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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
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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.
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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
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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
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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
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
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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
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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.
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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
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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
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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
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Pht: Bran Mead