wasnt beautiul. Peple

standing 10 eet awa literall culdnt see the scar and

said, What scar are u talking abut? A lt peple

came up t me and said it lked beautiul, she said.

others attending the wrkshp wh had been diagnsed

with breast cancer shared similar cncerns.

The tld me what I had dne was ver healing r

them. T be as pen as I was als was healing r me,

Barbara recalls.

Deena is passinatel and primaril cncerned with the

cgnitive eects chemtherap.

The memr prblems I am experiencing and dicult

making decisins shuldnt be this bad at m agem mind

was alwas sharp [bere treatment], she sas.

Deena is participating in a natinwide clinical trial

lking at chemobrain, r prblems with thinking and

memr ater treatment. She plans n getting urther tests,

jining r creating supprt grups and using techniques

like meditatin t help her t live in the mment, cntrl

anxiet and deal with cnusin.

As an active participant in Prtlands petr, writing

and plitical cmmunities, Deena has spken penl

abut her cgnitive impairment, hping r patience and

cmpassin s she can remain invlvedand eective in these cmmunities.

But recentl shes wndered whether

sel-disclsure might cause a lss

respect r her and dubts abut her

capacit t ull participate.

Managing Fearo RecurrenceCr anrs, Md, a medical nclgist

and researcher at the Universit Nrth

Carlina Lineberger CmprehensiveCancer Center, sas althugh mst

wmen handle ear recurrence

ver well, emtins can be heightened

arund the time surveillance tests.

Its imprtant r patients t

recgnize that thse eelings recurrence prbabl are

there, and the are just nt tapped int. Thats wh its

imprtant t nd strategies and methds t help

deal with the eelings recurrence as ppsed

t just suppressing them, Dr. Anders sas.

When Am has these eelings, talking in

a supprt grup helps.yu cant spend ur whle da wrring,

s I dnt, Am sas.

Bets agrees. I the cancer cmes back r

it appears in the ther breast, Ill deal with

it then, she sas.

Meditatin and embracing psitivit

helped Deena keep thughts recurrence at ba.

Ding is a part living, Deena sas. That was a big

piece r me t keep in mind while acing the ears and

pssibilities recurrence head n.

Barbara sas her ear suraced an time she elt ill during

the rst tw ears ater treatment. B the third ear, she

began t live her lie withut letting ear dminate her.

Ever time I had a smptm like a sre thrat I thught,

oh, Gd, the cancer is back. Ive had a ew scares, but I

have been health, she sas. Lie is nt a dress rehearsal,

s I d m best t live m lie ull. And i smething ever

des happen, Ill deal.

The end o

treatment can be

a difcult time,

Dr. Crane-Okada

says. Instead o

experiencing joy,

many women eel

anxious about being

let on their own.

DEENAW

EINSTEIN


6/12

Enhancing Health andQuality o LieTheres still time t register r ur annl

Confrnc for Womn Liing with MtstticBrst Cncr, t be held April 13 14 at the

Lews Philadelphia Htel. Get inrmatin and

practical resurces t help u live well with stage

IV breast cancer during three plenar sessins and mre

than 15 wrkshps. Walk-ins are welcme!

opening plenar speaker anrw Simn, Md, Memrial

Slan-Kettering Cancer Center, will discuss advances in metastatic

breast cancer care.Wn G. Lichtnthl, Phd, als Memrial

Slan-Kettering Cancer Center, will cver hw t mve rward

with a stage IV diagnsis. Lin n Bob Cre, unders

The Tutu Prject, will talk abut Lindas experience living with

metastatic disease, hw the cpe and the undraiser thecreated t supprt thers with breast cancer.

Visit lbbc.rg/Events/Metastatic-Breast-Cancer-Cnerence

r mre inrmatin and registratin. I u cant attend,

pdcasts will be available ater the event n lbbc.rg.

Annual Conerence ExpandsThis ears annual all cnerence,Nws yo Cn

use: Brest Cncer uptes or Living Well,

will expand t tw das. Get updates rm

expert speakers while cnnecting with ther

wmen and caregivers oct. 26 27 at the

DubleTree b Hiltn Htel Philadelphia

Center Cit.

Sihrth Mkhrj, Md, Phd, will

be a kente speaker at the cnerence. Dr.

Mukherjee is a leading cancer phsician and

researcher, assistant pressr medicine

at Clumbia Universit, a cancer phsician

at the CU/NyU Presbterian Hspital and

authr the bkThe Emperor Of All

Maladies: A Biography O Cancer.

Visit lbbc.rg/Events/Annual-Fall-Cnerence

sn r mre inrmatin.

Extended Helpline HoursHave questins, need t talk r just want smene t listen?

Call ur Survivrs Helpline t speak with smene wh has

been there.

A trained vlunteer aected b breast cancer answers

calls Mnda thrugh Frida, 9 a.m. t 5 p.m. ET. At an

ther time, leave a message r submit a request using ur

nline rm and a vlunteer will re-

spnd within 24 hurs. The service

is ree and cndential; Spanish-

language speakers are available.

Call (888) 753-LBBC (5222).

Triple-Negative ResearchIn Februar, LBBC began an in-depth assessment what

wmen diagnsed with triple-negative breast cancer (TNBC)

want, what is alread available and what shuld be created

t give mre access t inrmatin and resurces.

In earl 2014, we will share results and recmmendatins

with supprt rganizatins, healthcare prviders and wmen

with TNBC. During phase I, LBBC interviewed prviders and

wmen with TNBC. During phase II, ve cus grups wilbe held in dierent U.S. cities t learn abut the phsical

and pschscial cncerns diagnsis, ending treatment

and living with metastatic TNBC. Tw grups will be held at

ur annl Conrnc or Womn Liing with Mtsttic

Brst Cncr April 13 14 in Philadelphia.

An executive cmmittee healthcare prviders, wmen

with TNBC and members the Tripl Ngti Brst Cncr

fontion will advise LBBC thrughut the prject.

Interested in participating in a cus grup? Emai

[email protected].

New PublicationsWe are prud t annunce additins t ur

educatinal brchure series.

In Guide to Understanding Intimacy and

Sexuality, get an in-depth lk at hw breast

cancer diagnsis and treatment can impact

ur sexual lie. our Guide to Understanding

Hormonal Therapydiscusses hw anti-estrgen

therapies wrk t decrease ur risk r recur-

rence, as well as hw t manage side eects.

Metastatic Breast Cancer Series: Guide or the Newly Diag-

nosed,created with theMtsttic Brst Cncr Ntworkers an intrductin t what u need t knw in the rst

ew mnths llwing a diagnsis.

Dwnlad PDFs r rder print cpies at lbbc.rg.

Programs or the Newly DiagnosedDrp in n Scon Tss: Monthl Wbinr or th

Nwl dignost learn breast cancer basics rm a trusted

Resources Reach Further as Programs GrowBy NICoLE KATzE, MA

6

NeWSaNd

edu

CaTIONuPdaTe

LEARNMoREATLBBC.ORG

Nws n ection pt contin on pg 7


7/12

medical expert, and interact with

speakers b vicing r submitting

ur questins. Webinars are held

ever secnd Tuesda the mnth rm nn t 1 p.m.

ET and are accessible b phne r cmputer.

The ree prgrams eature a 30-minute, interview-stle

cnversatin between an LBBC mderatr and expert

guest speaker n tpics related t a breast cancer diagnsis,

llwed b a questin-and-answer sessin.

Visit lbbc.rg/Events/Newl-Diagnsed-Webinar r mreinrmatin.

Tell Us What You Think!We want ur eedback n Insight! Take ur nline

surve at survemnke.cm/s/2013LBBC t help us imprve

ur prgrams and services. Enter t win a $25 git card r

ur participatin (U.S. residents nl).

C4YW in SeattleIn Februar LBBC and yong Srvivl

Colition welcmed nearl 600 wmen,

caregivers and medical pressinals t

the Hatt Regenc Bellevue n Seattles

Eastside r C4yW, the Annual Cnerence

r yung Wmen Aected b Breast Cancer.

In the pening plenar, Juli R. Grlow, Md,

the Universit Washingtn Schl Medicine,

discussed hw research impacts breast cancer care; the clsing

eatured Nnc Burmr andConni engl, Phd, Breast

Cancer Fund, n prtecting ur amil rm txins and

chemicals. Ssn Mtsko Shingw, Asian and PacicIslander Natinal Cancer Survivrs Netwrk,cvered hw t

turn experience and passin int eective advcac.

Wrkshps included clinical trials, emplment, sex and

intimac, and amil and genetic risk, amng thers.

Visit lbbc.rg and c4w.rg r pdcasts and transcripts

kente presentatins and wrkshps, and plan t jin us

next ear! C4yW will be held Feb. 2123, 2014, in orland,

Fla. Check c4w.rg this winter r mre inrmatin.

LBBC PresentsLBBC sta recentl attended the americn Pschosocil

Oncolog Socit annual cnerence Feb. 1416. Kti Crm

Hnr, ur utreach crdinatr, gave a pster presentatin

n ur culturall sensitive publicatin Getting Connected:African-Americans Living Beyond Breast Cancer.arin ah-

lm Hnson, MPH, CHeS, manager ur yung Wmens

Initiative, presented ndings ur yWI needs assessment

(see belw r results).

LBBC will als give a presentatin n Getting Connectedat

the assocition o Oncolog Socil Work cnerence in June.

New to the BoardLBBC is pleased t welcme seven new members t ur

natinal bard directrs:

annemrie armstrong,managing directr at Saatchi &Saatchi Science

Lurn Boln,pharmaceutical strategic marketing cnsultantand partner and practice leader, empler and calitin

service at Health Industries Research

Philip M. Brown,managing directr nance and ad-ministratin at Franklin Square Capital Partners

Moir Roon,directr strategic investment at MissinFirst Husing Develpment Crpratin

To L. Shrmn, CIMa,prtli management and amilwealth directr at Sherman Sbin Grup at Mrgan Stanle

Rmon Swb, Md,directr nclg clinical researchand develpment at GlaxSmithKline

Mrgrt Zccotti, Me

Man thanks t ur utging bard members: Jnnir

L.a. armstrong, Md, Lis Br, Robin Bener Stevens,

dnielle Hlstrom, Colleen Krk, Sn Lipstein and

Brbr Lopz.

yWi survey

results

our yung Wmens Initiative surve

asked wmen diagnsed with breast

cancer under age 45 hw and where

the access supprt and inrmatin,

hw the want t receive it and what

tpics interest them. Heres a glance at

what the said:

70 percent sa its imprtant t have

breast cancer inrmatin specic t

their needs as ung wmen. onl

21 percent und it eas r ver eas

t nd it.

Althugh 60 percent said it was verimprtant t have age-specic em-

tinal supprt, 40 percent had a hard

time nding services that met their

needs.

yunger wmen want dierent in-

rmatin and want t access that

inrmatin in dierent was than

their lder peers. Wmen diagnsed

bere age 30 were mre interested

in learning abut sex and intimac

cncerns than lder age grups and

were mre likel t want inrmatinr emtinal supprt nline.

Limited resurces exist r ung

wmen n lng-term side eects

breast cancer and ther survivrship

cncerns. Even ewer prgrams exist

r select grups ung wmen,

including wmen clr, wmen

living with metastatic breast cancer

and LGBTQ wmen.

Phts: Bran Mead, Laurie Beck Phtgraph, Epaul Julien Phtgraph


8/12

In ur rst ear wrking tgether, Everthing But

Water dnated a prtin prceeds rm

the sale a necklace that ered a secret

message, LoVE, t spell supprt r wmen

aected b breast cancer.

T celebrate its secnd ear partnering

with LBBC and t raise unds and awareness

r ur educatin and supprt resurces,

Everthing But Water dnated 25 percent

prceeds rm its Deux Lux r Everthing But Water

smartphne wristlet. The wristlet was designed t carr

a wmans essentials, with cmpartments t accmmdate a

smartphne, credit cards, bills, cins and kes.

We recentl caught up with Shil arnol, chie executive

cer and president Everthing But Water, t talk abut

the partnership.

How did you learn about Living Beyond Breast Cancer?

Ms. arnol:When we decided t cntribute t breast cancer

erts, we did an extensive search which included asking

r reerrals rm thers invlved, lking at ratings, etc.We und ut abut LBBC thrugh smene else invlved

with the rganiatin, and then ater reading abut it and

talking t [LBBCs CEo] Jean Sachs, we were sld n LBBCs

missin and passin r the cause.

What about LBBC led you to partner with us?

Ms. arnol: We are a business cmprised primaril emale

emplees, selling t nl emale custmers. Da in and da

ut, ur sales assciates strive t make wmen eel beautiul

and cndent. Unlike man ther rganizatins that are

cused (imprtantl) n research, we like that LBBC is cusedn inrmatin and supprtthings that are s desperatel

needed. This missin als eels mre clsel aligned with ur

wn business.

How would you describe your partnership with LBBC, and

how does it meet your companys philanthropic goals?

Ms. arnol:our gal is t bth raise mne as well as aware-

ness r LBBC and its wrk. We have als helped b dnating

a git certicate and gdie bag stuers t LBBCs annual

gala, The Butterf Ball. The past tw ears weve

develped a prduct specicall r the purpse

dnating prceeds t LBBC. We place the

prduct in all 70 ur stres and eature it

at the cash register. Last ear, we als eatured

it in ur windws. The sales assciates are

all well-inrmed abut the ert and LBBC

as an rganizatin. The have a lt un

and are cmmitted t spreading the message

t custmers and selling the prduct.

Can you give us the scoop on what may be in store for your

2013 October Breast Cancer Awareness Month promotion?

Ms. arnol: We are wrking n itits t sn t tell, but we

have a lt un develping prducts t supprt the ert

We are lking rward t guring ut whats next!

For more information on Everything But Water and other

corporate partners in our Shop to Support program, visit.lbbc

org/Donate/Shop-to-Support. To purchase the wristlet, visit

everythingbutwater.com or a store location near you.

GIvING

uPdaTe Shop to Support: An Interview

with Everything But WaterBy KEVIN GIANoTTo

n octber 2011, LBBC began a partnership with retailer erthing Bt Wtr. The cmpans

70 stres cast t cast and nline at everthingbutwater.cm eature an extensive cllectin designer swimwear, resrt wear and accessries.

8

LEARNMoREATLBBC.ORG

I

Planned giving and your legaCy

yu can help LBBC cntinue t prvide prgrams r

ree r at little cst b making a planned git. We er

pprtunities that can be tailred t meet ur needs.

one the easiest was t make a planned git is t

include LBBC in ur will r revcable living trust. It is nt

necessar t rewrite ur entire will t make a bequest t

LBBC. yu can simpl instruct ur attrne t prepare a

codicil, an amendment, t ur current will r living trust.

one sentence in ur will r trust ensures that uturegeneratins will benet rm LBBCs services and prgrams

Fr example:

I give t Living Bend Breast Cancer, a nnprt

crpratin rganied and perating under the laws

the Cmmnwealth Pennslvania, the sum $_______

(r ___ percent the rest, residue and remainder m

estate) r its general purpse as an unrestricted git.

Fr mre inrmatin, cntact Beck Mills at mbmills@

lbbc.rg r (484) 708-1806.


9/12

Thank you to our October 2012 December 2012 contributors:$100,000+ Cline Cellars

Eli Lill and CmpanEverthing But WaterGreenberg Traurig, LLPThe Kapp Famil FundatinCnthia and Richard Leaman

The Lipstein FamilRnnie and Rbert SmersUnited Airlines FundatinWe-Care.cmLauren Wlnis and

Je zebrwit

$5,000-$9,999Heidi and James BudreauKell and David CasperSand and Steve CenDARA BiSciences, Inc.Fashin BugDnna and Barr FeinbergGenmic Health Inc.MerckAndi and Abe MrrisPer Inc.Mira Rabin and

Thmas I. Whitman

Ratner CmpaniesTillsnburg Cmpan (USA),

Inc.Margaret and And zucctti

$2,500-$4,999Wend and Bruce ArmnThe Barra Fundatin, Inc.Gwen and Dennis BianchiLisa and Patrick BridgetteLiane and Philip BrwneCancer Treatment Centers

America at EasternReginal Medical Center

Dnna and Frank ClacCntinental Develpers LLCDiplmat Specialt LiaisnDlnger-McMahn

FundatinErin and David DugerEden Charitable FundatinRsln and Charles EpsteinMark FischbachMar Gregg and Jhn M.

Ran

Independence Blue Crss

Susan and Lenard KlehrKimberl A. Kubek and

William KirkpatrickStephanie and Richard

LawrenceShell Liss and Jn

WeiswasserLi and Stephen RanesRa Glbal CrpratinRevzilla MtrsprtsNicle and James RbinsnRse Medical CenterSkirt in Brn Mawr, Pa., and

Stne Harbr, N.J.Emplees StmartTll Brthers, Inc.Emplees Tll Brthers,

Inc.Tr Burch LLCValle Green BankVillanva Universits

Haunts r HpeCarle and Ja WeitmanJane and Stanle zlt

Save the Date!Help raise unds and awareness at yog on th Stps, LBBCs

signature educatin and undraising event. The heart the

event is a ne-hur ga class designed r all skill levels and

bd tpes led b Jennier Schelter, Mfa. Ater the class,

participants and supprters can enj rereshments and brwse

a Health Living Exp eaturing health and nutritin experts,

event spnsrs, ga and tness studis, vendrs, and inr-

matin abut lcal area nnprts and service rganizatins.

The purpse yga n the Steps is t educate cmmunities

abut health living and qualit--lie issues while creat-

ing awareness and raising unds r LBBCs educatin and

supprt resurces.

May 19, 2013 ............... yga n the Steps: Philadelphia

JuNe 13, 2013............... yga n the Steps: Washingtn, D.C.

JuLy 28, 2013 ............... yga n the Steps: Kansas Cit, M.

SePT. 15, 2013 ............... yga n the Steps: Denver

Register r an event near u and watch vides pastevents at the new ganthesteps.rg.

Pht:LaurieBeckPhtgraphy

The Jhn C. and Chara C.Haas Trust

1 (rm let) Jackie Rth, Debra Smers Cpit, MD, Tesha Lve

and Stephanie Lawrence were hnred at ur annual gala,

The Butterf Ball, n Nv. 10, 2012. Jackie, Tesha and

Stephanie were recipients LBBCs Ging Bend Award.

Dr. Cpit received LBBCs highest hnr when she was pre-

sented with The Funders Award.

2 (rm let) The 2012 Butterf Ball Funders Award recipientDebra Smers Cpit, MD, and Dnna Nce, brand president

the events presenting spnsr, White Huse | Black Market.

$50,000-$99,999Custmers Chics FASIredale Mineral Csmetics

Ltd.

$25,000-$49,999AnnmusAstrazenecaEisai Inc.Jakes and Cpers Wine Bar25th Anniversar Celebratin/

Lisa Messer Cper andBruce Cper

Nvartis onclg

$20,000-$24,999Bstn PrperKenilwrth Creatins Inc.Mriad Genetic Labratries,

Inc.Sma Intimates

$10,000-$19,99916th Annual Paddle

Tennis Rall

Amgen


10/12


11/12

earl r never begin r tw cmmn reasns: side eects

and wanting t becme pregnant.

While side eects are Laurens main cncern, bth reasns

are infuencing her t nt want anther ve ears. She hpes her

side eects will end when she stps the medicine. I I sta n

anther ve ears, Ill be 43, and with chem and m advanced

age itll be almst impssible t get pregnant, she sas.

Crl Zmblli, 48, West Chester, Pa., has had ht

fashes, md swings, dr skin, weight gain and insm-

nia since starting tamxien r stage II, nde-negative,ER psitive breast cancer.

I might have a hard time taking it r 10 ears,

but i the tld me I had t, I prbabl wuld,

she sas. Whats the alternative? I dnt want

a recurrence.

Chrl Grnr heard wmen talk abut

side eects in her supprt grup. I was a

little scared t start it, hearing sme the

stries, she sas.

Diagnsed with stage IIA, nde-negative,

ER psitive breast cancer, Cherl has nw been

n tamxien r ur earsincluding whileserving in Aghanistan as a lieutenant clnel in

the U.S. Air Frce. She develped a benign varian cst but

n ther side eects. Taking tamxien wasnt as bad as I

thught it wuld be, she sas.

But extending treatment culd aect her pressinall.

In the militar, as lng as ure seeing an nclgist, it limits

pprtunities verseas, she explains.

Cherl describes hersel, at 40, as at a pint where I want

t be dne with it t enj activities with her tw ung

children and have n militar dut limitatins.

She plans n talking with her nclgist

and pssibl getting a secnd pininabut whether t cntinue bend

ve ears.

At age 28, Mg Bzl is

n tamxien and wants a amil in

the uture. Recentl diagnsed with

stage I, nde-negative, ER psitive

disease, her dctr tld her she shuld

prbabl cntinue tamxien r mre

than ve ears due t her age. The dctr

said Meg culd take a break ater ve ears, have a bab, then

resume tamxien. Im grateul t have smething thats

prett tried-and-true, she sas.

Wmen n AIs als wnder whether ATLAS results mean

the shuld sta n treatment lnger. Mrgi Willims, 64,

Redding, Cali., has jint and hip pain and u thinking

n AIs r stage I, nde-negative, ER psitive breast cancer.

Fr nw, she is llwing her dctrs urging that she cntinue

but, due t nging side eects, Margie is nt certain that she

will cmplete an additinal ve ears.

onclgists have a hard time talking abut side eects,

she sas. The dnt want t discurage u rm taking a

drug that culd be lie-saving.

To Start Again Or Not?Taking a pill ever da r ears can be tugh. It ma be a

reminder breast cancer r prlng unwelcme eects. Meg,

n tamxien nl a ew mnths, has truble remembering

t take it dail.

Jenee Bobbor, Hustn, tk it dili-

gentl r ve ears. Diagnsed in 2003 with

stage IIIC infammatr breast cancer with

psitive lmph ndes, she was 32, tested

psitive r the BRCA2 gene mutatin and

had a amil breast cancer histr. When

her tamxien therap was ending, Jenee

read abut ATLAS, then in prgress. She

cnvinced her dctr t let her cntinue. That

lasted 2 1/2 ears.

Abut 18 mnths ater she stpped, the ATLAS

ndings were annunced. Jenee asked t start

again.

I have been cancer-ree since cmpleting

treatment, and I give a lt that credit t tamx-

ien, she sas.

Her dctr thught it wuld prvide nl a tin bit

imprvement, but agreed. Jenee is back n tamxien.

Accrding t Dr. Gralw, starting tamxien again ater

a time gap shuld nt create a prblem. She sees it as ap-

prpriate mstl r wmen with higher risk recurrence.

Michl Rumfol, San Francisc, cmpleted ve

ears tamxien ater being diagnsed with

stage I, grade 3, ER psitive breast cancer.

She has been tamxien r three ears.

At 38, she wuld like t have a bab in the

near uture.

I didnt hate tamxien, but being it,

I like m bd being health, she sas. Imals the tpe patient t d anthing t nt

have [breast cancer] happen again.

Hearing abut ATLAS thrws u back int that

wndering. Ever decisin u make weighs n u, sas

Michele. Ultimatel, what is the decisin that is ging t make

me eel cmrtable and nt eel wrried r regretul?

A lt depends upn hw much value each wman places

n a treatment, Dr. yee sas. Attitudes var.

Dr. yee is inclined nt t extend treatment r wmen

with smaller tumrs r at less risk recurrence, r r thse

wh dnt have cancer in their lmph ndes.

Sme thse wmen are uncmrtable with that, hesas. ATLAS allws us t have that discussin.

Talk with ur dctr abut side eects, amil planning

and ther cncerns u ma have. Reviewing the statistics with

ur dctr can help u understand the value cntinuing

treatment and make an inrmed decisin based n ur

cmrt level.

For more details on the study, visit lbbc.org/

Understanding-Breast-Cancer/Breast-Cancer-News/

Taking-Tamoxifen-for-10-Years-Lowers-Recurrence-

and-Mortality.

JENE

EBoBBoRA

MICHELERUMFoLA

MEGBEAzLEy

C

HERyLGARNER


12/12

NEWS INFoRMATIoN EDUCATIoNAL RESoURCES LEARN MoRE oNLINE AT LBBC.ORG

3

1

4

6

8

MEDICAL INFoRMATIoN

Tamoxien: New

Findings StirQuestions on

Treatment Length

PRoFILE

Supporting Loved

Ones, Living Lie:

Vernell Kelly s Story

QUALITy oF LIFE

Long-Term

Survivorship: What It

Means to Me

NEWS AND

EDUCATIoN UPDATE

Resources Reach

Further as Programs

Grow

GIVING UPDATEShop to Support:

An Interview with

Everything But Water

C

alen

dar

ectionl Progrms

Wbinrs

All webinars are held rmNn 1 p.m. (ET)

MAy 14, 2013Second Tuesdays:Living Beyond Breast CancersMonthly Webinar or theNewly Diagnosed

MAy 15, 2013Anxiety and Depression

Ater Breast Cancer

JUNE 20, 2013Annual ASCO Meeting Update

Conrncs

oCToBER 2627, 2013Annual Fall ConerencePhiladelphia, Pa.

FEBRUARy 2123, 2014C4YWAnnual Conerenceor Young Women Aected byBreast Cancerorland, Fla.

Spcil ents

MAy 19, 2013

Yoga on the Steps: PhiladelphiaJune 13, 2013Yoga on the Steps:Washington, D.C.

Jul 28, 2013Yoga on the Steps:Kansas City, Mo.

September 15, 2013Yoga on the Steps: Denver

octber 12, 2013The Butterfy BallPhiladelphia, Pa.

Check lbbc.org r the latestprgram inrmatin

Insight

SPRING 2013

Nn-prt oUS Pstag

PaIdPhiladelphiaPERMIT No.

354 West Lancaster Avenue, Suite 224Haverrd, PA 19041

LBBC

IN

THISISSu

e

Pht: Bran Mead

living beyond breast cancer insight 2013 spring

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