Download COLON CANCER FAMILY REGISTRY

COLON CANCER FAMILY REGISTRY
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FALL-WINTER 2007
VOLUME 5, NO. 1
USC CONSORTIUM: Dartmouth Medical School — Cleveland Clinic Foundation — University of Arizona
University of Colorado — University of Minnesota — University of North Carolina — University of So. California
We ARE Making Progress
in the Fight Against
Colorectal Cancer
Robert Haile, DR.PH
Principal Investigator, USC Consortium
T
he Colon Cancer Family Registry
(CFR) has had an exciting year of research.
In fact, the Colon CFR is facilitating over
125 approved research projects, which
include major collaborations with over a
dozen of the best colorectal cancer research
groups in the world. Here’s a quick
overview:
First, it’s clear that
genetic factors can be
important causes of
colorectal cancer. The
Colon CFR is involved
in world-wide, collaborative studies to identify
new genes that may cause colorectal cancer.
This past year, these collaborative
studies identified two regions, on chromosomes #8 and #9, where there is consistent
evidence that genes in these regions may
increase the risk of getting colorectal
cancer. Of interest, the region on chromosome #8 is also associated with prostate
Stay Connected . . .
Call your study coordinator:
If you have moved, or are planning
to move.
And to let us know about any new
cancers or deaths in your family
Help us keep you informed and help us
keep the Registry strong!
The CFR Celebrates 10 Years and Plans for the Future!
The Colon Cancer Family Registry (CFR) is 10 years old and has
grown into one of the largest resources available to researchers
studying colon cancer! The international CFR has enrolled 13,460
families and 34620 individuals and of these, 1775 families and 4577
individuals have joined through the USC Consortium.
In this issue, we focus on the history of the CFR — where we started,
how we’ve grown and what we’ve accomplished — as well as exciting new research
being undertaken. The Colon CFR has become an outstanding resource that you
helped build — Thank you!
and breast cancer. The hunt is now on to
identify the exact genes in these two
regions that may cause colorectal cancer.
see if a subgroup of people may have a
defect in their process of methylation that
places them at increased risk of cancer.
In addition to mutations in genes
(changes to DNA — the alphabet of genes)
passed genetically from parents to children,
there are other changes to DNA that take
place during a person’s lifetime (not transmitted from parents to children) that may be
important in cancer. Hypermethylation is
one such change.
families at high risk of colorectal cancer
and of patients with a diagnosis of
colorectal cancer. Data from the Colon
CFR have been presented at numerous
international meetings. For example, Dr.
Steve Gallinger, from the Ontario, Canada
Colon CFR, has presented data indicating
that a particular charecteristic of the
tumor, called microsatellite instability
(MSI), is a strong indicator of improved
survival at every stage of colorectal
cancer. In other words, no matter what
They found strong
Also, the
“This is an exciting project that will
evidence this was the
National Cancer
surely lead to new insights into the
case and identified a
Institute funded
causes
of
colorectal
cancer.”
method
for measurthe Colon CFR to
ing the frequency of
conduct a study to
this increased methylation. This work was
scan the entire genome (looking at 1,000,000
published in Nature Genetics, one of the
different places in the entire human genetic
leading science journals in the world.
code) for other genes that may contribute to
colorectal cancer. This is an exciting proIn addition to studying the causes of
ject that will surely lead to new insights into
colorectal cancer, the Colon CFR is also
the causes of colorectal cancer.
interested in the clinical management of
Hypermethylation is an important way a
gene may get “turned off” and no longer
function. If this happens to a gene that helps
suppress tumor growth, the result is an
increased risk of cancer. The Colon CFR
collaborated with Dr. Peter Laird at USC to
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PROGRESS
P
2
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CONTINUED ON
AGE
2
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Timeline and Growth of the
Colon CFR
1997
The Colon CFR — 1997
1998
The CFR is created to conduct research into
the causes, prevention and treatment of colon
cancer. During Year 1, participating centers
worked closely to:
• Develop procedures for enrolling families
with colon cancer into the registry
• Collect information and biospecimens
• Keep in touch with participants.
1999
Phase I
2003
CFR centers began enrolling colon cancer
patients and selected relatives. Participation
at enrollment included:
• Family History Information
• Risk Factor Questionnaire
• Blood Sample
• Diet Questionnaire
• Medical Records and (if diagnosed with
colorectal cancer) a sample of tumor
Annual contact was maintained with participants
through holiday or newsletter mailings.
2004
Phase 2
2000
2001
2002
2005
2006
2007
2008
2009
2010
2011
2012
During Phase 2, CFR centers:
• Continued enrolling new families with a
focus on minority families, families with
early-onset colon cancer and families with
multiple cases of the disease.
• Follow-up interviews began for participants
who had completed 5 years in the registry.
2007
Phase 3
Additional funding is expected to continue
enrollment and follow-up for the next 5 years.
During Phase 3, we plan to continue to:
• Enroll additional minority families and families at increased risk for colorectal cancer.
• Conduct 5- and 10-year follow-up
questionnaires for individuals who have
reached those milestones,
• Update participants through newsletters
and mailings
Highlights from
the Sites!
In addition to enrolling participants into the Colon Cancer Family
Registry, the CFR staff also engages in activities that promote
health awareness. Here are some highlights from the sites!
University of North Carolina
In May, several CFR staff members at the University of North
Carolina participated in the University’s Spring Fling, an annual
event that collects non-perishable food for the local food bank and
pet items for local animal shelters. The staff also attended seminars
on enhancing CFR recruitment and better understanding and
communication with patients as they deal with the different stages
and the emotional impact of a cancer diagnosis.
University of Colorado
The staff at the University of Colorado is actively involved with the
Colorado Colorectal Cancer Task Force. The Task Force, part of the
Colorado Cancer Coalition, works to increase colorectal screening.
The University of Colorado also invited its CFR participants to
attend a “Conversations About Colorectal Cancer” seminar
sponsored by the Colon Cancer Alliance. The seminar focused on
advances in treatment as well as survivorship issues such as side
effects, pain management and psychosocial issues.
UPDATE ON THE FAMILY HEALTH
PROMOTION PROJECT
Thanks to all registry participants who are taking part in the
Family Health Promotion Project, a study of cancer screening
behaviors. The response rate has been phenomenal — 94% of
our participants were still with us at the one year mark. Many
thanks to all of you!
The study closes September, 2008. If you want to be notified if
our findings are published, please contact us:
Toll free line: 1-877-700-0697
Email: [email protected]
Mail: Family Health Promotion Project, F-538
PO Box 6508, Aurora, CO 80045
PROGRESS
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CONTINUED FROM
AGE
stage the colorectal cancer is when diagnosed, those patients whose
tumor has high levels of MSI appear to do better and survive longer
than patients with lower levels. Research is now focusing on why
these patients tend to do better.
We ARE making progress in understanding the causes, prevention and treatment of colorectal cancer. We look forward to the
coming year when we expect to make even more important scientific
discoveries that will lead to new or better ways to prevent and treat
colon cancer.
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University of Minnesota
The staff at the University of Minnesota organized a team
of 40 co-workers, family and friends to walk the talk by
taking part in the 3rd annual Get Your Rear in Gear 5K
Race during National Colorectal Cancer Awareness Month
in March. Get Your Rear in Gear events are sponsored
by the Colon Cancer Coalition Foundation to raise awareness of colorectal cancer and help generate greatly needed
funds for screening and patient services. For more info:
http://www.getyourrearingear.com/
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Kathy Toderick, Family Coordinator at
the Cleveland Clinic, aka “Polly
Polyp” being snared by Dr. James
Church, Colorectal Surgeon at the
Cleveland Clinic - One less threat!”
Cleveland Clinic
Polyps took on human form at
the Cleveland Clinic during
National Colorectal Cancer
Awareness Month in March. The
staff dressed up as Polly Polyp to emphasize the
importance of colon cancer screening. Hundreds attended the event
and had the opportunity to talk one-on-one with trained volunteers about the disease.
The Cleveland Clinic also participated in other community health fairs targeting
minorities and women, presented a talk at the Collaborative Group of the Americas
on Inherited Colorectal Cancer and attended the International Society for
Gastrointestinal Hereditary Tumors meeting in Yokohama, Japan.
Special Kudos! Ellen McGannon, BSW, Study Coordinator at the Cleveland
Clinic, received a Lifetime Achievement Award at the October, 2007 meeting of the
Collaborative Group of the Americas on Inherited Colorectal Cancer, for her work
in the David G. Jagelman Inherited Colorectal Cancer Registries.
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International Colon CFR
Participating Sites:
University of Southern California Consortium
• Cleveland Clinic Foundation
• Dartmouth Medical School
• University of Arizona
• University of Colorado
• University of Minnesota
• University of North Carolina
• University of Southern California
Australasia Colorectal Cancer Family
Hawaii Family Registry of Colon Cancer
Mayo Colorectal Cancer Family Registry
Ontario Familial Colorectal Cancer Registry
Seattle
Familial Colorectal Cancer Family Registry
Affiliated Institutions:
Galicia, Spain
Newfoundland, Canada
Northern California Cooperative Family Registry
for Colon Cancer
National Cancer Institute:http://epi.grants.cancer.gov/CFR/
4
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Take CHARGE of your Health
Sometimes a Little Fear
can be a Good Thing
Y
ou’ve survived the cancer. Now how do you keep it from
coming back? Lace up those sneakers and head out for a walk.
Nancy Pengra, Staff member,
University of Minnesota, and cancer survivor
They say a little guilt is a good thing if you learn from it. So,
too, a little fear can be good if it motivates you to take action.
So, here’s a little fear:
Colorectal cancer is the:
• 2nd most common cancer of US women of Hispanic, American
Indian/Alaska Native or Asian/Pacific Islander ancestry
• 3rd most common cancer of US men and of Caucasian and
African American women
• 3rd deadliest cancer — 3rd after lung and prostate cancer for
men, and 3rd after lung and breast cancer for women
It doesn’t matter if you’re male or female, Republican or
Democrat, Lutheran or Muslim. The statistics are sobering —
1 in 17 people in the US will develop colorectal cancer.
So what CAN you do to improve your odds?
We’ve all heard the American Cancer Society guidelines:
Healthy weight, active lifestyle, lots of fruits and vegetables,
light on the red meat, watch the alcohol, no smoking.
We hear it so often it’s easy to tune it out. And what did
that new study say? Fiber’s good, or was it red wine?
Cruciferous vegetables? Huh, what are they? Confused?
Well here’s what you need to remember: the Big 3:
1.
Diet
There’s no way to sugar coat this (pardon the pun) — our Western
Diet (lots of red and processed meats, refined grains, fats and
Resources for Healthy Living
Take charge of your health and explore these resources:
• American Cancer Society
Exercise Boosts Colon
Cancer Survival
Website: www.cancer.org. See Resources for Healthy Living
Telephone: 1-800-ACS-2345
• American Institute for Cancer Research
Website: www.aicr.org. See Diet & Cancer
Telephone: 1-800-843-8114
• Nutrition.gov - U.S. Department of Agriculture’s consumer online
resource providing a wealth of information on food and nutrition.
Website: www.nutrition.gov
• CFR Newsletters: check out back issues at:
https://bioinformatics.dartmouth.edu/ccfrc/
Cancer causes many people to slow down because of stress,
feeling sick and fatigued from treatment as well as muscle loss.
Flexibility exercises (stretching), aerobic exercise and especially
resistance training for rebuilding muscle can help cancer
survivors feel better and reduce their risk of recurrence.
People treated for colon cancer can improve their odds of
survival by as much as 50% through regular exercise according
to Jeffrey Meyerhardt, MD, MPH, of the Dana-Farber Cancer
Institute.
You may need to start slowly but don’t get discouraged.
Even small amounts of additional activity can help increase
your energy and strength levels and help you live a longer life
— free from cancer.
sweets) equals an increased risk of colon cancer. Diets high in
fruits and vegetables help protect against colon cancer. We all
know a healthy diet is better for our heart too, so accept it.
Remember what Mom says: eat your vegetables.
2.
Exercise
An hour of exercise 3-5 times a week reduces colon cancer risk,
especially among men. A recent study takes it further: the
bigger your waist line, the bigger your risk of colon cancer. For
every 4” gained around the belly, the risk of colon cancer goes up
33% in men and 16% in women.
Need more motivation? Think of your colon as your
body’s sewage plant. The longer the waste sits
there, the more toxic it becomes. Exercise gets it
moving, improves your fat-to-lean ratio, and helps
minimize the incidence of obesity and diabetes;
two of the leading risk factors for colon cancer.
3.
Family History & Screening
Another big risk factor — a family history of polyps and colon
cancer. If you have a family history you may or may not get
colon cancer, but it greatly increases your odds. You can’t
control this risk factor, but you still may be able to prevent the
disease through increased, and earlier, screening. Colon cancer
can grow for years before causing symptoms — so be proactive!
So, while it isn’t good (or fun) to live in fear of getting cancer,
if a little fear causes you to take the dog for a walk instead of
taking a nap, or ordering the broiled halibut instead of the
double burger with fries . . . that’s good.
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