Lynch Syndrome: Advocacy, Support and Networking Resources for Hereditary Cancer Patients and Health Care Providers

Lynch Syndrome Facts:

* Most common hereditary colorectal cancer syndrome
* Inherited in autosomal dominant manner

* Increases the risk of developing the following cancers3:

 

    - colorectal
    - endometrial (uterine)
    - ovarian
    - urinary tract
    - stomach
    - small bowel 
    - hepatobiliary tract
    - brain/central nervous system
    - sebaceous neoplasms
    - pancreatic

Lynch syndrome (LS), which occurs in an estimated 1 in 33 colon cancers, is not a rare disorder. However, it is underdiagnosed, making many individuals and their relatives unaware of their increased risks of developing colorectal, endometrial and other cancers. National evidence-based recommendations are for all patients who are newly-diagnosed with colorectal cancer to be screened for Lynch syndrome.1

The condition was first described by Dr. Henry Lynch after decades of working with patients and keeping track of generations of families with extensive histories of the same types of cancer. 2 With increased awareness, and both medical and technological advances, LS patients, families, and health care providers now have access to resources that provide information, support and networking opportunities. Following are just some of these resources:  

·         Lynch Syndrome International (LSI) is a global community that increases awareness and provides support for individuals and families affected by Lynch syndrome. The organization is founded and led by LS survivors, family members and health professionals who specialize in the condition. It also raises funds to support LS research. Visit: http://lynchcancers.com/

·         I Have Lynch Syndrome, founded by previvor Georgia Hurst, is a charitable organization dedicated to raising global awareness and advocates for Lynch syndrome patients and their families. Georgia frequently hosts a Twitter chat #Hcchat with cancer experts discussing topics related to hereditary cancers. Visit: http://www.ihavelynchsyndrome.com/

·         The Hereditary Colon Cancer Foundation is a non-profit organization that serves the hereditary colon cancer community of patients, caregivers and health care professionals. Founded by Travis and Shawnie Bray, the organization hosts webinars and other educational opportunities, some of which are eligible for continuing education credits. Visit: http://www.hcctakesguts.org

·         AliveAndKickn is a hereditary cancer foundation whose mission includes support for research, education and screening for Lynch Syndrome and associated cancers. Founder David Dubin is a three-time cancer survivor and Lynch patient. Visit: http://aliveandkickn.org/

·         The Lynch Syndrome Screening Network (LSSN), established in 2012, is a collaborative network of institutions that promote routine Lynch syndrome screening on all newly diagnosed colorectal and/or endometrial cancers. Member organizations are involved in patient care, national and state public health, and non-profit advocacy. Visit: http://www.lynchscreening.net/

To increase public awareness of LS-associated cancers, Lynch Syndrome Hereditary Cancer Awareness Day is March 22, 2016.

References:

1 Lynch Syndrome EGAPP Recommendation. “Evaluation of Genomic Applications in Practice and Prevention (EGAPP)” Working Group. http://www.cdc.gov/genomics/gtesting/EGAPP/recommend/lynch.htm. Accessed 2/22/16.
2 Cantor, D. The frustrations of families: Henry Lynch, heredity, and cancer control, 1962-1975. Med. Hist. 50(3): 279-302. July 2006.
3 National Comprehensive Cancer Network (NCCN) Guidelines Version 2.2015. Lynch Syndrome. http://www.nccn.org/. Accessed 2/22/16.