© 2017 Hereditary Colon Cancer Foundation

 

www.HereditaryColonCancerFoundation.org and www.HCCTakesGuts.org are informational and support websites for those affected by hereditary colon cancer syndromes. The website does not provide medical advice, recommend or endorse health care products or services, or control the information found on external websites.

 

Hereditary Colon Cancer Foundation and the Familial Adenomatous Polyposis Foundation are registered charitable organizations in Illinois and Utah, and tax-exempt under Internal Revenue Code Section 501(c)(3). Mailing address: 3519 NE 15th Avenue, Unit 518, Portland, OR 97212  |  info@HCCTakesGuts.org

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Hereditary Colon Cancer Takes Guts

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    Attenuated FAP, Cowden Syndrome, Familial Adenomatous Polyposis, Gardner Syndrome, 

    Hereditary Mixed Polyposis, Juvenile Polyposis Syndrome, Lynch Syndrome, Muir-Torre Syndrome, MYH-Associated Polyposis, Peutz-Jeghers Syndrome, Turcot Syndrome

    Hereditary Colon Cancer is Preventable Program

    Goal:
    The goal of the 'Hereditary Colorectal Cancer is Preventable' program is to promote proactive measures capable of yielding successful prophylactic treatments, thereby reducing the instances of colorectal cancer.

    

    Strategies:

    1) Raise awareness among medical professionals on how to better utilize available screening and testing options capable of diagnosing hereditary colon cancer syndromes. Medical professionals include internists, gastroenterologists, gastroenterology nurses, geneticists, and genetic counselors. Topics include:

    

     

    • Screening and testing options for early diagnosis of HCCSs

    • Pharmaceutical options for reducing or preventing polyp growth

    • Alternative polyp prevention/reduction methods

    • The role and importance of genetic counseling

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    2) Educate patients regarding early detection and empower them to advocate for personalized care. Patients include those diagnosed with an HCCS and people with a family history of colon cancer. Topics include:

    

    • Screening and testing options for early diagnosis of HCCSs

    • Pharmaceutical options for reducing or preventing polyp growth

    • Alternative polyp prevention/reduction methods

    • The role and importance of genetic counseling

    • Surgical methods for those with polyps

    

    2013 Activities:

    • Develop, promote, and deliver “How to Defy Hereditary Predisposition and Prevent Colon Cancer” webinar to medical professionals - October 30, 2013

    • Develop, promote, and deliver “Early Screening for HCCSs” webinar to patients - Summer 2013

    • Develop early detection content for www.HCCTakesGuts.org patient portal

    • Create and disseminate early detection printed patient materials

    • Disseminate existing risk assessment patient materials

    • Promote campaign and materials at the following 2013 conferences: American Society of Clinical Oncology, Collaborative Group of the Americas on Inherited Colorectal Cancer, and National Society of Genetic Counselors.

    • Include prevention information in our June, September, and December newsletters

    • Promote the campaign on our web site and social media outlets

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    Why it's needed:

    Over 140,000 colon cancers were reported in 2012; 5 - 10% were due to genetic conditions, either polyposis or non-polyposis based. It is not uncommon for patients exhibiting classic symptoms to to be misdiagnosed as suffering from more benign
    ailments, i.e. IBS or hemorrhoids. This can be attributed in part to a lack of high-level education and training among primary-care physicians and gastroenterologist in the area of hereditary colorectal cancer syndromes (HCCS). HCCS patients are further disadvantaged by the fact that the prescribed colorectal screening age is 50, far beyond the average age of colon cancer onset in the HCC community. Preventative screening and testing options are too often overlooked, even though financial assistance is often available to offset their costs, especially for those who are underinsured.