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131. Oman
OMAN     Genatak is now offering genetic testing for the mismatch repairs genes of MLH1, MSH2, MSH6 and long pcr for PMS2.  They service the region in the specific countries of Saudi Arabia, Oman, Kuwait, Bahrain, the UAE, and Qatar.   Eastern Biotech Genetic Testing and Counseling MSH1 and MSH2  
Wednesday, 15 August 2012 | 1543 hits
Abu Dhabi, United Arab Emirates  (Has Governmentally Operated Hospitals) Ministry of Health Eastern Biotech Genetic Testing and Genetic Counselors MSH1-MSH2 American Hospital, Dubai  Genetic Testing Center for Arab Genomic Studies Publications re: Genetics in the Arab Population Al Ain Hospital, Al Ain, UAE Tamwan Hospital, UAE   Genetic Testing Genatak is now offering genetic testing in the UAE for the mismatch repair genes of MLH1, MSH2, MSH6 and long pcr for PMS2.  They offer pre and post test counseling.  
Tuesday, 31 July 2012 | 1406 hits
PENNSYLVANIA   Affordable Care Act - Health Insurance for Those With Preexisting Conditions   Pennsylvania Colorectal Cancer Control Program Cancer Prevention and Control Pennsylvania Department of Health Room 1011 625 Forster Street Harrisburg, PA 17120-0701 717-787-5251   Abramson Cancer Center, Philadelphia, Pennsylvania an NCI Institute Fox Chase Cancer Center, Philadelphia, Pennsylvania University of Pittsburg Cancer Institute - Genetic Counseling Svcs -Screening & Detection   Bringing Hope Home   Providing financial resources for Philadelphia Families Hosts for Hospitals   Provides Lodging for Those Coming To Philadelphia for Medical Care    
Sunday, 15 July 2012 | 2152 hits
134. Wisconsin
WISCONSIN   ABC For Health,  A Public Interest Law Firm Connecting WI Families to Health Care Affordable Care Act in Wisconsin (Yet to Come) Uncompensated Care (Charity Program)  in Wisconsin. Favre for Hope Gilda's Club Madison Wisconsin 7907 UW Health Court Middleton, WI 53562 Phone: 608-828-8880 Fax: 608-828-8880 - See more at: http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Find-a-Local-Program/Wisconsin.html#sthash.S2A2et1C.dpuf   Share the Care Share the Care provides a road map on how to create a caregiver team (comprised of friends, relatives, neighbors, co-workers, etc.) to provide individuals and families with help to meet the daily challenges of illness. Share the Care insures that the person who is ill has the support he or she needs and that no caregiver has to do this very difficult task alone. The University of Wisconsin Carbone Cancer Center has developed a 12-minute video to explain the program. The video can be obtained by contacting (608) 265-4618 or nafreeman@uwcarbone.wisc.edu.   American Cancer Society Navigator American Cancer Society Navigators offer free, confidential, one-on-one support to cancer patients and those who care for them. Navigators listen, learn your needs and create an individualized plan made just for you. Navigators provide a vital link between a cancer survivor and resources in the community, including transportation, lodging, and other American Cancer Society programs such as At Home which provides access to free medical equipment for cancer patients, including hospital beds, wheelchairs, walkers and commodes. Call 800-ACS-2345 and ask for your regional navigator. Catholic Charities Center for Patient Partnerships at the University of Wisconsin-Madison The Center for Patient Partnerships serves patients with life-threatening and serious chronic illnesses and their families, regardless of income or residence. Patient advocates work with clients to help them make more informed medical decisions, access care, navigate employment issues, find support and build their own self-advocacy skills as needed. The Center trains professional/graduate students in law, medicine, social work, nursing, pharmacy, public affairs, psychology, biology, health systems engineering and others who will work in or around the health care system in their future careers. Advocacy may include issues surrounding diagnosis and treatment, coordination of care and support, family matters, employment, medical bills/insurance, public benefits or public/private disability. For more information, e-mail advocacy@patientpartnerships.org or call (608) 890-0321.   Community Health Charities of Wisconsin Partnering with America's most trusted health charities to deliver credible health information, community-focused volunteer activities and efficient charitable giving to employees in the workplace.    Gilda's Club Madison Gilda's Club Madison will provide one place for men, women and children living with cancer, as well as their family and friends, to gather. Gilda's Club is a free, non-profit support community for anyone touched by any kind of cancer as well as their families and friends. It's a warm and welcoming, non-residential clubhouse where men, women, and children come together to build social and emotional support as a supplement to medical care. Those interested in joining Gilda’s Club can call (608) 828-8880 to attend a new member meeting. Individuals can participate as much or as little as they want. There is no required time commitment and there are no expectations. Membership is free.   Grant County Department of Social Services  Apply online for financial assistance   Grant County Emergency Food Resources   Boscobel UMC Food Pantry 104 Buchanan Street Boscobel, WI 53805 608.375.4565 Limited to Boscobel area residents. Cassville Emergency Food Fund 608.725.5528 608.725.2340 608.725.5595 Limited to Cassville School District Residents. Hazel Green Food Pantry 2115 N Main Street Hazel Green, WI 53811 608.854.2536 Limited to residents of Southwestern, Cuba CIty and Benton School Districts. Fennimore Food Pantry Depot Exchange 1170 Lincoln Avenue Fennimore, WI 53809 608.822.4060 Limited to Fennimore School District Residents. Lancaster Food Pantry 225 South Madison Street Lancaster, WI 53813 608.723-7070 Limited to Lancaster, Potosi, Cassville, Livingston, and Monfort areas. Livingston Area Outreach 608.943.6260 Available anytime by appointment. Limited to Livingston area residents. Platteville Food Pantry 1345 N Water Street P.O. Box 127 Platteville, WI 53818 608.778.8572 Limited to Platteville residents. Riverdale Food Pantry 116 West Beech Street Muscoda, WI 53573 608.739.3391 608.739.4017 608.739.3933 Limited to Riverdale School District residents Southwest Community Action Program Food Pantries 1108 Wisconsin Avenue, Boscobel, WI 53805 608.375.5903 35 West Main Street, Platteville, WI 53818 608.348.3782   HOPE of Wisconsin (Hospice Organization and Palliative Experts of Wisconsin) Serving the needs of terminally ill people and their families throughout Wisconsin.   In Health Community Wellness Clinic, Bascobel, Wisconsin  Serving Crawford and Grant County   Life After Cancer Networking Group For those who have completed the majority of their treatment and are within six months to one year after treatment. People with cancer are welcome, as well and their family and friends. Meets monthly at Gilda's Club, 7907 UW Health Court, Madison. For more information, call (608) 828-8880.    Look Good … Feel Better A community-based, free service that teaches female cancer patients beauty techniques to help restore their appearance and self-image during chemotherapy and radiation treatments. Volunteer beauty professionals lead small groups, usually consisting of six to ten women, through practical, hands-on experience. Women learn about makeup techniques, skincare, nail care, and options related to hair loss such as wigs, turbans and scarves. Each group program participant receives a free kit of cosmetics for use during and after the workshop. Call (800) 227-2345 and ask for your regional navigator. Luthern Social Services Make A Wish Foundation of Wisconsin Man to Man A supportive gathering of men who have experienced prostate cancer. Meetings are both sharing and educational. No charge. Meets twice monthly. Call (800) 227-2345 and ask for your regional navigator.   Men's Networking Group For men who are living with cancer or who love someone living with cancer. Group meets monthly at Gilda's Club, 7907 UW Health Court, Madison. For more information, call (608) 828-8880. Pancreatic Cancer Action Network Reach To Recovery This program offered by the American Cancer Society can help breast cancer patients (female and male) cope with their diagnosis, treatment, and recovery. Talking with a specially trained Reach to Recovery volunteer can provide a measure of comfort and an opportunity for emotional grounding and informed decision-making. Volunteers are breast cancer survivors who give patients and family members an opportunity to express feelings, verbalize fears and concerns, and ask questions of someone who is knowledgeable and level-headed. Most importantly, Reach to Recovery volunteers offer understanding, support, and hope because they themselves have survived breast cancer and gone on to live normal, productive lives. Call (800) 227-2345 and ask for your regional navigator. Road to Recovery Program that assists ambulatory cancer patients with ground transportation to and from cancer treatment. Call (800) 227-2345 and ask for your regional navigator.   Ronald McDonald House Charities of Eastern Wisconsin Ronald McDonald House Charities of Madison   TEAMSurvivor Madison The mission of TEAMSurvivor Madison, Inc. is to provide women cancer survivors a variety of fitness activities, education and support while taking an active role in our physical and emotional well-being. TEAMSurvivor is unique in that it is open to women surviving any type of cancer diagnosis. Its programs are open to women of all ages and fitness levels, in all stages of cancer treatment and recovery. Visit the TEAMSurvivor Madison website or e-mail info@teamsurvivormadison.org.   United Way 2-1-1 United Way 2-1-1 is a community resource line, providing 24-hour, 365-day a year, free and confidential information and referral services for people in Dane County who are in need of help. Call 2-1-1 within Dane County or (608) 246-4357 from outside Dane County and from cellular phones.   WeCanRow-Madison Camp Randall Rowing Club's WeCanRow-Madison program is designed to provide wellness and recovery options for breast and other cancer survivors with the objective of helping women re-orient themselves to their bodies and learn to accommodate the profound effects of cancer, chemotherapy, radiation therapy and reconstructive surgery. The goal is to give these women a sense of control and to put them in contact with other cancer survivors, while at the same time helping them to rebuild physical strength and mental focus. For more information, visit the WeCanRow-Madison website, e-mail camprandallrowingclub@gmail.com or call Steve Schaefer or Sally Miley at (608) 256-3636.   The Witness Project The Witness Project is a health program for African-American women, which features a group of women who each "witness" about their triumph over breast or cervical cancer. These women provide support, encouragement and hope for one another. This project also offers community education regarding breast self-exam, pap tests, and signs and symptoms of breast and cervical cancer and provides a list of resources that offer low or no cost services to women of color. For more information, call (608) 658-3758.   Wisconsin Well Woman Wisconsin Well Woman is a statewide program that provides free breast and cervical cancer screening for women who have limited or no insurance. Women must meet age and income eligibility criteria in order to enroll in the program. Members may choose from more than 25 area clinics for screening. For more information, call (608) 242-6392.   Young Survivors Networking Group For those with a cancer connection who are in their 20's, 30's and early 40's. Meets monthly at Gilda's Club, 7907 UW Health Court, Madison. For more information, call (608) 828-8880.    Cancer Connect Staffed by skilled nurses and health education.  Cancer Connect offers information on services available at the UW Comprehensive Cancer Center.  This service is available Monday through Friday, 9 a.m. to 4 p.m. (608) 262-5223 or 1-800-622-8922 Website:  uwccc@uwccc.wisc.edu   CareWear CareWear offers products for women who are receiving treatment for cancer.  These include breast prostheses, breast forms, bras, natural hair eyebrows, headscarves, lymphedema sleeves, and more.  Services are offered at UW Health East and West Clinics and the Breast Center at UW Hospital. (608) 262-2609.   Wigs for Patients Sponsored by the Friends of UW Hospital & Clinics, Inc., wigs, turbans and scarves available at no charge for patients who are receiving treatment at the UW.  Call volunteer services department one week in advance for appointment at (608) 266-6025.   The Center for Patient Partnerships at the University of Wisconsin-Madison is a University-based cooperative, interdisciplinary program that is committed to helping cancer patients get the answers, treatment, communication, and supoort they need.  Services are provided free of charge. (608)-265-6267 Email: info@patientpartnerships.org Website:www.patientpartnerships.org   Genetic Counseling UW offers cancer genetics risk assessment and counseling to women and men who have concerns about their personal and/or family history of cancer.  To schedule an appointment contact the UW Clinical Genetics Center at          (608) 263-7284.    Madison Area Brain Tumor Support Group All brain tumor survivors and their family or support persons are invited to share their brain tumor experiences in an effort to provide a supportive and educational experience.  Meetings take place at UW Hospital. (608) 265-1192   REPRODUCTIVE HEALTH CARE CENTER   Young Women’s Cancer Support Group This is a support group for young women who are dealing with the emotional and physical challenges that are different for women who are facing the cancer diagnosis at a young age.  For further details call or e-mail: (608) 263-8521 Website:  mick@spwl.net   Prostate Cancer Resources   Man to Man Support Groups A supportive gathering of men who have experienced prostate cancer.  Meetings are both sharing and educational.  No charge.  Meets twice monthly. Call (800)ACS-2345 and ask for your regional navigator.   Us TOO Support Groups Available in Racine, Milwaukee, and other places. Website:  www.ustoo.com Phone:  (630)795-1002   American Urological Association Website:  www.urologyhealth.org or www.auanet.org   United Way 2-1-1 United Way 2-1-1, formerly First Call for Help, is a community resource line, providing 24-hour, 365-day a year, free and confidential information and referral services for people in Dane County who are in need of help.  Call 2-1-1 within Dane County or (608)246-4357 from outside Dane County and from celllular phones.       Froedtert & Medical College Cancer Center, Web site: Cancer Center at Froedtert; Sue Derus, phone: (414) 805-4350 See Froedtert & Medical College's Cancer Center's 2006 Annual Report (PDF)           Kathy's House, 600 N. 103 Street, Milwaukee, WI 53226, is located about a mile from our affiliated hospitals, is an independent hospitality house where out-of-town patients, family members, and caregivers can stay overnight. There is no charge, but donations are appreciated. The lodging is comfortable, offering 18 private bedrooms with baths. (414) 453-8290 or mail@kathys-house.org   Turville Bay Radiological and Oncology Care Center, Madison    Calumet County Resources:   Calumet County Benefit Specialist for Public Assistance 920-849-1451 Calumet County Disability Benefit Specialist  920-849-1451 Housing Authority of the City of Chilton  920-849-7042 SUBSIDIZED HOUSING RESOURCE Appleton Housing Authority 925 W. Northland Ave., Appleton 920-739-6811  G&D Management Scattered Site Duplexes (Tri-County Area) Milwaukee 414-273-3779  Kaukauna Housing Authority 125 W. 10th St., Kaukauna 920-766-4772  Neenah Court Apartments 2112 Marathon Ave., Neenah 920-722-9136  Outagamie County Housing Authority 3020 E. Winslow Ave., Appleton 920-731-9781  Primrose Apartments 1316 Primrose Ln., Neenah 920-729-0672  Woodridge Gardens 3040 Green Meadow Dr., Appleton 920-733-8811  Dominion Management 37 Tayco St., Menasha 920-729-6336  Fireside Commons 115 Professional Plaza, Neenah 920-722-2242  Housing Partnership of the Fox Cities 611 N. Morrison St., Appleton 920-731-6644  New London Housing Authority 505 Division St., New London 920-982-8509  Parkview Village 2820 Kernan Ave., Appleton 920-731-7288 Fuel Assistance Program, ESI Energy Assistance, 18 W. Main Street, Chilton, WI. Leaven, 1475 Opportunity Way, Menasha, WI   920-738-9635  Rent and Utility Assistance Theda Care At Home Hospice  Theda Care Genetic Testing MEDICAL FACILITES  APPLETON MEDICAL CENTER ADDRESS: 1818 N. Meade Street  Appleton, WI 54911 PHONE: (920) 731-4101 WEBSITE: www.thedacare.org CALUMET MEDICAL CENTER ADDRESS: 614 Memorial Drive  Chilton, WI 53014 PHONE: (920) 849-2386  WEBSITE: www.affinity.org ST. ELIZABETH HOSPITAL ADDRESS: 1506 S. Oneida Street  Appleton, WI 54911 PHONE: (920) 738-2000 WEBSITE: www.affinity.org ST. VINCENT HOSPITAL ADDRESS: 835 S. Van Buren St.  Green Bay, WI 54307-3508 PHONE: (920) 432-8621 WEBSITE: www.stvincenthospital.org 65BELLIN HOSPITAL ADDRESS: 744 S. Webster Avenue  Green Bay, WI 54305-3400 PHONE: (920) 433-3630 WEBSITE: www.bellin.org ST. NICHOLAS HOSPITAL ADDRESS: 1601 N. Taylor Dr.  Sheboygan, WI 53081 PHONE: (920) 459-4739 FAX: (920) 452-8336 WEBSITE: www.stnicholashospital.org THEDA CLARK MEDICAL CENTER ADDRESS: 130 Second St.  Neenah, WI 54956 PHONE: (920) 729-3100 WEBSITE: www.thedacare.org Fox Cities Community Clinic, 1800 N. Appleton Road, Menasha, Wisconsin  920-731-7445 Salvation Army 16 W. Main Street, Chilton, WI St. Vincent De Paul: FOOD PANTRIES: Holy Family Parish  1100 Ryan St., Brillion, WI  Open 1st & 3rd Wednesday, 11:00 a.m. till noon   Holy Rosary Parish  1814 Madison St. (School gym), New Holstein, WI  Open 3rd Friday, 5:00 p.m. till 6:00 p.m.  SERVICES: Hilbert Area financial and in kind services available on an individual case basis. Call (920) 849-4859 or  (920) 418-5075  Chilton Area services available through the Good Shepherd Parish. Call (920) 849-9363.  Department of Health and Human Services  920-849-1400  Financial, Fuel and medical assistance 206 Court Street, Chilton, WI CANCER C.A.R.E.S. Meeting – fourth Tuesday of Each Month – 6:00 to 7:00 p.m. (Cancer Awareness, Resources, Education & Support) Care, Knowledge, & Support for individuals with cancer and their  family members or friends. All are welcome including survivors, those in remission, & those in active treatment. No registration required. Calumet Medical Center – Free 614 Memorial Drive Chilton, WI 53014 FAMILY CAREGIVER SUPPORT GROUP Family Caregiver Support Group Meeting – Last Thursday of Every Month – 1:30 to 3:00 p.m.  Recognizing that caring for others is not only rewarding, but at times stressful, this program will explore the natural transition where aging parents, relatives or friends need help from those around them. No  registration required. Calumet County Courthouse - Free 206 Court Street, Room 301 (3rd floor)  Chilton, WI 53014 Call the ADRC at (920) 849-1451 for more information, transportation, or respite services CHARIOT CABULANCE SERVICE LLC W2748 Mueller Rd. Hilbert, WI 54129 PHONE: (920) 277-1802  PURPOSE: Chariot Cabulance Service is a non-emergency transportation provider that can meet all of your needs with one phone call. Chariot will provide transportation for (but is not limited to): scheduled  doctor’s appointments, dialysis and radiation treatments, hospital discharges, pulmonarycardiac-and orthopedic rehab, holiday and religious functions, all family functions. COST: Cost varies according to day of the week and time of day. Call for more information. CONTACT: Melissa Seefeld, President   Updated 7/13/2013            
Monday, 16 July 2012 | 2273 hits
        U.S. NATIONAL SUPPORT AND RESOURCES   We are in the process of developing all the support and treatment resources available, throughout the world, for individuals at high risk for Lynch cancers. The biggest fear for individuals with Lynch syndrome is whether or not there will be accessibility to surveillance testing, as well as treatment in the event one were to contract a cancer. Each and every state within the U.S. offers affordable health care for those persons who are rejected from health insurance companies for possessing a preexisting condition.  Administered by individual states and the Federal Government, this program is known as the Affordable Health Act. As well, Our goal?  No more survivors and hundreds of thousands of previvors until a cure can be found. Together we will make a difference. Any and all resources listed upon any page within this website are not an endorsement of Lynch Syndrome International nor a recommendation of specific organizations, company, corporation, manufacturer, health care provider, product, institutions or facilities by Lynch Syndrome International.  By listing resources under our "Support Page," Lynch Syndrome International is merely providing a road map for individuals to follow in their search for healthcare and cancer related services.   Medicaid is a federal healthcare program administered by individual states.  The states are authorized to cover colon cancer screening but has the autonomy to decide what kind of screening it will cover and under what circumstances.  A federal website (govbenefits.gov) can help you find and determine your eligibility for state-administered programs like Medicaid. The CDC (Center for Disease Control) offers a program entitled "Screening For Life."  This program reimburses local public health agencies for cancer screening.  Be certain and ask your local health agency if they participate and if you qualify. The National Financial Resources Guidebook for Patients by the Patient Advocate Foundation, provides a thorough comprehensive list of resources, state by state, for those in need of financial resources to obtain diagnostic testing, treatment and ongoing surveillance.   Information: Oconolink:  University of Pennsylvania National Cancer Institute Learn More About Colorectal Cancer Through Med Link (In Many Different Languages) National Library of Medicine (Medline) Cancer Prevention and Control National Institute of Health National Human Genome Research Institute (NHGRI) U.S. Department of Labor Employee Benefits, Employee Guide to Health Benefits Under Cobra The Cancer Project Education and Guidance For Dietary Issues And Cancer Prevention Oncofertility Consortium   Organizations Offering Assistance, Including Co-Pays and Financial Assistance African Women's Cancer Association American Cancer Society American Indian Cancer Foundation Black Women's Health Imperative Brenda Mehling Cancer Fund - Assistance For Ages 18-40 Bridge of Blessings - Financial Assistance for Women With Ovarian Cancer Bureau of Primary Health Care CancerCare  Financial Assistance for Cancer Related Costs  Assistance with Co Payments for Chemotherapy and Medicines Cancer CoPayment Assistance Foundation Cancer Financial Assistance Coalition Cancer Service Directory through the National Cancer Institute Cancer Survivors Fund  For young adults, assistance for scholarships and prosthetics Cancer Treatment Center Search through the American Cancer Society American Childhood Cancer Association Cheap Colonoscopies.com  ColonoscopyAssist ($950 colonoscopies, nationwide) Chronic Disease Fund (Good Days) Clinical Center (NIH) Guide to Governmental Cancer Trials Colon Cancer Alliance Co-Pay Relief Cure Search Department of Veterans Affairs Families USA Fertile Hope (Livestrong Fertility Resources)  Conduit to the Sharing Hope program which offers financial resources for reproductivity Free Clinic Nationwide Search Financial Help For People With Cancer Find a Gastroenterologist (AGA Referrals) Find a Gynecologic Oncologist GARD Genetic and Rare Diseases Information Center Genetic Testing Laboratories through Genetests Healthwell Foundation Hill-Burton Funded Healthcare Certain hospitals receive federal funding to provide services to individuals who are low income and do not have the means to pay for their own health care Johnson and Johnson Patient Assistance Foundation American Kidney Fund Low Cost HRSA Health Care (Locations Throughout the US) Insure Kids Now Program Lance Armstrong Cancer Financial Assistance Liddy Shriver Sarcoma Initiative  Support and Financial Help Low Cost Colonoscopies Medicaid Medicare Colorectal Cancer Screening Program Myriad Genetics Financial Program http://www.mylifeline.org/ Free Websites for Cancer Survivors, Caretakers and Families National Brain Tumor Society National Coalition for Cancer Survivorship National Collegiate Foundation - Provides Financial Assistance to Young Survivors Attending College National Council on Aging NTAF  (Fundraising Assistance and Support for Transplant and Catastrophic Injury) 800-642-8399 National Financial Resources Guidebook for Patients National Organization for Rare Disorders - Assistance Program Nativve American Cancer Research  - Providers Financial Resources And Navigates Native Americans Through Resources NCI Designated Cancer Centers Needy Meds.org Netwish Provides general financial help NIH Clinical Studies Assistance NORDS Patience Assistance Programs Office Of Minority Health Office of Rare Diseases Pallative Care Program Search Partnership for Prescription Assistance Patient Access Network Foundation Patient Advocate Foundation Patient Services Incorporated   Resolve (Assistance with Fertility Treatment) RX Access Card State and Local Health Departments Sam Fund (For Young Adults) States That Require Health Plans To Pay For Clinical Trials Team Cantinuum   Patient Grants and Loans The C.H.A.I.N Fund Inc.  Co-pays, Subsistence, Assistance While Fighting Cancer Tricare Service Directory (for military members) Veterans Administration Care Locations Veterans Administration Cancer Program 2-1-1 Services Prevent Cancer Foundation - Funds Research on prevention, educates on prevention, resources   Services For Underserved Persons   Avoncare provides financial medical assistance to medically underserved women. Native American Cancer Research Patient Advocate Foundation - Hispanic Latino Outreach Program Viva Bien Aprenda Como Spanish Website National Institutes of Health Spanish Hotline  301-592-8573 Teens Living With Cancer -Support in Spanish for Teens with cancer PAF's Scholarships for Survivors Program (for young adults) Planet Cancer (For young adults with cancer)  Websiite Luzca Bien...Sientase Mejor (Look Good...Feel Better)  Spanish My Oncofertility.org (Spanish) Look Good...Feel Better for Teens  800-395-LOOK Camp Kesem for kids and teens whose parents have cancer, California Cancer and Careers (Spanish and English) career coaching, education, resources toward employees with cancer   For Young Adults Living With Cancer I'm Too Young For This massKickers LIVESTRONG Young Adult Alliance Single Jingles: A Testicular Cancer Foundation Imerman Angels First Descents Joan's Fund Break Cancer Nanny Angel Network MyLifeline.org Sharsheret Camp Mak-A-Dream  medically supervised, cost-free Montana experience, in an intimate community setting, for children, young adults and families affected by cancer. MyOncolfertility.org Make A Wish Foundation   How To Find A Gynecological Oncologist-Gynecologic Cancer Foundation   Tips for Finding Financial Assistance     The Desk.Info Roadmap Into Government Assistance     National Cancer Institute The American Cancer Society is a godsend to those of us who have sustained Lynch cancers.  They are available to help with almost anything a survivor needs from assistance with head coverings, to the provision of medical services, to providing a warm compassionate person to listen to an anonymous, frightened voice and even transportation to medical appointments.  Do not hesitate to contact the American Cancer Society with your needs.   Financial Assistance for Medical and Genetic Testing:   The Federal Government subsidizes thousands of primary health clinics across the United States, known as HRSA Clinics.  These are listed with each individual state.  The thought is, if one does not have the financial means to obtain necessary screenings and treatment, these resources are always available. The process would be to personally see a primary care provider at one of these facilities, advise him/her of the high risk to Lynch syndrome by providing evidence of a family history of Lynch cancers or evidence of a direct relationship with a family member with a diagnosed Lynch syndrome mutation and have him/her prescribe genetic counseling and testing for Lynch syndrome, or provide evidence of possessing a Lynch syndrome mutation and requesting the general practitioner refer you to a facility for ordered surveillance testing. As well, the NCI finances hospital cancer programs throughout the United States.  These NCI hospitals and facilities are also listed beneath each state in which they are located, as they provide low cost/no cost health care for those who are in need and who are eligible.   Prescription Assistance The National Cancer Institute Adria Patient Assistance Plan 614-764-8000 Bristol-Meyers Indigent Patient Assistance Program  812-429-5000  Provides Cytoxan to patients with financial need ICI Pharmaceutical Novaldex (tamoxifen) Patient Assistance Program  1-800-456-5678  Provides tamoxifen to patients with financial need. Partnership for Prescription Assistance (PPA)  1-888-477-2669 Searle Pharmaceutical Company provides certain medicines to enrolled physicians.  Any physician may enrolled.  The physician is provided coupons to be redeemed for medicines by qualified patients 1-800-542-2526 Genentech - Patient Assistance Program provides financial help for cancer patients. Needymeds - a website operated by a physician, a social worker and volunteers offering information regarding financial assistance for pharmaceuticals. RXHope.com Complete List of Pharmaceutical Assistance by Name of Company   Air Transportation: (Free or Low Cost Airfare to Treatment for Those In Need)   New Directions for people with disabilities, inc. is a 501(c)(3) non-profit organization providing high quality local, national, and international travel vacations and holiday programs for people with mild to moderate developmental disabilities. The National Patient Travel HELPLINE provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network. Patient AirLift Services arranges free air transportation based on need to individuals requiring medical care and for other humanitarian purposes. TSA Cares is a helpline to assist travelers with disabilities and medical conditions. TSA recommends that passengers call 72 hours ahead of travel to for information about what to expect during screening.   Angel Med Flights, Scottsdale, Arizona (Worldwide) Mission Air Transportation Network (Canada) 416-924-9333 Corporate Angel Network, Inc. White Plains NY  Corporate Aircraft free air transportation  914-328-1313 Airlifeline(USA) 800-446-1231  free air transportation for those in need of medical treatment who cannot afford commercial travel. Mercy Medical Airlift Air Charity Network Air Care Alliance Edward J. Safra Family Lodge at the NIH - Lodging while getting treatment at the NIH Angel Flight at the NIH Angel Flights For Veterans Services (For military families and veterans in need) Air Ambulance Anywhere Air Compassion America National Patient Travel Hotline National Patient Air Transport HELPLINE     Lodging During Treatment   Joe's House Lodging Guide for Cancer Patients Homes That Help and Heal Hope Lodge - Operated by the American Cancer Society Hospitality Homes provides temporary housing in volunteer host homes and other donated accommodations for families and friends of patients seeking care at Boston-area medical centers. The National Association of Hospital Hospitality Houses supports homes that help and heal to be more effective in their service to patients and families. Ronald McDonald House Charities   Groceries, Cosmetic Care and Subsistence   Angel Food Ministries Provides food assistance in 32 states Low Income Home Energy Assistance Program -If you have difficulties paying for your utilities, LIHEAP may be able to assist you with bill payments, an energy crisis, and weatherization and energy-related home repairs. To apply, call the National Energy Assistance Referral (NEAR) project toll-free at the number provided to get the contact information for your local LIHEAP office. (Click on name for hyperlink contact) Society of St. Vincent de Paul Provides various services to people in need, including food programs, emergency financial assistance, emergency transportation, rent/mortgage assistance, free pharmacy services, budget counseling, referral services, and more.  Link is to local councils and contact the local council for assistance. Assistance with General Living Expenses - Enter Zip Code for Resources in your Local Area Brenda Mehling Cancer Fund provides financial assistance for patients ages 18-40 who are going through cancer treatment. Grants are awarded to cover co-payments, rent/mortgage, transportation, car insurance, repairs, and groceries. Angel Food Ministries Operates in 32 states providing food relief Blue Note Fund by the Colon Cancer Alliance Team Continium Provides Assistance with Utilies and Day to Day Expenses Road To Recovery - ACS program providing transportation to and from treatment   Health Insurance Resources Including High Risk Insurance Through States   Health Resources and Services Administration of Databases of National Low Cost - No Cost Health Care Options Health Insurance Information by State Cancer Index of Information and Resources Look Good Feel Better -  Cosmetic Assistance for Women With Cancer National Organizations Offering Assistance To Those With Cancer     Legal Information and Referrals:   Cancer Legal Resource Center Cancer Legal Line Patient Advocate Foundation Genetic information Non-Discrimination Act of 2008 EEOC Website National Genome Research Institute Fact Sheet on the Genetic Information Non-Discrimination Act Genetic Testing Privacy Laws By State dated March of 2008 Genetic Alliance Comprehensive Review of the GINA Legislation GINA Materials for the Public and Healthcare Providers Guide to the Genetic Information Nondiscrimination Act Frequently Asked Questions From Genetics and Public Policy Center C-3 - Colorectal Cancer Coalition - Political Advocacy - Contact Email Genetic Testing Privacy Laws by State dated 3/8/2008   Support     Cancer Hope Network   Cancer Support Community   Cancer Survivors Network   Colon Cancer Alliance - Support, Information, Legislative Advocacy, Education, Public Awareness, Research   Dream Foundation - Grants Wishes to Terminally Ill Adults - Flower Program for Santa Barbara, Los Angeles, Res. Fertile Hope   Fight Colorectal Cancer - (Formerly Colorectal Cancer Coalition) Support, Information, Legislative Advocacy   Kidney Cancer Association - Collaborates with the National Cancer Institute (NCI), American Society for Clinical Oncology (ASCO), American Urological Association (AUA), and other institutions on research projects.  We educate families and physicians, and serve as an advocate on behalf of patients at the state and federal levels. (International Organization)   Transplant Foundation  1-804-285-5115   Livestrong   Lustgarten Foundation - Pancreatic Cancer Research   Ovarian Cancer National Alliance - Support, Research, Clinical Trials, Information, Legislative Advocacy Survivor Alert - For Young Survivors   Sam Fund - Grants to help young survivors get back onto their feet following cancer treatment.   Teens Living With Cancer   TLC  Tender Loving Care Provides wigs, hairpieces, bras, hats, swimwear, breast forms, prostheses   Cancer Information and Counseling Line  1-800-525-3777   American Psychosocial Oncology Society Provides psychological care for patients and caregivers       Revised 7/11/2013    
Saturday, 26 March 2011 | 16283 hits
136. France
FRANCE   Ministry of Health, France French Society of Human Genetics Association of French Speaking Cytogeneticists (Association des Cytogénéticiens de langue Française) Association des Cytogénéticiens de langue Française (ACLF) Information from the Institut National du Cancer L'Association HNPCC-Lynch  Association of Survivors, Previvors and Med Professionals University Hospital of Tours  Clinical Unit of Oncology & Genetics CNRS UMR 5556 Unit of Prevention and Genetic Epidemiology, Centre Léon Bérard, Lyon Lille University Hospital Department of Clinical Genetics, Guy Fontaine Jeanne de Flandre Hospital CHU Lille ALLIANCES RARE DISEASES - www.green-disease-rares.org CANCERONET - www.canceronet.com FEDERATION Ostomy DE FRANCE - www.urilcoparis.org  NATIONAL CANCER INSTITUTE - www.e-cancer.fr  LEAGUE AGAINST CANCER - http://www.ligue-cancer.net/  CANCER INFO - www.e-cancer.fr University Hospital, Rouen, France Department of Genetics, Faculty of Medicine, Institute for Medical Research, University Hospital and Inserm U614, Rouen, France. Tel: +33 2 32 88 81 82; Fax: 33 2 32 88 80 80 Les liens vers d’autres sites intéressants : Le Blog Santé du Dr J.D.  Flaysakier  www.docteurjd.com INSTITUT NATIONAL CONTRE LE CANCER - INCa CANCER INFO – www.e-cancer.fr & La Ligne Téléphonique 0810 810 821 prix d’un appel local Du lundi au samedi de 9h à 19h Association LYNCH en Espagne http://www.afalynch.org/index.php/ca/       AFAL : Association des Familles Atteintes par Lynch ALLIANCES MALADIES RARES – www.alliance-maladies-rares.org Cette association regroupe plus de 199 associations, dont HNPCC – Lynch. Leur but est de faire connaître et reconnaître les maladies rares en créant un collectif d’associations agissant dans l’intérêt des malades auprès du public et des pouvoirs publics. AGENCE NATIONALE DE SECURITE DU MEDICAMENT  – http://ansm.sante.fr Si vous souhaitez faire une recherche de spécialités pharmaceutiques ( médicament ou médicament générique) LA HAUTE AUTORITE DE SANTE (HAS) – http://www.has-sante.fr/ ALIMENTATION ET CANCER COLORECTAL Cette base de données sur la prévention du cancer colorectal est une revue systématique de plus de 1000 études scientifiques chez des volontaires humains, des rats et des souris. Les agents et les régimes sont classés par « efficacité » dans des tableaux dynamiques, remis à jour chaque année. Le site donne aussi des conseils simples sur les aliments qui diminuent le risque d’avoir un cancer ASSOCIATION FRANCOIS AUPETIT – www.afa.asso.fr Maladie de Crohn et rectocolite hémorragique; CANCERONET – www.canceronet.com Une information sérieuse et documentée sur le cancer UNICANCER – http://www.unicancer.fr Groupe hospitalier exclusivement dédié à la luttre contre le Cancer qui réunit les 20 centres de lutte contre le cancer FEDERATION DES STOMISES DE FRANCE – http://fsf.asso.fr/                       FONDATION ARCAD - http://www.fondationarcad.org/                                   Fondation ARCAD – Aide et Recherche en cancérologie digestive  INSTITUT NATIONAL DU CANCER – www.e-cancer.fr JEUNES SOLIDARITE CANCER – http://www.jeunes-solidarite-cancer.org/ Créé et animé par de jeunes malades, ce forum sur internet a pour vocation de briser l’isolement des jeunes adultes, grands adolescents malades, anciens malades et proches.  LA LIGUE CONTRE LE CANCER – http://www.ligue-cancer.net/ MALADIES RARES INFO SERVICES – www.maladiesraresinfo.org 0 810 63 19 20 (n° azur) Ce numéro a pour mission d’informer, d’orienter et de soutenir toutes les personnes concernées par les maladies rares : les malades, leurs proches et les professionnels de santé. C’est un centre d’information pour une meilleure prise en charge et orientation des personnes touchées par les maladies rares. ORPHANET – www.orpha.net Ce site a comme objectif d’aider les professionnels de santé, chercheurs, malades et leurs familles. Il propose des descriptifs de maladies rares, les coordonnées de généticiens et laboratoires de recherche spécialisés. SOCIETE FRANCAISE DE GASTRO-ENTEROLOGIE – www.snfge.org Un site très complet, avec en particulier: - Réponses médicales à des questions posées par les patients - Une page informative sur notre association SOCIETE FRANCAISE D’ENDOSCOPIE DIGESTIVE – www.sfed.org Informations sur la COLOSCOPIE   CHOIX VITAL : Parole & Cancer Des groupes de paroles pour ceux qui souffrent de cancer.          
Thursday, 02 August 2012 | 1405 hits
137. Glossary
    Glossary   Adenoma- A benign polyp that may be pre cancerous.   AmsterdamCriteria:  Guidelines to determine who should be referred for Lynch syndrome genetic testing.   Anus- Outlet of the rectum.   At risk- A person at risk has the possibility of having Lynch syndrome due to family history, however has not been tested.   Autosomal dominant- A pattern of inheritance in which an affected individual has one copy of a mutant gene and one normal gene on a pair of chromosomes.  Individuals with autosomal dominant diseases have a 50-50 chance of passing the mutant gene and therefore the disorder onto each of their children.   Barium enema- Chalky liquid, resistant to x-rays, inserted into the large intestine which allows the operator to view the interior of the bowel and detect anything unusual.   Base Pair - two nucleotides on opposite complementary DNA or RNA strands which  are connected via hydrogen bonds (the center matter connecting each strand of a double helix together into one strand.)   Benign- Not cancerous   Bethesda Criteria:  Guidelines to determine who should submit to Lynch syndrome genetic testing and MSI testing.   Biopsy- Removal of tissue for examination under a microscope.   CA-125 - A blood test that assesses the concentration of CA-125, an antigen found in ovarian cancer.   CAT scan- (Computerized Axial Tomography) - a form of x-ray that shows the size and shape of body organs layer by layer.   Cecum- The first section of the large intestine (colon).   Chemotherapy Neuropathy - nerve damage primarily in the hands, feet, arms and legs, resulting from chemotherapy.   Chromosome- Contains the genetic material of a cell (genes). The normal number of chromosomes in a human cell is 46 (23 pairs).   CIPN:Chemotherapy Induced Peripheral Neuropathy  (See Chemotherapy Neuropathy)   Codon:  Three adjacent bases on a DNA molecule determines the position of a specific amino acid protein molecule during protein synthesis.   Colectomy- The surgical removal of the colon (large intestine). Colon - (Large intestine, large bowel), About five to six feet long, it comprises the last section of the colon and includes the cecum, ascending colon, transverse colon, descending colon and sigmoid colon.   Colonoscopy-  Also known as "scope," it is an examination of the inside of the entire colon by use of a  flexible tube, about five feet in length.  The tube has a light source, a magnifying eye glass and an open channel through which air can be passed and biopsies can be taken.   DNA- (Deoxyribonucleic Acid). The molecule that contains the code for the genetic blueprint. It is found in the nucleus of cells. Duodenum - The first part of the small intestine, about twelve to fifteen inches long.   Endometrial Aspirate - Extraction of tissue from the uterine lining, by suction, for examination.   Endometrium- The mucousy membrane composing the inner layer of the uterine wall.   Epcam Deletion:  On chromosome 2, the EPCAM gene lies next to the MSH2 gene. Each gene provides instructions for making protein.  The EPCAM gene causes the MSH2 gene to be turned off, by a mechanism called promoter hypermethylation. It causes too many methyl groups to be attached in the promoter region and they attach to the MSH2 gene, resulting in less protein produced in epithelial cells. Loss of this protein results in loss of DNA repair.     Esophagogastroduodenoscopy (EGD, Upper Endoscopy)- Examination by use of a flexible tube passed through the interior of the upper GI tract (esophagus, stomach, and duodenum). The tube has a light source, a magnifying eye glass, and an open channel through which a biopsy can be taken.   ET- Enterostomal Therapist; a specialist, often a nurse, who assists individuals who wear an external abdominal appliance to collect body waste.   Familial Cancer -   Cancer that occurs in families more often than would be expected by chance. These cancers often occur at an early age, and may indicate the presence of a gene mutation that increases the risk of cancer. They may also be a sign of shared environmental or lifestyle factors.   FAP (Familial adenomatous polyposis)- An inherited disorder of the gastrointestinal tract in which there are 100 or more pre cancerous polyps.   Flexible sigmoidoscopy- A test in which a flexible tube about 2 1/2 feet in length is used to examine the rectum and lower part of the large bowel. The tube has a light source, a magnifying eyepiece, and an open channel through which air can be passed and a biopsy taken.   FOBT Test: Fecal Occult Blood Test is a non-invasive "at home" test, used to detect hidden blood in the stool and often utilized for colon cancer screening.   Gastroenterologist - A physician who specializes in the gastrointestinal tract.   GI (gastrointestinal) tract- Consists of the esophagus, stomach, small intestine (22-25 feet in length), and large intestine (5-6 feet in length).   Gene- A basic unit of heredity with each occupying a certain, specific place on a chromosome.   Genetic Testing - A blood test assessed by a lab to determine if certain Lynch syndrome mutations exist.   Geneticist-  A physician who specializes in genetics.   Germline Mutation- Same as hereditary mutation, called germline because hereditary mutations come egg and sperm cells, which are also called germ cells.   Glioblastoma- A type of primary malignant brain tumor sometimes associated with Lynch syndrome.   Gynecolgist- A physician that specializes in women's cancers.   Hemoccult test- A test using specially treated cardboard slides to check for hidden blood in the stool.   Hereditary- Genetically transmitted from parent to children.   hMLH1, hMSH2, hPMS1, hPMS2- The abbreviated names of some of the more known genes that, when abnormal, cause HNPCC. They are located on chromosomes 2, 3, and 7.   HNPCC(Hereditary Nonpolyposis Colorectal Cancer) -  The name of a genetic condition which encompasses Lynch syndrome AND Familial Colorectal Cancer Type X, a familial hereditary cancer condition.   Hysterectomy- Surgical removal of the uterus.   IHC Testing - (See Immunohistochemistry)   Ileoanal pull-through (pelvic pouch procedure, ileoanal anastomosis procedure)- Removal of  the colon and the lining of the rectum, leaving the underlying anal muscles, or sphincters. The last part of the small intestine is joined to the anus and an internal pelvic pouch is created.   Ileorectal anastomosis- Removal of the colon and joining of the last part of the small intestine (ileum) to the rectum.   Ileostomy (proctocolectomy)- Removal of the colon, rectum, and anus. An opening is then made from the ileum through the abdominal wall.   Ileum- The last part of the small intestine, 12-15 feet long.   Immunohistochemistry- Also known as IHC.  Pathology test of tumor involving staining tumor tissue samples to determine the presence or the absence of certain proteins which may reveal which mutated genes caused the cancer.   Inflammation - Chronic inflammation can trigger the immune system to battle against a persistent infection or bacterium and can contribute to the development of cancer.   Jejunum- The middle part of the small intestine, 8-10 feet long.   Karyotype- A picture of the chromosomes.   Keratoacanthoma- False skin cancer, appearing like a little volcano   LSI- Abbreviation for Lynch Syndrome International   Lynch Syndrome I & II- Another name for the inherited condition, HNPCC.   Malignant - Cancerous   Marker- A physical abnormality that may indicate the presence of, or may predict the future occurrence of a specific disorder in an individual.   Metastasis- Spread of cancer by the lymphatics or bloodstream to other sites in the body.   Microsatellite: Strand of DNA consisting of a sequence of repetitions of one to six base pairs in length.   Microsatellite Instability -  Condition created by damaged DNA due to defects in the normal DNA repair process.   MisMatch Repair Gene - Genes that contain mismatch repair proteins that check for and repair mistakes made in the production of new DNA.  When a mismatch repair gene becomes altered, as in Lynch syndrome, it ceases to make proteins or ceases to work properly, allowing cancers to develop.   Missense Mutation:  A missense mutation is a point mutation in which a single nucleotide change results in a codon that codes for a different amino acid. This can render the resulting protein nonfunctional.   MMR- Mismatch Repair   MRI- A procedure in which radio waves and a powerful magnet linked to a computer is used to create detailed pictures of areas inside the body. These pictures can show the difference between normal and diseased tissue.   MSI- Pathology test of a tumor to determine if instability or other qualities of Lynch syndrome exist.   Muir Torre - A rare inherited skin disorder associated with mutations in mismatch repair proteins, hMSH-2 and hMLH-1, which predispose affected patients to cancer malignancies.   Mutation- A change in a gene which may result in a specific disorder.   Non-Invasive-  A procedure in which nothing enters the body (i.e., saliva DNA testing)   Nonsense Mutation: a genetic mutation in a DNA sequence that results in a shorter, unfinished protein product which occurs when a premature nonsense or stop codon is introduced into the DNA sequence. When it is translated into protein, the protein is incomplete short of the normal therefore, most of these mutations resulted in nonfunctional proteins.   Oncologist – A physician who specializes in treating cancers   Ostomate- A person with an ileostomy (or colostomy).   Palliative Care - Medical or comfort care that reduces the severity of a disease or slows its progress rather than providing a cure, i.e.,  if surgery cannot be performed to remove a tumor, radiation treatment might be tried to reduce its rate of growth, and pain management could help the patient manage physical symptoms.   Pathologist: A physician who examines tissues and fluids to diagnose disease to assist in making treatment decisions   Pedigree- family tree; genealogy.   Polyp- nonmalignant growth of tissue protruding from the mucous lining of an organ such as the nose, bladder, or intestine. Also called polypus   Polyposis- See FAP above.   Port - implanted device, below the skin, allowing a catheter to be attached to infuse medicines and fluids such as chemotherapy into the body and to allow blood to be drawn out.   Previvor- An individual diagnosed with Lynch syndrome but whom has not contracted a cancer.   Primary Brain Tumor -   tumor that originates in the brain or spinal cord tissue rather than spreading to the brain from another part of the body.   Proband:  First individual identified in a family that has a specific hereditary disorder.   Prophylactic:  A preventative measure   Propositus/Proposita- (Proband; Index case). The first individual to be identified in a family that has a specific hereditary disorder.   Sarcoma - tumor of the soft tissue or bone   Sebaceous Adenomas- Non cancerous skin tumor of an oil producing gland   Sebaceous Carcinoma - Cancerous skin tumor of an oil producing gland   Sebaceous Epithelioma - A benign tumor of the epitheliom of the sebaceous gland containing basal or germinal cells.     Salpingo-oophorectomy- Removal of the ovary and its Fallopian tube.   Sporadic Cancer:  Cancer occurring in people with no family history and no inherited cause.   Staging- Levels of cancer advancement in the body.   Stoma- Artificially created opening in the abdomen.   Surveillance - Regularly scheduled tests to detect cancer   Survivor- Individual diagnosed with Lynch cancer and has contracted a Lynchcancer.   Syndrome- A collection of abnormal physical characteristics occurring in an individual   Transvaginal Ultrasound - High-resolution images of the uterus and ovaries; may be used to screen for endometrial or ovarian cancer   Urine Cytology - Examination of the urine to detect cancer and inflammatory disease in the urinary tract.   Urologist- A physician who specializes in the urinary tract.   VUS - A variant of uncertain significance (VUS) is a genetic sequence change which association with hereditary risk is currently unknown.  Persons with a VUS should be managed as though they have Lynch syndrome.    
Saturday, 16 February 2013 | 2696 hits
    WELCOME TO THE LSI LIBRARY! Offering a host of resources on Lynch syndrome.     GUIDELINES:   Revised guidelines for the clinical management of Lynch syndrome (HNPCC): recommendations by a group of European experts.  Gut. 2013 Jun;62(6):812-23. doi: 10.1136/gutjnl-2012-304356. Epub 2013 Feb 13. EGAPP Recommendations  Translation Updated July, 2012 Revised Bethesda Criteria, 2004 Amsterdam II Criteria American College of Gastroenterology Guidelines February 2009 AGA Guidelines for Colorectal Cancer March 2008 Guidelines Tor The Clinical Management Of Lynch Syndrome by Dr. Hans Vasen 2007 Society of Gynecological Oncologists 2007   (More detailed information) Practice Parameters of Patients with Dominantly Inherited Colon Cancer the American Society of Colon and Rectal Surgeons 2003  Update 2006 Genetic Counseling Considerations In the Evaluation of Families for Lynch Syndrome-A Review - Journal of Genetic Counseling, National Society of Genetic Counselors, Inc. 2010 NCCN Guidelines - Need to Register To Obtain Access NCHPEG Tools and Guide PDFs  2013 Revised 10/04/2013   CLINICAL TRIALS AND REGISTRIES One of the greatest ways we could pay forward for everything those who have cared for us have done in order to enhance our quality of life is to enroll in Familial Cancer Registries and Clinical Trials so future generations may continue to protect their families and save lives. Please become involved in these activities as they are the most important lifesaving measures taken today.   Familial Cancer Registries Italy:  Registro Tumori Collorettali Lynch Syndrome CAPP3 Aspirin Study, Preparing to Recruit 3,000 Individuals To Determine Daily Dose of Aspirin to Reduce Lynch Syndrome Tumors In Those With Lynch Syndrome.  Register Now for Study Information Once Study Is Released.   Physician Information and Recruitment.   Lynch Syndrome Clinical Trials   National Institute of Health Clinical Trials - Includes Not Yet Recruiting, Recruiting, In Process and Completed Trials for Lynch Syndrome. Study by Ohio State University for Cryopreservation of Eggs For Women Undergoing Treatments  or SurgeriesWhich May Affect Fertility Study by Helen and Harry Gray Cancer Center at Hartford Hospital (Connecticut) regarding Hyperbaric Oxygen and Ability to Improve Erectile Function  Following Surgery for Prostate Cancer Massachusetts General Hospital - Preoperative Staging of Pancreatic Cancer Using Super Paramagnetic Iron Oxide Magnetic Reasonance Imaging Pfizer, Institut National du Cancer (France)- Biological, Pathological and Imagery Markers In The First Line Treatment Of Metastatic Clear Cell Renal Cell Carcinoma Axo-Gen, Vanderbilt Ingram Cancer Center, Nashville, TN  Nerve Reconstruction In Individuals Using Avance In Subjects Who Undergo Robotic Assisted Prostatectomy For Treatment of Prostate Cancer Eisai, MD Anderson, Houston, TX - Dalteparin for Venous Thromboembolism (VTE) Prophylaxis in Pancreatic Cancer Patients European Association for Endoscopic Surgery (Italy) - Transanal Endoscopic Microsurgery vs. Endoscopic Submucosal Dissection For Large Rectal Adenomas Hospital Donostaia, San Sebastian, Spain Study to Evaluate the Efficacy of Pravastatin on Survival and Recurrence of Advanced Gastroesophageal Cancer Gifu, Japan - Republic of Korea  Comparing Covered Self-expandable Metallic Stent (SEMS) Above/Across the Sphincter of Oddi Seoul National University Hospital - Cyclooxygenase-2 Inhibitor for Adjuvant Anticancer Effect in Patients With Biliary-pancreas Cancer Universitaetsspital-Basel - Influence of N-Acetylcysteine on Morbidity, Oxygenation and Cytokine Levels in Partial or Total Esophagectomy for Cancer Santa Clara Valley Medical Center, San Jose, CA.  Bowel Preparation for Inpatient Colonoscopy Novartis - Germany  An Open Label, Single Arm Trial to Characterize Patients With Metastatic Renal Cell Carcinoma Treated With Everolimus After Failure of the First VEGF-targeted Therapy (MARC-2 Medical Center of Fudan University - Shanghai New Adjuvant Chemotherapy of Non Resectable Liver Metastasis of Colorectal Cancer Without Bleeding, Obstruction David C. Pratt Cancer Center at St. Johns Mercy, St. Louis, Missouri  Stereotactic Body Radiotherapy for Unresectable Pancreatic Cancer - Stereotactic Body Radiotherapy for Liver Tumors, Stereotactic Body Radiotherapy for Prostate Cancer Bayer Corporation Study to Observe Safety and Efficacy of Nexavar in Treatment of Kidney Cancer Buenos Aires, Argentina  Epoetin Alfa (Hemax®) Phase IV Study in Chemotherapy Induced Anemia West China Hospital at Sichuan University  Effective Study of Preoperative Short-course Radiotherapy for the Advanced Resectable Rectal Cancer Daniel Stephen Engeler Safety Study of Bipolar Versus Monopolar Transurethral Resection of Bladder Tumors Case Comprehensive Cancer Center and the Medicis Pharmaceutical Company:  Forehead Scars Following Mohs Micrographic Surgery and Reconstruction for Skin Cancer Myriad Genetics-Various U.S. Locations  Study Comparing Optimized 5-FU Dosing and Standard Dosing in Metastatic Colorectal Cancer Patients Treated With mFOLFOX6 Odense University Hospital - Denmark CUP Project PET/CT  Applied Early In the Work Up For Metastasizing Of An Unknown Primary Tumor  Mayo Clinic, Jacksonville, Florida  Improving Complete Endoscopic Mucosal Resection (EMR) of Colorectal Neoplasia NCI - Warrent Grant Magnuson Clinical Center Genetic, Clinical, and Epidemiological Study of Individuals and Families at High Risk of Cancer  Focuses on Familial Brain Cancers and Bladder Cancers, Bone Cancers Bristol-Myers Squibb  First-Line Gemcitabine, Cisplatin + Ipilimumab for Metastatic Urothelial Carcinoma Novartis - Memorial Sloan Kettering  BKM120 in Metastatic Transitional Cell Carcinoma of the Urothelium Glaxo-Smith-Klein  Memorial Sloan Kettering  Gemcitabine and Pazopanib in Chemotherapy Naïve Patients With Advanced/Metastatic Urothelial Carcinoma Ineligible for Cisplatin-based Chemotherapy Memorial Sloan Kettering Gemcitabine and Cisplatin as Neoadjuvant Chemotherapy in Patients With High-Grade Upper Tract Urothelial Carcinoma ImClone  Study of Ramucirumab or IMC-18F1 With Docetaxel or Docetaxel Alone as Second-Line Therapy in Participants With Bladder,Urethra, Ureter, or Renal Pelvis Carcinoma Sanofi- Aventus  European Organization of Research and Treatment for Cancer. Efficacy of FOLFOX Verus FOLFOX plus Afibercept in K-ras Mutant Patients with Resectable Liver Metastases (BOS3)       LECTURE AND POWER POINT PRESENTATIONS   Power Point Presentation by Dr. Hans Vasen and Dr. Patrick Lynch, Presented At the Insight Conference Power Point Presentation by Dr. Henry T. Lynch, MD and Jane T. Lynch, BSN  The Extraintestinal Cancers of Lynch Syndrome Power Point Presentation on MSI - IHC Pathological Tumor Testing Epidemiology of Colon Cancer, Presented to the San Diego Academy of Family Physicians 11/14/2009 UC San Francisco 2009 Slides  MSI Basics for Pathologists -  Grener The Power of Sustainable Changes in Diet and Lifestyle by Dean Ornish, M.D., founder and president of the nonprofit Preventive Medicine Research Institute in Sausalito, California. (A one hour plus program courtesy of MD Anderson Cancer Center.) Lynch Syndrome: Diagnosis and Screening in 2008 Heather Hampel, MS, GCG; Wendy Frankel, MD; Jonathan Terdiman, MD; Roger C. Haggitt Gastrointestinal Pathology Society Session - May 18, 2008   ASCO Article Outlining Study of Taking Effective Family Histories Revised 7/24/2012       CME ACCREDITED CLASSES Free CME Credits and Classes Through NCHPEG and the AMA - Colorectal Cancer, Is Your Patient At High Risk? Genetics Cancer Review - Expires 2014 ASCO 1.5 CME Credits  $25 - $32 Preimplantation Genetic Testing - Expires 2014 (Cleveland Clinic) Harvard Medical School: Genetics - Colon Cancer Expires 7/6/2013 CME Genetics: Colon Cancer (Expires 6/17/2012)  One hour course, 1 CME, intended to teach indiviudals to identify those with Lynch syndrome as well as discusses screening recommendations. Cost: $20 CME Activity: The Lynch Syndrome Up to date education accredited by the American College of Physicians with faculty involving top experts in Lynch syndrome.  Expires 7/19/2013  $260 for one year. American Medical Association - Identifying and Managing Hereditary Cancer Risk Genomic Medicine - Family History 1 Credit, Cost $5 Genomic Medicine - Colorectal Cancer Medscape CME Metastatic Colorectal Cancer Tumor Board (oncologists, surgeons, gastroenterologists, radiologists, interventional radiologists, nurses, pharmacists, and other healthcare professionals who treat and care for patients with advanced/metastatic colorectal cancer.) Cerebral primitive neuroectodermal tumor in an adult with a heterozygous MSH2 mutation Alexander F. Jeans, Ian Frayling, Bharat Jasani, Lucy Side, Claire Blesing & Olaf Ansorge Oncologic Issues through Audio Digest Foundation 1 CME Credit Updated 10/4/2013         National Center for Biotechnology Information (NCBI) Gene Tests - information on anything and everything that is happening with Lynch syndrome research and technology. Gene Reviews - Hereditary Non-Polyposis Colon Cancer, an excellent, comprehensive resource compiled by Dr. S. Gruber and Wendy Kohmnan, MS of the Cancer Genetics Clinic, Michigan State University, Ann Arbor, Michigan. Guidelines for the Clinical Management of Lynch Syndrome by Dr H F A Vasen Department of Gastroenterology, Leiden University Medical Centre and The Netherlands Foundation for the Detection of Hereditary Tumours National Cancer Institute, 6116 Executive Boulevard, Bethesda, Maryland 800-422-6347   Psychosocial Issues in Hereditary Colon Cancer Syndromes Modified 7/25/2011     PUBLICATIONS     Risks Of Primary Extracolonic Cancers Following Colorectal Cancer In Lynch Syndrome  Sept. 2012   Daily Long Termed Aspirin Use In Lynch Syndrome Carriers Reduces Colorectal Cancers England study conducted by Sir John Burn indicates consistent long termed aspirin use (mean 25 months) at 600 mg a day significantly reduces primary colorectal cancers in those with Lynch syndrome.  Substantiates new study to determine effective dosage.   Aspirin Confers Long Term Protective Effect in Lynch Syndrome Patients, Jacqueline K. Beels, Phd.   From the Lancet - Effects of Regular Aspirin On Long Term Cancer Incidence and Metastasis 5/2012   Finnish Researchers ConcludeStudy on LS Mortality   9/5/2012  Multi national study in Spain and in Holland indicates cancer-affected LS patients with the AA genotype have shorter telomeres than those with GG and MMR gene mutation carriers with hTERT rs2075786 are at high risk to develop a LS-related tumor at an early age.     1/2013  Collaborative study on genetic testing on first degree relatives (FDRs): Genetic testing may be underutilized by FDRs at risk for LS. The economic feasibility of screening persons with CRC for LS depends on optimizing family-wide uptake of genetic testing. Future research and clinical efforts should focus on ways to overcome barriers to genetic testing. DIAGNOSIS AND MANAGEMENT   Guidelines intended to assist physicians and medical professionals in understanding  and diagnosing Lynch syndrome developed by the National Society of Genetic Counselors and the Collaborative Group of the Americas-- Addresses germline testing and targeted presumptive testing of tumors  12/2011 (Cost) Diagnostic Approach and Management of Lynch Syndrome - American Cancer Society Lynch Syndrome: Barriers to and facilitators of screening and disease management, Hered Cancer Clin Pract. 2011 Sep 7;9:8 addresses a Canadian study which concludes persons with Lynch syndrome experience multiple barriers to disease management and the necessity of a coordinated system of local services capable of providing integrated, efficient health care and follow-up. The Family History Score Tool Identifies High Risk Families for Colorectal Cancer, from the Taussig Cancer Institute, Cleveland Clinic, Cleveland, Ohio 44195, USA andThe Sanford R. Weiss, M.D. Center for Hereditary Colorectal Neoplasia, Cleveland Clinic, Cleveland, Ohio 44195, USA 5/25/2010 Calculation of Risk of Colorectal and Endometrial Cancer Among Patients With Lynch Syndrome:  Gastroenterology 2009 - Largest study, to date, on the high lifetime risk of cancers of those affected by Lynch Syndrome. Genetics in Medicine: March/April 2003 - Volume 5 - Issue 2 - pp 84-91 The genetic family history as a risk assessment tool in internal medicine Frezzo, Theresa M. MS; Rubinstein, Wendy S. MD, PhD; Dunham, Daniel MD, MPH; Ormond, Kelly E. MS Methods: Seventy-eight patients seen in a division of internal medicine were randomized into two groups, which completed a questionnaire or underwent a pedigree interview. Chart notes were compared to both study tools. Results: Sixty-two (79.5%) of the 78 participants scored at increased risk for at least one category. Either of the two study tools found significantly more people at high risk (48/78, 61.5%) than the chart review (31/78, 39.7%) (P = 0.01) Conclusions: Approximately 20% of patients in an unselected internal medicine practice were at an increased risk that was not documented in reviewed chart notes. Targeted family history analysis reveals patients who require increased medical surveillance, preventive measures, or genetic counseling/testing. Genetics Home Reference from Gene Tests from the National Institute of Health. Lynch Syndrome: Still Not A Familiar Picture, by Hess Fredrick From the World Journal of Surgical Oncology a very nice article articulating the misunderstanding many physicians still have in the diagnosis of Lynch syndrome The Role of Genetic Assessment in Determining a Patient's Risk (for Physician Assistants) Michael A. Rackover PAC MS and Doug Scott MS  - Journal of the American Academy of Physician Assistants Genetics in Medicine:  May 2007 - Volume 9 - Issue 5 - pp 290-297  doi: 10.1097/GIM.0b013e31804b45db  The impact of predictive genetic testing for hereditary nonpolyposis colorectal cancer: three years after testing  Conclusion:  Long-term data indicates appropriate screening and improved psychological measures for non-carriers with no evidence of undue psychological distress in carriers of hereditary nonpolyposis cancer mutations. From Genetics in Medicine:  May 2007 Volume 9 Issue 5  pp 290-297    The impact of predictive genetic testing for hereditary nonpolyposis colorectal cancer: three years after testing Collins, Veronica R. Phd; Meiser, Bettina PhD; Ukoumunne, Obioha C PhD; Gaff, Clara PhD; St John, D. James MD; Halliday, Jane L. PhD  Conclusion:  Long term data indicates appropriate screening and improved psychological measures for non-carriers, with no evidence of undue psychological distress in carriers of Lynch syndrome. From Genetics in Medicine, October 2009 Volume 11, Issue 10, pp 728-734 Communication, encouragement, and cancer screening in families with and without mutations for hereditary nonpolyposis colorectal cancer: A pilot study; Ersign, Anne L. PhD; Williams, Janet K. PhD; Hadley, Donald W. MS, CGC; Koehly, Laura M. PhD  Conclusion:  Respondents who communicated about risk and received encouragement to screen from a great proportion of named family members and those who had a greater proportion of named family members involved in both communication and encouragement were significantly more likely to have a shorter time interval since last colonoscopy.  Identifying patterns of interaction within at risk families, regardless of gene mutation satus, may be one avenue for promoting screening adherence. History and Molecular Genetics of Lynch Syndrome in Family G - A Century Later ---- JAMA  Julie A. Douglas PhD, Stephen B. Gruber MD Phd, Karen A. Meister MS CGC, Joseph Bonner MS , Patrice Watson Phd, Anne Krush MS, Henry T. Lynch MD  Conclusion:  Within the last decade, molecular diagnostic testing has transformed the care of Family G and other Lynch syndrome families in which a pathogenic mutation has been identified. Prophylactic Surgery to Reduce the Risk of Gynecologic Cancers in the Lynch Syndrome, Kathleen M. Schmeler, MD, Henry T. Lynch, MD, Lee-May Chen, MD, Mark F. Munsell, MS, Pamela T. Soliman, MD, Mary Beth Clark, MSW, Molly S. Daniels, MS, Kristin G. White, BS, Stephen G. Boyd-Rogers, RN, Peggy G. Conrad, MS, Kathleen Yl Yang, MD, Mary M. Rubin, PhD, Charlotte C. Sun, Dr.PH, Brian M. Slomovitz, MD, David M. Gershenson, MD and Karen H. Lu, MD  Conclusion:  Findings suggest that prophylactic hysterectomywith bilateral salpingo-oophorectomy is an effective strategyfor preventing endometrial and ovarian cancer in women withthe Lynch syndrome.(Since publication, it has been noted by MD Anderson there have been a few cases of endometrial cancer despite hysterectomy, however the conclusion remains the same.) Risk Assessment, Genetic Testing, and Management of Lynch Syndrome - Shilpa Grover, MD, MPH and Sapna Syngal, MD MPH, Boston, Massachusetts Prospective Screening for Lynch Syndrome In a Cohort of Colorectal Cancer Surgical Patients in a Community Hospital:  Albuquerque and Presbyterian Hospital, Albuquerque, NM  Conclusion:  A screening protocol for detecting LS in newly diagnosed CRC patients using MMR assessment identified LS in at least 8% of screened patients and in at least of 2.0% of all CRC resected. Clinical suspicion misses a significant proportion of patients who have LS. This protocol is a significant step forward in the timely identification of LS in a community hospital setting. Diagnosis and Management of Hereditary Colorectal Cancer Syndromes: Lynch Syndrome As A Model, Henry T. Lynch NationalCenterfor Biotechnology Information (NCBI) Gene Tests  providing information on anythingand everything that is happening with Lynch syndrome research and technology. 12/13/2010 Netherlands study indicates individuals with LS are good candidates for chemo prevention.  The response of MMR-Deficient tumors to standard chemotherapy and radiotherapy differs from that of MMR-proficient tumors.  Efforts should be directed toward designing tailored strategies concerning both chemo prevention and medical cancer treatment for individuals affected with Lynch syndrome. A excellent study from Kaiser Permanente and the Marshfield Clinic regarding theunderdiagnosis of Lynch Syndrome.  May 2012 A study from Canada assessing the barriers to diagnosis and management of Lynch syndrome:  Lynch Syndrome Barriers To and Facilitators of Screening and Disease Management  9/2011, Hereditary Cancer in Clinical Practice 2011doi:10.1186/1897-4287-9-8 THE CANCERS   The Risk of Extracolonic Primary Cancers Following Colorectal Cancer in Lynch Syndrome  An international study of 764 carriers of Lynch syndrome.  September, 2012 Colorectal And Other Cancer Risks For Carriers and Non-Carriers From Families With A DNA Mismatch Repair Gene Mutation - A Prospective Cohort Study/  An International Study That Is a Must Read Discussing the Risks of Specific Cancers of Lynch Syndrome And One Of The First Comprehensive Studies On The Risk of Breast Cancer Within Lynch Syndrome MD Anderson studies the spectrum of Lynch syndrome cancers. determining those with LS can present with cancers outside the spectrum of LS.  A good paper citing information that may be helpful for diagnosis and screening for patients with Lynch Syndrome.  6/20/2012 SPECIFIC CANCERS   BIALLELIC MUTATIONS UT Southwest article regarding important information on biallelic mutations Canadian study describes a novel biallelic condition  10/2012   BLADDER CANCER, URETER CANCER, RENAL PELVIS CANCERS   7/25/2012  A study from Canada sends a strong message: . MSH2 carriers should be offered screening for cancer of the entire urothelium, as they are at an increased risk for both bladder AND upper tract cancers Risk of Urothelial Bladder Cancer In Lynch Syndrome Is Increased, In Particular, Among MSH2 Mutation Carriers JMedGenet2010  Netherlands Study, Radboud University From Pubmed:  Reviews in Urology: 2003 Winter 5(1) 49-53    Urothelial Carcinoma in a Man with Hereditary Nonpolyposis Colon Cancer, by Dean L. Lenz, MD and Lewis E. Harpster, MD, Department of Surgery, Division of Urology, Pensylvania State University, Milton S. Hershey Medical Center, Hershey, Pennsylvania. Synopsis:  HNPCC should be considered in any individual with a developed upper tract urothelial cancer or a suggestive family history. Risk for Urologic Cancer Linked to Risk for Colorectal Cancer WebMD CME Library Upper Urinary Tract  Carcinoma In Lynch Syndrome Cases - Swedish study of U.S. participants from Creighton University data.  Majority of participants had MSH-2 and sustained ureter cancer a mean 15.8 years after a primary cancer.  Median age was 62.  Equal gender ratio and high grade tumors similar to that in the geneal population. A Study From France:  21.3% Of All Upper Urinary Tract Urothelial Carcinomas May Have Underlying Lynch Syndrome As a Cause. 6/15/2012 Impact of Distal Ureter Management on Oncologic Outcomes Following Radical Nephroureterectomy for Upper Tract Urothelial Carcinoma   Collaborated letter on the gold standard for urinary tract urothelial carcinoma.  July 2012     BREAST CANCER   8/21/2012  Dr. James Ford of Stanford University addresses the question, "Is Breast Cancer A Part of Lynch Syndrome?"  A "Must Read" for genetic counselors and medical professionals  Evidence of Breast Cancer As An Integral Part Of Lynch Syndrome   Swiss study of six families of hundreds of persons with 92 female mutation carriers with MLH1 and MSH2 mutations, mean age 49 to 50 years old, consistent with the mean cancer rate of the average population (56.5 years of age) MSI present in 26 of 37 (70.3%) and altered MMR expression in 16 of 22 (72.7%) Lynch syndrome carriers.  Conclusion was findings presented a strong molecular evidence for a pivotal role of MMR deficiency in breast cancer development in Lynch syndrome.  10/27/2011 Lynch Syndrome-Associated Breast Cancers:  Clinicopathologic Characteristics of a Case Series from the Colon Cancer Family Registry Walsh, Buchanan, Cummings, Pearson, Arnold, Clendenning, WAlters, McKeone, Spurdle, Hopper, Jenkins, Phillips, Suthers, George, Goldblatt, Muir, Tucker, Pelzer, Gattas, Woodall, Parry, Macrae, Haile, Baron, Potter, LeMarchand, Bapat, Thibodeau, Lindor, McGuckin, Young Authors' Affiliation: Familial Cancer Laboratory, Molecular Cancer Epidemiology Laboratory, Queensland Institute of Medical Research, University of Queensland School of Medicine, University of Queensland Centre for Clinical Research, Genetic Health Queensland, Royal Brisbane and Women's Hospital, Herston, Mater Medical Research Institute, South Brisbane, Queensland, Australia; School of Population Health, Centre for MEGA Epidemiology, University of Melbourne, Melbourne, Australia; Department of Colorectal Medicine and Genetics, The Royal Melbourne Hospital, Parkville, Victoria, Australia; South Australian Clinical Genetics Service, North Adelaide, Department of Paediatrics, University of Adelaide, South Australia, Australia; Genetic Services of Western Australia, King Edward Memorial Hospital, Subiaco, School of Paediatrics and Child Health, University of Western Australia, Nedlands, Western Australia, Australia; Clinical Genetics Service, Prince of Wales Hospital, Randwick, New South Wales, Australia; Northern Regional Genetics, Auckland Hospital, University of Auckland, Auckland, New Zealand; Keck School of Medicine, University of Southern California, Los Angeles, California; Dartmouth Medical School, Hanover, New Hampshire; Fred Hutchinson Cancer Research Center, Seattle, Washington; Cancer Research Center of Hawaii, University of Hawaii at Manoa, Honolulu, Hawaii; Samuel Lunenfeld Research Institute, Mount Sinai Hospital, University of Toronto, Toronto, Canada; and Mayo Clinic, Rochester, Minnesota. Unusual Presentation of Lynch Syndrome London Study 2009, Male Breast Cancer Lynch Syndrome Associated Breast Cancers - Clinicopathological Characteristics Of A Case Study From The Colon Cancer Registry - David Walsh, MD, Familial Cancer Laboratory Queensland  51% of all breast cancers in individuals with Lynch syndrome indicated MMR deficiency.  Breast cancer may therefore represent a valid tissue option for the detection of MMR deficiency in which spectrum tumors are lacking. Early Onset Breast Cancer In A Lebanese Family With Lynch Syndrome Due to MSH-2 Gene Mutation, Rizk Hospital, Beirut, Lebanon 5/28/2009 Lynch Syndrome- The Influence of Environmental Factors On Extracolonic Cancer Risk on hMLH1 C.c1528T Mutation Carriers and Their Mutation Negative Sisters South Africa Study - Extracolonic cancer occurred in 14 percent of the mutation carrier females. Breast cancer was the most extracolonic cancer. Colorectal And Other Cancer Risks For Carriers and Non-Carriers From Families With A DNA Mismatch Repair Gene Mutation - A Prospective Cohort Study/  An International Study That Is a Must Read Discussing the Risks of Specific Cancers of Lynch Syndrome And One Of The First Comprehensive Studies On The Risk of Breast Cancer Within Lynch Syndrome J Clin Oncol 30, 2012 (suppl 4; abstr 413) Breast Cancer In Irish Families With Lynch Syndrome Breast cancer occurred at an early age and was more common than prostate cancer in Irish Lynch Syndrome pedigrees. All reported breast cancer cases were in kindreds with MSH2 or MSH6 mutations. Enhanced breast cancer screening may be warranted in certain Lynch Syndrome kindreds. Breast Cancer and South African Females, 2010, Lynch syndrome: the influence of environmental factors on extracolonic cancer risk in hMLH1 c.C1528T mutation carriers and their mutation-negative sisters.  Breast cancer was double that of those studied without mutations.     COLORECTAL CANCER/SMALL INTESTINE   Small Bowel Adenocarcinoma Phenotyping, a Clinical Prognostic Study, Suggests molecular alterations in small bowel adenocarcinomas (SBA) are closer to those in colorectal cancer (CRC) than gastric cancer, with low levels of HER 2 overexpression and high frequencies of KRAS mutations. Seemingly higher frequency of MMR deficiency (dMMR) than in CRC may be explained by higher frequency of LS in SBA patients. A dMMR phenotype was significantly associated with a non-metastatic tumour (P=0.02). A trend for a good prognosis and a duodenum or jejunum primary site was associated with dMMR.British Journal of Cancer advance online publication, 5 November 2013; doi:10.1038/bjc.2013.677 www.bjcancer.com. 6/2012  University of Groeningen, Netherlands, discusses small bowel surveillance for Lynch syndrome.  Recent data indicates capsule endoscopy shows promising results for those with Lynch syndrome and who have a 5% lifetime risk of contracting small bowel cancer. Parent of Origin Effects On Age At Colorectal Diagnosis Large collaborated study of many institutions concluded affected daughters of affected fathers were, on average, younger than affected sons of affected mothers.  Results need confirmation in an independent study before cliinical significance can be determined. Distinct Mutations in MLH1 And MSH2 Genes in Hereditary Non-Polyposis Colorectal Cancer HNPCC Families From China 1/2011 According to Aukland, New Zealand study, individuals with more extensive colonic  resections have a lower risk of metastasized cancers than those receiving less extensive resections. DNA Repair System Affects Colon Cancer Recurrence and Survival - Mayo Clinic Study data of more than 2,000 clinical trial patients who had Stage 2 and Stage 3 cancers, and were treated with 5FU chemotherapy protocol, concluded patients with mismatched repair had lower rates of tumor recurrence, longer remissions, fewer metasteses and better survival rates compared to those without defects. 12/2010 Expeditious colonoscopy following discovery of mutation status in patients may benefit newly identified mutation carriers by addressing objective risks for cancer and alleviating underlying emotional distress responses to genetic risk information. Impact of Colonoscopy Screening On Individuals At High Risk for Hereditary Nonpolyposis Colorectal Cancer HNPCC  Spain - Conclusion, Colonoscopy is effective in detecting colorectal adenomas and cancer in individuals with HNPCC - Men have a greater number of colorectal adenomas  2011 The Impact Of Colonoscopy Screening In Male And Female Lynch Syndrome Carriers With An MSH-2 Mutation A study from Newfoundland Canada  Study of repeat cancers between screening intervals. Within two years of a colonoscopy, 20% of the males and 7% of the females developed an interval of CRC.  CRC development may further be reduced by decreasing the interval to one year and improving quality of colonoscopy. Infiltration Of Lynch Colorectal Cancers By Activated Immune Cells Associates With Early Staging Of The Primary Tumor And Absence Of Lymph Node Metastases Leiden University Medical Center, 1/18/2012  Conclusion:  The immune system assumes an important role of counteracting the progression of Lynch colorectal cancers and in selecting abnormal HLA Class I phonetypes.  Findings support the development of clinical strategies that explore the hosts natural anti-tumor immune responses. Colonoscopic screening at 3-year intervals more than halves the risk of CRC, prevents CRC deaths, and decreases overall mortality by about 65% in HNPCC families.Controlled Fifteen Year Trial on Screening For Colorectal Cancers In Families With Hereditary Polyposis Colorectal Cancer. May 1, 2000  Helsinki University Central Hospital, Helsinki Colonoscopic surveillance reduces the risk of colorectal cancer in people with a strong family history. This study confirms that members of families with hereditary non-polyposis colorectal cancer require surveillance with short intervals. Prevention of Colorectal Cancer By Colonoscopic Surveillance in Individuals With A Family History of Colorectal Cancer: 16 Year Prospective Follow Up Study Family Cancer Group, Cancer Research UK Colorectal Cancer Unit, St Mark's Hospital, Harrow, Middlesex HA1 3UJ.  BMJ  11/5/2005 1/2013  Rectal Cancer and the Lynch syndrome: ...less common than colon cancer,RC is an important component of LS and may be overrepresented in MSH2 mutation carriers. Given high risk of synchronous or metachronous cancers, appropriate surveillance for second malignancies is necessary.   ENDOMETRIAL, CERVICAL AND UTERINE CANCERS Genetic Testing Strategies in Newly Diagnosed Endometrial Cancer Patients Aimed at Reducing Morbidity or Mortality from Lynch Syndrome In the Index Case or Her Relatives  (Allison Stewart, PhD, CDC Consultant)  9/16/2013 Risk of Colorectal Cancer after Diagnosis of Endometrial Cancers:  A Population-Based Study article by Science Daily  October, 2012 7/2012  From Advances in Anatomic Pathology:  The risk of gynecologic malignancy in women with LS approaches and even exceeds that of CRC. Gynecologic malignancies are often the sentinel cancers in these patients.  Article reviews the morphologic and clinical features/schemas in LS EC and highlight limitations of restrictive aged-based screening strategies, uncertainty in current clinical schemas and equivocal results of morphologic studies of LS EC. With uncertainty of histologic and clinical schemas, and following developments in CRC, reflex testing of all/vast majority of newly diagnosed EC for LS should be considered. 8/2012  From the Archives of Gynecology and Obstetrics, study reinforces endometrial sampling is essential for women with Lynch syndrome. 8/2012  From Obstetrics and Gynecology:  Genetic Testing for Lynch Syndrome, An Inherited Cancer of the Bowel, Endometrium and Ovary  - Very nice article with good forms for taking family histories and a nice graph of a standard management plan. Molecular Analysis of endometrial pathogenesis in Lynch syndrome, J Clin Onco 29 2011, MD Anderson, Ottawa University, concluded hyperplasia is part of the pre-invasive spectrum of LS associated EC.  While PTEN loss was common in both LS and sporadic EC, PIK3CA and CTNNB1 mutations were more frequent in sporadic EC than LS EC. Our results indicate that loss of PTEN expression is an early event in sporadic EC and that other common mutations in sporadic EC may have a lesser role in LS associated EC development. Association of Lynch Syndrome and Risk of Invasive Cervical Cancer, 2010 ASCO Conference, J Clin Oncol 28:15S 2010  Conclusion:  Cervical cancer is associated with Lynch syndrome and the histology of cervical cancers in MMR mutation carriers may vary from expected population standards. Primary Peritoneal Cancer After Bilateral Salpingo-Oophorectomy in Two Patients With Lynch Syndrome. Schmeler, Kathleen M, MD, Daniels, Molly S; Soliman, Pamela T, MD MPH;  Broaddus, Russel R, MD PhD; Deavers, Michael T. MD; Vu, Thuy M. MS; Chang, George J. MD, MS; Lu, Karen H. MD Endometrial Cancer and Lynch Syndrome, Moffit Hospital, MD Anderson Risk Reducing Surgery in Women At Hereditary Risk of Gynaecological Cancer Czech study, 6/2011  Risk reducing Salpingo Oopherectomy or Hysterectomy is the most effective strategy for gynecological cancer prevention in susceptability gene mutation carriers so far. Risk of Endometrial Cancer For Women Diagnosed With HNPCC Related Colorectal Carcinoma - Conclusion:  One quarter of women diagnosed with Lynch Syndrome associated CRC developed EC within ten years.  University of Queensland 12/1/2010 Testing Women With Endometrial Cancer To Detect Lynch Syndrome, University of British Columbia 6/2011  Women may not be identified by Amsterdam 2 criteria.  IHC triage at any age, having at least 1 FDR, with a Lynch associated cancer, is a cost effective strategy for detecting Lynch syndrome. US/Canadian study recommends reflex testing for all endometrial cancers. 7/2012 Researchers Propose Screening For Lynch Syndrome In All Patients With Newly Developed Endometrial Cancer 4/2011 Hysteroscopy In Diagnosing Lynch Syndrome  Endometrial Cancer Screening In Patients With Lynch Syndrome  J Clin Oncol 29: 2011 (suppl; abstr 5108) Association of Lynch Syndrome and Invasive Cervical Cancer  J Clin Oncol 28:15s, 2010 (suppl; abstr 1501)   OVARIAN CANCER   7/6/2012  Newfoundland study indicates gynecological screening did not result in earlier gynecologic cancer detection and despite screening two young women died from ovarian cancer suggesting that prophylactic hysterectomy with bilateral salpingo-oophorectomy be considered in female mutation carriers who have completed childbearing. A Swedish and Danish study indicated ovarian cancer with Lynch syndrome presents at young age with early non-serous tumors indicating a family history of colorectal and endometrial cancers should be specifically considered in such cases. Ovarian Cancer Linked To Lynch Syndrome Typically Presents as Early Onset Non-Serous Epithelial Tumors  Gynecol Oncol. 2011 Jun 1;121(3):462-5. Epub 2011 Mar 9. Endometrial and Ovarian Cancer Screening and Prevention In Women With Lynch Syndrome  11/31/2012  Prevalence of loss of expression of DNA mismatch repair proteins in primary epithelial ovarian tumors  Study demonstrated the loss of MMR protein expression in 10.1% of endometriosis-associated ovarian carcinomas.    PANCREATIC CANCER   Risk of Pancreatic Cancer In Lynch Syndrome Families 2009, JAMA  Dana Farber, Michigan State, Conclusion:  The risk of pancreatic cancer is eight times higher than the risk of the general population Lynch Syndrome Tied to Breast and Pancreatic Cancer 2/21/2012 Hereditary, Pancreatic and Hepatobiliary Cancers  International Journal of Oncology 2011  Paper discussing the risk and studies regarding pancreatic cancer and Lynch syndrome   PROSTATE CANCER   From the American Journal of Medical Genetics, Part A, Vol 121A Issue 2, Pgs 159-162, pub 3/26/2003, European researchers publish case study of prostate cancer in Lynch syndrome. Prostate Cancer Found In Lynch Syndrome Patient Neuendocrine type prostatic adenocarcinoma with microsatellite instability in a patient with Lynch syndrome December of 2010, University of Nebraska Medical Center, Findings suggested HGPIN-NE is a percursor of invasive SCC and also that prostatic SCC can develop in a patient with Lynch syndrome. Hereditary Prostate Cancer As A Feature of Lynch Syndrome U. Of Mich, Ann Arbor, 3/2011  35 tumors underwent MSI Analysis, 2 of which were MSI high and 1 of which was MSI-low. Conclusion: PCa may arise in Lynch syndrome due to defective DNA mismatch repair. Hereditary, Pancreatic and Hepatobiliary cancers  - International Journal of Oncology, 2011  Paper discussing risk and studies regarding pancreatic cancer and Lynch syndrome. Manchester UK study discovers a ten fold risk of prostate cancer has been determined with MSH2.  Other significant findings are also noted.   Ohio State Study: Prostate cancer incidence was not increased in this relatively large cohort of LS patients.   SKIN CANCER/MUIR TORRE-GLASTIOBLOMA   8/6/2012  Dr. Maxwell Fung, University of California - Davis, discusses IHC - MSI testing of tumors for Muir Torre   2012 Article, University of California-Davis, Mt. Sinai Dermatology Online  Muir Torre - Turcot Syndrome overlap? 8/2012  MSH-6 Family Detected With Muir Torre 7/2012  Mismatch Repair Protein Deficiency Is Common In Sebaceous Tumor Neoplasms 7/2012  Polypoid Adenoid Carcinoma Detected in the Efferent Jejunal Loop following gastrectomy in a Muir Torre Patient.   Acute Myloid Leukaemia Associated With Muir Torre Variant Of Hereditary Non Polyposis Colon Cancer (HNPCC) "Implications for inherited and acquired mutations in DNA mismatch repair genes  9/13/2011 British Journal of Haematology , Volume 156, Issue 2, January 2012 Glastiobloma Multiforme In the Muir Torre syndrome: From Johns Hopkins A New Mutation In Muir Torre Associated With Familiar Transmission Of Different Gastrointestinal Adenocarinomas - Hungary The Frequency of Muir-Torre Syndrome Among Lynch Syndrome Families: Christopher D. South , Heather Hampel , Ilene Comeras , Judith A. Westman , Wendy L. Frankel , Albert de la Chapelle, JNCI Journal of the National Cancer Institute Advance Access published February 12, 2008   Italian Researchers have discovered prevelance of Muir Torre associated with the liver in a Lynch syndrome family. From the Journal of the National Cancer Institute, Volume 100, No. 4, pp 277-281, published online 2/12/2008 by the Oxford University Press is of Muir-Torre Syndrome Among Lynch Syndrome Families bythe Division of Gastroenterology, Hepatology and Nutrition (CDS), Department of Pathology (WLF), and theHuman Cancer Genetics Program, Comprehensive Cancer Center (HH, IC, JAW, AdlC), of the Ohio StateUniversity-Columbus, OH;  specifically, Christopher D. South, Heather Hampel, Ilene Comeras, Judith A. Westman,Wendy L. Frankel and Albert de la Chapelle. From the Journal of Investigative Dermatology 7/6/2006, an excellent, comprehensive article on Muir Torre  Screening for Muir-Torre Syndrome Using Mismatch Repair Protein Immunohistochemistry of Sebaceous Neoplasms. IHC testing not recommended unless a personal history or family history of colorectal cancer exists   12/2012 Brain Cancer and the Lynch Syndrome,Genetics Department, University of Helsinki, Finland,  September 2012 Anaplastic oligodendroglioma in an adolescent with lynch syndrome, 12/19/2012  Queensland, Australia   THYROID, FIBROUS HISTIOCYTOMA, SARCOMAS, NEUROENDOCRINE TUMORS  AND CORTICAL CARCINOMA   7/11/2012  University of Padova, Padua Italy study concludes soft tissue sarcomas could be included In the spectrum of Lynch syndrome, that even if rarely, depend on MMR genes deficiency Unusual tumors associated with hereditary nonpolyposis colorectal cancer syndrome dated 2004 by MD Anderson concludes individuals with younger onset adrenal cortical carcinoma and anaplastic thyroid carcinoma should be tested for Lynch syndrome. Malignant Fibrous histiocytoma is a rare Lynch syndrome associated tumor in two German families: German study from Biomedical Research Laboratory, Johann Wolfgang-Goethe University, Frankfurt, Germany, dated 5/20/2011 concludes two patients within two different families with MSH-2 sustained a malignant fibrous histiocytoma. Sarcomas Associated With HNPCC, according to a study at the Clinical Research Center, Copenhagen, Denmark, dated 1/8/2009 . Thyroid Cancer In A Patient With A Germline In An MSH-2 Mutation.  Case report and Review Of The Lynch Syndrome Expanding Tumour Spectrum  Netherlands Observation Sloan Kettering Study --- Discussion of Unusual Cancers in Lynch Syndrome Including:  Peritoneal Mesothelioma; Pancreatic Neuroendocrine Tumor, Pancreatic Acinar Cell Carcinoma, and adrenalcortical carcinoma  7/2012 Fibrous Histiocytoma discovered in two German families with MSH2.  (2038   and 932 +-  +3A >T)  Conclusion...Data further support that patients with Lynch syndrome are at increased risk for rare tumors such as MFH. However, the prognosis compared to sporadic MFH seems to be favorable.  9/2011 A Molecularly Confirmed Neuroendocrine Tumor in Lynch Syndrome, Washington University, St. Louis, MO 7/2012 THE MUTATIONS Inversion of Exons 1-7 of MSH2 Gene Is A Frequent Cause of Unexplained Lynch Syndrome In A Local Population 10/11/2013 MSH2 Mutation Carriers Presents With More Extracolonic Cancers, than MLH1 Mutation Carriers.  10/10/2013 Constitutional Mismatch Repair Deficiency Syndrome-Biallelic Condition:  Diversity of the clinical presentation of the MMR gene biallelic mutations  9/26/2013 MSH6 Cancer Risk:  Laura Baglietto, Noralane M. Lindor, James G. Dowty, Darren M. White, Anja Wagner, Encarna B. Gomez Garcia, Annette H. J. T. Vriends, Dutch Lynch Syndrome Study Group, Nicola R. Cartwright, Rebecca A. Barnetson, Susan M. Farrington, Albert Tenesa, Heather Hampel, Daniel Buchanan, Sven Arnold, Joanne Young, Michael D. Walsh, Jeremy Jass, Finlay Macrae, Yoland Antill, Ingrid M. Winship, Graham G. Giles, Jack Goldblatt, Susan Parry, Graeme Suthers, Barbara Leggett, Malinda Butz, Melyssa Aronson, Jenny N. Poynter, John A. Baron, Loic Le Marchand, Robert Haile, Steve Gallinger, John L. Hopper, John Potter, Albert de la Chapelle, Hans F. Vasen, Malcolm G. Dunlop, Stephen N. Thibodeau, Mark A. Jenkins  Conclusion: For MSH6 mutation carriers, the estimated cumulative risks toages 70 and 80 years, respectively, were as follows: for colorectalcancer, 22% (95% confidence interval [CI] = 14% to 32%) and44% (95% CI = 28% to 62%) for men and 10% (95% CI = 5% to 17%)and 20% (95% CI = 11% to 35%) for women; for endometrial cancer,26% (95% CI = 18% to 36%) and 44% (95% CI = 30% to 58%); andfor any cancer associated with Lynch syndrome, 24% (95% CI =16% to 37%) and 47% (95% CI = 32% to 66%) for men and 40% (95%CI = 32% to 52%) and 65% (95% CI = 53% to 78%) for women. Comparedwith incidence for the general population, MSH6 mutation carriershad an eightfold increased incidence of colorectal cancer (HR= 7.6, 95% CI = 5.4 to 10.8), which was independent of sex andage. Women who were MSH6 mutation carriers had a 26-fold increasedincidence of endometrial cancer (HR = 25.5, 95% CI = 16.8 to38.7) and a sixfold increased incidence of other cancers associatedwith Lynch syndrome (HR = 6.0, 95% CI = 3.4 to 10.7). 8/5/2012  Cancer Risks of the Danish MLH1 Mutation of Lynch syndrome Fibrous Histiocytoma found in two German Families with MSH2 - 2038C and MSH2 932 +- 3A >_ T.   Conclusion....Data further support that patients with Lynch syndrome are at increased risk for rare tumors such as MFH. However, the prognosis compared to sporadic MFH seems to be favorable.  9/2011 China study detects esophaegal cancer risk as a result of polymorphism of MSH-2 and WRN  12/2011 Malignant Fibrous Histicytoma detected in German Families with MSH2, Exon 13  12/2011 Cancer Risks Teased Out In Lynch Syndrome - French study assessed 537 families with MSH1, MSH2 and MSH6 gene mutations to determine risk by age, tumor and other factors.  Conclusion:  Risks were higher in families with MSH1 and MSH2 had higher risks of cancer and the risk in MSH6 was lower and cancers ordinarily orginated at a younger age Lynch Syndrome TACSTD1 Family with Predominant Colorectal Cancer:  J Clin Oncol 28:15S, 2010 Germline mutations cannot be found in MMRs MLH1 and MSH2  in about 30% of families satisfying the Amsterdam Criteria. Recently, deletions in the TACSTD1 gene have been identified as a cause of LS.  Conclusion:  Identification of these mutations as a cause of LS allows family members to identify their cancer risk, receive genetic counseling and obtain annual surveillance management.  HT Lynch and Others;  Conclusion: Identification of TACSTD1 mutations as a cause of LS has important cancer control implications for this and other LS families thereby enabling family members to identify their cancer risk, receive genetic counseling, and enroll in an appropriate cancer surveillance/management program. Extracolonic cancer risk may be decreased in TACSTD1 mutation carriers but this will require further confirmation Risk of Colorectal and Endometrial Cancers in EPCAM Deletion-Positive Lynch Syndrome: A Cohort Study Netherlands  1/2011  EPCAM Deletion Carriers have a high risk of colorectal cancer and only those with deletions extending close to MSH2 have an increased risk of endometrial cancer. Epcam Deletion Carriers Constitute A Unique Subgroup of Lynch Syndrome Patients, Netherlands  12/23/2012  Discusses EPCAM deletions, how the size and location of the gene may affect the risk of cancer...  Determining the Frequency of De Novo Germlike Mutations in DNA Mismatch Repair Genes The Clinical Phenotype of Lynch Syndrome Due to Germline PMS2 Mutations Excellent study explaining in depth the clinical characteristics ofPMS2 mutation carriers, which has not been explored in depth up until this point. by Human Cancer Genetics Program, The Ohio State University Comprehensive Cancer Center Columbus, Ohio Discipline of Genetics, Faculty of Medicine, Memorial University of Newfoundland, St John’s, Newfoundland Cancer Prevention Program, Fred Hutchinson Cancer Research Center, Seattle, Washington Karolinska Institute, Department of Molecular Medicine, Stockholm, Sweden Department of Laboratory Medicine and Pathology, Mayo Clinic College of Medicine, Rochester, Minnesota Department of Medical Genetics, Mayo Clinic College of Medicine, Rochester, Minnesota Queensland Institute of Medical Research, Brisbane, Queensland, AustraliaAdult Clinical Genetics, The University of Melbourne, Victoria, Australia Centre for MEGA Epidemiology, School of Population Health, The University of Melbourne, Victoria, AustraliaJournal of the National Cancer Institute, 2010 102(3):193-201; doi:10.1093/jnci/djp473 Germline Analysis of the hPMS2 Gene in Chinese Families With HNPCC 8/2012 Risks of Lynch Syndrome Cancers for MSH6 Mutation Carriers From the Journal of the National Cancer Institute, Risks of Lynch Cancers for MSH6 Mutation Carriers Conclusion: We have obtained precise and accurate estimates of both absoluteand relative cancer risks for MSH6 mutation carriers. Correlation Between Clinical Pathological Parameters and Family History To Detect Mutations in MLH1, MSH2 and MSH6, Spain 2011 Conclusion:  The most important clinical feature to predict the presence of a mutation in the genesMLH1, MSH2 and/or MSH6 in families with HNPCC is the diagnosis of endometrial cancer (univariate analysis). Study indicates  Amsterdam criteria and each of the Bethesda criteria were inadequate for identifying MSH6 mutation-carrying kindreds. MSH6 mutations may be more common than currently assumed, and the penetrance/expression of MSH6 mutations, as derived from families meeting current clinical criteria, may be misleading. To increase detection rate of MMR mutation carriers, all cancers in the Lynch syndrome tumour spectrum should be subjected to immunohistochemical analysis and/or analysis for microsatellite instability. Researchers from Australia find a new method to detect new mutations in mismatch repair genes. Study from University of Rouen, France, indicates the median age of CRC onset was 43 years, a significant difference of CRC penetrance between males and females and between MSH2 and MLH1 mutation verus MSH6 mutation carriers. Results are in agreement with published studies, which estimate cumulative CRC risk at 70 years is higher in males than females and is lower in MSH6 mutation carriers, compared to those with MSH2 and MLH1. PSYCHO-SOCIAL   The Importance of Older Family Members In Providing Social Resources And Promoting Cancer Screenings in Families With a Hereditary Cancer Syndrome: Study by the University of Memphis, 2011.  Utilizing the older members of families to facilitate screenings and provide emotional well being of family members may be beneficial.  Study indicated younger respondents were more willing to recruit older family members as providers of social resources. From Sweden, a very good Psycho-Social study Family perspectives in lynch syndrome becoming a family at risk, patterns of communication and influence on relations  9/2012 Impact Of Genetic Testing on Risk-Reducing Behavior in Women AT Risk for Hereditary Gynecologic Cancer Syndromes from Beth Israel Deaconess Medical Center, Boston, Massachusetts and Dana Farber Cancer Institute, Boston, Massachusetts.  Conclusion: In the first year after genetic testing, women who tested positive for HBOC or Lynch syndrome increased uptake of prophylactic surgery or screening to reduce their risk of gynecologic cancers. Women with true-negative results do not pursue these unnecessary interventions, whereas those with indeterminate or variant test results do not significantly change their risk-reducing behaviors. Attitudes Toward Childbearing And Prenatal Testing In Individuals Undergoing Genetic Counseling for Lynch Syndrome:  Study of 161 individuals, mean age 46 years, 71 percent women and 53% having sustained cancer, by Dana Farber researchers revealed 80% worried about their childrens risk of cancer but only 9% reported their decision to have children was affected by their family history of cancer. From Genetics in Medicine:  September 2008, Volume 20 - Issue 9 - pp 691-698 Influence of genetic discrimination perceptions and knowledge on cancer genetics referral practice among clinician Lostuter, Katrina J. MS: Sand, Sharon BA; Blazer, Kathleen R. MS; MacDonald Deborarh J. PhD; Banks, Kimberly C. MS; Lee, Carola A. JD; Schwerin, Barbara U. Esq. Juarez, Margaret MD; Uman, Gwen C. PhD, WEitzel, Jeffrey N. MD.   Conclusion:  Concerns about genetic discriminationand knowledge deficits may be barriers to cancer genetics referrals.  Aclinicial education may help promote access to cancer screening and prevention. (Note:  96% viewed genetic testing as beneficial. 75% believed fear of genetic discrimination would cause patients to decline testing. More than 60% were not aware of federal or California laws prohibiting health insurance discrimination.  Concern about genetic discrimination was selectged as reason for NONREFERRAL BY 11% of physicians. National Cancer Institute Page On Psycho-Social Studies Of Those With Lynch Syndrome ETHNIC AND CULTURE STUDIES   Gynecologic cancer screening and communication with health care providers in women with Lynch Syndrome Clin Genet. 2013 Jul 31. doi: 10.1111/cge.12246  Fam Cancer  Lynch Syndrome in High Risk Ashkenazi Jews In Israel  8/30/2013 A novel germline MLH1 mutation causing Lynch Syndrome in patients from the Republic of Macedonia  10/2012 Evaluation of MLH1 1219V Polymorphism in Unrela ted South American Individuals Suspected of Having Lynch Syndrome.  10/2012   6/2012  Study concludes MSI-High appears lower in Korean patients with colorectal cancers Detection of Hereditary Nonpolyposis Colorectal Cancer (HNPCC) in Non-Caucasian Patients - January 2012, MD Anderson Study of a diverse group of patients over a long period of time, breaking results down to specific cancers. Characteristics of Lynch Syndrome In Thirteen Hispanic Families: Ricker et.al; Hereditary Cancer in Clinical Practice 2010 8 (Suppl 1) P. 19 Clinicopathologic and Genetic Features of Chinese  Hereditary Nonpolyposis Colon Cancer, Shanghai Institute for Biological Science (Abstract) Prevalence and Characteristics of HNPCC In Immigrant Chinese Cancer Patients (Abstract)  Conclusion:  MSH-6 has first presentation in patients over age of 50 in Chinese patients.  Warrants further study. 8/2012 Germline Analysis of hPMS2 gene in Chinese Families with HNPCC Esophageal cancer risk is associated with polymorphisms of DNA repair genes MSH2 and WRN in Chinese population  2/2012 Germline MLH1 and MSH2 Mutations In Italian Pancreatic Cancer Patients With Suspected Lynch Syndrome:  Conclusion:  Only a small subset of Italian pancreatic cancer patients carry pathogenic MMR mutations. Frequency of Extracolonic Tumors in Brazilian Families With Lynch Syndrome: analysis of an hereditary colorectal cancer institutional registry    Breast cancer was the most frequent extracolonic cancer amongst women with endometrial  cancer and uterine cervix cancer following.  For men, prostate and Gastric Cancers were the most frequent extracolonic cancers. 12/12/2010 A new mutation of Lynch syndrome within Exxon 13 has been found within a Spanish family. High Risk of Colorectal and Endometrial Cancer in Ashkenazai Families with MSH2 A636P Founder Mutation June 2011 University of Michigan, Ann Arbor, MI  Conclusion:  Lifetime risk of CRC and EC are high by age 70, 61.62% for men and 61.08% for women with cummulative EC risk of 55.6% for women and an average mean age of diagnosis at 53 years of age. Women in Tunisia - Tunisian Study  MMR repair genes play a significant role in CRC susceptability, more research needed on cause, especially for left hand tumours. Hereditary Nonpolyposis Colorectal Cancer/Lynch Syndrome In Korean Patients With Endometrial Cancer 7/11/2012 A Unique Mutation in MSH2, Exon 8 Accounts For A Major Portion Of Those With Lynch Syndrome in Sardinia 4/28/2011  Lynch Syndrome In A Predominantly Afrocentric Population, a clinipathological and genetic study...  Mount Sinai Hospital, Toronto with University of the West Indies, Mora Jamaica studied 25 patients under 40 with CRC, concluding thirteen percent 13% had mutations with prevalence similar to that reported by the white population. Screening of the DNA Mismatch Repair Genes of MLH1, MSH2 and MSH6 In A Greek Cohort of Lynch Syndrome Suspected Families  BMC Cancer, October 11, 2010 Iranian study of colorectal cancer - Family History of Colorectal Cancer In Iran, Mehr Hospital, Tehran 2005.  The family history of cancer is traced in 449 CRC patients of which 112 were 45 yrs or younger and 337 were older than 45 yrs at time of diagnosis. The patients were admitted in two hospitals in Tehran, during a 4-year period. Results: Clinical diagnosis of HNPCC was established in 21 (4.7%) probands. Family history of CRC was more frequently reported by early-onset than by late-onset patients (29.5% vs. 12.8%, p < 0.001). Hungarian Researchers discuss the Q48P Mutation of the MLH1 Gene In Three Hungarian Families  Estonian study of colorectal cancer of 180 persons, by use of pathological testing, determines MSI-H and BRAF mutation were observed in 30 and 28 out of all cases, respectively. Several polymorphisms in MLH1 (13); MSH2 (11); MSH6 (10) and PMS2 (15) genes, and a few previously not described variants of unknown significance were found. 8/13/2012  Within a study of 124 unrelated South American individuals, The Val allelic of the I219V polymorphism was found in 51.61% (64/124) of the individuals, with an allelic frequency of 0.3. MLH1 or MHS2 pathogenic mutations were found in 32.81% (21/64) and in 23.33% (14/60) of Val-carriers and non-carriers, respectively. Conclusion: The Val-carrying genotype was frequent in the studied population; however, it does not appear to exert any modifier effect on MLH1 or MSH2 pathogenic mutations and the development of colorectal cancer. A First Incidence Study of Lynch Syndrome in Italy (6/2012)  Of the 430 patients enrolled, 17 (4%) were high risk [4 hereditary non-polyposis colorectal cancer (HNPCC), 12 suspected HNPCC and 1 MUTYH-associated adenomatous polyposis coli (MAP)], 53 moderate risk and 360 mild risk cases. MSI test was performed on 393 tumours, 46 (12%) of them showed MSI-H. In these patients, one MLH1 pathogenetic mutations and two MSH2 pathogenetic mutations were found. Thirty-two (70%) MSI-H cases demonstrated MLH1 methylation and/or BRAF mutation: None showed MLH1/MSH2 mutation. Two biallelic germline MUTYH mutations detected, one with clinical features of MAP. Strong family history of CRC was present in 4% of the enrolled cases; incidence of MLH1/MSH2 or MUTHY mutations was 1.3% and of MSI-H phenotype was 12%. MLH1 methylation and BRAF mutation can exclude 70% of MSI-H cases from gene sequencing. The Canadian Journal of surgery reports a study conducted of black individuals in Jamaica has indicated thirteen percent of the population had mutations in keeping with Lynch syndrome. 10/2012 The MSH2 c.388_389del mutation shows a founder effect in Portuguese Lynch syndrome families but also occurs de novo in different populations.  11/2/2011 26.  Breast cancer in Irish Families  Breast cancer occurred at an early age and was more common than prostate cancer in Irish Lynch Syndrome pedigrees. All reported breast cancer cases were in kindreds with MSH2 or MSH6 mutations. Enhanced breast cancer screening may be warranted in certain Lynch Syndrome kindreds.  2005  A study of individuals in Greecereveals The majority of mutations identified in this cohort are found in hMSH2 (77.7%). Furthermore, four of the mutations identified are novel. Finally, a number of novel benign variations were observed in both genes. This is the first report of HNPCC analysis in the Greek population, further underscoring the differences observed in the various geographic populations. 1/2013 Cancer Spectrum in Families from Ireland indicates cancers identified include: CRC, endometrial , gastric, ovarian, renal, breast, prostate, urothelial, NHL, CML, lung, vocal cord, sebaceous carcinoma and cervix. Median age of diagnosis was 44. 1/2013 Ireland study results on LS, of age affected children and affected parents.   MSI - IHC TUMOR TESTING Identification of Lynch Syndrome Among Patients With Colorectal Cancer  10/17/2012   In an enormous research study involving over 10,000 individuals with Colorectal Cancers, Lynch researchers discovered universal testing of tumors among CRC Probands had a greater sensitivity compared with alternative strategies, including use of the Bethesda criteria.     Current Hypotheses on how Microsatellite Instability Leads to Enhanced Survival of Lynch Syndrome Patients  Kristen M. Drescher, Poonam Sharma and Henry T. Lynch, Creighton University   Abstract: High levels of microsatellite instability (MSI-high) are a cardinal feature of colorectal tumors from patients with Lynch Syndrome. Other key characteristics of Lynch Syndrome are that these patients experience fewer metastases and have enhanced survival when compared to patients diagnosed with microsatellite stable (MSS) colorectal cancer. Many of the characteristics associated with Lynch Syndrome including enhanced survival are also observed in patients with sporadic MSI-high colorectal cancer. In this review we will present the current state of knowledge regarding the mechanisms that are utilized by the host to control colorectal cancer in Lynch Syndrome and why these same mechanisms fail in MSS colorectal cancers.   From the Office of Public Health Genomics: The cost-effectiveness of genetic testing strategies for Lynch syndrome among newly diagnosed patients with colorectal cancer. Mvundura M, Grosse SD, Hampel H, Palomaki GE. Genet Med. 2010 Feb;12(2):93-104.  Results:  Strategies to test for Lynch syndrome in newly diagnosed colorectal tumors using preliminary tests before gene sequencing have incremental cost-effectiveness ratios of $45,000 per life-year saved compared with no testing and $75,000 per life-year saved compared with testing restricted to patients younger than 50 years. The lowest cost testing strategies, using immunohistochemistry as a preliminary test, cost $25,000 per life-year saved relative to no testing and $40,000 per life-year saved relative to testing only patients younger than 50 years. Other testing strategies have incremental cost-effectiveness ratios $700,000 per life-year saved relative to the lowest cost strategies. Increasing the number of relatives tested would improve cost-effectiveness. Conclusion: Laboratory-based strategies using preliminary tests seem cost-effective from the US health care system perspective. Universal testing detects nearly twice as many cases of Lynch syndrome as targeting younger patients and has an incremental cost-effectiveness ratio comparable with other preventive services. This finding provides support for a recent US recommendation to offer testing for Lynch syndrome to all newly diagnosed patients with colorectal cancer.   The Association of Tumor Microsatellite Instability Phenotype with Family History of Colorectal Cancer Mount Sanai Hospital and Samuel Luenfeld Research, University of Toronto   EGAPP Recommendations April 2011   Preoperative Diagnosis of Lynch Syndrome With DNA Mismatch Repair Immunohistochemistry On A Diagnostic Biopsy - Dec. 2011  33 samples of biopsies taken.  Study indicates mismatch repair status is accurate on biopsies allowing preoperative diagnoses of Lynch syndrome before definitive surgery, allowing the patient and the physician more options to determine appropriate protocol.   Psychological Distress In Newly Diagnosed Colorectal Cancer Patients Following Microsatellite Instability Testing for Lynch Syndrome On the Pathologist's Initiative Radboud University Nijmegen Medical Center; Nijmegen, The Netherlands  2/7/2012   Prevalence of Mismatch Repair Deficient Crypt Foci In Lynch Syndrome: A Pathological Study   Routine Universal Screening for Lynch Syndrome in Colorectal Cancer Patients In The Community Setting  J Clin Oncol 30, 2012 (suppl; abstr 1512) MISCELLANEOUS Pubmed Links to almost 4,000 studies results and journal articles in respect to Lynch syndrome. ING Life Insurance speaks of hereditary conditions and Lynch syndrome and insurability Coding and Billing for Lynch Syndrome   Modified 10/4/2013                  
Saturday, 27 February 2010 | 41264 hits
139. Media
      Lynch Syndrome International invites the media to learn more about our organization and assist us in promoting public awareness of Lynch syndrome.  As the only national and international nonprofit organization to address the needs and concerns of those who are affected by the myriad of cancers associated with Lynch syndrome, we very much need you to help us in our mission to protect families and save lives. Please feel free to peruse our site to learn more about Lynch Syndrome International and use our resources, including our LSI Library, in order to obtain valid up to date, sourced, information on Lynch syndrome.  In addition to the information listed upon the website, we can provide you with resources which may assist in adding a "local slant" being produced, including survivors and previvors who are available to interview and share their personal experiences with Lynch syndrome as well as contact information for experts in the field of Lynch syndrome. We are always available by email at info@lynchcancers.com or by telephone at 702-298-3911.  We look forward to hearing from you. Together, we can make a postive difference in the lives of tens of thousands of people, within our communities throughout the world.    
Tuesday, 09 February 2010 | 14046 hits
AUSTRALIA / NEW ZEALAND Lynch Syndrome Australia In Australia and New Zealand the Registries provide referrals and resources. They offer specialist management advice to assist with care They clarify the family's risk for developing bowel or other gastrointestinal cancers by confirming family history They faciliteate genetic testing where appropriate They determine if persons and families would beneift from regular screening to prevent cancer If determined to be at high risk for developing gastro intestingal cancers, they coordinate bowel screenings. They provide information for families on familial GI Cancer. Cancer Council of Western Australia - AU Understanding Genetic Testing - AU Australian Specific Study of MSH6 and PMS2 Mutations in Australian Families - AU Family Matters - Newsletter of the NSW and ACT Hereditary Cancer Registry - AU HNPCC Guide by the NSW Government of Australia -AU Genetic Services for Western Australia - AU Center for Genetics Information - AU Genetic Counseling Services - AU Family Cancer Services - AU Office of Population Health Genomics - AU Cancer Institute NSW - AU Cancer Council Victoria - AU Genetic Testing and Life Insurance in Australia -AU Human Genetics Society of Australasia - AU NSW and ACT Cancer Registries - AU Australian - New Zealand Clinical Trials - AU, NZ Guide to Health Care Professionals - Bowel Cancer - AU BowelCancerAustralia.org - AU Australian Cancer Trials (Australiancancertrials.gov) -AU Cancer Council -AU Cancer Council of South Australia -AU NHMRC Guide to HNPCC -AU Genetic Services of Western Australia -AU Women's and Children's Hospital Familial Cancer Unit -AU Peter Mac Familial Cancer Center -AU Cancer Registries in Australia and New Zealand -AU Clinical Oncological Society of Australia -AU Cancer Australia -AU Family Cancer Clinics in Australia -AU Australia Clinical Practice Guidelines for Familial Cancer -AU Centre for Genetics Information NSW -AU Queensland Institute of Medical Research -AU Family Cancer Clinics -AU Gynecological Cancers Resources -AU Cancer Care Resource Search Engine -AU South Australia - Find A Genetic Counselor -AU Australian Capital Territory Government Health Portfolio -AU Australian Department of Health and Ageing -AU South Australia Department for Families and Communities -AU South Australian Department of Health -AU Department of Health - Western Australia -AU Department of Human Services -Victoria New South Wales Health -AU Australia New Zealand Hereditary Cancer Registry -AU - NZ Valley Diagnostic Testing Pathological Testing MSI - HNPCC -NZ New Zealand Genetic Testing Paper -NZ New Zealand Familial Gastrointestinal Registry -NZ Cancer Society of New Zealand -NZ Cancer Genetics Laboratory - NZ Aukland Gastroenterology Associates - NZ New Zealand Cancer Control Trust -NZ National Cancer Information Network -NZ (Restricted to Healthcare Professionals) Health and Disability Commissioner -NZ (Medical Board) Hospice New Zealand -NZ New Zealand Medical Association -NZ Webhealth -NZ (Health Resources in New Zealand) Aukland District Health Board, New Zealand Professional Associations: Human Genetics Society of Australasia (HGSA) Australian Society of Genetic Counsellors Genetic Society of Australia (GSA) School of Biomedical Sciences and Pharmacy, University of Newcastle, NSW 2308, Australia Hunter Medical Research Institute, John Hunter Hospital, Newcastle, NSW 2305, Australia Hunter Area Pathology Service, Hunter New England Area Health, NSW 2305, Australia Hunter Family Cancer Service, Hunter New England Area Health, NSW 2305, Australia University of NSW, St Vincent's Hospital Clinical School, Sydney, NSW 2010, Australia Hunter Medical Research Institute, New Lambton Heights, NSW, Australia Molecular Genetics, HAPS, New Lambton Heights, NSW, Australia Princess Margaret Children's Hospital, Perth, WA 6000 Australia Familial Cancer Clinic, Royal Melbourne Hospital, Victoria, Australia Peter MacCallum Cancer Centre (PMC), Victoria, Australia Genetic Health Services Victoria (GHSV), Australia; Familial Bowel Cancer Clinic, Royal Melbourne Hospital (RMH), Australia; University of Auckland, Auckland, Aotearoa New Zealand University of Otago, Dunedin, Aotearoa New Zealand For Young Adults - Australia CanTeen
Wednesday, 15 August 2012 | 1889 hits

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