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C3 Momentum - Spring 2010

C3 Momentum - Spring 2010

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Published by c3colorectal
In this issue:
TIME TO “BUTT-IN” Celebrate C3’s fifth birthday by joining in the annual phone campaign.
PATIENT-TO-PATIENT TIPS Learn how others got through those first days after diagnosis.
HEALTH CARE REFORM IS NOT ENOUGH Make H.R. 1189 a reality in 2010.
ADVOCATES GET HEARD Every voice makes a difference. Speak up and be counted.
In this issue:
TIME TO “BUTT-IN” Celebrate C3’s fifth birthday by joining in the annual phone campaign.
PATIENT-TO-PATIENT TIPS Learn how others got through those first days after diagnosis.
HEALTH CARE REFORM IS NOT ENOUGH Make H.R. 1189 a reality in 2010.
ADVOCATES GET HEARD Every voice makes a difference. Speak up and be counted.

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Published by: c3colorectal on Mar 31, 2010
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Call-on Congress Inspires and Teaches
 Education is a Powerful Tool
C3 Efforts Pay Off in 15 MillionNew Research Dollars
By Mary M. Miller
1414 Prince Street, Suite 204, Alexandria, VA 22314(703) 548-1225 • www.FightColorectalCancer.org
they realized how powerful theirs was;that change can come about story bystory, step by step.They are not alone. Every year C3sponsors Call-on Congress to teach
continued on page 7continued on page 6
TIME TO “BUTT-IN” .......................................2Celebrate C3’s fth birthday by joining inthe annual phone campaign.PATIENT-TO-PATIENT TIPS...........................3Learn how others got through thosefrst days ater diagnosis.HEALTH CARE REFORM ISNOT ENOUGH ...............................................4Make H.R. 1189 a reality in 2010.ADVOCATES GET HEARD ............................5Every voice makes a dierence. Speak upand be counted.
C3 thanks Bristol-Myers Squibb for anunrestricted charitable grant which madethis issue of 
 possible. C3 is solely responsible for newsletter content.
 Moving towards better care and a cure
C3:  MomentumC3:  Momentum
Winning the ght against colorectal cancer 
By Carlene Canton
Still mourning the death of theirbeloved father from colon cancer ninemonths earlier, sisters LaRisha, Marshaand Michell Baker attended C3’s Call-on Congress last year not knowingexactly what to expect.They arrived in Washington, DC,knowing only that they wanted todo something to honor their dad’smemory.The C3 training and education theyreceived, along with visits to CapitolHill, crystallized for them what theycould do to ght the disease thatclaimed their father’s life. Whilesharing their stories and observing theimpact such stories have on others,
The Baker sisters (rom let) Marsha, LaRisha,and Michell called on Congress in 2009 – andcame back again this year.
The whole C3 team put their shouldersto the wheel, and it paid off big.In December President Obama signedthe nal Fiscal Year 2010 Defense Appropriations Bill that includedadding colorectal cancer to a new $15million cancer research program.C3 worked closely with keyCongressional members for more thana year to convince Congress to fund anew Department of Defense ColorectalCancer Research Program.For nearly 20 years the DefenseDepartment’s medical research program has directed funds to breastcancer research, with prostate, lungand ovarian cancer research addedover the years. But even though
 The Baker sisters are back in DC thismonth, joining C3 advocates for thisyear’s Call-on Congress. They willcontinue to honor their father’s memoryby working with C3 advocates March 15to 18 to lobby elected ocials. For moreon Call-on Congress, turn to page 5.
Board o Directors
Nancy Roach
 Alan Balch, Ph.D.,
Vice Chair 
Steven Depp, Ph.D.,
Robert Erwin,
Carlea Bauman,
Gordon Cole
Medical Review Network 
Nancy Baxter, MD, FRCSC
University of Toronto
 Al B. Benson III, MD, FACP
 Northwestern University
Richard Goldberg, MD
University of North Carolina
Carolyn Grande,CRNP, AOCNP
University of Pennsylvania
 Axel Grothey, MD
 Mayo Clinic College of Medicine
Heinz-Josef Lenz, MD, FACP
University of SouthernCalifornia
John Marshall, MD
Georgetown University MedicalCenter 
Howard McLeod, PharmD
University of North Carolina
Neal Meropol, MD
University Hospitals Case Medical Center 
Edith Mitchell, MD
Thomas Jefferson University
Daniel Sargent, Ph.D.
 Mayo Clinic College of Medicine
Joel Tepper, MD
University of North Carolina
For C3’s 5th Birthday, CallCongress on March 30th
By Carlea Bauman
C3: Colorectal Cancer Coalition iscelebrating its 5th birthday this year.The organization was created when acommitted group of colorectal canceractivists banded together to change thelandscape for people living with thisdisease.One of the best ways to change thelandscape is to get Congress to sit upand take notice that things are notwhere they should be – and need to bechanged.Three years ago we made it a priorityto pass legislation that would create aNational Colorectal Cancer ScreeningProgram. The goal of such a programis to bring lifesaving screening andtreatment to people who otherwisecannot afford it.Every day the C3 Answer Line (1-877-427-2111) receives calls from peoplewho are aware that they need to getscreened for colorectal cancer and aredesperately searching for a way to payfor the screening.We help them the best we can. Thanksto the folks at the Centers for DiseaseControl and Prevention (CDC) andsome charitable hospitals around thecountry, we know about a patchworkof free or reduced-cost screening programs out there.But the fact of the matter is, right now,if you are uninsured or under-insuredand between ages 50 and 64, whether you get screened for colorectal canceror not depends entirely on where youlive. If you are lucky enough to livewhere the CDC programs are hard atwork, we’ve got good news for you.If you don’t, well, that’s a toughconversation to have because weknow that those without insuranceget diagnosed at later stages and diesooner than those with insurance.I look forward to the day when anational program exists so that whenthese calls come in, we can say, “Yes, you can get screened, and yes, you canafford it.”That day will only come if we passH.R. 1189, The Colorectal CancerPrevention, Early Detection, andTreatment Act. You can help make thathappen. On Tuesday, March 30th, joinC3 and the Prevent Cancer Foundationfor the Congressional Butt-in – a one-day phone blitz to Congress in supportof this legislation. Your call will takeless than ve minutes. And better yet,it will truly make an impact.Here’s how it works:On Tuesday, March 30, call 866-615-3375. Follow the prompts to enter your zip code and you will be directlyconnected to the ofces of yourMembers of Congress – your twosenators and your representative.When you reach their ofces simplystate your support of the ColorectalCancer Prevention, Early Detection,and Treatment Act and urge them to vote in favor of the bill.If you would like a detailed phonescript, you’ll nd one at www.CoverYourButt.org.Urge your friends and family membersto join the Butt-In. It’s a simple phone call that can make a world of difference. C3 thanks you for taking part in this effort.
MARCH 30, 2010
C3 Momentum Spring 20103
Patient-to-Patient: Tips for the Newly Diagnosed
Steve Depp
a stageIV colon cancersurvivor, bringsthe perspective of a physicist andelectrical engineering researcher. Alongtime C3 advocate, he servesas Treasurer of the C3 Board of  Directors.
• Take a deep breath and don’t rushinto anything. Spend some timelearning about colorectal cancer and your unique case. It’s very unlikelythat a delay of a week or so for studyand consultation will adverselyaffect your outcome.• If possible, take time to get a secondopinion on your diagnosis, becauseit denes your options. Becausetreatments are changing quickly, ageneral oncologist may not have the very latest information about yourspecic disease. But he or she shouldbe willing to recommend where to gofor a second opinion.• If possible, consider a“comprehensive cancer center”which offers a multidisciplinaryteam of medical, surgical andradiation oncologists who specializein colorectal cancer. The centeralso may have more sensitivescanning equipment to provide amore detailed picture of possiblemetastases. Call the C3 Answer Linefor a list of comprehensive cancercenters in the US at 877-427-2111.
Gordon Cole
wasa healthy 54 yearold when he wasdiagnosed with stageIV colorectal cancersix years ago. FromNorth Carolina, he isa C3 Board member who is active in fundraising, Call-on Congress, andsurvival support groups.
• Don’t just go online and startGoogling your diagnosis. Go to oneor two trusted websites, like C3and the Colon Cancer Alliance or American Cancer Society. After six years at this, that’s still all I need.Start reading some good stories thereand get your mind right.• For every visit, I go in with mynotebook opened up to the pageshowing my questions for that day.You’re giving a message: I won’t behurried out of here; I have questionsthat need to be answered. If you feelthey’re trying to rush you, just be polite but be rm.• Right from the beginning, askfor printed copies of your scan, pathology and all lab results. Therst time I asked, the doctor lookedat me kind of funny, but now thenurse just hands over the reports atthe end of my visit.
Mortimer Brown
was diagnosed10 years ago, andcontinues to live a full life, including arranging a“Survivors at Sea” support group which met during a2009 Holland America cruise.
• There are no stupid questions! Both you and your caregiver can—andshould—speak up with questions,and to ask for advice.• Join a support group. If you can’tnd one, start one. I believe that people involved in support groupslive richer, fuller lives. During ourrecent cruise, ve cancer survivorsand two caregivers met to talk.We discussed implications of reconstructive surgery—body image,self-esteem, spouse interactions. Wetalked about genetic testing, whetheror not to advise children of results,and much more. At the end of thesecond session, one person said hehad never attended a support groupbefore, but when he got home he wasgoing to look for one. 
In the next issue: Tips forCaregivers. Send yours toTips@FightCRC.org.
In the rst days and weeks after a diagnosis of colorectal cancer, the world may feel like it’s spinning out of control. Here are some tipsfor those who are coping with a new diagnosis from those who’ve been through it:
Cancer center specialists can—and do—coordinate ollow-upand more traditional treatmentswith your community oncologist.Keep your own record: dateso visits; names o doctors; andcopies o test results.Join a support group. I you can’tfnd one, start one. I believethat people involved in supportgroups live richer, uller lives.

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