Survey
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
COLON CANCER FAMILY REGISTRY ................................ 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 .......................... PROGRESS P 2 ..................................... CONTINUED ON AGE 2 .................................. 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 P 1 ........................................................... 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. .......................... .................................. 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/ What P articipa ting in Means this Stu to Me. . dy . Last wee 3 k I receive d Registry). I want to th a Birthday card from ank y ou a now been s it was an you (Arizona Family 9 years sin emotional ce I was fi remin rst diagno Like many s e d with colon der that it has others, I h cancer. had just tu a v e had c h rne a “colonosco d 39 when I first hea llenges and wondere py” and th rd that fore d “why me en the dev ?” I How could astating ne ign sounding word this be? T ws that I h here is no Besides, I ad “Colon histo tho Cancer.” I just could ught colon cancer w ry of any kind of can as someth n’t unders cer in my tand why m fa ing that on University of Arizona ly old peop mily. e? It wasn’t u le got. n ti l I received The University of Arizona staff works with the Comthis study a letter fro th a t I m s aw an opp you invitin prehensive Cancer Control, a program at the Arizona negative a ortunity to g me to pa nd challen take what rticip Department of Health Services promoting an integrated ging experi Participati h a d so far bee ate in e nce and tu ng in this s na rn tudy has tu coordinated approach to cancer. Also, the CFR study rned out to it into something po M y diagno sitive. be a bless coordinator serves on the Quality of Life committee ing for me myself and sis of colon cancer . was a wak realized I focused on increasing access to the comprehensive e-up call. ne life. Partic I looked w ipating in th eded to make chan management of acute, chronic and delayed effects ithin g e is s to create connected study has balance in h to e lp a e v d of cancer and its treatments, optimizing local, state e ry to s n my p u e rture my s questions pirit by be and encou cial research group. and national resources, and increasing support for c ra o I m g h personal s ense of sa ed other family mem ave gladly answere ing health care providers and payers. d ti b s e faction kno input will u rs to partic ltim win ipate. I fe el a I have also ately help in the pre g that mine and all other partic vention an found mys University of Southern California d ip e tr ants’ lf cise. By m eatment o f aking chan inspired to make ch The University of Southern California staff anges in m colon cancer. ges in my lifestyle, I y diet and participated in several community health fairs I believe h feel gratefu e l to have lo xertime. It’s a umanity can help m sponsored by churches serving the minority st 75 lbs. ake a diffe gift that co rence by g mes full cir community. They also distributed educational iving a little cle. of their handouts to increase awareness and encourage S ig ned, R.D colorectal cancer screening. . from Ari zona 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. .......................... 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 .................................. 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. ..........................