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21. 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 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 | 14073 hits
RECOMMENDED SCREENING FOR LYNCH SYNDROME CANCERS Colonoscopy: Annually, beginning at age 20-25, or ten years younger than the earliest age of diagnosis in the family, whichever comes first. NCCN guidelines (NCCN Version 2.2013) state two to five years prior to the earliest age of diagnosis in the family, and to repeat every 1-2 years. NCCN Guidelines reflects: There are data to suggest that aspirin may decrease the risk of colon cancer in LS, however, at this time, the data are not sufficiently robust to make a recommendation for its standard use. For those with MSH-6, NCNN guidelines (NCCN Version 2.2013) state every two to three years beginning at age 30 - 35 and every two years until age 40 and then every one to two years. NCCN does not provide management guidelines for the extracolonic cancers of those with MSH-6. They advise prophylactic hysterectomy and oopherectomy following childbearing years. For those with PMS-2, NCCN guidelines (NCCN Version 2.2013) state colonoscopy to begin at age 35-40 and continue every two to three years until age fifty. At that time, colonoscopy screening should be followed every one to three years. For those with PMS-2, NCCN guidelines do not provide management guidelines for the extracolonic cancers of those with PMS-2, including recommendation for endometrial cancer. Endometrial Sampling: Annually, beginning between ages 30-35 NCCN Guidelines reflect despite no current scientific evidence, annual endometrial samplings may be useful in select patients. (NCCN Version 2/2011) Transvaginal Ultrasound: For Endometrial and Ovarian Cancer: Annually beginning ages 30-35 NCCN guidelines determine this is at the clinician's discretion. CA-125: For Ovarian Cancer. While there may be times screening can be helpful, NCCN has determined data does not support routine ovarian screening for LS. (NCCN Version 2/2011) Ultrasonography With Cytology: Annually, beginning at age 25-35 (NCCN Guidelines, Version 2.2011 refer to an "annual urinalysis.") Gastroscopy: NCCN guidelines have now been revised. "There is no clear evidence to support screening for gastric, duodenal, and small bowel cancer for LS. Selected individuals or families or those of Asian descent may consider EGD with extended duodenoscopy (to distal duodenum or small jejunum.)" Colon Resection: For individuals with active colon cancer that cannot be removed by colonoscopy. Subtotal colectomy favored with preferences of patient actively elicited. The National Comprehensive Cancer Center Guidelines recommend a total abdominal colectomy with ileorectal anastomosis in the event of adenomas not amenable to endoscopic rescection. (NCCN Guidelines Version 2.2013) Hysterectomy and/or Oopherectomy: Discuss as an option after childbearing years to deter the high risk of gynecological cancers. NCCN's revised guidelines have listed this as a guideline for all but those with PMS-2 mutation. Dermatological Examination: For Muir-Torre (lesions of the skin including sebaceous adenomas, sebaceous epitheliomas, basal cell epithelioma with sebaceous differentiation, sebaceous carcinoma and squamous cell cancer (keratoacanthoma type.) NCCN has not addressed Muir Torre. Other tests may be ordered at the discretion of the Clinician to include screenings for pancreatic cancer, CNS cancer, prostate cancer, liver cancer, gallbladder cancer and renal-pelvic cancer. NCCN has added a statement about pancreatic cancer: "Despite data reading an increased risk for pancreatic cancer, no effective screening techniques have been identified, therefore, no screening." NCCN has added the following regarding breast cancer: "There have been suggestions that there has been an increased risk for breast cancer in LS, however due to limited data, no effective screening techniques have been identified, therefore, no recommendation is possible at this time." Updated: 6/22/2013
Monday, 15 February 2010 | 22788 hits
LSI Financial Report for 2012-2013 Open in new window
Sunday, 08 December 2013 | 1408 hits
24. About Us
  MISSION STATEMENT The primary mission of Lynch Syndrome International (LSI) is to serve our global communities by focusing on providing support for individuals afflicted with Lynch syndrome, creating public awareness of the syndrome, educating members of the general public and health care professionals and providing support for Lynch syndrome research endeavors. LSI, an all volunteer organization, is founded and governed by Lynch syndrome survivors, their families, and health care professionals who specialize in Lynch syndrome. If diagnosed early, we believe Lynch syndrome survivors have favorable outcomes which enhance survival, the longevity and quality of life as well as the emotional well-being of the afflicted. With the provisions of knowledge, caring and respect for those living with Lynch syndrome, coupled with a common theme of a prevalent positive attitude, we can be change agents, enhancing hope and survivability, impacting the life of countless thousands of people throughout our world. SCIENTIFIC ADVISORY BOARD Henry T. Lynch, MD Chairman -Founder of Lynch Syndrome, Northshore University Healthcare System, Creighton University Cancer Center, Omaha, Nebraska Albert de Chapelle, MD Ohio State University, Human Cancer Genetics Program, Columbus, Ohio C. Richard Boland, MD -Baylor Center University Medical Center, Dallas, Texas - American Gastroenterological Association Patrick Lynch, MD -University of Texas, MD Anderson Cancer Center, Houston, Texas Jane Green, PhD Memorial University of Newfoundland, St John's, Newfoundland, Canada Dawna Gilchrist, MD -University of Alberta, Alberta, Canada Hans Vasen, MD -Leiden University Medical Center, Leiden, Netherlands and the Netherlands Foundation of the Detection of Hereditary Toumours Stephen Lanspa, MD -Creighton University, Omaha, Nebraska   EXECUTIVE BOARD We are pleased to announce the following Board of Directors of Lynch Syndrome International, for 2013-2014, which represent survivors, previvors, caretakers, medical professionals and researchers of Lynch syndrome.  Lynch Syndrome International Directors are working directors and actively direct and organize events within Lynch Syndrome International.  All indviduals involved with the organization are volunteers and receive no compensation for their benevolence and countless hours of effort. We are very grateful for their contributions to this all volunteer organization. Linda Bruzzone – President/Executive Director  Operations/Fundraising Barbara Fabiani – Vice President Secretary   Operations/Fundraising Dave Wortman – Treasurer     Financial Oversight Susan Olson – Brentwood, California/Survivor  Young Previvors and Survivors Liaison Beth Fairbank – Brisbane, Australia /Previvor    Australia Liaison Todd Neil – Winnepeg, Canada /Previvor   Canada Liaison Wolfram Nolte- Germany /Survivor    European and Germany Liaison Judith Ruggiero –  Vacaville, California /Previvor   Public Policy Liaison John Nelson – Las Vegas, Nevada/Survivor  Native American Tribal Liaison Michelle Miller, LCSW – Denver, Colorado /Survivor Bill Harb, MD – Nashville, Tennessee / Medical Provider  (Liaison With Medical and Research Organizations) Cristi Radford – Sarasota, Florida/Genetic Counselor (Chairs Medical Professional and Patient Education) Carrie Snyder - Omaha, Nebraska/RN-Genetic Counselor (Chairs Medical Curriculum-Research)   WEBSITE SUPPORT David Wakefield, Webmaster   ENDURANCE COORDINATOR Meg Davis – Endurance Coordinator   CONTACT US Lynch Syndrome International 3650 South Pointe Circle  Suite 205-9 Laughlin, Nevada  89029 Telephone: 702-298-3911 Please do not hesitate to contact us with any questions you may have. REGULATORY  INFORMATION On 7/1/2009, Lynch Syndrome International was incorporated as a not for profit organization within the State of California and is registered with the Office of the California Secretary of State. Lynch Syndrome International, Inc. has been granted 501(c)(3) status as a not for profit, tax-exempt charity by the United States Government, Internal Revenue Service. Lynch Syndrome International, Inc. has been granted tax exempt status by the State of California, Franchise Tax Board.  It is also listed, in accordance to California State law with the Office of the California State Attorney General, Charitable Trusts Division and registered with the California State Board of Equalization and California State Franchise Tax Board.   SITE CONTENT This website is developed and maintained by Lynch Syndrome International.  All medical information on this site is supported by recent studies and specific source information is linked to the direct study. The specific section for professionals is reviewed by medical professionals and information is sourced with the specific studies.  Within the section for survivors, the information has been compiled by survivors and, in some cases, in collaboration with experts.  As well, specific information has been sourced.  If question arises regarding information, please contact The website of Lynch Syndrome International is Honcode Verified and reviewed for certification by Honcode for meeting trustworthy health information.   ADVERTISING At this point, Lynch Syndrome International is not offering advertising opportunities upon the website, however, in the future, following Board of Directors approval and development of an ethical advertising policy, advertising may be available and utilized upon this site.   PRIVACY We at LSI respect your privacy.  We do not collect, distribute or display personal identifiable information on visitors to this site. In the absence of a signed waiver, any articles, tips or submissions will be credited to the senders initials only. From time to time, we may have a member of the media requesting an interview with a Lynch syndrome Survivor, Previvor or with a health care professional with expertise in Lynch syndrome. You may be assured your personal identifying information or contact information will not be provided and in that event, we would contact you and upon your agreement to participate, would respond directly to the request. We do not maintain a bulletin board or blog on this site however do have an organizational support and information site on We are not responsible for any content placed upon the Facebook site or have any control over the privacy of the identities and contact information for individuals.   DISCLAIMER The content upon the website of Lynch Syndrome International is for informational purposes only.  It is not intended to replace professional medical opinion or advice. We strongly recommend our readers seek the advice of their physicians or otherwise qualified healthcare professionals with any questions they may have about any condition. It is not the intent of this organization for persons to rely upon information on this site for diagnosis or treatment of any condition.  We strongly recommend our readers seek and utilize the services of an expert, qualified healthcare professional for consideration of any diagnosis or treatment of any condition. We do not endorse any treatments, brands or manufacturers of any materials used for diagnosis or treatment of any condition. Any opinions written upon any of the pages on this site are the opinions of the writers and not those of Lynch Syndrome International.  Reliance upon anything written by any person associated with Lynch Syndrome International and/or within this site is   solely at your own risk. Due to the nature of the cancers inflicted by Lynch syndrome, some subject matter within the site may be graphic and to some, considered offensive.  Access to this material is at your own risk. All matter on this site is subject to United States and international copyright laws.  Copying and/or reproduction of this material is by specific, written permission only.     This site complies with the HONcode standard for trustworthy health information:  verify here.   Search only trustworthy HONcode health websites: Modified:  3/12/2014 - changed LSI address & tel      
Monday, 13 May 2013 | 22221 hits
Photo Courtesy of Marco Pompei   Medicine is not merely a science but an art. The character of the physician may act more powerfully upon the patient than the drugs employed. -~ Paracelsus          Understanding the busy schedule of the professional, the following pages are quick guides for professionals to acquaint them with the basic knowledge of Lynch syndrome and how to diagnose and manage the disorder.      More detailed information to supplement these pages can be found by clicking on the LSI Library link on the Main Menu, to the left of this page, whereupon selected studies are available as well as clinical trials, registries, patient payment assistance programs, anti-discrimination laws and other resources relative to Lynch syndrome.      Simply follow the links on the top right to review the basic steps toward diagnosis of the Lynch syndrome.                                                                               INTRODUCTION       Lynch syndrome is part of a syndrome known as hereditary nonpolyposis colorectal cancer (HNPCC).  This syndrome includes individuals individuals having Familial Colorectal Cancer Type X, who display no evidence of DNA mismatch repair gene deficiency as well as those who have Lynch syndrome, which is indicated by a defect in mismatch repair genes.      Approximately 10% of all cancers are hereditary.  Thirty five percent (35%) of colorectal cancers have been stated to be the result of a familial or hereditary condition.        The American Cancer Society reports about 145,000 people per year contract colorectal cancer and studies conducted by the James Cancer Center at Ohio State University indicate one in every 35 of those persons are affected with  Lynch syndrome.        Geneticists predict approximately 800,000 individuals within the United States, alone, are affected by Lynch syndrome, however it is believed less than 5% of that number have been diagnosed.  It is thought one in every 440 to 550 persons is affected by Lynch syndrome.         Relying upon these numbers, it can be reasonably assumed each physician whose practice provides care for 3,000 to 4,000 persons, has five to ten patients affected by Lynch syndrome, and each patient has an average of three to five direct family members and most likely over a dozen second degree family members affected.       The only way to diagnose these patients is either by taking a family history, to assess risk and arrange for the genetic testing of those patients, or when those patients present with colorectal and endometrial tumors, arrange for pathological testing of those tumors for the characteristics of Lynch syndrome.   The only true form of diagnosis of Lynch syndrome is through genetic testing. During the process, DNA is sequenced seeking out defects in four primary mismatch repair genes, MLH1, MSH2, MSH6, PMS2 as well as within another gene, TACSTD1 ( Epcam) which eits to the right or to the front of the MSH2 gene.  Deletions in the EPCAM gene have been found to silence or turn off the MSH2 gene and in doing so, predisposes the individual to cancers of the Lynch syndrome.    LYNCH CANCERS LIFETIME RISKS (Source NCCN Guidelines 1.2013)         MLH1-MSH2 1,2 MSH6 2   PMS2 3 Cancer Gen Pop1   Risk Avg Age   Risk Avg Age   Risk Avg Age --------------- ------------   ----------- -----   -------------- -----   ---------- ----------- Colon 5.50%   40%-40% 44-81 yrs   10%-22% 54 yrs   15%-20% 51-66 yrs Endometrium 2.70%   25%-60% 48-62 yrs   16%-28% 55 yrs   15%                49 yrs Stomach 5% risk of LS on any mutation prediction model MMR Pro, PREMM 1,2,6 MMR Predict."   PREMM Prediction Model for MLH1, MSH2 and MSH6 - An easy qustionaire clinical prediction designed to determine the clinical probability of an individual carrying a mutation of the basic Lynch cancers. MMR Pro- This assessment device developed by Johns Hopkins researchers allows medical health professionals and families to make decisions about cancer prevention screenings and calculates the risk of an individual carrying a gene defect. It alleviates the time necessary to assess a family history and is stated to accurately identify more at risk individuals. Download page and Tool Information. Other tools for genetic risk are also available upon this page.   Reviewed 4/10/2014       RECOMMENDED SCREENING  (European Screening Guidelines To Be Added Soon)   Colonoscopy: Annually, beginning at age 20-25, or ten years younger than the earliest age of diagnosis in the family, whichever comes first for those with MLH1 and hMSH2 mutations.  For MSH6 and PMS2 patients, NCCN guidelines recommend colonoscopy testing beginning at the age of 25-30 or 2-5 years prior to the youngest age of presentation of colorection cancer in the family if diagnosed under the age of 30, and repeat every one to two years.   European Guidelines recommend every 1-2 years for persons with all affected faulty genes. NCCN does not provide management guidelines for the extracolonic cancers of those with MSH-6.  They advise prophylactic hysterectomy and oopherectomy following childbearing years. NCCN Guidelines reflects:  There are data to suggest that aspirin may decrease the risk of colon cancer in LS, however, at this time, the data are not sufficiently robust to make a recommendation for its standard use.   Endometrial and Ovarian Cancer Screening: NCCN Guidelines reflect "Prophylactic hysterectomy and bilateral oopherectomy, (BSO) is a risk reducing option that should be considered by women who have completed childbearing; Patients must be aware that dysfunctional uterine bleeding warrants evaluation; There is no clear evidence to support screening for endometrial cancer for LS.  However annual endometrial sampling is an option. Where there may be circumstances in which clinicians find screening helpful, data do not support routine ovarian screening for LS.  Transvaginal ultrasound for ovarian and endometrial cancer has not shown to be sufficiently sensitive or specific as to support a positive recommendation, but may be considered at the clinician's discretion."  Serum CA-125 is an additional ovarian cancer test with caveats similar to transvaginal ultrasound.   Extra Colonic Cancers for MLH6 and PMS2:  The risk of other LS cancers is reportedly low, however due to limited data no screening recommendation is possible at this time.   Extra Colonic Cancer Screenings for MLH1 and MSH2   Gastric and Small Bowel Cancer:  "There is no clear evidence to support screening for gastric, duodenal, and small bowel cancer for LS.  Selected individuals or families of those of Asian descent  may consider EGD with extended duodenoscopy (to distal duodenum or into the jejunum) every 3-5 years beginning at 30-35 years.   Urothelial Cancer:  Consider annual urinalysis starting at 25-30 years.   Central Nervous System Cancer:  Annual physical/neuological examination starting at 25-30 years, no additional screening recommendations have been made.   Pancreatic Cancer:  Despite data indicating an increased risk for pancreatic cancer, no effective screening techniques have been identified; therefore, no screening recommendation is possible at this time;   Breast Cancer:  There have been suggestions there is an increased risk for breast cancer in LS patients, however due to limited data, no screening recommendation is possible at this time.      Prostate Cancer: European studies have evidenced prostate cancers as an integral component of Lynch syndrome, though the experts believe there is need for more evidence.  LSI recommends annual PSA screenings and prostate exams are a prudent choice for the screening of individuals with the Lynch syndrome. European Guidelines:  "Until more studies are available, the Mallorca group does not recommend surveillance for prostate cancer in  LS families outside of appropriate research studies (see"  LSI Recommendation:  Examination and Review: Family History Review, Discussion of LS - Annually   LSI Recommendation:   Dermatological Examination for those with a family history of sebaceous or the following cancers of Muir Torre if a family history exists, or a personal history of sebaceous or other tumors as noted below: Including Muir-Torre lesions characterized including, but not all inclusive of sebaceous adenomas, sebaceous epithelioma, basal cell epithelioma with sebaceous differentiation, sebaceous carcinoma and squamous cell cancer (keratoacanthoma type.)   LSI Recommendation:  Colon Resection: For individuals with active colon cancer that cannot be removed by colonoscopy. Subtotal colectomy favored with preferences of patient actively elicited. Consider more extensive colectomy for patients with a strong family history of colon cancer or young age.    LSI Recommendation: Any Other Screening As Deemed Appropriate By the Physician:   LSI Recommendation:  Breast Cancer: Breast cancer has been identified as an integral component of LS based upon mismatch repair germline mutation factors in breast cancer tissues from family members who are not only at high risk, but, moreover, who had Lynch syndrome cancers, such as involving the colorectum. Breast cancer is exceedingly common in the population and, therein, its occurence in Lynch syndrome families could be due to chance, but importantly, a subset will likely be integrally related to a germline mismatch repair Lynch syndrome mutation is some LS families. Therefore, it would be prudent to mount a screening and management program for Lynch syndrome in those families where breast cancer is believed to be an integral lesion.   Modified 4/10/2014           DATABASES AND LABORATORIES:   GeneTests from the University of Washington provides a list of genetics clinics in the United States and internationally. The list can be accessed by clicking on “Clinic Directory” at the top of the GeneTests home page. Clinics can be chosen by state or country, by service, and/or by specialty. State maps can assist in locating a clinic in your area. (Currently Genetests is down, however is expected to return)   The National Society of Genetic Counselors offers a searchable directory of genetic counselors in the United States. Search by location, name, area of practice/specialization, and/or ZIP Code.   The National Cancer Institute provides a Cancer Genetics Services Directory, which lists professionals who provide services related to cancer genetics. You can search by type of cancer or syndrome, location, and/or provider name.   The NCBI offers a database which lists labs and information on the specific gene mutations.   InSight, an organization of the top gastro cancer researchers in the world, maintains a database on the mutations and lists some of the cancers of the specific mutations.   The Memorial University of Newfoundland has a terrific database of specific mutations and articles directly addressing those mutations.       Reviewed 6/7/2013     LYNCH SYNDROME MUTATED GENES   Lynch syndrome cancers are caused by mutations in seven mismatch repair genes, specifically:   MSH2 2p16 chromosome 45-50% MLH1 3p22.3/A> chromosome 20% MSH6 2p16 chromosome 10% PMS2 7P22.1 chromosome 1%   EPCAM PMS1 2Q32.2 chromosome Rare MSH3 5q14.1 chromosome Rare EXO1 1q1q43 chromosome Rare   Other Genes Not Yet Discovered 20-25% prev           IT'S JUST THE TIP OF THE ICEBERG   Approximately ten percent (10%) of all cancers are hereditary. It is estimated many more are familial and 35% of all colorectal cancer is hereditary and/or familial. These patients need to be identified and receive more extensive cancer screenings. FIT testing (testing for blood in the stool) is not effective for them. We have most likely only touched the tip of the iceberg in respect to hereditary and familial cancers. The field of genetics is pioneering and modern medical technology changes daily. What we do know, today, is with early detection and a good screening management program, coupled with prophylactic treatment, many affected by genetic defects, resulting in a high predisposition to cancer, can be saved as a number of the cancers are preventable and treatable before becoming life threatening.   Li Fraumeini Syndrome - Breast cancer before the age of 50, soft tissue sarcoma, osteosarcoma, brain tumors, lung cancer, adrenal gland cancer, leukemia and other cancers. Genetic defect in the TP-53 gene Hereditary Breast and Ovarian Cancer Syndrome - HBOC High lifetime risk of breast cancer and of ovarian cancers. Prostate cancer in men. Cowden Syndrome - Also known as PTEN, Creates a 10% risk to thyroid and a higher than average risk to breast and uterine cancers. It hasn't been extensively studied... Familial Adenomatous Polyposis (FAP) or Gardner's Syndrome is a colon cancer predisposition syndrome in which hundreds to thousands of precancerous colon polyps (called adenomas) develop throughout the gastrointestinal tract (mostly in the colon and rectum but also in the stomach and small intestine). Attenuated FAP (AFAP) is a milder form of FAP and is associated with increased risk for colon cancer but fewer number of colon polyps. Gardner's Syndrome is associated with the typical number of polyps as in FAP, but also osteomas (benign tumors of the bone) and soft tissue tumors (called desmoids). A second variant, called Turcot Syndrome, is associated with certain brain tumors (different than in HNPCC-Lynch Syndrome). All forms of FAP are associated with mutations in the APC gene. Von Hippel-Lindau Von Hippel-Lindau Disease (VHL) is a multisystem disorder characterized by abnormal growth of blood vessels (called hemangioblastomas or angiomas). Hemagioblastomas may develop in the retina, certain areas of the brain, the spinal cord and other parts of the nervous system. Other types of tumors can develop in the adrenal gland, kidney and pancreas. Individuals with VHL also have a higher risk to develop certain types of cancer, especially kidney cancer. Nearly all individuals with VHL are found to have mutations in the VHL gene. Multiple Endocrine Neoplasias Multiple endocrine neoplasia (MEN) syndromes received their name because they predispose people to develop tumors of the endocrine glands. The endocrine system is comprised of glands that secrete hormones into the bloodstream that control numerous processes within the body. The endocrine system is instrumental in regulating mood, growth and development and metabolism, as well as sexual function and reproductive processes. The major glands of the endocrine system affected by the MEN syndromes are the pituitary, thyroid, parathyroids, adrenals and pancreas. Currently, there are two distinct MEN syndromes: MEN1 and MEN2. In some ways, the two syndromes are similar, but there are important differences. Reviewed: 4/10/2014                                                                        
Tuesday, 09 February 2010 | 43412 hits
                               Photo - Courtesy of Cops for Cancer   Courage is not the absence of fear but rather the judgment that something else is more important than fear.  ~Ambrose Redmoon     SURVIVAL 101   This section is for us, who are at high risk for Lynch cancers, as well as for those who care for us.  These pages are intended as a road map, created by those who have been through the process and designed to assist others, who, hopefully, will pass the information on and continue paying it forward so families will be protected and lives can be saved.   06nkfnqkgtnsmg   Today's physicians are under more stress than ever before.  With a shortage of general practitioners nationwide and demands upon their time, as well as a lack of awareness and education about Lynch syndrome, they don't have the time or the background knowledge to answer the numerous detailed questions of the affected individual.  Lord knows we not only have a lot of questions about the management of Lynch syndrome and how to live with it, but a considerable need for aggressive treatment of Lynch syndrome cancers by our medical professionals. Most of us don't care about molecules interfacing with other molecules, the length of the strands of DNA within chromosones and the scientific characteristics which are the basic cause of a specific mutations. Our needs are far more basic.  In our world, there are enough languages we have to understand, without us having to learn and understand technical medical and scientific terminology.  At some point, medical studies and information needs to be translated into a layman language we can all understand.   Essentially, what most of us, at high risk for Lynch syndrome cancers, want to know is: Do we have Lynch syndrome? What is the effect upon my family members and my children? Are we or our loved ones going to get the cancers? What are our odds of survival? Are we or our family members going to die? At what age will we get the cancers, if we do? What can we do to help deter the cancers from occurring? Is there affordable treatment for it and if so, what is it? How do I find a good medical team who can care for me and my family? How do I do to prepare for treatment of cancers? Will it affect the ability to get insurance or will my current health insurance rate increase? Will my family be discriminated against? How can we prepare emotionally for a lifetime of living with Lynch syndrome? Are there resources for us to get assistance? What annual tests do I and my family need in order to stay alive? How do I tell my family about this inherited syndrome? How will this change our lives? Those are a lot of questions and answers to consider when one is diagnosed.  The months, and sometimes years following diagnosis, are a time of uncertainty, of being diagnosed...and especially if one is facing with the challenge of recovering from a cancer. This section is intended to assist one another through the myriad of processes, the hundreds of questions and the fears of the unknown encountered during the journey of traveling through life with Lynch syndrome.  If you have a question and/or a need, just call... 702-298-3910.  We are here for you.  That is what Lynch Syndrome International is all about...caring for one another, creating public awareness of Lynch syndrome, educating medical professionals and protecting families and saving lives.              This diagnosis is a reminder that this is the life you’ve got. And you’re not getting another one. Whatever has happened, you have to take this life and treasure and protect it. ~Elizabeth Edwards      The Diagnosis Process   The first process toward determining if you have Lynch syndrome is to research and document a thorough family medical history. The Office of the United States Surgeon General has a computerized program for the convenience of individuals to complete.  It can be printed and provided to care providers for assessment of not only Lynch syndrome but all hereditary disorders.  As well, the program has the capability to upload the documented family history directly to his/her medical record. When you research the health of family members and those who came before us, don't hesitate to ask questions and be thorough.  Note if there were any hysterectomies or any biopsies taken from family members and from where or if t here were any hospitalizations and for what?  For those who passed away from cancers, see if you can get a copy of their medical records or A death certificate. If the family history reveals three family members who have sustained what appear to be Lynch cancers, (colon, ovarian, endometrial, prostate, gastric tract, pancreatic, ureter, heptobiliary tract, renal pelvic, skin and brain) two of the individuals which are directly related to the third, and one who is under the age of fifty years old, and FAP is ruled out (known as the Amsterdam criteria or the 3-2-1-0 Rule) or is over 5% risk according to the PREMM Model online test, it is quite possible the family members may be at high risk for Lynch syndrome.   However, this criteria isn't foolproof.  It is only accurate in less than fifty percent of all families that have Lynch syndrome and is also often not indicated with those who have the MSH-6 and many with PMS2 mutations.  There are many families in which Lynch syndrome cancers evolve following the age of fifty and recent studies indicate an average age of 56 years when cancer occurs.  There are small families in which it is difficult to find this pattern.  Therefore, try to expand your family history as detailed and as far back as possible.  Also, be sure and ask about hysterectomies with women family members, and the reason, if known, as endometrial cancer is often as prevalent as colorectal cancer in some Lynch syndrome families. As stated above, in order to protect one's self and one's family, it is important to discuss Lynch syndrome with the family physician who may or may not prescribe consultation with a genetic counselor.  A genetic counselor is a very valuable resource who can determine the appropriate test for an individual in the event the physician is uncertain about Lynch syndrome testing. Dependent upon that assessment, blood may be drawn and collected for genetic testing or you may be asked to donate DNA by rubbing the inside of your check with a swab (saliva test)  If genetic testing cannot be afforded, resources (see Menu for "Support") are available in many parts of the world to assist with costs. Do not hesitate to contact us for assistance.  If a mutation of the gene is specifically identified with a family member, (referred to as a proband - the first person in the family to be tested), be sure and note the specific gene and ask for a copy of the family member's laboratory test findings. It is only the first test which is expensive ($1500 to $4500, dependent upon the lab and quality of the test.)  For subsequent first, second and third degree family members, the cost of genetic testing is substantially reduced for that specific mutation to approximately $250 to $450 per person, for the test.  Additional costs will include the physician referral and the genetic counselor if one is referred. If an individual has sustained colorectal, endometrial cancer or any other Lynch cancer and has been diagnosed with Lynch syndrome, that individual is referred to as a "Survivor." Prior to the diagnosis of Lynch syndrome, the tumor of the survivor may have been submitted for MSI testing or IHC testing.  This process is basically a pathology test of the cancer to determine if characteristics of Lynch syndrome exist within it.  It  is not a diagnosis of Lynch syndrome. If those characteristics are identified, guidelines dictate the physician will refer the survivor for genetic testing or consultation with a genetic counselor for consideration of genetic testing of Lynch syndrome. Several major medical associations are calling for universal MSI -IHC testing of ALL colon and endometrial cancer tumors as a basic standard of care.  Tumor testing is the second prong toward obtaining genetic testing for Lynch syndrome, along with the first, which is the taking of a family history (without a family member currently experiencing a cancer.) If an individual has not sustained a Lynch cancer and has been diagnosed with Lynch syndrome, that person is referred to as a "Previvor." This means the diagnosed individual is at high risk for Lynch cancers and will need to participate in regular surveillance testing in the same manner as is afforded to survivors, in order to detect tumors before they become cancerous or metastasize into the body. This regular surveillance and management for Lynch syndrome is a gift as early detection of cancers allows us to obtain early intervention through early treatment of the cancer or removal of polyps before they become cancerous and often before the cancer becomes life threatening.  It is very possible many of our previvors will never experience a full blown cancer.  Genetic testing and annual screenings are the closest thing to a cure, for us.          RECOMMENDED SCREENING FOR LYNCH SYNDROME CANCERS   It is absolutely imperative you research and document your family history of cancer, as well as keep it updated.  This family history will be absolutely necessary to help your physicians to determine the cancers which you and your family may be at high risk and which regular screenings are appropriate to protect you and your family.   While considerable hype has been created the past few years about colorectal cancer and Lynch syndrome, it is very important to remember Lynch syndrome is not solely about colorectal cancer.  While there is a high risk for colorectal cancer in families with mismatch repair gene defects, there are also high risks of other cancers.  Ordinarily, today, when we find a late staged cancer in Lynch syndrome, it isn't a colorectal cancer, but of one of it's many extracolonic (outside the colon) cancers.  So, be sure and ask family members about ALL cancers within the family (grandparents, great grandparents, aunts, uncles, great aunts, great uncles, parents, siblings and cousins0, and note them carefully, for discussion with your physician. Pay special attention to surgeries family members may have sustained, including hysterectomies, abdominal surgeries, etc. Ask specific questions.  They may not know what kind of surgery, but they may recall a word which is important, such as, "I don't know the cancer or where, but they had something called a "whipple."  Its all about asking the right questions and a lot of them, sometimes, to get to the bottom of the history. Most insurance companies and physicians follow something called NCCN Guidelines and the guidelines of their own particular associations.  These guidelines are extremely general as they are determined by "scientific evidence."  Lynch syndrome is so understudied and so much is not known, that there is very little "scientific evidence," and will not be any until better tests and markers are found and more research is conducted.  That said, the physician has to act prudently and determine the appropriate screenings based upon family history. Therefore, the following guidelines are very minimal.  If any medical professional determines your guidelines to be solely those addressed by NCCN guidelines, then it is time to find a new physician or medical doctor.  They are intentionally written vaguely to allow for physician consideration.   RECOMMENDED SCREENING     Colonoscopy: Annually, beginning at age 20-25, or ten years younger than the earliest age of diagnosis in the family, whichever comes first for those with MLH1 and hMSH2 mutations.  For MSH6 and PMS2 patients, NCCN guidelines recommend colonoscopy testing beginning at the age of 25-30 or 2-5 years prior to the youngest age of presentation of colorection cancer in the family if diagnosed under the age of 30, and repeat every one to two years.   European Guidelines recommend every 1-2 years for persons with all affected faulty genes. NCCN does not provide management guidelines for the extracolonic cancers of those with MSH-6.  They advise prophylactic hysterectomy and oopherectomy following childbearing years. NCCN Guidelines reflects:  There are data to suggest that aspirin may decrease the risk of colon cancer in LS, however, at this time, the data are not sufficiently robust to make a recommendation for its standard use.   Endometrial and Ovarian Cancer Screening: NCCN Guidelines reflect "Prophylactic hysterectomy and bilateral oopherectomy, (BSO) is a risk reducing option that should be considered by women who have completed childbearing; Patients must be aware that dysfunctional uterine bleeding warrants evaluation; There is no clear evidence to support screening for endometrial cancer for LS.  However annual endometrial sampling is an option. Where there may be circumstances in which clinicians find screening helpful, data do not support routine ovarian screening for LS.  Transvaginal ultrasound for ovarian and endometrial cancer has not shown to be sufficiently sensitive or specific as to support a positive recommendation, but may be considered at the clinician's discretion."  Serum CA-125 is an additional ovarian cancer test with caveats similar to transvaginal ultrasound.   Extra Colonic Cancers for MLH6 and PMS2:  The risk of other LS cancers is reportedly low, however due to limited data no screening recommendation is possible at this time.   Extra Colonic Cancer Screenings for MLH1 and MSH2:   Gastric and Small Bowel Cancer:  "There is no clear evidence to support screening for gastric, duodenal, and small bowel cancer for LS.  Selected individuals or families of those of Asian descent  may consider EGD with extended duodenoscopy (to distal duodenum or into the jejunum) every 3-5 years beginning at 30-35 years.  (LSI NOTE:  Discuss family history of these cancers with your physician) Urothelial Cancer:  Consider annual urinalysis starting at 25-30 years. (LSI Note:  Discuss family history with your physician and if significate discuss a screening program for these cancers.) Central Nervous System Cancer:  Annual physical/neuological examination starting at 25-30 years, no additional screening recommendations have been made. (Discuss family history of neurological cancers with your physician) Pancreatic Cancer:  Despite data indicating an increased risk for pancreatic cancer, no effective screening techniques have been identified; therefore, no screening recommendation is possible at this time; Breast Cancer:  There have been suggestions there is an increased risk for breast cancer in LS patients, however due to limited data, no screening recommendation is possible at this time.    Prostate Cancer: European studies have evidenced prostate cancers as an integral component of Lynch syndrome, though the experts believe there is need for more evidence.  LSI suggestis discussion with your physician whether annual PSA screenings and prostate exams are a prudent choice for the screening of individuals with the Lynch syndrome. European Guidelines:  "Until more studies are available, the Mallorca group does not recommend surveillance for prostate cancer in  LS families outside of appropriate research studies (see" LSI suggests you discuss the following with your physician: Examination and Review: Family History Review, Discussion of LS - Annually and include an update on new cancers found within your family history. Discussion of  Dermatological Examination for those with a family history of sebaceous or the following cancers of Muir Torre if a family history exists, or a personal history of sebaceous or other tumors as noted below: Including Muir-Torre lesions characterized including, but not all inclusive of sebaceous adenomas, sebaceous epithelioma, basal cell epithelioma with sebaceous differentiation, sebaceous carcinoma and squamous cell cancer (keratoacanthoma type.) Colon Resection: For individuals with active colon cancer that cannot be removed by colonoscopy. Subtotal colectomy or total colectomy favored with preferences of patient actively elicited. Consider more extensive colectomy for patients with a strong family history of colon cancer or young age.  Any Other Screening As Deemed Appropriate By the Physician:   Breast Cancer (Currently Being Studied) Breast cancer has been identified as an integral component of LS based upon mismatch repair germline mutation factors in breast cancer tissues from family members who are not only at high risk, but, moreover, who had Lynch syndrome cancers, such as involving the colorectum. Breast cancer is exceedingly common in the population and, therein, its occurence in Lynch syndrome families could be due to chance, but importantly, a subset will likely be integrally related to a germline mismatch repair Lynch syndrome mutation is some LS families. Therefore, it would be prudent to mount a screening and management program for Lynch syndrome in those families where breast cancer is believed to be an integral lesion.     Illustration Courtesy of Michael McCullough C      The National Comprehensive Cancer Network sets guidelines for management of colorectal cancers and cancer syndromes.  Access is free, however one must register.  To locate the guidelines for Lynch syndrome, click under NCCN Guidelines for Detection, Prevention and Risk Reduction and then click on Genetic/Familial High Risk Colorectal Screening. These standards are pretty much a minimum standard of screening.  There is an entire section on Lynch syndrome.  Mentioned above is a "gold standard", utilized by many physicians to minimize risk for the various cancers of Lynch syndrome.  It cannot be emphasized enough how very important annual surveillance is for those who are at high risk for Lynch cancers.  Within the colon, the tumors of Lynch syndrome are often very small and flat, therefore, difficult for some gastroenterologists to view.  Due to this small size, they can also become hidden within the folds of the colon.  These tumors are extremely aggressive and it is not unusual to hear survivor stories of cancers growing  and metastasizing earlier than two years, compared to the average dwell time of sporadic cancers which quite often take longer than five years. Studies have revealed those with Lynch cancers experience a higher rate of survival than those with sporadic cancers.  It is believed this may be due to the frequent surveillance testing and the detection of cancers before they become life threatening.  Therefore, don't miss those annual examinations and if your physician attempts to talk you into examinations less frequently, stand firm in insisting on being monitored annually as several recent studies have indicated is the best professional practice. There are many survivors who set a specific time each year, when their surveillance testing is scheduled.  In some families, it is done after birthdays or important holidays. The psychological advantage is the distraction of the celebration of reaching another milestone or a big event, therefore alleviating anxiety.  It allows entrance into the next phase of surveillance testing on a positive note.   Revised  4/10/2014         “The most sacred place dwells within our heart, where dreams are born and secrets sleep, a mystical refuge of darkness and light, fear and conquest, adventure and discovery, challenge and transformation. Our heart speaks for our soul every moment while we are alive. Listen… as the whispering beat repeats: be…gin, be…gin, be…gin. It’s really that simple. Just begin… again.” –Royce Addington       TREATMENT             Individuals with Lynch syndrome face a high predisposition to contract cancer.  Cancer is the uncontrolled growth of abnormal cells.  They follow their own form of development apart from the normal development of cell growth, division and death.  They may travel to distant locations through the bloodstream or the lymphatic systems (metastases) or they may occur in adjacent cells.     Individuals with Lynch syndrome have an up to eighty two percent (82%) risk of contracting colon cancer during their lifetimes.  If this occurs, treatment often involves prophylactic (preventative) surgeries, including: Colon Resection: This procedure is ordinarily prescribed for individuals with Lynch syndrome and who have contracted active colon cancer which cannot be removed by colonoscopy.  In most cases where the tumors are on the right, subtotal colectomy is favored with preferences of the patient actively elicited.  This involves removal of most the colon, leaving a small amount to be reattached to the rectum. The type of surgery one receives is dependent upon the location of the tumor and the advanced stage of the development of the cancer.  There are many types of colectomies which are performed however the most common is the subtotal colectomy. At first, living with a colectomy seems like an incredible challenge and can be frustrating, especially if one is undergoing chemotherapy shortly following the surgery.  I can still hear my wonderful oncologist softly and reassuringly uttering, "Patience...time is your friend.  It doesn't seem that way today, but trust me.  It will get better." As usual, the immense amount of wisdom she had, despite her age, was right...and it took about fifteen months for my colon to settle down and get into a routine that allowed me to do almost everything I was able to do before. Each of us is different and some may not heal as well as others.  However, what we need to realize is we DO heal and we do adjust to our life circumstances. There are ways that we can do almost anything we desire, even with an unpredictable colon!                                 Male Urinary and Reproductive Tract As well, we may require treatment for many different cancers of the gastric system, the hepatobiliary system and the urinary tract system as well as the prostate, the skin, the brain, and women's cancers.                                 Female Urinary and Reproductive Tract   Women diagnosed with Lynch syndrome face an extremely high lifetime risk for endometrial (up to 60%) and ovarian (up to 12%) cancers. (According to recent studies this risk may be even higher.)  Unfortunately, the tests currently available for womens cancers are not totally accurate, though nonetheless, are still considered important procedures to undergo annually in hopes cancers will be detected. Due to the high risk of contracting these cancers, for protection and to deter against their formation, it is recommended women consider elective prophylactic surgery including: Hysterectomy and or/Oopherectomy: This should be discussed as an option after childbearing years to deter the high risk of gynecological cancers.  Most commonly, women with Lynch syndrome have the uterus and the ovaries removed as well as the cervix. This is an extremely common surgery conducted in the U.S. today and is believed to reduce the risk of Lynch syndrome induced womens cancers. According to recent studies, the risk of alleviation from all cancers is not totally certain as there have been a few women who have contracted primary peritoneal cancer, despite having a hysterectomy. The "peritoneum" is a thin, delicate layer of cells that lines the inside wall of the abdomen and covers the uterus, as well as extends over the bladder.  Consisting of epithelial cells, the peritoneum produces a fluid which eases the movement of organs inside the abdomen. Cancer of this lining is known as “primary peritoneal cancer” (PPC) and treatment consists of much the same treatment as stage III ovarian cancer. Though these cancers are rare, it is important to be alert to the symptoms which include General abdominal discomfort and pain, such as gas, indigestion, pressure, swelling, bloating or cramps Nausea, diarrhea, constipation and frequent urination Loss of appetite Feeling full even after a light meal Weight gain or loss with no known reason Abnormal bleeding from the vagina Studies relating to recurrence of women's cancers following hysterectomy are ongoing at MD Anderson and being studied carefully.  We urge everyone who has Lynch syndrome and who has undergone prophylactic surgery to participate in these studies in order to provide a better quality of life for those in the future. Just recently, in Australia, teams of researchers are studying as to whether or not a component of Lynch syndrome exists, resulting in breast cancer. These studies have also been conducted in Finland, Spain, Lebanon and other countries. Early results indicate some Lynch syndrome survivors, with special subsets of Lynch syndrome, do contract breast cancer.  There is far more research which needs to be completed to determine the specific extent of those cancers. To protect one's self, it is always best to perform regular self examinations and get an annual mammogram. Those same researchers have discovered several cases of cervical cancer which appear to be Lynch syndrome cancers.  This necessitates consideration of surgical removal of the cervix as a prophylactic measure, as well, when considering prophylactic surgery of women's organs.  Of note, sarcomas, thyroid cancer and prostate cancer have been discovered within the Lynch syndrome.                          Revised:  9/5/2012           LYNCH SYNDROME AND THE FAMILY    Lynch syndrome is a family matter and is passed down through families.  Following diagnosis of Lynch syndrome, the most loving thing any person can do is share that diagnosis with other members of their family.  Its not just a loving act, its a moral act, especially since Lynch syndrome targets families and in most cases, there are ten to hundreds of other individuals who may be at risk and whose lives could be saved as a result of your diagnostic results. There is no "how to manual" directing individuals in how to complete this process and it is often difficult and emotional and communication between each and every family is very different.  Nonetheless, a gift of a diagnosis of Lynch syndrome is a gift of life.  It affords individuals an opportunity to grasp control over one's cancers and grants them a sense of empowerment in being involved in preventative measures in order to protect themselves and their families.  No matter how you reveal the existence of Lynch syndrome, a diagnosis leads to prevention.         When advising children of the condition, its best to do so in small increments and in a confident and positive manner.  Most individuals who grow up within a Lynch syndrome family are acutely aware of the family history of cancer, including children.  Its a situation that is difficult to conceal from a child, so its best to simply be open about it. As time elapses, children become accustomed to its existence and both positive and negative future possibilities and are therefore open to genetic testing and ongoing surveillance, following adolescence.  Finally, when they are of age, they will not only have the tools of being able to cope with it, but be able to make important decisions as to how to prepare for the future and living with Lynch syndrome. Kids are amazingly resilient and adapt to situations quite easily. Their minds operate with an incredible sense of logic and understanding.  With an open attitude and conversation, children become conditioned to prepare for testing when they become older.  If hope is emphasized, there is little need for fear.     It's not denial. I'm just selective about the reality I accept. ~Bill Watterson   Occasionally other adult family members, upon learning of the diagnosis, don't immediately wish to engage in testing.  That response is often confusing to us, especially after what we, as Survivors, have experienced.  However, it is important for us to remember an initial diagnosis of Lynch syndrome or cancer is often frightening and overwhelming. Cancer is often harder to endure for those who love and care for us than it is for us.  As a survival mechanism, we develop an early understanding with it and quickly find ways to adapt to fighting it.  While chemotherapy is terribly difficult and others see the trials we experience with it, they really can't totally comprehend how we realize our "enemy," which causes us so much pain, can also be our friend in motivating a new attitude and revitalization of survival within us. For many of us, cancer is a bittersweet experience and a brutal teacher.  Through it, we learn how to appreciate and cherish life and relationships, as well as experience a new, intense desire, stronger than anything we have ever experienced before.  We learn we have only two choices, to fight and to live or to give up and face the alternative.  The world is no longer about "me and mine," its about "us and existence." To those who care for us, what they see is cancer is a terrible unknown that devastates people.  To us cancer is a terrible, familiar enemy that we understand and instinctively know to fight, while it tries to devastate us. Finally, we, as humans, are predisposed to fight or flight, when confronted with fear or intense stress.  Some of us fight and some of us run and thus attempt to escape the threat.  Eventually, with time, and eventually seeing the alleviation of the threat, individuals often come around and submit to testing.  It takes some longer than others and perhaps the message needs to be rebroadcasted in a different, nonthreatening manner, "Genetic testing is about life." rather than, "If you don't test, you will die." Therefore, time is needed for others to adjust to the diagnosis. In that situation, its best not to push, but explain the facts in a calm, logical manner.  Simply ask the individual what difference would occur in their lives if they determined to test and leave the decision up to them.  As they see family member after family member test, they will eventually follow suit, hopefully. When speaking to genetic counselors, physicians or geneticists, only tell them what you have no problem being put down into a medical record.  Even if you say, "This is between you and me," you can't count on that not becoming a permanent part of their health record and has been known to create extreme conflict and difficulties within a family.  So, be cautious with personal information which is incidental to the family health record.  Sometimes, it is simply best to document the family history, give it to the loved one and let them give it to their counselor.       The best thing that can happen from taking a test is one may be negative and the worry of the unknown timing of the almost certain impending cancers is alleviated as are the fears of the need to protect one's children from Lynch syndrome. The uncertainty is over. The worst that can happen is not very different from the current situation without taking a test, with the exception of the positive factor that you will be able to receive yearly surveillance in order to apprehend and remove tumors before they become cancerous or life threatening.  In viewing it from that perspective, the uncertainty still exists as to when and where the cancers will come, if at all, however it is offset by the hope and the knowledge that with ongoing surveillance and early detection, the tumors are more easily detec ted early and successfully treated. In both scenarios, uncertainty is lessened or removed from one's life.  There is no more unknown and there is hope and empowerment in being afforded surveillance testing. With time to digest the diagnosis, time to see what happens with individuals whom have been diagnosed, time to educate one's self and time to assess and reassess all the options, the individual will have the opportunity to make a choice, however comforting or however painful that choice may be to us.         You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.   ~Eleanor Roosevelt      PREPARING FOR TREATMENT   Once diagnosed with cancer, a whirlwind feeling of being overwhelmed is not uncommon, as well as emotions of grief and loss.  However, with so very much that needs to be done, there is seldom time to work through the emotional turmoil.  Once diagnosed, we find everything moves very quickly.  Actually, that's a good thing.  It doesn't give us a lot of time to engage in negative thought and activity. For a more rapid and comfortable recovery, a number of us have found advance planning dramatically helps to alleviate later anxiety and worry over what hasn't been done or what needs to be done, especially during recovery or during treatment.  Not having these nagging concerns allows us to fully focus and concentrate on ourselves, in order to recover much more easily and to fully participate in treatment to annihilate the cancer.   Everything you can imagine is real. ~Pablo Picasso   Every one of us sees things through different eyes and the view in which we choose to see life and what occurs in life is often how we choose life to be, within our own realities.  In example, if we view ourselves as alone and lonely, then we ARE alone and lonely and life isn't very happy or comfortable. However, if we view being alone as our choice to indulge in peace and solitude, it then becomes a very comfortable and pleasant experience. Reality is subjective and the manner in which it exists is dependent upon how we view it to be and react to circumstances which may affect us. Some people cherish antiques and view them as rich, heritage items.  Others view them as used furniture.  Some view spectator sports as a waste of time and others consider it to be pure pleasure.  Some people view obstacles as "problems" and others view them as opportunities, making it easier to find a solution. Cancer is definitely an obstacle and a challenge.  It isn't for the weak of heart.  It confronts us with a bold defiance in its desire to overpower and to conquer.  How we choose to view it as well as view ourselves, is a very strong factor in how we choose whether or not to survive.       "Everybody needs beauty as well as bread, places to play in and pray in where nature may heal and cheer and give strength to the body and soul." -John Muir   The same holds true of healing. The way we view ourselves and our health ailment is an important part of how we heal.   When ill and while trying to recover, it is self defeating to over burden ourselves by allowing ourselves to be concerned over whether or not the house needs paint or the carpets need cleaning or the lawn needs mowing, especially if there is very little we are physically able to do about the situation. That time could better be spent resting and revitalizing our strength following chemotherapy or spent engaging in visual imagery to obliterate the tumors or even spent reflecting upon the lives of our ancestors--considering what they endured and how they overcame almost impossible odds against them in a time when life was very difficult...and drawing from their strength. It could be spent listening to music and allowing our bodies to heal, or catching up on reading that one book that caught our eye, or going through photo scrapbooks and thinking and sharing those important moments with those we love and those who love us.  When we are ill, if at all possible, apart from medical treatment, our activities should be those for which we hold a passion, not those to which we are obligated.  Positive activities and thoughts promote happiness. Happier people heal faster. Finally, advance planning and removing potential problems and obstacles from our lives provides resolution and balance, allows us to relax and to listen to our bodies, thus giving us the psychological and physical strength required to fight cancer. Below is a quick check list of things we felt may be helpful to complete prior to surgery and treatment.  Think about them, consider them, delete some, add others...allow yourself to be fully prepared for concentrating solely upon RECOVERY!  Therefore:   Spend a short period of time digesting the diagnosis and grieving--its normal, natural and necessary Stand up and take action.  Its empowering and strengthening. Meet with your family and discuss the cancer and impending surgery. Meet with the surgeon. Its your body and its your life.  Ask him anything and everything you wish! Submit to  laboratory tests and collect your own blood if desired for surgery Prepare legal documents including will and final directives (should always be done prior to ANY  hospitalization) Conduct a "spring cleaning" of home since surgery and chemotherapy may last six to eight months - wash those curtains, bedspreads, get the carpets cleaned and get the house smelling fresh, clean and welcoming for when you arrive home from surgery. Perform necessary home maintenance to last until recovery and treatment is completed Arrange for housekeeping Stock home with food provisions Arrange for home grocery delivery Arrange for yard and garden service Arrange for transportation to follow-up medical appointments and treatment. Prepare room to be warm and comfortable for recovery.  Nothing makes healing more comfortable than a well prepared room. Items you may wish to consider:   MP3 player or radio for music - music is soothing and healing. Television with remote features. Laptop with wireless capability. Lots of comfortable pillows. Telephone with intercom capability or mobile radios to summon assistance (so much easier than calling out for assistance and much less labor intensive for those who care for us.) Microwave Small refrigerator Corner shower seat (invaluable and wonderful for long, relaxing showers) Rugs on tiled floor (to alleviate from cold if neuropathy occurs) Night shirts (more comfortable to wear than pajamas or nightgowns) Reading material and glasses A good moisturizer hands, feet and dry body Baby powder to alleviate irritation from linens. Bed away from draft of window, but providing view of outdoors and sunshine Beautiful, indoor, flowering plant Warm slippers Warm Robe Bed pads to protect linens Night lights to allow vision when getting up at night. Ice Pack and Hot pack to reduce inflammation, hot pad to relax muscle contraction.   The final steps are to visit the anesthesiologist and, finally, prepare the day before surgery for the next morning. Prior to surgery, it is important to stay clear of children and individuals who have been exposed to colds and viruses.  With cancer, our immune systems are compromised and we have to be in the best condition possible, both emotionally and physically, at the time of surgery.  A simple cold or virus affects us in the same manner it affects the elderly...and can quickly become a life threatening malady by developing into more severe complications such as pneumonia. You may wish to dine at outdoor restaurants and watch DVDs rather than going to movie theaters and avoid crowded places before surgeries and while undergoing chemotherapy.  When entering areas with sick children and persons (labs, radiology clinics, hospital waiting rooms) its best to wear a mask.  You may wish to keep one on you, when entering medical or other crowded areas, in order to protect yourself.                "Healing takes courage and we all have courage--even if we have to dig a little to find it." -Tori Amos     LYNCH CANCERS AND THE TREATMENTS   If not detected early and treated or remove, cancers can metastasize within one to three years for those with Lynch syndrome.  Metastasis is when the cancer cells may travel to distant parts of the body through blood or through the lymphatic system.  As they spread, they detach from the primary tumor and they dig through the blood vessel wall to enter into the bloodstream.  Again, they must exit the blood vessel wall to enter into the distant sites.     Unlike a "Previvor" who has been diagnosed with Lynch syndrome but has not sustained a cancer, the "Survivor" is an individual who has Lynch syndrome and has been diagnosed with a cancer.  Dependent upon the extent of the cancer, treatment will vary.  Many different treatments exist, both scientific and those involving complimentary alternative medicine. The specific Lynch cancers and/or treatments for each of them include: Colon Cancer Endometrial Cancer Stomach Cancer Ovarian Cancer Gastrointestinal Cancer Renal-Pelvic Ureter Cancer Bladder Cancer Bile Duct Cancer Prostate Cancer   Liver Cancer (Hepatocellular Cancer) Pancreatic Cancer Esophagael Cancer Extrahepatic Bile Duct Cancer   Other cancers of Lynch Syndrome include Brain Cancer and Muir Torre (a skin cancer consisting of sebaceous adenomas - gland tumors - keratoacanthomas)  Breast cancer (in certain subsets) and prostate cancer have been recently added as a result of some studies.     "   The goal is to live a full, productive life even with all that ambiguity.  No matter what happens, whether the cancer never flares up again or whether you die, the important thing is that the days that you have had you will have lived." - Gilda Radner    DIAGNOSIS    Ordinarily, one of two events occur which ultimately result in a diagnosis of Lynch syndrome.  Either one gets the cancer and a Lynch syndrome diagnosis follows or a close loved one contracts cancer and family members are tested for Lynch syndrome.  With Lynch syndrome, there is always a "sacrificial lamb" who opens the door so others may live. If you ask any person who has been diagnosed with cancer or Lynch syndrome of their initial emotion experienced upon diagnosis, three words: overwhelmed, fearful and immense grief, consistently spill out as the description of their response to the devastating news. Grief is very common to loss and a diagnosis of cancer or a syndrome predisposing one to inherited cancer is  a loss--a loss of good health, a loss of control, perhaps a loss of a body organ, a loss of innocence, a loss of hope that the "family cancer thing" had eluded you, a loss of independence, a feeling of guilt and loss if one is negative for the syndrome while other family members are positive, etc.  Working through that grief is a process.   Since I came to the White House, I got two hearing aids, a colon operation, skin cancer, a prostate operation, and I was shot.  The damn thing is I've never felt better in my life." -Ronald Reagan   First,  most  of us cry, and then, as SURVIVORS and PREVIVORS, we stand up and take care of business because we simply do not have the luxury of time to actively participate in the advanced stages of grief by focusing upon the anger and fear.  There is too much to do and the stakes are far too high.  We have to learn to pick our battles and save our energy for the highest priority of survival. Certainly, its only natural those emotions would arise on an intermittent basis but often they quickly drift away as moments fleetingly disappear as time flies past us.  What is often misunderstood and interpreted as "courage" by others, is simply pure survival to us. We realize we may not have the luxury of time to involve ourselves within negativity, especially when it doesn't present positive results. We totally understand there are two options we have within our lives and we have to immediately commit to one or the other of those options.   We can either commit to life or commit to denial though I've never known anyone who has been successful over the long term in exercising denial and live long enough to talk about it.  Once we commit to life, our priorities change, as do we.  We transform, having developed an attitude of gratitude and become grateful for our families.  We recognize what we may have inadvertently missed along the road we've traveled.  Through our eyes, the resolution of life becomes more enhanced.  Things are funnier, relationships are more special, the grass is greener, the sky is bluer and little things don't bother us as much as before. One Lynch Survivor put it perfectly, "People with Lynch syndrome are the nicest people I know.  They are kind, involved and love life." One thing about Lynch syndrome survivors and previvors...very seldom do you ever hear, "Why me, why did it happen to me?" We may not like it but we understand it.  It may feel unfair but we realize, until there is a gene therapy or even a good standard of treatment, there is little we can do except get annual screenings, adopt an active lifestyle, keep a positive attitude and watch our diets. We understand it is part of our legacy from our families and those who came before us were far worse off than us.  They didn't have hope or technology to thwart the growth of a cancer.  They simply were diagnosed with cancer and at a certain point of their life, went to bed and died.  Us?  Today, we live!         I am not afraid of tomorrow for I have seen yesterday and I love today.                                                ~William Allen White   Most of us have spent our lives focusing on life and living life to the fullest as a result of being a part of a family in which cancers have struck.  Most of us have been raised to appreciate life, no matter what it brings. For many of us who have lived with a "family cancer thing" and have seen loved ones die of Lynch cancers, a diagnosis of Lynch syndrome is a blessing and brings with it a sense of finality from years of ongoing concerns and fears of the unknown.  Most human beings have a tendency to fear that which is not known to us and to gravitate toward that which is familiar. The family fear is now defined with a name and is no longer an unknown anomaly, allowing us to take control and own our syndrome.  We can be tested annually and, more often that not, Lynch cancers are highly treatable when discovered at an early stage, thus giving us the gift of enhanced longevity.  As it has emerged from the shadows, we become aware of what we are battling.  We become empowered in being able to protect our families and ourselves. We learn we are not the only ones in the world with this syndrome and begin to realize Lynch syndrome is far more common than we thought.  In the United States, alone, over 600,000 individuals are projected to have the mutated gene causing the predisposition to cancers. To put this into perspective, that is the size of the population of Boston, Massachusetts.  Amazing, huh?   Aerial View, Boston, Massachusetts Even more amazing is it is projected that less than five percent of that 600,000 persons have been diagnosed, to date. It is estimated one in every 440 people have Lynch syndrome. Very few of us, thus far, have been the only ones who have been blessed with genetic testing.  The rest are unaware and vulnerable to cancers.  Perhaps that is why it is considered a rare disease? In fact, having genetic mutations are extremely common.  Almost everyone has some form of genetic mutation--ours just happens to be being predisposed to cancers and fortunately, with today's technology and knowledge about how environmental and lifestyle factors interplay with cancer, we can protect ourselves. Therefore, due to the above, we often don't take the time to engage in the delayed stages of grief.  Some of us have surgeries and treatments we need to undergo and busy ourselves making the necessary preparations and planning to keep our household running during our time of recovery. Others, without the cancers, have priorities to reestablish, the need to develop a good medical team and readjust dreams, begin the process of annual surveillance testing, figure out the best way to prepare the children and how to live life, with this new and different perspective. So, initially, we do grieve.  Its good for us to release the emotion.  Then, we stand up and we prepare.  We prepare for life and move forward upon a course of action. We prepare for surgery or treatment.  We prepare our bedrooms for comfortable and positive recovery.We prepare our home so there are no urgent maintenance issues during the time of recovery and treatment. We plan how our homes will operate while we are navigating through the process and we take care of business and make certain our legal matters are resolved and our final directives are made, not solely due to fear but of caution and because it is a good business practice and the most loving thing we can do for our families and those who care for us.   "This year for the first time, there was a drop in the reported number of actual cancer deaths in the U.S...Although we are winning the "war on cancer," there is a remarkable opportunity to save hundreds of thousands of lives and to reduce suffering from this disease with lifestyle changes and an increased use of proven screening strategies." -Dr. Carolyn Runowicz   We learn more about our syndrome and we make lifestyle changes, realizing environment and lifestyle interplay with our predisposition toward inherited cancers.  We may choose to exercise more, work with guided imagery and positive affirmations, make adjustments to our diet and become aware of environmental factors which can exacerbate our risk.  Every positive choice we make enhances our quality of life and our chances for survival. We sit down with our family members and alert them to the risk.  If we have cancer, we prepare for the difficult road ahead. A transformation occurs instead of withering within a cocoon, we stretch our arms and we embrace life.   "Gratitude bestows reverence, allowing us to encounter everyday epiphanies, those transcendent moments of awe that change forever how we experience life and the world."  -John Milton   So, we go through surgeries and treatments, which come too soon for our hearts and our emotions and sometimes too late for some of us, having been easier if there had been an earlier diagnosis.  But we do it, because, again, we only have two choices once we have contracted the cancer. We drag ourselves to the Infusion Clinics and make ourselves walk through that door, playing the odds, fully realizing the effort required will likely pay off with more moments of wonder and beautiful days. We are acutely aware of every breath we take and the colors and the smells of the earth around us. We experience an awakening. Each day, following the completion of treatment, comes a renewed feeling of strength and a time of immense appreciation as well as a gratitude for life.  After diagnosis, many survivors focus on ways to make their lives count and on public awareness so more families can be protected and more lives saved.  Many engage in clinical trials and studies or enroll in registries so research can learn more about Lynch syndrome and the generations to follow may obtain a cure. Almost all make substantial lifestyle changes and undergo a change in priorities. Just remember...there is substantial hope, technology and treatment today that we can live a far better quality of life than those who came before us.  One thing is for certain. With the knowledge of how fragile, wonderful and beautiful life is, each of the days, months and years to come, will be special and filled with a magical wonder for those of us with Lynch syndrome.                 "If you don't ask the right questions, you do not get the right answers.  A question asked in the right way often points to its own answer.  Asking questions is the A-B-C of diagnosis.  Only the inquiring mind solves problems. -Edward Hodnett  (1841-1920)       CHOOSING YOUR MEDICAL TEAM     The General Practitioner   Aside from family members, the most important people in the lives of a Lynch survivor and previvor are their physicians. The choice of caretakers can make an enormous difference in the quality and longevity of life and we need to be very careful in determining to whom we wish to entrust our lives. First and primary is our general practitioner. He/she has to wear a lot of hats and requires special skills, including catching speeding bullets with his/her teeth, leaping over tall buildings, having X-Ray vision, hearing more confessions than the parish priest and providing as much advice on how to cope in life than a psychologist or a bartender.  He/she is our first line of defense in any illness, including Lynch syndrome and holds an enormous responsibility. Today's physicians need the above skills, especially due to the lightening fast developments of medical care, whereupon it is essential to know almost every disease imaginable, how to test for it, how to diagnose it, as well as address and document all the patient's problems within an average of fifteen minutes per visit.  It is no wonder we see most physicians, today, choosing to be specialists.  It is also no wonder we see a severe shortage of GPs today, due to the extremely high, varied demands and the required knowledge to be an effective general practitioner. In light of the requirements of today, the best GPs are super heroes and if we find one that has an inkling about Lynch syndrome or the time to research it, we have ourselves a super star that we and our families will wish to keep for life. The process of finding a good practitioner is simple, however, with our special needs, we simply don't want one that is "good."  In fact, that is true for our selections of our entire medical team. We want the very best and to find them, we're going to have to search.   Photo Courtesy of  Alex E. Proimos   The first place to begin our quest for an excellent general practitioner, gastroenterologist, oncological gynecologist, genetics counselor and oncologist, as well as other specialists dependent upon our inherited cancers, is through referral by those who work in the medical field.  Interview them as to the positive and negative qualities of potential candidates and ask who they would recommend to care for themselves and their own families.  They always know the best, most dedicated and passionate doctors. However, don't stop at that.  Check out and research the doctor.  Verify the level of education and whether or not complaints exist at the State Medical Board level of your state and other states in which they practiced.  Run a quick check of the courts to see if they have been involved in any litigation. Research what activities in which they are involved and learn more about their lifestyles. Conduct a "Google search" on them and see what turns up. Then assess what you find, very carefully. If you find your physician spends his/her weekends running marathons, be reasonably prepared to accept part of your recovery program to include exercise.  If he/she has an interest in nutrition, expect your diet to be in question and lifestyle changes to be a significant part of treatment.  If the physician writes they are interested in the spiritual health of an individual, it means they expect you to take on the emotional aspects of your medical care and to participate in your treatment in a positive, effective manner. (Actually some pretty sage advice...) The next step is to call the office of the physician who meets your criteria and ask the nurse to ask him/her if they have ever treated anyone with Lynch syndrome.  If the nurse responds, "Just a minute.  Let me check with the doctor." things are hopeful.  It means if something serious occurs, the staff isn't going to "shine you on" as what occurred above and the physician will be consulted.  If she returns on the line and advises the doctor has treated individuals with Lynch syndrome previously or even states he/she hasn't treated anyone for it but knows all the criteria for the surveillance and management of Lynch syndrome and the effects of cancer treatment, that doctor is a strong candidate. The third step is to schedule an appointment.  During the first visit, note whether or not the physician takes a family history.  If he/she doesn't, scratch the physician from your list.  The family history is important not only for hereditary cancers but any and all hereditary disorders, such as blood clots, allergies, heart problems and other matters which can arise or interfere with Lynch syndrome management.  It is a very basic standard of care, taught in all medical schools.  If the doctor doesn't take the family history, don't walk, but run out of his office.  If he does and you click with one another, come to an understanding with one another. Seeking medical care and advice and following medical care and advice is a two way street.  Just as we have expectations upon our physicians, they have expectations upon us.  Its important to discuss these with one another and make certain an understanding exists as they are the experts in their field.  Sometimes that understanding can be as simple as, "You are the doctor and I am the patient and I am trusting you to know and learn all you can about Lynch syndrome and protect and treat me to the very best of your ability and I will do whatever you feel is best for me but I need you to communicate with me and tell me what I should do.  I will commit to listening to and following your advice and learn more about my syndrome in order to become more empowered and to achieve a positive and successful recovery." Our general practitioners will be with us for years and some will care for us during OUR entire lifetimes while others will be with our GPs for THEIR entire careers.  A mutual environment of trust and confidence in one another is essential, due to the long term relationship and the nature of our disease.  The choice of a physician is extremely important to us. My general practitioner is excellent.  He has a passion for people, for life and for what he does.  With a military background, his training is outstanding. His skills are excellent.  He is a wonderful listener, is positive and full of energy.  He is always prepared and has reviewed my file prior to our appointment, knowing up to the minute what has occurred with treatment with other members of our medical team. He knows my background, both professionally and personally.  He is aware of the challenges faced in life, of my children, of my husband, of our home and where we have lived.  He is aware of the challenges of treating an independent patient as me and we have an excellent understanding with one another.  He is the expert and his job is to keep me alive.  I am the patient and my job is to follow his instructions, make lifestyle changes and keep my attitude positive in order to allow my body to work within his efforts.  I like and respect him as a person and have the utmost confidence in his abilities. Life with Lynch syndrome is greatly eased when we are so very fortunate to have an excellent general practitioner-- and one that cares, is passionate, dedicated, committed. competent and blends with our lifestyles.       CHOOSING A SPECIALIST As mentioned above, we, with Lynch syndrome, need a few specialists in order to survive and in some cases, those of us with Lynch II need more than just a few. We want the best and the most experienced.  The type of specialist we need is dependent upon the type of cancer we sustain. In looking for a surgeon or a gastroenterologist, don't look for "Mr. or Ms. Warm and Fuzzy."  Look for someone who will tell you the "way it is," and exactly what needs to be done as well as the expectations of you.  Seek out someone who loves their job and has a passion for being the best. Ask your general practitioner for his recommendation of the best specialist for YOU, not simply the "best specialist." Bedside manner is not the first thing we are seeking or want from a specialist (except perhaps our oncologist, gynecologist and our genetic counselor.)  What we need, with our syndrome, is someone with the the best knowledge and the best skills in detecting and removing cancer.   The Surgeon: One of the primary specialists many of us will need is a surgeon who will "resect" or remove the cancer and threatened surrounding organs, if they can safely be removed.  In major population centers with a large amount of resources, there are surgeons who are surgical specialists, who have an immense amount of knowledge of a specific organ as a result of their specialty.  They are able to keep on top of the newest means of technology and research discoveries.  Those are the ones we, with Lynch syndrome, need. Prior to surgery, interview your surgeon.  Verify his experience.  It has been my experience the surgeons which are the best for the resection of gastric cancers are either those who were trained or work in the large cancer centers or, today, the ones who have military experience in the Middle East, treating our soldiers.  The trajectory of IED injuries ordinarily arise from the ground upward, thereby damaging the bowels and the gastric system.  Not only are these physicians adept in colon and gastric surgeries but they are adept in successfully treating trauma situations which may occur during these surgeries.  They are the best. And when it gets down to it, when we get into surgery, we don't want the new kid on the block, despite all his training.   The Gastroenterologist: Too many individuals put too little emphasis or notice upon their gastroenterologist.  One of the most important physicians in our lives, the gastroenterologist needs to be extremely proficient, with an adept eye to seek out polyps and other anomalies in the colon or the gastric area which are characteristic with Lynch cancers.  The gastroenterologist will also assess the family history, which will determine which tests are necessary for annual surveillance.  He will examine us annually and be consulted if there are any abnormal tests that indicate possible problems in the gastrointestinal areas of our body.  Often our relationships with our gastroenterologist last for years, until the end of our lives or the end of the doctor's career. Some individuals require an annual endoscopy as a result of a family history of gastric cancers and some have none because their cancers have solely been those of the colon.  What is prescribed is dependent upon the family history so if the gastroenterologist doesn't take a family history or take the time to speak with you, find yourself another. An excellent example of a follow up examination with a gastroenterologist is as follows: "We met with our gastroenterologist in the morning as a result of referral from our general practitioner due to rising liver enzyme levels. (Surveillance following colon cancer mets, diagnosed 11/2007) My doctor had updated himself with my medical history the night before.  A chart  of the gastric system was affixed on the wall in front of me.  We discussed the human body and predispositions, conditions and lifestyle choices which could contribute to rising liver enzyme levels, such as fatty liver, diabetes, etc.  A review was conducted of current medications which could escalate the levels.  Diet was discussed, which could aggravate inflammation.  The colon's ability to function effectively was discussed. We discussed the panel of testing conducted by my GP to rule out factors which may cause the elevation of levels. Further testing was discussed, including a prescription for a sonogram and a urine cytology as well as additional testing to rule out one or two other lessor, likely factors. An appointment was set by the physician for the testing and advice given on how to resolve reflux issues.   The physician listened to concerns and examined the abdominal area with palpitations and listening to gastric activity.  One area of pain was attributed to diet creating gas and reflux. Two areas of pain appear to be unrelated to the first and are being explored with further testing.  After being educated and advised of the treatment plan, we left feeling comfortable and confident that no matter what was found, it would be resolved and treated early." Anyone who has a physician such as that is fortunate.  It is the example of an excellent gastroenterologist who is involved, takes the time to listen to us and explains information to us, allowing us to work on controlling and owning our own cancers.  This is the gastroenterologist one wants when they have Lynch syndrome.   The Gynecologist: Women will need a good gynecologist or gynecologic oncologist. There are many gynecologists who do not know about Lynch syndrome or its cancers, despite the very high risk of contracting female cancers.  Speak to your general practitioner and ask him to recommend a good that would be desired to treat either the physician herself or the physician's wife. If available, individuals at risk for Lynch syndrome may wish to seek out a women's cancer specialist, a gynecologic oncologist who should and will know the risks of the lynch cancers for women.     The Oncologist: For those of us Survivors, one of the most important individuals in our lives is our oncologist who will work with us while treating our cancers and who will remain in our lives during the "follow up" stage, for several years after treatment.  The oncologist comes into our life ordinarily following the surgery. The oncologist is our life line as we go through treatment.  They will order testing to determine if the cancers are being eradicated, prescribe and track our treatments such as chemotherapy and radiation and monitor us, often for many years, following a cancer diagnosis. An oncologist with an excellent team of oncology professionals; oncological nurses, oncological nurse practitioners and a trained, sensitive staff, is a god send.  Often, treatment time is spent with these individuals and they become a very important part of our lives and a very important part of our chances for survival.  Find an oncological team with whom you are comfortable.    The Dermatologist: Muir-Torre is a variant of Lynch syndrome which is characterized by the development of sebaceous adenomas, epitheliomas and carcinomas as well as kercantothomas  (Various tumors upon the skin) as well as the possibility of development of the other Lynch cancers.  It is important to realize skin cancers are a part of Lynch syndrome and to discuss this with our physicians for screening for the presence of these tumors.  It is important to have a good dermatologist who has a knowledge of Lynch syndrome and Lynch related tumors on our team. A good dermatologist for us, is familiar with Lynch syndrome and Muir Torre, a specific cancer syndrome, consistent with Lynch syndrome.  The dermatologist will assess your family history and scan the body for anything on the skin which appears unusual.  Dependent upon the family history, one may see the dermatologist every six to twelve months.   The Urologist: Bladder cancers and renal pelvic cancers impose a 12% to 20@ risk to those with Lynch syndrome and are more commonly seen within the MSH2 gene.  As well, studies indicate a two fold risk for men for prostate cancer.  The urologist can be a Godsend and a very valuable member of your team.  They may choose to perform an ultrasound or take a urine cytology, and many give scopes, if there is a family history of bladder or ureter cancer.  Your urologist will determine what kind of screening you need, hopefully taking into consideration family history and other factors.     The Genetic Counselor This individual is very important in our life as he/she will work with us and assist us in preparing our families for their missions in protecting themselves and their families through diagnosis.  The genetic counselor will take a family history and determine which tests are necessary to be ordered.  They will explain Lynch syndrome in detail and answer any questions a patient may have about the genetic details of Lynch syndrome, about anti-discrimination laws and be able to give accurate information and facts about Lynch syndrome. The genetic counselor, most often, will be available to assist in how to notify the family members about Lynch syndrome and be there to answer important questions one may have.   Other Specialists Lynch syndrome encompasses so many different cancers that many various specialists may be needed, including pediatricians (for the younger survivors) endocrinologists, neurologists, gynecologic oncologists, specialized radiologists and others. To find the best specialists who have a strong knowledge of Lynch syndrome, the best approach is to first speak with your GP and ask for his personal referral and with whom he would work best.  With an excellent GP, you can pretty much be assured he will only be referring quality specialists who will focus on providing you with the best of care.                                                                                       Credit:  CDC - Dawn Arlotta  by Cade Martin 2009       "So if there is a purpose to the suffering that is cancer, I think it must be this: it’s meant to improve us." ~  Lance Armstrong     LETS TALK FOOD!   Many studies have been conducted as to defining a proper diet to deter the growth of cancer.  Though Lynch syndrome is hereditary, environmental factors do play into the propensity to contract cancer.  A diet to deter cancer is simply eating good nutritional foods.  It isn't all that different from eating a normal, healthy diet.  It's simply balance. The reason diet is so significant and plays into creating a predisposition toward cancer is historical.  Accumulating data in respect to cancer is fairly new, as good statistics on cancer incidence have only occurred since 1950, although the oldest cancer registry was established in 1932.  Data on mortality, which goes back much earlier in the developed world indicates stomach cancer has decreased, taking second seat to lung cancer worldwide. However the rise of other cancers have increased, including breast cancer and colon cancers. Cancer diagnostic technology vastly improved and became more sophisticated, progressing at higher and higher levels through the years. Today, mortality rates have decreased as a result of improved diagnostic knowledge, skill and technology, resulting in earlier diagnoses.  The benefit we have seen from this is the improvement of survival. Within the United States and the western world, general technology improved during the 1900s, as well, and the world became involved in mass industrialization which put emphasis over quantity of product and created an adverse effect upon the quality of environment, creating problems such as unclean air, mass fuel emissions, polluted waters, polluted soils, etc.     As the age of affluence approached, so developed the age of convenience.  Vehicles became more readily available and less costly. Many families owned several and the family horses were put out to pasture.  As a result, today, many people have stopped walking.  Its not unusual to see them hop into the car and young moms and dads drive five or six blocks to the nearby elementary school several times a day in order to deliver or retrieve their children.  As a result of technology, instead of an everyday necessary activity, as walking once was, exercise has become a "recreational activity" and a luxury only when it can be afforded or....desired. As the consumer society developed, individuals purchased items that were convenient in nature, including processed foods, foods with chemical additives, non-stick coatings on cooking utensils, cooking with items made of plastics, etc.  This love and desire for convenience extended to quick and different food preparation methods including use of the microwave, the outdoor gas barbecue and the creation of chemically improved wood chips to enhance food flavor.  Meats became a staple in homes, used in large quantities, whereas in the past, it was only eaten in small amounts on occasion. The world developed a sweet tooth for items with sugar--sodas were no longer savored "treats" but an everyday drink, rich foods became part of the everyday diet as did artificial sweeteners.  The people of the world took to excesses as competition and products became more and more available and more and more affordable.       We began to become a "feel good" nation which focused on the desires of the individual and not the needs of the person.  The "me society" became one of entitlement and one that was prone to excess...anything, as long as it felt good.  That is where we currently are today, destroying ourselves, our environment, our communities and our families unless we find a balance. During the 1900s, food production became more enhanced to meet the demand of the new consumer society which had developed.  Methods were developed including genetic modification of food, the injection of hormone, arsenic including in animal feed, and controlled artifical and unnatural feeding of animals instead of grazing in fields.  Pesticides, meat additives, artificial preservatives, soil additives, chemically enhanced flavors, water fluoridation and a host of other items were developed to feed into the gluttony of the world. As a result, we humans began eating differently.  Instead of coming in from the fields or going home for lunch and eating fresh, wholesome foods, we began commuting further distances to work and grabbing quick, convenience items--a bag of chips, a quick cheeseburger and fries,  processed marshmallow filled cupcakes and a can of soda for lunch, or munching on a processed donut while drinking a cup of coffee on our way to work. Not only did food have to taste good but it had to look good.  Dyes were used. Flours became processed and bleached, as did rice, to create a pleasing aesthetic appearance.  Refined sugars were developed with a pretty, sparkling, crystal white appearance, rather than its natural state. The result was individuals were losing a considerable amount of nutrition required to stay healthy and had lost the natural balance of eating. The world and the human being, in its ever constant pursuit to perfect itself had been poisoning itself. The result was a flurry of studies by medical researchers to find out why people were getting ill and contracting cancers.  Study after study has determined outside influences, such as environment, diet, lifestyle and technology imposes a big effect upon whether or not one will get cancer and the more predisposed we are, the easier it will be to contract. This becomes obvious with those of us who have Lynch syndrome.  How is it that twenty percent of those who have the mutated gene don't get Lynch cancers while many acquire a myriad of cancers during their lifetimes?  What is the difference between those who have survived a cancer or two and live to old age while others succumb while young?  Clearly something occurs which increases the odds of survival for some and decreases the odds for others. It appears cancers, including those of Lynch syndrome, may have possibly evolved as a result of the above mentioned factors.       Prior to 1913, a University of Ann Arbor, Michigan professor and pathologist, Dr. Aldred Scott Warthin noted and identified a family that had a "familial cancer."  During treatment of a young woman within the family, he gleaned the members medical histories and in 1913 documented his findings of this fascinating German family. Within that family, which had been researched back to before the Civil War, it was noted there had been a history of stomach cancer, colon cancer and uterine cancer.  At the age of sixty (60) the first diagnosed died of colon cancer at the age of 56, leaving behind ten children. Three of his five sons and two of his five daughters died of a possible Lynch cancer, the men developing stomach cancers and the women, uterine cancers. Warthin died by 1936 and had documented 17 individuals from the first two generations of that family had sustained cancers, with an introduction to intestinal cancer in the third generation.  Upon his death, his associates Carl Weller and Jerome Hauser, continued his work, finding far more individuals within the family contracting similar cancers. There was little note of colon cancer. The third generation, which consisted of seventy individuals indicated only two of those individuals died of stomach cancer, fifteen died of uterine/ endometrial cancer, seven died of colon cancer, three died of rectum cancer and one died of cancer of the intestines.  It appeared the family had evolved during the 20th century and the incidence of stomach cancer had decreased and cancer of the colon had increased.  Finally, in the last generation, Dr. Henry T. Lynch, who had followed this family, following Weller and Hauser, noted the incidence of stomach cancers had dramatically decreased and was almost nonexistent with many of the cancers sustained being replaced by cancers of the colon and the rectum. We have to ask ourselves why and how the cancers evolved and changed.  Dr. John Potter, MD, PhD, of the Fred Hutchinson Cancer Research Center studied this and published an opinion piece in 2001, entitled "At the interfaces of epidemiology genetics and genomics." He determined based upon his experiences with Lynch syndrome and study of the family documented above, "High risk variant alleles, (forms of gene ordinarily arising as a result of mutation and causing hereditary variance ) such as MSH2 mutant alleles in HNPCC families, with pleiotropic (multiple) effects across generations of the same family, probably, as a result of changes in environmental exposures." What environmental factors?  Certainly smoking and diet has played a major role in the evolution of the cancers. In fact, individuals with Lynch syndrome may be at an increased risk for colorectal cancers. As a result of environmental factors, in the U.S., we have noted an increase in cancer.  Interesting to note is this trend is being followed globally as the same sort of evolution of cancers which has occurred here is beginning to occur more widely in some European countries and elsewhere in the world.          It is important we ask ourselves why the risk of contracting cancer for the average male in India is one fifth of that for the average American male? Why has the rate of colon cancer in Japan become the highest in the world and much higher than within the United States? Why do the Chinese have lower rates of colorectal, breast and prostate cancers than we sustain in the U.S., and why are there rising occurrences of these cancers now being observed in their urban areas?  Finally, why do those who consume a Mediterranean diet (lots of fruits, nuts and vegetables and very little red meat) have far less cancer than their American brothers and sisters? So, what do we do to survive?  We eat an anti-cancer diet, which is basically a balanced diet.  We exercise and protect ourselves by using less chemicals around our homes and yards, engaging in healthy activities and avoiding unhealthy environments. It has become clear to us that diet, exercise and attitude is a big factor for deterring cancer and perhaps growing and providing our own food sources are far more reliable than those commercially available to us.  Gardening our own food is certainly healthy in it allows fresh air and activity for us. What is also clear to us is, whether or not we have a predisposition to cancer or whether we get cancer, a big factor in contracting cancer and/or a specific cancer is likely a result of lifestyle, cultural and environmental impacts.  The big question is whether or not we will recognize many cancers are a result of our love and desire for technology, self gratification and convenience and what choices we are going to make in the future in order to protect ourselves and our families.                                   Cancer came back into my life twice in order for me to understand something, and I guess I still wasn't getting it. And my husband wasn't getting it, either. ~Mariel Hemingway     DIET TIPS Many studies have concluded that diets which are low in fiber, high in red meat and which don't include a sufficient amount of vegetables may cause colorectal cancer.  But what about our diet in general?  What should we be eating and what should we not be eating, especially having a predisposition for cancer as a result of a mutated gene? In looking at how cancer develops, we know cancer cells take up more sugar than any other cells in the body.  Consuming sugar doesn't make cancer grow faster, but cancer does feed on glucose as do all tissues that use a lot of energy.  A recent study has indicated consuming foods and beverages which are high in sugar create more insulin production and which is linked to endometrial cancer. Being predisposed to cancer, we should consider reducing or eliminating refined sugar from the diet in order to deter cancer as well as avoid other disease such as diabetes, etc.  The same is true to high carbohydrate foods, breads, snacks, etc., which revert to sugar in the body.  Studies indicate an impaired glucose metabolism may contribute to pancreatic cancer.  Its much healthier we break our dependence upon sugars and as one very astute Clinician has suggested, "Control the sweet tooth and keep sugar use to a minimum." Dark chocolate has been considered to be good for us and a deterrent against cancer!  The darker the chocolate, the more antioxidant it contains However caution is recommended. Only the dark chocolates are considered healthy and balance is the key. A good practice is indulgence in moderation... Limit or eliminate red meats. (The World Cancer Research Fund recommends no more than 18 ounces per week.)  Some studies indicate a reduction of 50% red meat may reduce cancer risk as much as 50%.  Recommended individual meat portions are the size of a deck of cards (about three ounces.)  Eating meat sparingly as an ingredient and taking it from the center of the plate, rather than as an entree, such as in a beef stroganoff or pastas or soups and stews can help reduce eating meat, painlessly.  We seek organic beef from animals which graze, rather than are fed with filler foods such as corn, etc.  Going vegetarian (pastas, rice dishes, vegetable casseroles, etc., several times a week can make an enormous difference and decrease in risk. Colorful vegetables are a great addition to an anti-cancer diet.  For maximum effectiveness, briefly cook broccoli, cauliflower and other high fiber vegetables rather than boiling.  Prepare beans, peas, legumes, romaine lettuce, carrots, yams, pumpkins, squash, swiss chard, greens, parsley, celery, and shitake and other Asian mushrooms. These are great recipes for those "non meat meal nights."  Recent studies indicate Omega 3 fish oils, taken in excess can possibly increase the risk of prostate cancer by 70%. Studies indicate fish is good for us, so the real key here is to exercise moderation. It is recommended to eat fish a few times a week. Other forms of Omega 3s, which indicate to be healthy include walnuts, canola oil, broccoli, cantaloupe, kidney beans, spinach, grape leaves, Chinese cabbage, cauliflower and flax seed.  Most of us love potatoes but in quantity, they aren't all that good for us.  Potatoes are fine on occasion but all too often we eat them as french fries, or with butter or fatty sauces upon them. Recent studies have evidenced the preparation of the potato can be a problem for those at high risk for cancers and snacks, particularly chips, are particularly a problem.  A recent study from Holland indicated dietary patterns with a high level of snacking may result in colorectal adenomas in those with the Lynch syndrome.  Yams, sweet potatoes and brown rice are some healthier exchanges in carbohydrates.    Brown rice, which if eaten in moderation and infrequently, can help us with our bodily functions on those special days when our colons are overactive and we need to use a BRATY diet. Its best to keep rice and other carbohydrates to a low level, just enough to balance the meal as there have recently been found a high level of arsenic in some rice.   Substituting multi-grain and sourdough breads for white bread, purchase range fed chicken and use butter instead of margarine may be an option. A recent study has determined dairy products do not put individuals at high risk for cancers, however there is still concern about the fat content within dairy products which may continue to pose a risk. Having Lynch syndrome and a predisposition to cancer, a lower fat diet is essential.  Its been recommended to avoid excess salt and saturated fats. It has been long recommended to cook with extra virgin olive oils and canola oils instead of corn oils. Green tea, dark teas and coffee has been greatly studied and it has been found all of these have a similar set of interesting and possibly useful anti-cancer compounds in them. Green tea is particularly fascinating as studies evolve.  There is concern about drinking it at warm temperatures, however other studies are indicating it may have some benefits, especially as a cold tea.  A recent study of the combination of selenium with green tea may be more effective in reducing the oncogenesis of colorectal cancer.   A study by Texas A&M conducted on the consumption of coffee indicates a compound known as trigonelline may reduce the risk of contracting colon cancer.  However, there may be a dark side to it for some individuals.  Researchers advise patients facing problems with estrogen dominance and other estrogen related conditions such as breast cancer may wish to avoid consuming the compound as it may increase their levels.  Finally, just recently, a study from Finland of Finns appears contradictory to the study by Texas A&M indicating heavy coffee comsumption indicates no benefit for the Finns, whatsoever, from drinking coffee.   To spice foods, rosemary, turmeric, ginger, thyme, mint, anise, camphor, fennel and allium are great!  (Some advocate to add black pepper and olive oil to the turmeric as it is felt pepper is needed to interact with the positive qualities. This may be true, but the evidence is slight.) Eating lots of garlic, onions and tomatoes is said to be very healthy. The National Institute of Health recognizes garlic as having anti-cancer properties as well as pomegranates, red grapes, strawberries, blueberries, raspberries, apples, pears, plums and prunes as they are considered excellent anti-cancer fruits. Actually any and all fruit is good for us! Strongly consider avoiding processed, smoked and prepared foods.  Afterall, it only takes about two minutes more to prepare homemade salad dressings, mayonnaise, mustard, etc., and they taste so much better without the high amounts of sodium, the chemicals and the preservatives prepared items have. Recipes for homemade preparation of condiments are abundant on the internet. Bagels, pastries, sodas, chips and basic junk foods aren't all that healthy for us. Filler foods are not only not all that nutritious in value but many have additives and chemicals which are not natural. We're now free to toss away that collection of vitamins which clutter the kitchen counters.  Studies indicate if one isn't deficient in those vitamins, they don't do any good.  Multivitamins show no benefit and are simply profit making products for drug companies.  Some supplements, including herbal tears may interfere with chemotherapy treatments, especially as recently discovered for ovarian cancer, so be sure and discuss taking any supplement with your physician and your oncologist. Finally, a bit of diversity is always good for an open mind, open heart and cancer free life. Incorporate evening meals, each week, to include basic Mediterranean foods, Asian foods, food from India, seafood and simply homemade soups and salads.  Experiencing diversity with foods is not only fun and wonderfully tasty, but could be life changing and life saving.       The internet is full of tips on how to protect one's self from cancer however before taking anything, be sure and discuss it with your physician to make certain it will not harm you or interfere with your treatment.  Don't let that supplement sales person sell you anything until it is discussed with your doctor. A few other health tips we've found: Discuss with your doctor, taking aspirin, as a cancer deterrent. Studies indicate it acts as a deterrent against colon cancer, especially in those affected by Lynch syndrome.   Studies have recently indicated the sun is great for us as a major contributor of Vitamin D within our body!  A new study released January of 2010 indicated of 1248 patients, those with the highest blood levels of vitamin D had a 40% lessor risk of contracting cancer than those with lessor levels.  Of course, more studies need to be completed.  In respect to taking Vitamin D supplements, long termed adverse effects are not known if Vitamin D taken in high doses. However, it does appear Vitamin D, obtained from foods and the sun, is extremely good for us and may be a deterrent against cancer.  Grab your sun screen and head outside every day to take in a few rays!  However, while Vitamin D is helpful in alleviating some cancers, a recent study indicates it does little for lessor known cancers. So, sunshine may help alleviate colon cancer, however may do little for other cancers.  One thing we do does lift spirits and makes the day brighter! Over the years, there's been a little secret few individuals have known about--a product called Sun's Soup, made of vegetables which may inhibit cancer growth. Studies have and are being conducted of it and its properties and it has been found to slow the growth of cancer tumors in mice. It may be something to think about after it has been closely studied. We need to be cautious with what we read in "studies," taking into consideration the population studied, including lifestyles, environment, ethnic diversity and many other differences between culture and societies.  Studies are simply a silhouette of conditions which exist in a specific place, at a specific time, with a specific group of people. A good place to find out if that food or supplement is good for us, check with the NIH first, who studies not only top technological treatments but natural treatments, foods and claims of cancer deterents. They have a great search engine, where you can simply put in the item and read the recent  U.S. and internationally collaborated governmental research on it.  Bottom line is we know fresh foods are good for us...we know balance and moderation with eating, as well as in life, is important.  If it looks healthy, tastes healthy and feels healthy...its probably healthy for us. Finally, this guy has some great tips for healthy living to deter's well worth reading!     With gratitude to Dr. John Potter of the Fred Hutchinson Cancer Research Center, Seattle, Washington, for his very patient and lifesaving lessons in the importance of diet and exercise, "anti-cancer style" and MD Anderson Cancer Center for their terrific tips! Revised 10/22/2012   One must not forget that recovery is brought about not by the physician, but by the sick man himself. He heals himself, by his own power, exactly as he walks by means of his own power, or eats, or thinks, breathes or sleeps.   ~George Groddeck   Exercise Study after study has exalted the power of exercise for individuals who have been diagnosed with cancer.  Exercise is key to survival and longevity in life. Cancer treatment can be devastating to the normal functions of our bodies, wasting muscles and weakening us.  Exercise keeps the muscles working and the body flowing in rhythm with itself, much the same as the inner workings of a clock.  Everything operates in sync with one another and we keep ticking! When we exercise, it eliminates a number of the short and long term side effects from treatment and deters the growth of new cancers. It helps us rest and sleep better, allowing our bodies to repair themselves without distraction. It reduces fatigue. It repairs muscular deficiencies. It keeps us flexible and enhances dexterity and balance. It cleanses our bodies of unwanted toxins. It increases strength and muscle tone. It supplies oxygen to the body, the brain, the cells and the blood, enabling them to ward off cancers and enhances resistance. It reduces blood sugars upon which cancers thrive. It makes us feel good!   Psychologically, exercise has its benefits: It helps us relax and minimizes stress. It elevates our moods. It induces a sense of empowerment and reduces the feeling of vulnerability. It makes us strong and confident, thus instilling hope.   Each of us could come up with several dozen excuses not to exercise but that takes as much energy as exercise takes.  Rationalizing reasons not to exercise is pretty counter productive.  Further, its conflicts with the rest of our character which advocates we CAN acheive anything we set our mind to acheive, including survival. With that in mind, it basically comes down to "where do we start?"  And the answer to that is very easy...all we have to do is look deep into ourselves, reflect to the past, think about applying it to the present and simply doing it, in the future.     Close your eyes and take yourself back to when you were eighteen years old.  Its Saturday morning, the sun is shining and you were eager to leap out of bed and do.....what?  Was it play tennis, go swimming, hike, walk around town with your friends, roller skate, ice skate, ski, run, dance?  Did you go bowling, ride a horse, ride a bicycle, go sailing, canoe?  Did you go to work and buck hay or stack boxes or ride the surf on a surfboard or boogie board? Was it sledding or enjoying the smells of autumn while raking leaves? When did we lose our passions to do those things?  Life is full of adventures and we'll only find them if we get up off our couches or easy chairs and get out into the world.  Relive your youth and do all the things you loved doing. Exercise doesn't have to be can be fun and educational.  Grab a basketball andput the kids or the grand kids to shame by showing off your skills and tossing a few buckets!  Listen to beautiful music and dance with a friend on the back lawn, under the stars.  Dust off that mitt and race out to catch a few fly balls or attach that leash to the collar of the dog and take him to the park where you can play ball together. Life is about people and relationships and exercise can be a lot of fact too much fun to do alone.  Grab your friends, members of your family or fellow survivors and jump into it! Almost everything in life involves exercise and activity...its just a matter of getting out there! Oh, by the way, if you don't like this message, then go fly a kite, jump in a lake, take a hike.  Just do something that gets you moving!         CHEMOTHERAPY AND SKIN   Chemotherapy often results in the flakiness, itchiness, drying, cracking and peeling of skin. While undergoing chemotherapy, it is best to use a simple, high quality, gentle moisturizer on the face and neck, stay hydrated, drink lots of juices containing antioxidants and avoid prolonged exposure to extreme weather conditions (either too hot or too cold.) When bathing, make certain water isn't too hot (or too cold.) Following bathing, it helps to dry off gently, patting one's self with a towel, rather than rubbing.  Baby oil is excellent to rub into the skin to revive moisture.  Use mild soaps and laundry detergents to avoid aggravating skin conditions and avoid perfumes with scents.  If bathing becomes painful, sponge bathing is an option. Lips often become chapped and chaffed and a good lip moisturizer is a Godsend.  Add a good skin treatment moisturizer, such as Aveeno to a tepid bath to alleviate dryness and pain.  Cool wet cloths can also be used to help alleviate pain. Avoid tanning beds and don't use cosmetics or skin items that have alcohol as an active ingredient.  Alcohol is a drying agent and can aggravate inflammation. During chemotherapy, skin may appear more transparent and wrinkles and dark spots may appear.  Most of this disappears following completion of chemotherapy, during the months following when the chemical effects dissipate from the body.  Your doctor can prescribe ointments which will remove dark spotting. Its at this time, that the skin is very sensitive to sunlight, so while undergoing chemotherapy, keep your body covered. It doesn't mean you can't go out into the sun...sunlight is vital and is an important source of very badly needed Vitamin D.  Just remember the skin is very susceptible to burning, so make certain to protect it with sunscreen. Neuropathy, a side effect from some chemotherapy treatments, causes damage to nerve endings and when serious, can cause sloughing of the skin from the hands, lower legs and the feet. Report this to your doctor immediately, if it occurs.  Gently massage the effected area with creams.  Keep feet clean and covered with warm socks. Any major skin changes need to be reported to your doctor immediately as they could create lifelong damage.         CHEMOTHERAPY AND HAIR   Some chemotherapy treatments create a thinning to the hair and cause it to be dry and brittle. Frequent shampooing is very hard on damaged hair.  To compensate, use a gentle shampoo such as a baby shampoo and reduce of times you shampoo per week to no more than three.  Allow the hair to dry by gently patting it with a towel and if at all possible don't use the blow dryer, hair straightener or curling iron.  They are very harsh on hairs. If the hair isn't falling out, then there is no problem using hair products, however if it is damaged, its not a good practice and only aggravates the problem. Perms and hair coloring are not recommended during chemotherapy for at least six weeks following, because of potential scalp and skin irritations.  Chemotherapy affects the root follicles and its not known what the results of perming or coloring of hair could be as the interaction of chemicals could create anything from hair loss to fried, brittle hair, to some interesting colors and waves. If it appears you may lose your hair, it is easiest to cut the hair short during the process.  You won't wake up in the morning with hair in your mouth or the devastation of seeing clumps of hair laying on the bottom of the shower or floating in the tub.  For emotional sanity, cutting it short is sometimes best. If hair loss has occurred, when outdoors, its best to wear a head covering in the sun and to use sunscreen to avoid sun burn upon the scalp. There are some interventions some individuals use to try to deter hair loss, while going through chemotherapy.  Be sure and discuss these with your oncologist before attempting: 1.  Some individuals place cold packs upon their head while taking chemotherapy to slow the flow of blood to the follicles so chemotherapy won't destroy the roots of the hair.  The problem with this is the chemotherapy drugs may not reach all the cancers if they are in that specific area , so do not even attempt this without discussing it with your oncologist first. 2.Some individuals use medications marketed for male pattern baldness.  There is no evidence these products work and the concern is they may interact in a negative manner with chemotherapy.  Before considering this, be sure and speak with your oncologist. Bottom line is we may just need to suck this up and view it as one of the little inconveniences we go through in our quest for life as we define and ask ourselves, "Which is really more important?  Life and the temporary loss of hair or the alternative?   In that context, it really isn't much of an issue, is it?  So, in the grand scheme of it all, "Hair grows goes is good!"   Chemotherapy and Nails:   Chemotherapy plays havoc with nails.  Often, while undergoing chemotherapy, they will be brittle, won't grow as long and surrounding skin will be dry.  They may be discolored and break easily.   It is not a good idea to cover nails as it may result in creating an environment that may invite fungus or other problems.  Its best to wait to have nail treatments such as wraps and acrylics done several months following chemotherapy, after it has dissipated from the body as they can often harbor and trap bacteria, leading to infection. While undergoing chemotherapy, you may notice a line develop across the nail.  This will disappear after chemo leaves your body, following treatment.  If nails are not cracked or broken, its probably okay to paint your nails as long as the nail remover doesn't have acetone as an active ingredient. Acetone can be pretty harsh on fragile nails. It is easiest to simply keep nails clean, trimmed and short and to use a good hand cream to retain moisture in the skin.   ANTI-DISCRIMINATION State and federal laws exist which prohibit discrimination against individuals with disabilities, including cancers, California having one of the strongest laws in the nation.  Further, federal law has recently expanded to include anti-discrimination laws based upon one's genetic history with legislation known as GINA, the Genetic Information Nondiscrimination Act of 2008, signed into law by President George W. Bush.  It is the first act of federal legislation to protect individuals from discrimination.  Though imperfect, it is a start to resolve issues with insurance companies and employees which create barriers toward testing. The basic rule is unless one actually has contracted a cancer, discrimination is prohibited by all except for life insurance companies, disability insurance carriers, long termed insurance carriers and the United States military. There is no protection for individuals who have contracted a cancer, under GINA, however ADA laws may apply for discrimination in the workplace. Information on current federal anti-discrimination genetic information laws. Information on the American Disabilities Act and enforcement guidelines Reports on Genetic Discrimination Article on GINA   If you have questions regarding discrimination or sustain difficulties with insurance companies and coverage, there is help through the Cancer Legal Resource Center in Los Angeles. The Cancer Legal Resource Center (CLRC) is a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles. The CLRC provides free and confidential information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer. A cancer diagnosis can carry with it a variety of legal issues, including insurance coverage, employment discrimination, access to health care, and estate planning. These legal issues can cause people unnecessary worry, confusion, and stress, and can be overwhelming. When these legal issues are not addressed, people may find that although they have gotten through treatment, they have lost their homes, jobs or insurance. The CLRC has a national, toll-free Telephone Assistance Line (866-THE-CLRC) where callers can receive free and confidential information about relevant laws and resources for their particular situation. Members of the CLRC's Professional Panel of volunteer attorneys, insurance agents, and accountants can provide more in-depth information and counsel to CLRC callers.             During chemo, you're more tired than you've ever been. It's like a cloud passing over the sun, and suddenly you're out. You don't know how you'll answer the door when your groceries are delivered. But you also find that you're stronger than you've ever been. You're clear. Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it's instantaneous.   ~Melissa Bank     MANAGING TREATMENT   This page is primarily links, deferring to other sites, as there is such excellent detailed information on those sites.  Please don't hesitate to contact us with any questions you may have, by writing and we will try to find the information you desire. While going through chemotherapy, side effects often occur.  It is important to keep our immune system strong so we don't catch illnesses and viruses which can affect us and our treatment. Treatment Options (An excellent article which discusses chemotherapy, radiation and other types of treatment for cancer. Managing Side Effects (A very comprehensive article with many tips on how to overcome the side effects of some treatments.) Managing Fatigue  --  and the Myths and Facts About Cancer Fatigue and What You Need To Know Managing Neuropathy Neuropathy is a common side effect that is often included as part of today's chemotherapy treatments for colon cancer.  With it comes temperature intolerance, pains in the hands, fingers, feet and legs, tingling sensations, numbing sensations, loss of balance and other possible effects.  If it becomes difficult for you, be sure and discuss it with your oncologist who can adjust the dosage of chemotherapy or find an alternative treatment. Eating Hints Excellent ideas and types of foods that help alleviate nausea.  The biggest bit of advice we found valuable in dealing with nausea was to take the anti-nausea medication prescribed by the physician about two hours before arising, with a piece of toast and a few sips of tea, water or juice.  This prepares the stomach for the daily activity and then when getting up, go ahead and eat.  Again, take the medication about thirty to sixty minutes before dinner and do so at the same time every day.  Scheduling is everything and can help many in a dramatic way for many, if effective planning is conducted. Chemobrain Chemical brain is one of the most frustrating side effects for active individuals.  This article helps explain what it is and why it happens alleviating fear and concern of its existence. In order to attempt to control it, many of us play word games to keep the mind vital and busy and do our busy work in the mornings when we need to be fresh in thought. We don't know if this works, but it certainly does provide some reassurance. The loss of memory can be frightening.  Remember, much of the effects of "chemo brain" disappear within the first year following completion of treatment and almost all go away.  If a lapse of memory occurs or you experience difficulty with navigation, comprehending directions, etc., simply stop, take a deep breath and relax.  What it is you are searching for in your mind will come in most cases...for those of us with chemo brain it just takes a little longer than usual for the memory to function. Sometimes its easy to set ourselves up for frustration. This is one of those situations where it is ripe to occur. So, try to find ways to lessen the opportunity.  In example, when undergoing chemotherapy sometimes its difficult to follow a movie.  So, watch a television show.  The sequences are shorter and the plots aren't as complicated.  Sometimes reading is difficult. Try reading a few paragraphs at a time and then take a rest, returning to it when the mind refreshes itself. Don't let chemobrain embarrass you or feel uncomfortable about interacting with others as a result of it. Most people understand chemobrain, especially after it is explained as a temporary side of effect of chemotherapy.  During conversation if you lose the conversation halfway through, apologize and explain you have chemobrain. They'll understand and most often, will help you find the words you need if you give them a definition. Try and stay away from situations involving stress or conflict.  Chemobrain can occur during those times and that is another time which is ripe for frustration.  The last thing any of us, who are fighting cancers need, is undue stress, frustration or negativity in our lives.  We have choices and the best choice is to stay away from it.  There isn't time for it in our lives. Nutrition Prophylactic Surgery to Deter Cancer Surgery to remove tumors and to remove organs which have been attacked by cancers is a common treatment.  It is suggested prophylactic surgery be conducted for the removal of the uterus and the ovaries, following childbearing years due to the extremely high risk of cancer for those who have Lynch syndrome.  The Mayo Clinic has come up with a new surgery, for colon resection, which at the same time, can also remove the female organs, without having to make a major external incision.  This is fascinating new technology which accelerates the rate of recovery for individuals, called natural orifice surgery. Presentation on Colon Resection Understanding Cancer Treatment                                
Saturday, 27 February 2010 | 56158 hits
.style1 { text-align: center; } THE VERY FIRST LINE OF DEFENSE IN THE SURVIVAL OF LYNCH SYNDROME IS KNOWING ONE'S FAMILY HISTORY Lynch syndrome is inherited through families in an autosomal dominant manner. This means an inherited mutation of the mismatch repair gene, coupled with a normal gene will produce children that have an estimated 50-50 chance of contracting Lynch syndrome. The ONLY way to diagnose Lynch syndrome effectively is first through a careful review of the family history. What the physician is looking for are three individuals, two of which are directly related to the third and who have sustained a Lynch cancer. (Colorectal Cancer, Endometrial Cancer, Gastric Cancer, Ovarian Cancer, Hepatobiliary Cancer, Pancreatic Cancer, Ureter Cancer, Renal Pelvic Cancer, Skin Cancer (Muir Torre), Prostate Cancer, some subsets of Breast Cancer and Brain Cancer.) This basically leads the physician to determine whether or not to prescribe genetic counseling and/or genetic testing which, if positive, allows individuals diagnosed with Lynch syndrome to obtain annual screening tests to detect cancers early, when they are often treatable and not life threatening. Generations of a Lynch Syndrome Family - A Personal Story Knowing family histories and sharing them with physicians not only helps protect us in avoiding certain hereditary illnesses and predispositions to chronic conditions but alerts us to possible complications which could occur during surgeries and conditions which can affect recovery. An added benefit is it allows us to learn of family traditions and stories of the trials and tribulations of our ancestors which can also greatly assist in achieving a strong recovery and survivorship. A good first step toward this process is to view the free, public resource available through the Surgeon General's Family Health Initiative addressing documenting your family history. Their site has software available for use to document and print out the family history for family members and the health care provider. In addition, it has the capabilities for the family history to be downloaded into the medical file in your physician's office. After reviewing it carefully, sit down with your parents and ask them their medical backgrounds, questions about their lives. Where were they born? What ethnicity were they and their ancestors? How and where did they grow up? Were they raised in the city or on a farm--in a small town or in a major metropolitan area? How did they get their water -- from a well, or a municipality? What did they eat and how was it prepared? What was their life like? Did they work in factories or spray crops? When and where were they born? Were they ever ill or hospitalized? Did they contract any cancers? At what age? If so, where was the cancer located? Where were they treated? These questions are extremely important as environmental factors have every bit as much of an effect on cancers as hereditary factors and can provide clues into what familial or inherited cancer condition one may have. Everything is interrelated when it comes to cancer. Therefore, list every occupation, every situation, everything those ancestors did and when, where and at what age it occurred. Ask about their parents, grandparents, brothers and sisters, nieces and nephews and pose the same questions you asked about your parents' past and lifestyles. Every answer they provide will render little clues as to the information you will need to protect yourself and your family. In many families, adults and other family members have often kept health matters private and may at first appear uncomfortable about answering these questions. It is important to ask the right questions and to prompt them and job their memories as to where there was removal of colon polyps, skin melanomas, abdominal surgeries, brain disorders and hysterectomies. Be certain to document each and every one. When documenting the family history, don't forget to ask about hysterectomies. Today, one of three women have had a hysterectomy. This information can significantly provide clues or information to create a direct relationship as endometrial cancer may be equally as prolific in Lynch syndrome as colorectal cancer. Its also not unusual for family members to have little or no knowledge of how grandparents, aunts and uncles or cousins died so simply ask them when and where...then go to the local library or newspaper office and research the obituary or pull the death certificate from the state or country department of vital records. When preparing a family history, its a good practice to not limit one's self strictly to Lynch syndrome, but to document every possible condition parents, siblings, children, grandparents, aunts, uncles, nieces, nephews, cousins and ancestors could have had. This process is often eye opening and can provide a totally new perspective in respect to other potential unknown health conditions. While performing research upon our ancestors and related family members, it only helps us to learn not only how they died but what our ancestors endured in life. This can prove invaluable toward our own sense of survival. The characters of our ancestors can serve as clues as to how they survived unthinkable conditions. Those clues may dramatically help us weave our way through the survival process. In reflecting upon how they lived and managed despite incredible adversity, we can draw from their strength. Once the family history is provided to the doctor, he/she will assess it and by the use of online tools or by expertise, will determine the level of risk for inherited conditions and whether or not to refer you to a genetic counselor or grant a direct referral for genetic testing. The taking of a family medical history is considered a "standard of care," taught to all physicians at all medical schools and is considered "good medicine." However in today's quickly evolving technical world, there are an overwhelming number of things for physicians to know. Therefore, it is reasonable to assume your physician, gynecologist, urologist, dermatologist, obstetrician or pediatrician may not be aware of Lynch syndrome. We may have to provide our care providers with guidelines and resources so they may become familiar with it. A family medical history will assist health providers in not only determining risk and patterns that may be relevant to one's own health but also provide them with information to recommend prevention tools to reduce the risk of disease, decide what diagnostic tests to prescribe, assess whether or not genetic tests are necessary, diagnose a condition that may not otherwise have been considered, determine whether or not other members of your family are at risk for disease and other measures that could be life saving. The family medical history won't predict your future health but will allow you to know if you are at high risk for disease, life threatening or chronic conditions. The past provides clues to our futures so we and our families may remain happy, healthy and intact. Researching your family medical history is not only good sense and a loving thing to do, not only as parents, but as a responsibility of a patient to provide to the care provider. LINKS FOR FAMILY HISTORY RESEARCH Family Medical History Information from Ohio State University American Medical Association Article on the taking of a Family History Family History Tools from the National Genome Research Institute Family History tool by SFGenomics Reviewed 4/10/2014
Monday, 15 February 2010 | 20938 hits
28. Donate
  Thank you for considering donating to LSI. Lynch Syndrome International is a 501 (c)(3) public charity, IRS Tax ID 27-0571530. All donations are tax-deductible as allowed by law. LSI is an all volunteer organization and no person involved with it is compensated for their good efforts. As such, our operational costs are minimal and all donations are utilized toward project based efforts. One hundred percent of donated funds are utilized toward LSI targeted projects and basic operating costs. Ten percent of all general donations received is targeted toward assistance in financing research endeavors and ten percent of all non-targeted contributions is directed toward providing financial assistance for patients. The remaining funding goes toward our public awareness projects, including Lynch Syndrome Hereditary Cancer Public Awareness Day each March 22nd of each year, providing tens of thousands of physicians with information on Lynch syndrome each year, exhibiting at trade shows, working with organizations and coalitions to promote Lynch syndrome awareness and education, sponsoring Lynch syndrome events through the country and across the globe, distribution of publications, creation and distribution of radio spots, recruiting for Lynch syndrome clinical trials and advocating for hereditary cancers with state and federal lawmakers. In order to stretch every dollar received, we operate on a shoe string and are truly depression proof. In lieu of paying the over $200,000 cost of maintaining a headquarters, expensive insurances and benefits, staffing and other overhead, we work off modern technology, receiving our software for meetings, communication and conferencing from in-kind donations or though nonprofit donation services. We strongly rely upon in-kind donations for operational cost line items and for conversion into cash, such as our Ebay auctions. Currently, approximately ninety (5%) percent of our cash funding is derived from the generosity and passionate commitment of members of our Board of Directors. Approximately 85% comes from our base of those affected by Lynch syndrome and 10% from corporate sponsorship. We anticipate this to dramatically change in the future as corporate and civic groups have begun to embrace us, during our fourth year of operation. Every dollar counts! Each is the equivalent of nine brochures. $50 is the equivalent of 500 brochures, one of which most likely will reach a Lynch syndrome family and perhaps save five to ten lives from inherited cancers. LSI operates as a true nonprofit, in every sense of the word and our success is directly attributed to the outstanding volunteers who are passionate in working with us, in a grassroots manner, throughout the world.   HOW TO GIVE Lynch Syndrome International utilizes JUSTGIVE.ORG, a nonprofit organization, to process all our online and credit card donations. It is a fast and user friendly process to contribute toward a very worth cause that will protect families and save lives. Simply click on the green link below.   We also utilize Paypal.   Shop at AmazonSmile .   Lynch Syndrome International   Another method for contribution is through This occurs by utilizing merchants, nationwide, who will donate a certain percentage of what is spent to LSI. We encourage individuals to consider this by simply registering with them and shopping with their online merchants.     If you wish to contribute by check, please mail the check, made payable to Lynch Syndrome International to:   Lynch Syndrome International 3650 South Pointe Circle  Suite 205-9 Laughlin, Nevada  89029 702-298-3911   If you have any questions about donating, please don't hesitate to contact us at the phone number listed above or through email.   Thank you for your compassion. You may rest assured your contribution will protect families and save lives.        WITH IMMENSE GRATITUDE TO THE FOLLOWING ORGANIZATIONS, FAMILIES AND TRULY TERRIFIC INDIVIDUALS, WHO HAVE STOOD UP AND JOINED US IN OUR MISSION OF PROTECTING FAMILIES AND SAVING LIVES BY DIRECT DONATION, IN KIND DONATIONS OF GOODS, COLLATERAL OR SERVICES TO ASSIST US IN PROMOTING PUBLIC AWARENESS AND EDUCATION OR BY SPONSORING PROJECTS WHICH DIRECTLY OR INDIRECTLY BENEFIT LYNCH SYNDROME IN OUR MISSION TO PROTECT FAMILIES AND SAVE LIVES...                                    TO YOU, WE ARE ETERNALLY GRATEFUL--- AS WITH YOUR HELP, MANY WILL LIVE!                      Champion Exposition Services (Exhibition Space) Kraft Foods Foundation Minerva Medical Communications Oxford Communications Estes Refrigeration Merit Dining Group, Santa Monica, CA. Kaiser Permanente - Northern California Cumuli, Inc., Manchester, Washington Delve, LLC Vanguard Charitable Endowment Program, Boston, MA. U.S. Cellular Beckett Gas, Inc. Metro Exhibits Myriad Genetics Edward Jones Investments ASCO NCCN American Society of Human Genetics National Coalition of Oncological Nurse Navigators Midwest Regional Chapter Of the American Cancer Society American College of Physicians National College of Physicians, Northern California Region Intuit Microsoft Adobe Systems Pier 39, San Francisco Citrix Genetic Alliance Google, Inc. N2N Security OMED Ohio Talent Seekers Tahoe Joe's Restaurants University of California, Davis Medical School California State Department of Public Health International Congress of Human Genetics Colon Cancer Challenge Foundation Soroptomist International Amgen, Inc. WG Health Systems Canvas and Cocktails, Inc., Denver, Colorado Lamar Signs, Topeka, Kansas Your Cause Trustee for PG&E     A Special Thank You To the Following Persons Who Are Dedicated Toward Those With Lynch Syndrome and Who Have Contributed Immensely Toward Lynch Syndrome International by Donating Time, Services, In-Kind Donations, Promoting Lynch Syndrome, or Direct Contributions To Lynch Syndrome International Projects:   INDIVIDUALS AND FAMILIES   Dr. Sapna Syngal - Dana Farber Dr. Henry Lynch - Creighton University Dr. Uri Ladabaum, Stanford University Anya Prince - Cancer Legal Resource Center Scott Weissman, MS, Northshore University Health System Dr. Patrick Lynch, MD Anderson Dr. Stephen Lanspa, Creighton University, Omaha, Nebraska Dr. Hans Vasen, Leiden, Holland Dr. Jane Green Dr. Dawna Gilchrist Sir John Burn, Great Britain Dr. William Grady, Fred Hutchinson Cancer Center Dr. John Potter, Fred Hutchinson Cancer Center Dr. Rick Boland Deb Duquette, Michigan Department of Public Health Peggy Cooper, University of California, San Francisco Robin Bennett, University of Washington Cristi Radford Margo Thelan Deb Duquette Andy Pignataro Agency A Little Insight, Vacaville Northshore Healthcare Sloan-Kettering MD Anderson Mayo Clinic Ami Blanco, UCSF Dr. Noralene Lindor, Mayo Clinic Jackson Medical Supply Delva LLC San Francisco Giants Players Toyota of Vacaville Western Digital Corp. Meyers Corp. Resenser Hotels Napa Valley Wine Train Pier 39, San Francisco, California De Young Museums San Jose Sharks San Diego Chargers Oakland Raiders San Francisco 49ers Vida Blue Brandon Crawford Michael Huff Sheryl Crow Jeffrey Leonard Shawn Estes Scott Garretts Mark Davis Jack Clark JT Snow Chili Davis Disneyland Knotts Berry Farm Kasey's Kreations, Mexia, Texas Chardonnay Golf Club, Napa, California Mustards Bar and Grill, Napa, California Pampered Chef Waste Management Corporation Simmons Management Group, College Park, Maryland David Wakefield Blue Ridge Services, Abingdon, VA. Judith Ruggiero Susan Olson John Nelson Dr. Elizabeth Herrman Myriad Genetics D.L. Ryan Companies, Ltd. Cabana Pools, Houston, Texas Edward Jones Company The Rhoades Family The James Snelling Family for Jason Snelling The Samson Family The Stephen and Linda Bruzzone Family for Hap Snelling, Marcella Snelling Jacob The Beth Fairfanks Family The John and Cheryl Stark Family The Fabiani Family The Hamilton Family The Michael O'Hara Family Eileen Grubba The Joseph Roberson Family Maureen Clark Family The Mandy Matthews Family Julie Libman Family Cheng Family In Dedication of Uygen Tran The Jamie Loveland Family in Dedication of the Lynady Family Alexis N. Smith Brian Sullivan Robert Burke Family Roque Collazo Family Joey Crupi Joshua Harris Anthony Giordano Family In Dedication of Jennifer Palumbo Frederick Barbieri Family for Jennifer Palumbo Donna Harran for Jennifer Palumbo Joseph D. Crupi Family for Jennifer Palumbo Margaret Spinelli in the name of Louis Maniscalco and in the memory of Amy Maniscalco in the name of Josephine and Mike Reitano Amy Berman Dr. Alison Beltzer Spinetto Family John Ranieri Family The Stephanie Meyers Family Frank and Helen Bruzzone Trust JoAnn De Francesco Constance Menafee Alyssa Moss dedicated to Carolyn Moss Anonymous dedicated to Steve and Linda Bruzzone Brian Sullivan dedicated to Joseph Crupi Terrie Arnold Family Sally Ortgies Family Dr. Sypna Syngal, Dana Farber The Popa Family in Honor of the Birthday of Linda Manson Linda L. Gibb in Honor Of The Birthday of Linda Manson Gail Kennedy In Honor of The Birthday of Linda Manson The Philip Alward Family The Virginia Brannan Family Janet Peirce Family Jennifer Taylor Family Margaret Davison Family Dr. Sypna Syngal, Dana Farber Bernard A. and Gabrielle Fenster Family R Ramspacher Family The Caspers Family JoAnn DeFrancesco Selena Martinez Family Leanna Dabney Family Kelli Uldahl Family Kringle Family Andy Pignataro Agency A Little Insight, Vacaville, CA. Toyota Vacaville Serrato Family Ashley Thompson Helen Reynolds Jay Yerkes Robert Spratt Family Brownridge Family Judith Reed Vaughn Family Barb Kringle The Gilbert Family Lynn Tufield in Honor of the Birthday of Eileen Grubba The Gillingham Family The Stevenson Family The Knights Family The C. Serrato Family Ashley N. Thompson Helen Reynolds Jay Yerkes The Robert Spratt Family Ludwig Family K.F. Brownridge Family K. Vaughn Family Richard Brown Family Betty Beaird Lynn Marie Killops In Honor of the Summer Family In Honor of the Caspers Family Latwa-Koko Family Ken Oxley Tim Krenik in Honor of Julie Krenik Gabrielle Fenster in the Memory of Mary Augustine In Memory of Kate Murphy M. Martin Family VonMosch Family The Jill Chang Family The Hufford Family J. Bennett Family Barry Bresler Family David Wortman Family Jamie Loveland In Honor of Jenn John Sawasky Family Kim and Kathleen Sawasky Family C. Lennon Family E. Longmore Family P. Whitworth Family Sharon Francz Myra Martin Beth Darmstadter Elizabeth OBrien Glenn Brown Emily Atkins Cindy McClain                                IN TRIBUTE TO TEAM COURAGE - THE SISTERHOOD OF THE TRAVELING GENES Through extensive family tree research and genetic counseling, the seven children of Sam and Audrey Wetzel, one by one were genetically tested for Lynch Syndrome following the death of their mother, Audrey, who passed away, March 7, 1991, of colorectal cancer. Three children were diagnosed, Stephanie Wetzel-Toole, Marlene Wetzel-Bloomfield and Gerri Wetzel-Schoutko who are now undergoing a journey of embracing life. Together, with family and friends, they created a family organization...The Sisterhood of the Traveling Genes, to create public awareness and is supporting LSI. Their journey continues….with 19 children, between Stephanie(7), Marlene(7), and Gerri(5), they now face the task of having each of the children genetically tested, praying they flipped the coin heads up and did not inherit Lynch Syndrome. It is a journey to be proactive… Aug. 2012 Marlene Wetzel-Bloomfield had a complete hysterectomy followed by Stephanie Wetzel-Toole who had her complete hysterectomy in Dec. 2012. Having this surgery Stephanie and Marlene removed a huge part of the risk of developing endometrial cancer. With all pathology reports clear for Marlene and Stephanie they both breathed a sigh of relief. A journey that has thankfully had all three sisters getting colonoscopies proactively for 15 years. Knowing their mother died so young and so fast, we wanted honor her memory and be proactive in their health. Stephanie and Marlene’s journey is not over. To remain cancer free they will have to be vigilant with our health and stay on top of our wellness with yearly screenings. A journey that led their family to find out Gerri Wetzel- Schoutko, who in Jan. 2012 became the seventh family member to be diagnosed with cancer. At age 44, nine years after her first cancer diagnosis, Gerri was diagnosed with a second cancer, Endometrial Cancer. A journey that has recently shown the cancer, malignant thymoma, that Gerri was diagnosed with nine years ago at age 36 has reoccurred. And, finally, a journey which lead them to step out of themselves and into the world to promote public awareness for others and to live outside honor of them...and of their family which is standing behind one another and helping others.   Beth Darmstadter, honoring Marlene Wetzel-Bloomfield,  Elizabeth O'Brien in the name of Stephanie Wetzel-Toole Glenn Brown, Emily M. Adkins in the name of Stephanie Toole, Cindy McClain, Teresa and Joel Andreani in the name of Stephanie Wetzel Toole Anthony LaCerva, Jennifer Lybarger, Alan Chonco, Elaine Breiner in the name of Team Courage and Stephanie Wetzel Toole Jessica Kaminski, Anna P. Schoutko in honor of Gerri Wetzel Schoutko, Jeremiah and Diane M. Dunleavy D.C. and Paula Thompson, Timothy and Mimi R. Burke, Ellen Breiner in honor of Stephanie Wetzel-Toole Debbie Donofrio in honor of Stephanie Wetzel-Toole, Timothy Murnane in honor of Stephanie Wetzel-Toole, Jesse Sawyer Linda Carter, Brenda Budzar, Sandra Maggio, Mary Ellen Volpe, Daniel Jones     Marlene Wetzel-Bloomfield Family                                       Mary Ellen Volpe Stephanie Wetzel-Toole Family                                           Sandra Mazzeo Daniel Jones                                                                     Teresa and Joel Andreni Family Anthony LaCerva Family                                                    Jennifer Lybarger Family Alan Chonco Family                                                           Elaine Breiner Jessica Kaminski                                                               Anna P. Schoutko Gerri Wetzel Schoutko                                                       Jeremiah Dunleavy Family Timothy and Mimi Burke Family                                          DC and Paul Thompson Family Debbie Donofrio                                                                Bethany Jackson Marc Ramsey Family                                                          Jesse Sawyer Lynda Carter                                                                     Timothy Murnane Terry Zimmer                                                                    Mariellen Griffith Family Peter Bennett                                                                     Sandra Mazzeo Team Courage Thomas Bullock in honor of Stephanie Wetzel-Toole               Margo Aprile Jeannie Silver in the name of  Team Courage                        Patrick Ilwee in the name of Stephanie Toole Bethany Jackson in the name of Kerry Murphy-Duarte            Daniel Stefancin Nassim and Corinne Lynch                                                   Kevin and Melissa Meehan in n/o Stephanie Toole A & J Colarusso                                                                  Glen and Tony Northrop in the name of Wetzel-Toole Danette and Edwin Arlinghaus                                              Patrick  and Cynthia Hyland Sheila T. Becker                                                                  Arthur and Diana M. Gold Michael and Maureen Chambers                                            Christopher and Amy Kemp David and Tamara Show                                                      Joseph and Ann Schleckman Robert and Elizabeth Bullock                                                 Diane and James Ridge Thomas Jordan and Mary Ellen Jordan                                    Brian and Ann Horning David and Chr istine McCallum                                              Mary Anne and David Smith Gina and Dino Tianello                                                          Maryann and Thomas Boyer Daniel and Anna Slattery                                                       Laura Wise-Maher Timothy and Nancy Rowell  Team Courage                             Thomas E. Giffels and Ann Giffels Julia and Jeffrey Tullos                                                          Richard and Catherine A. McCarthy Michelle and Jonathan Jarc                                                    Dawn and T heodore Bilski     Brendan and Mary Gannon                                                    John Coleman Robert and Josephine Litten                                                   Gregory and Marlene Bloomfield Judy Kautmowan                                                                  Kurt and Susan Brocone Janet Tyburski                                                                      Suzanne Olesksy Gilbert and Barbara Sherman                                                 Jennifer Ontko Matthew and Melinda Lashutka                                               Toni Northrop Elaine Breiner                                                                      Anonymous in the Name of Janice Rettig                 Team Courage - Sisterhood of the Traveling Genes 2014 - Jill Chang Gang - With Gratitude   Dawn and  Theodore Bilski                 Mary Jo and David Farr                   T.C. and J.L. Andreani   Carol D. Fier                                        Peter and Pamela Barnes              John R. Coleman Peter Barnes and Katherine Barnes   William & Celia Dorsch                    Brendan and Mary Gannon Joseph & Ann Schleckman                   Janice & James Rettig                    Patrick & Cynthia Hyland Karen Levis                                         Todd and Mary Gannon                 Arthur and Diana Gold Gary and Ann Bish                               Caroline R. Evilsizer                      Gina and Dino Tianello Timothy and Patricia Jarus                   Dennis and Barbara Unger           Vicki and John DeMarco Timothy and Dawn Liston                    David and Christina McCallum       Christian Chang Glenn Brown                                        Duane Kunze                                 Mary Gannon Janice Rettig                                        Tony Northrop                                Peter Kwiatkowski Elaine Breiner                                       Michelle George                             Kathleen Markling Laura Grahovac                                    Kelsie Brown                                  Glen Brown Duane Kunze                                        James Power for Mary Gannon      Anonymous for Janice Rettig Sherry Parker                                       Frederick Slezak                             Matthew Zugg Cindy Leonard                                      Laura VanDale                               Laime Breiner Chantal Walsh                                      Lauren Lowell                                Madyson Kessler Halle Krells                                            Linda Mathers                               Hannah Allenson Isabelle Romeo                                     Cari Cisar                                      Phil Kasumell Kathy Francescani                                 Susan Streitel                               Rebecca Wetzel Hannah Marek                                       Kelly Reissue                                Dede MacNamee Gold Jessica Paul                                           Maggie Hoffert                              Elaine Gregory Iselin Dimacchia                                     Louise Gorman                             Jordan Family Mindy Conway                                       Rose Zychowski                            Brian Conroy Kari Horning                                          Katie Barnes                                 Michelle Klepatzi Becky Boatmen                                     Anne Giffels                                  Katie Marklin Melissa LeMasters                                 Marie McNamara                            Jacob Ott Susan Lattham                                      Julie Herman                                Tony Northrop Elaine Breiner                                       Anonymous for Janice Rettig           Kathleen Markling               Ginger Withers-Withers, allace Hawthorne House dedicated toward Jill Chang Jane Deutschle in honor of Linda S. Mather, Mollie Mather in honor of Linda Mather, dedicated to Betty Simpson Carolyn Dumond in Memory of Brad Horn, Daniel Dicesare in dedication to Linda Mather    Michelle George in the name of Jill Chang James Powers in the name of Mary Gannon                                    Mary Popa In honor of Linda Manson Linda L. Gibb in honor of Linda Manson The Mathews Family in honor of Laura Leigh Wetsel and Rebecca Martin The Nagel Family in honor of Laura Leigh Wetsel and Rebecca Martin The Vaughn Family in honor of Laura Leigh Wetsel and Rebecca Martin Edward and Lori Hunt Family Daniela Dau Brenda Moore Robert and Karen Gay Family Patty and Brad Whitson Family Richard and Audra Alexander Family Barry Jackson William and June Smith Family Timothy and Rebecca Wortman Family Rita Kiscaden Leo and Cindy Thurlow Family Michael and Sarah Haas Family Michael Wortman Family Robert Sims Family David and Debra Wortman Family Joseph and Jennifer Holifield Family Tonya and Chris Duckett Family Susan Snapp Family Gregory and Sandra Fahn Family John and Linda Maloney Family Guy and Pamela Austin Family Gary and Kim Wright Family Bryan and Misty Hawk Family Kathy Thomason Family Lee and Jamie House Family Thomas and Mary Graham Family Stewart and Kris Fisher Family Tony and Tammy Harmon Family Donna McCarty Family Matthew and Kristie Carr Family Patrician Wiesehan Family Lindsey M. Wortman Family Brad and Vanessa Baker Family Daniel Jones Family Oneida Hotaling-Covert Family in Honor of Jen Schoen and All Those With Lynch Syndrome Angelo and Sharon Centrone Family Clinton and Rebecca Carson Family Louise and James Alexander Family Wendy Silverman Family Judy Mitchell Family Larry Geier Family dedicated to Danielle Ripley Burgesss Natia Porter, memorializing Lela Betsukeli Janelle Guthrie dedicated to Gene and Jeanette Foster Margaret Spinelli dedicated to Josephine and Mike Reitano in memory of Amy Maniscalco Margaret Spinelli dedicated to Louis Maniscalco, in memory of Amy Maniscalco Bethany Jackson dedicated to Kerry Murphy Duarte Diana Catargiu Kathlelen Weinberg, With Sympa thy to the Family of Lawrence Heidenreich Scott Yount Reagan Callahan David Hayes Sarah Kneller Dana Catargiu Kathleen Weinberg Scott Yount Reagan Callahan Linda Mather Linda Ronca in Memory of Paula Rubin Patricia Elliott Cathy Mills Mary Bolton in the name of Chris Bolton Barbara Kringle Family Susan Rosen in the name of Cathy Nobil Dutton Jennifer Cords in the name of Dianna Olnhauser Rae Therrien Family Cheryl Stark Family In the name of Linda and Steve Bruzzone William Harb, MD, Nashville TN Julie Libman Douglas L. and Tonja Baker Family Jamie Loveland in Honor of Jenn Bethany Jackson in honor of Kerry Murphy-Duarte Scott Eaton in honor of Michelle George Angela Teles in memory of Paula Rubin Susan Rosen dedicated to Cathy Nobil Dutton Rae Therrien Family Mary Bolton dedicated to Chris Bolton Jennifer Cords dedicated to Dianna Olnhausen         Updated 4/9/2014       Step Out In Style With LSI Bling!!!!!   ...with this stunning Lynch syndrome awareness bracelet, and help Lynch Syndrome International save lives and protect families, as well!       Hand crafted from luster pearls, with a Swavorski crystal core, the sheen of the Lynch cancer colored pearls are radiant, as each is centered between beautiful, Swavorski crystals...graduating back toward sterling silver coated beads.  A beautiful, subtle, quality item for all the women in the family, representing support and remembrance of all those loved ones who have lived and lost as a result of Lynch syndrome, it serves as an everconstant reminder to always remember to embrace the beauty of life.   Reflecting the colors of the cancers of Lynch syndrome, the pearls and silver beads  represent:   Gold (Yellow) - Childhood Cancer and Bladder Cancer Teal -Ovarian Cancer Dark Blue - Colorectal Cancer Pink (Peach) Endometrial and Breast Cancer Lavender - Pancreatic, Esophagael Silver - Gynecological Cancer (New Zealand)       Ovarian Cancer, Australia Brain Cancers Muir Torre Green:  Renal Pelvic Cancer         Liver Cancer Periwinkle Blue:  Prostate Cancer  - Esophagael Cancer   The one difference between the bracelet depicted and that actually delivered is a periwinkle blue pearl resting between the gold pearl and the sterling pearls, which makes it even more beautiful.   This classy bracelet is a great way of making a very strong statement of empowerment.  It is perfect as a gift for your loved ones, or for the physician, the genetic counselor, or that very special nurse who cared for you or your loved ones!  Delivered in a beautiful, quality box and just in time for Christmas!     Sizes:   Small (6")   Medium (6.5")  or Large (7")            Order yours today......   $32 per bracelet covers postage, handling and for those in California, California State tax.  Buy more than one and save!  Two for $60, three for $87, four for $110 and 5 or more at $26 each!   Order by sending a check to:   Lynch Syndrome International 3650 South Pointe Circle  Suite 245-9 Laughlin, Nevada 89209    or pay by Pay-Pal (See previous page for the link) providing your address and telephone number for mailing and the number and sizes of bracelets desired.  (This may indicate donation, however the purchase of goods does not qualify for tax deducations and in abidance with state and federal laws, LSI does not issue receipts for purchase of goods.            
Monday, 15 February 2010 | 20139 hits
29. In Memory
    IN MEMORY       ALWAYS, WITH LOVE....     IN MEMORY OF VICKI ALWARD On April 2, 2011, Vicki Alward, of Decatur, Illinois, lost a seven year battle with Lynch cancers. She raised four wonderful children and adored four grandchildren, was a loving wife and a nurturing mother. She was loved by a community. Her passion was writing poetry, traveling the world and spending time with her family. Her laugh, smile and heart encouraged those to live and cherish life. A giving person, she changed the lives of people she touched, both during and following life, including many of us and our families. We are so very grateful to her, her family and to those who loved her...our hearts are with Dr. Philip Alward, the Alward family and all those who loved and still love her. Diana Odon Advanced Eyecare Sally Hodges Dawn Bruner Christine Swim Mary Totel Ron McGregor, MD Roland Carlson The Robert and Elise Rokose Family Katherine G. Bellows The Robert and Norma Reedy Family The Paul and Shirley Stanley Family Janet Gaither Sikitch, LLP The William and Peggy Watson Family Betty L. Holt Macon County Eye Center The Lloyd and Jo Ellen Allsop Family Cara S. Montgomery Sarah E. Helton Jeffrey M. Smith, MD John Lee, MD The Jerald and Miriam Jackson Family The Philip Alward Family The Thomas and Emilee Best Family The Clark and Shirley Furr Family The James and Phyllis Brubaker Family Macon Family Medical Society John H. Huff Dan and Dorothy Frishkorn Family Arthur and Natalie Sweet Alfred and Shirley Ann Blickensderfer Diane Odin Paul E. Kroenlien Richard and Toni Helton Alliance Global Investors Reagan and Cathy Flemming Marsha Grubb Dr. Norman Tolly, Center for Sight   In Memory of Tom Kaiser The Cook Family   Memorial in Honor of Pamela Kaye Vollmer Mr. and Mrs. Lloyd Allsop Mr. and Mrs. Marvin Allsop     Memorial in Honor of Rachel George-Greenwalt   Sometimes people come into our lives for reasons unknown to help us learn, to inspire us or to serve as a warning. Rachel George-Greenwalt was one of those persons who will always live within our memories as she provided all of that and more during our encounter and working together to protect families and save lives. On December 10, 2011, Rachel George-Greenwalt passed away from a rare Stage 4 cancer of the appendix. Rachel was a passionate and active volunteer of Lynch Syndrome International. Despite a terminal diagnosis, she never complained. She always thought of others first, never gave up and participated in representing LSI at Relay for Life events and at local parades. She was a strong advocate of those at high risk for Lynch syndrome and participated in clinical trials in an attempt to find a vaccine which would be effective in fighting our cancers as well as authored a blog, sharing her experiences with fighting Lynch cancers. She was a radio personality in her local area, a loving wife, a mother of two little girls under the age of five, a loving daughter of one of our active volunteers and a wonderful sister to several siblings. She and her sister Mickie were very close and supportive toward one another, both dedicated toward public awareness of Lynch syndrome. We will miss Rachel dearly. Her courage inspired us and her spirit will live within us as we speak to each and every physician, each and every person at high risk for Lynch cancers and as we advocate and work toward getting more research for those with Lynch syndrome.  Her family works hard with Lynch Syndrome International to create public awareness and promote research endeavors in Ohio. Lisa Whited, dedicated to Mickey George Margaret Davidson, dedicated to the George/Greenwalt Families Jennifer Taylor, dedicated to Erma Rutter Janet Pierce, dedicated to Jason Greenwalt Anonymous Stephen and Linda Bruzzone Jane Linscott Pat Talder Charles and KarenTornes Denis and Anna Pierce Tina Kanios Janet Pierce dedicated in Memory of Rachel Greenwalt Anonymous In Memory of Rachel Greenwalt Jennifer Taylor dedicated to Erma Rutter Lisa Whited dedicated to the Memory of Rachel Greenwalt Charles and Enid Tholin in Memory of Rachel Greenwalt Damian and Wendy Chrisman Family Douglas L. and Gina Sampson Family David and Susan West Family Scott Eaton in Memory of Rachel Greenwalt Michelle George in Memory of Rachel Greenwalt   In Memory of Todd Painter   At the age of thirty eight years old, Todd Painter of Shady Side, Maryland, passed away peacefully of a Lynch syndrome related cancer. Todd not only served his country as a member of the Maryland National Guard, but was a wonderful husband and father to two very young daughters. He was an loyal Redskins fan, followed the NASCAR circuit and was an avid outdoors enthusiast and hunter. He was recently inducted into the Annapolis Area Christian Schools' Hall of Fame for excellence in soccer, wrestling and baseball, serving as a Captain in all three sports. Our hearts are with his wife Marina, his children, his parents, brothers and sisters and all those who loved and still love him.   Rochelle Smith Humphrey Frederick C and Nancy A. Meyer Family Mr. and Mrs. Ronald L. Robeson Family Douglas S. and Nancy O. Snyder Family Edward M. and Nancy A. Riley Family James E. and Francis G. Catterton Family Latva-Kokko Family Watkins Meegan LLC Rochelle Smith-Humphrey Virginia Andrews Gayle Grasso, In the Name of Tommy Painter Brian Andrews Charles Aldeman In the Name of Tommy Painter Bill Dennison In the Name of the Painter Family Alice Womble In the Name of William J. Painter Richard Steffan In the Name of Marina Painter Leo and Kathleen Stimmler Ernest and Virginia Wiltsey Charles Breiterman   In Memory of Patricia Diane Lawson LAWSON, Patricia Diane (Robertson) "Trish" 61, passed away peacefully surrounded by her family at home on April 2, 2012, after a long courageous battle with lung cancer. Trish was born Sept. 29, 1950 at Tampa General Hospital to the late L.D. Robertson, Jr, and Frances Mitchell Robertson. She attended Gorrie Elementary, Wislon Jr High, and H.B. Plant High School, before her fathers work temporarily moved them to New Jersey where she graduated from Stevens H.S. in Edison. She tirelessly worked for Centerplate (formerly Canteen & Volume Services) for 35 years in the Tampa Bay area up until her Stage IV diagnosis on 11/30/2010. She was the General Manager of all food, beverage, & merchandise sales for their following locations: Tampa Stadium, where she had the honor of turning the lights off for the last time for the entire Big Sombrero after their last event; McKecknie Field in Bradenton, & the NYY Legends Field. Lastly she worked for Centerplate as the Controller of Tropicana Field. She is survived by her husband, John Lawson, and her loving daughter, Caren Carney Berry and son-in-law, Paul Berry, and precious granddaughter Camryn Diane Berry of Tampa; her sister and husband, Cathy and Frank Uvanni of Crystal River; her niece and husband, Kristin and Dan Rose, and their children Katelynn, Dominick, & Hayden of Tampa; and niece Ayren Anderson and son Anderson Briggs of Tampa; and former husband James F. Carney, Jr. of Apopka. Trish was the great-great-granddaughter of Nelson Tift, founder of Albany, GA. She loved spending time in Key West where the Tift family was the original owners of the Hemingway House. The current Shiprwrecker's Museum has actors playing her ancestors as their tour guides. The Tift Ice Warehouse, currently the Shell Warehouse, still stands at Mallory Square where she enjoyed many of sunsets. Trish was a 3rd generation Davis Islander and loved the water so much she lived on a boat for five years, before returning to her home on Davis Islands. The most important legacy Trish leaves behind is her generosity and caring heart. She impacted many of her employees' lives and the community through her contributions to numerous Bay Area charities that have throughout the years developed Tampa into a city of destination. Trish had a passion for helping others. She helped begin Open Arms Ministry at Hyde Park United Methodist serving the homeless. What started as a simple hot cooked breakfast on Sunday mornings in the church parking lot has now blossomed into a model program for other communities. Tampa Bay Rays Baseball Steve and Linda Bruzzone The family of Patricia Lawson are very active with Lynch Syndrome International and strong advocate for public awareness and research in the State of Florida.     In Memory of Kate Murphy   Kathleen M. “Kate” Murphy, of Skaneateles, NY, passed away on October 3, 2012, at the age of 70 due to complications associated with Lynch Syndrome related colorectal cancer.  She battled various Lynch syndrome cancers and MS beginning in 1983 and spent the last seventeen years serving others by working as a passionate advocate. Kate graduated from Norwich High school in 1960 as a National Merit Scholarship finalist and salutorian.  She attended the University of Buffalo and, afterward, taught math, worked for Head Start, was Exutive Director of the YCA, then the consortium for Children’s Services and finally retired from the Syracuse Community Health Center in 1995.  Becoming involved in colorectal cancer advocacy, she helped found the Colon Cancer Alliance, Fight Colorectal Cancer and Lynch Syndrome International, where she served as an interim President, during the formation of the organization.  Kate served on many scientific committees of the NCI, DOD, and State of Texas, which reviewed grant proposals, monitored patient safety and developed research concepts and priorities. She was a published poet, with her husband Tom took in rescue dogs, was an avid swimmer, loved travel by train and sailing on Skaneateles Lake.  Her granddaughter, Sophia, was her favorite topic of bright and happy conversation. Kate is survived by her husband, Tom of Skaneateles; her two sons and a granddaughter.  She is dearly missed.   In Memory of Gayle Krenik Julia Zdrazil Tim Krenik Acting in honor of their mother, Tim and Julia are both strong advocates with Lynch Syndrome International in their respective states of Minnesota and Texas.   In Memory of Paula Rubin   Melissa A. Gatusso Michael and Jennifer Judge Sean and Erin Erney Peter Glintz Marion Kerr Richard and Gloria Ronca Kenneth and Laurie Renko Suzanne Cook Michael and Brenda Palucki Holly Boykin Scott and Shirleen Smiley Floyd and Mary Gladwell Greg and Lauren Machita Andrew and Shawn Towne Roland and Kelley Olson Pampered Chef Corporation Angela Teles James and Marnie McDonald Daniel and Heather Ronca Lisa Ronca Kimberly F. Petriga Shelly L. Meier Justgine E. Layser Suzanne Cook Michael and Brenda Palucki Karla and Larry Edwards Caroline H. Lavenduski John and Margaret R. Kotes Joseph and Kimberly Petriga Family Melissa A. Gattuso Joseph and Wendy Casillo Lawrence and Susan Antonelli Morris The cousins and family members of Paul Rubin are very big advocates with Lynch Syndrome International and, in Paula's honor, each year, hold a major fundraiser to raise funding for public awareness, support and research of Lynch syndrome.   DOROTHY AND JOHN SPINETTO Wendy Allen in the name of Joanne Spinetto Marty In Memory of Dorothy and John Spinetto   IN MEMORY OF THOSE OF THE RAMSEY FAMILY   In Memory of Grandmother Charlotte Fawkes Finley and mother, Charlotte Finley Ramsey, who both died far too young, and to Charlotte Lynne Clark who is still doing well following her third Lynch related cancer, thanks to genetic testing and proper monitoring...from their loving grandson, son and brother, Marc Ramsey.     IN MEMORY OF THE SNELLING FAMILY In Memory of Great Grandfather Harrie Snelling, his son Hap Snelling and daughter Marcella Snelling, with gratitude for the hope and promise of a future which will allow for families to live.  The descendants of this family are extremely involved with Lynch Syndrome International.  Today, they live.     IN MEMORY OF AMY MANISCALCO   Amy Maniscalco, 37 years old passed away from endometrial cancer due to Lynch syndrome. She was an extraordinary young woman. Her father was her "buddy," as they worked through Lynch syndrome cancers together, with dignity, often humor and with a wonderful positive attitude.     Amy, My Strong Lady   You bring chocolate covered strawberries And strawberry shortcake to family Easter dinners,   Wake a quiet room with your spirit And a laugh that punctuates your funny commentary.   You are the perky “Hey guys” on the message machine The one I still cannot erase.   Cancer was a war waged Against the beauty that was you. So you fought.   You rallied the troops Wrapped your arms around your family To protect them. A giving that was customary for you.     Every assault was attacked With precision. Every insult was met With grace. “Hey Aunt Meg, I got a prescription for a wig. I’m going shopping with Mom” With humor “Maybe a red one..”   We could not cry for you Because you didn’t. Not when the first clot hit your lung Or the last that stole your speech.   How kind you were to all of us. Never whispering the secrets of your sickness Or your shortened sense of time.   Said you wanted no expiration date stamped on your forehead- A date that came too soon- Took even you by surprise That Thursday night   When the clot surgeon searched for 7 hours, When we cried in the waiting room While American idol played on the flat screen TV. You fought your final battle.   We felt your arms slowly fall away. They could not cushion us any longer. This enemy was faster and deadlier Than the cancer you endured.   And you “Strong Lady” lay quietly While we cried For the gift that would no longer be ours,   For the hole in our hearts That will never be filled, For the love of an extraordinary young woman, And her short life, well lived.   Amy, as an advocate, authored the blog "The Lynch Sister's Incomplete Guide to Christianity, Cake and Cancer," which she described as "an imperfect Christian woman's endometrial cancer fight, one ridiculously true story at a time."       IN MEMORY OF ASHLEY BEZDEK   Ashley Lauren Bezdek, age 27, passed away on May 29, 2013 at Houston Hospice from Lynch syndrome related endometrial cancer. A native Houstonian, Ashley was born on August 23, 1985 to Brent Bezdek and Jamie Kennedy at Memorial City Hospital.  She was an avid LSI volunteer and exhibited incredible strength and passion for life. Ashley graduated from Mayde Creek High School, Katy, Texas in 2003. After high school she worked a variety of jobs, but was most passionate about the swimming pool industry. Following in her grandfather’s (Gilbert Bezdek, deceased) and father’s (Brent, deceased) footsteps, or possibly the chlorine in their blood, she worked as a pool cleaner, trainer, supervisor, retail sales, and cleaner repairs (Bette, they are all yours now!!) Sweetwater Pool and Patio in Bellaire was her second home of work family and real family too. Sheila Bezdek, (Brent’s widow) and her husband, Cesar Tena, their children, and Lillian Kucera, (Sheila’s mother). Ashley did not work for the past two years. She would go in as often as her energy allowed and would ride along to pool sites with her best bud, Dirkland Stephens from time to time. Last Wednesday, during his visit to the house, he told her something and she laughed, really laughed. It was also the last time she laughed. Kara Tesch has been Ashley’s best friend since September 1991 when they were in first grade. Mike and Elaine Tesch, Kara’s parents, and their daughter/little sister, Kasey (deceased), were her other family. The long-time residents of our neighborhood have all been part of Ashley’s life, just as their children have mine. Kasey’s cancer death set the stage for every other family and friend’s cancer diagnosis and outcome, including her own. Each of the Tesch’s and many from their huge family, were part of our last conversation. Ashley’s cancer journey was not kind. Most aren’t, but hers was laden with complications and frequent emergency room visits. There are many amazing doctors and some of the best nurses and CNAs, especially on unit 6A/6B, where she spend nearly the entire month of December 2011. Cynthia Baily-Delosbore was our "everything chemo and radiation" navigator from the beginning. Dr. Alexie Cintron joined Ashley’s Baylor team to provide pain management and palliative care in July 2011. He and Allison Torregrossa in the Anti-coaguation Clinic at Quentin Mease were involved in her care until the end. The entire staff at MD Anderson exceeded our expectations, particularly with Drs. Ramondetta, Jhingran, and McAleer their staff. The nurses, doctors, and support staff from both the inpatient and field units at Houston Hospice cared for Ashley and me with the utmost care and dignity as her life slipped away. Denise, Sarah, Stefanie, Cynthia, Nora, Chantre and others were instrumental in keeping us both comfortable during Ashley's last hours.Thank you doesn’t convey the sentiment . Ashley was preceded in death by her father, Brent Bezdek, great grandparents, Albin and Della Bezdek, grandparents, Gilbert Bezdek and Karen Severin, and uncle, David Bezdek. Ashley is survived by her mothers, Jamie Kennedy (Jay Williams) of Katy, Texas, and Sheila Bezdek (Cesar Tena) of Stafford, Texas, grandparents Carolyn Bezdek, Verna “Weird Grandma” Hillery (Ed) of Houston, Texas, Lillian Kucera of Stafford, Texas, and Doob, her yellow lab and faithful, yet challenging, companion. A visitation will be held at Woodlawn Funeral Home, 1101 Antoine Drive at Katy Freeway, Houston, Texas 77055 from 5:00 pm to 8:00 pm on Friday, May 31, 2013. The memorial service will be on Saturday, June 1, 2013 at 10:00 am, also at the Woodlawn Funeral Home. Burial will follow at the Woodlawn Cemetary.   Note: Ashley and her mother Jamie were very active volunteers of Lynch Syndrome International.  Two months prior to her death, Ashley met with the Mayor of Houston and obtained a proclamation declaring Lynch Syndrome Hereditary Cancer Public Awareness Day. Her mother is very involved with Lynch Syndrome International in the Texas area.                                                                     Louise and James Alexander                                                                   Clinton and Rebecca Carson Family                                                                   Cabana Pools                                                                   Cathy Hillery                                                                   Carolyn Bezdek                                                                   My Tribute Gift Foundation, Inc.                                                                   Shannon Richards                                                                   Janet Fleming                                                                                                           IN MEMORY OF CINDY BETTS    Cynthia was born November 6, 1948 in Decatur, IL, the daughter of Edwin and Jean (Lyda) Wortman. She married Robert Betts Sr. in Decatur on November 19, 1967. He preceded her in death on August 8, 2007. Cynthia worked for the American Red Cross for 7 years as a volunteer coordinator and most recently was an office manager. She was a former “volunteer of the year” with the American Red Cross. In recent years, Cynthia advocated strongly for Lynch Syndrome Awareness. She loved taking shopping trips with her sisters, spending time with her grandkids, and meeting with friends at the Bingo Hall. She is survived by her sons Robert Betts, Jr. (Danae) of Rockton, IL, Thomas Betts (Donna) of Bastrop, TX; grandchildren Dakota Betts, Madalyn Betts, Nolan Betts, Connor Betts; mother Jean Wortman; sisters Phyllis Prell (John) of Ft. Smith, AR; Patty Wisehan of St. Louis, MO; brothers David Wortman (Debbie) of Elizabethton, TN; Mike Wortman (Mary) of Decatur, IL; Timothy Wortman (Becky) of Decatur, IL. She was preceded in death by her father Edwin, husband Robert, brother Charles Wortman, sister Cathy Lymer, and son Robbie.  The Wortman family are very strong advocates with Lynch Syndrome International, creating public awareness and helping seek treatment alternatives for Lynch syndrome cancers..  Thomas and Twyla Juehne William and Sharon Cole Betty and Rosalyn Steven and Sue Williams William and Sharon Cole Terrell and Molly Lienhart Ginger Wortman Edward Jones Region 209 Robert Simis David and Deborah Wortman Dr. Brent Laing and Diane Laing Susan Martina in the name of Patty Wiesehan  Nancy Vogel in the name of Patty Wiesehan John Holland in the name of David Wortman Michael Wortman Sigma-Aldrich, in the name of Patty Wiesehan David Hayes Sarah Kneller in the name of Patty Wiesehan Jack and Phyllis Meece   IN MEMORY OF MIMI EISMAN Anonymous in the name of Ben and Shelley Holmes.  Ben is a strong advocate for those with Lynch syndrome, by engaging in endurance races for public awareness.   IN MEMORY OF LELA BETSUKELI Natia Porter Natia is a strong advocate for Lynch Syndrome International and is involved in activities in Manhattan and in her native country of Slovenia.   IN MEMORY OF SANDY RAILSBACK FINLAYSON     Sandra "Sandy" Kaye Railsback Finlayson, 58, lost her 42-year courageous, inspiring and resilient battle against cancer Wednesday, March 12, 2014, in Grapevine, Texas, surrounded by her loving family. Celebration of life: 2 p.m. Thursday, March 20, at White's Chapel United Methodist Church in Southlake. Sandy was born July 21, 1955, in Canyon. She will always be remembered for her sense of humor, optimism, compassion for others and her contagiously bright smile. She was preceded in death by a son, Tyler Finlayson. Survivors: Husband, John Finlayson of Southlake; daughter, Erica Perry and husband, Zane, of Lubbock; son, Tony Finlayson of Roanoke; granddaughter, Presley; future grandson, Cody; parents, Dick and Joyce Railsback of Amarillo; sister, Brenda Keener and husband, Bob, of Prosper; sister, Linda Mahard and husband, Andy, of Prosper; brother, Scott Railsback and wife, Cynthia, of Wylie; sister-in-law, Susan McCaskill and husband, Doug, of Chesterfield, Mo.; and numerous nieces and nephews who adored her. -   Shawn W. Corpening in Hope Of Sandy Railsback Finlayson Jennie Bailey dedicated to Erica Perry and in Memory of Sandy Railsback Finlayson Joan Bettencourt dedicated to Erica Perry and in Memory of Sandy Railsback Finlayson Erica Perry dedicated to Tony Findlayson in Memory of Sandy Railsback Finlayson Tony Finlayson dedicated to Erica Perry in Memory of Sandy Railsback Finlayson Deanna Martin dedicated to John Finlayson in Memory of Sandy Railsback Finlayson Linda Mahard dedicated to Erica Perry in Memory of SAndy Railsback Finlayson Susan and Douglas McCaskill in Memory of Sandy Railsback Finlayson       IN MEMORY OF KAREN OESCH   Karen "Gar" Louise Oesch  (July 7, 1944 - December 16, 2013) Columbiana, Ohio    Karen “Gar” Louise Oesch, age 69, of Columbiana, died on Monday, December 16, 013, at the Hospice House in Poland. She had Lynch Syndrome and fought four cancers; colon, breast, endometrial and lung, although she died from lung fibrosis due to radiation damage, a complication from lung cancer treatment. She was born on July 7, 1944, in Youngstown, a daughter of the late Mark Gilbert Myers and the late Ruby Agnes Bishop Myers. Karen was a graduate of Springfield Local High School and spent most of her life working as a homemaker. She was active within her church having attended both the First Presbyterian Church of Columbiana and more recently, the First Christian Church of Columbiana. She enjoyed singing in the choir, participating in the bell choir and volunteering when she could. It was through her church that she volunteered her time to hold church services for the residents of Parkside Health Care Center. She also enjoyed lifting people’s spirits with her own personal card and hospitality ministry, as well as sewing blankets for loved ones. Mostly, Karen enjoyed being a wife, mother and grandmother. She loved spending time with her family and hosting holiday parties. She is survived by her husband, Harold L. Oesch, whom she married on September 2, 1982; two daughters, Melanie (Gregory) Sprouse of Columbiana and Jill Ann (Kenneth) Chang of Canton; a son, David (Lynn) Wyant of Austintown, two step-daughters, Candice (Jim) Downie of Columbiana and Michelle Oesch of North Lima; a step-son, Michael (Shelley) Oesch of Chicago, Ill.; two sisters, Ruth (Tom) Williams of Westerville, OH and Beverly (Gordan) Withers of Petersburg, OH and a sister in-law, Nancy Myers of Columbiana. Also surviving are thirteen grandchildren and five great grandchildren.  Karen was preceded in death by her twin brother, Kenneth Myers.Larry and Barbara Baughman.  Her family are strong advocates with Lynch Syndrome International, in order to protect families and save lives from Lynch syndrome cancers. Hope   She was in the middle of her life, When it came in like a knife. She had experienced this before, But she never thought she would have more.   Cancer is the ugly beast, Who came in for a feast. She fought with might, And won the fight .   But it scarred her forever, Of the things we endured together. I wish it could have been another, But The Lord chose it to be my grandmother.                                                  ~ written by Christian Chang    James Dahlin in the name of Shelley Oesch in the memory of Karen Oesch Carol Howard in the name of Melanie Sprouse in the Memory of Karen Oesch Cheryl Ruskowski in Memory of Karen Oesch Michelle Oesch dedicated to Jill Chang in Memory of Karen Oesch Melanie and Greg Sprouse in Memory of Karen Oesch Emily and Zack Dorn in Memory of Karen Oesch Becky Essenmacher in Memory of Karen Oesch Lynn Wyant in Memory of Karen Oesch Larry and Barbara Baughman in Memory of Karen Oesch Christian Chang in Memory of Karen Oesch     IN MEMORY OF SERGEANT ALAN JASPER (A.J.) CASTILLO     On March 29, 2012, Sergeant Alan Jasper (A.J.) Castillo would have been 29 years of age.  He passed away ten days earlier from colorectal cancer metastases.   AJ attended Grenwood High School and then went on to Arkansas Tech  in Russeville, Arkansas.  His major was Child Pychology. He had a soft spot for children and animals and people, and could not handle to see them hurt. He loved  his school, music, family and friends.  He always looked for and found a good side in everyone, and was always a caregiver to many.  In 2008 he decided to follow the footsteps of his older brothers, and joined the Army. Fresh out of boot camp he development a love for the military and decided to become a career soldier. He received many awards and medals.  His accomplishments excelled above many of his peers. He met and married Kayla, a fellow soldier, and with her, became a father to baby Lily. AJ had two loves, his new family and the military. He worked hard to build his future he advanced into the 3RD  U.S. Infantry Regiment, (The Old Guard) and the D.O.D. Dept of Army. He prepared to deploy overseas and fulfill his mission in military intelligence. Soon after, he was diagnosed with a Lynch syndrome cancer which didn't slow him down, but only made him work harder to develop a future for his new family. He felt he was better and underwent his predeployment physical, at which time metastases was detected. As time progressed, the cancer took a toll on him but he never lost his love for life despite knowing his fate. On March 19th 2012 he took his last walk down the hall of the hospice center in Houston, Tx. and on March 21st, 2012 at 2:55 am, he took his last breath in the arms of his wife. AJ's life left a big impact on all the people that knew him.  He was a soldier that will never be forgotten. He was laid to rest with full honors by his comrades, The Old Guard, in Fort Smith at the National Cemetery. He had so many friends, men and women in the military came from all over the United States, that his service was one of the largest military ceremonies held in Fort Smith. AJ is remembered and revered with pride by many, including his father, Robert, (Bucky) Castillo.  "He made me so proud I will always love him." his father wrote.  His family are advocates with LSI to help protect families and save lives.     In Memory of Betty Simpson                                             Mollie Mather in the Name of Linda Maher In Memory of Betty Simpson Read more here:       Updated 4/9/2014
Thursday, 02 August 2012 | 5085 hits
    Women face additional risks of contracting cancer as a result of having Lynch syndrome, including an extremely high risk of endometrial cancer.  Endometrial cancer may be far more prevalent than previously thought and ongoing research is studying the prevalence. As well, women face an approximate 12% lifetime  risk of contracting ovarian cancer, which often appears symptomless and is difficult to diagnose at an early stage. Breast cancer has been identified as an integral component of LS, based upon mismatch repair germline mutation factors in breast cancer tissues from family members who are not only at high risk, but, moreover, who had Lynch syndrome cancers, such as involving the colorectum.  Breast cancer is exceedingly common in the population and, therein, its occurence in Lynch syndrome families could be due to chance, but importantly, a subset will likely be integrally related to a germline mismatch repair Lynch syndrome mutation in some LS families.  Therefore, it is prudent to mount a screening and management program for Lynch syndrome in those families where breast cancer is believed to be an integral lesion. (For more on breast cancer, visit the LSI Library for the up to date studies) Due to this, it is extremely important women consult with their gynecologist and schedule annual gynecological surveillance screenings, beginning between the ages of thirty to thirty five years of age. In addition to the annual PAP smear, the examinations should include: A pelvic exam; An endometrial biopsy; A vaginal ultrasound; A CA-125 blood test; Annual PAP smears; Annual mammograms; And if a family history of breast cancer exists, discussion with your physician as to whether an additional screening method is necessary.     Research into Lynch syndrome is relatively new and in the past there were not yet enough studies to determine evidence of the effectiveness or screenings.   These can be located at however, very little is stated regarding the women's cancers of Lynch syndrome. Australian and other international studies have explored the possibility of an association between Lynch syndrome and cervical cancer.  The jury is out as to whether or not there is a direct association and/or the extent of that association.  It is prudent to obtain annual PAP tests to insure early detection even if you have undergone a total hysterectomy with salpingo oopherectomy.   Forewarned is forearmed and in order to protect one's self, discuss creating an annual screening management program with your gynecologist.  For more detailed information on women's cancers and the women's risk, MD Anderson has outstanding resources upon their website.  Additionally, studies regarding Lynch syndrome women's cancers are available upon this site, under the LSI Library. Following child-bearing years, to reduce the risks of uterine and ovarian cancers, women with Lynch syndrome should seriously consider prophylactic (preventative) surgery to reduce the high risk of contracting endometrial and ovarian cancer.  This is especially important as often there are few or no symptoms of gynecological cancers and screening tests are not all that accurate in detecting women's cancers at an early stage.   The standard procedure utilized is referred to as a full abdominal hysterectomy with bilateral salpingo-oopherectomy (removal of the uterus, cervix, ovaries and fallopian tubes). As a result of modern technology, the surgery today is much easier for recovery and sometimes hospital stays are as short as 5 hours. Nonetheless, it is important to realize it is still a serious surgery and full recovery takes months. Prophylactic surgery, recommended following child bearing years, is often a "win-win" situation, protecting us from Lynch cancers and saving many women the "misery" of having to endure perimenopause, that up to ten year period of time prior to completion of menopause.   THE SURGICAL PROCESS Over 600,000 hysterectomies are performed each year and by the age of sixty, one in every three women, in the United States, has undergone hysterectomy.  Almost 90% of all the surgeries are elective (chosen) procedures, rather than lifesaving procedures.  A common practice, the majority of surgeons who perform hysterectomies are pretty experienced.
Monday, 15 February 2010 | 27417 hits | Read more

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