© 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

    Patient Wisdom

    They are arranging the Genetic screening for my son, and help to coordinate my care, and also to see if there is any sign in other family members. - Daniel Stapely

     

    I have been very fortunate to qualify for numerous clinical trials thanks to signing up with the Hereditary Colon Cancer Registries. Had I not signed up with the registries, I wouldn't have known about the clinical trials. - Betty Starr

     

    Yes, my entire family qualified for free genetic testing after my father, sister and I were tested positive. - Linda Warner

     

    Newly registered - so here in the beginning I have found it valuable to see what research is being done, receiving quarterly newsletters, articles, information etc.. I am a strong believer in knowledge is power. Whatever I can do to help the cause I will do. I will control how FAP affects me - it will not control me! - Michelle Sutter

     

    Contacted about existing, and upcoming studies, that I might qualify for. - Kelly Livingston

     

    They send us a newsletter of thing going on concerning cancer, tests, and other important things to know - Melanie Hirschi

     

    I received specific information about high risk of thyroid nodules, cancer associated with MAP from Cleveland Clinic's registry. I now get regular thyroid [ultrasound]. I have peace of mind by knowing their are understanding, well-informed experts available to me through the registry to share with me information that can help me manage my disease. - Frank Rider

     

    Met others in my area and helped talk to “newbies”. - Charlie Henricks

     

    I certainly felt good about sharing symptoms and knowing what others had to offer. I think the connections from person to person need to be much broader and more open as there are really so few with this condition. - Sandra Redlands

    Patient Wisdom

    Question 13: How have you benefited from being a part of a patient registry? 

     

    Factoid: The Collaborative Group of the Americas on Inherited Colorectal Cancer hosts a list of registries. Look to see if there is one near you! 

    Click HERE to return to Patient Wisdom Survey Questions