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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.

 

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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

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    Patient Wisdom

    Patient Wisdom

    Question 6: Can you share any tips for convincing reluctant family members to be screened?

     

    Factoid: KinTalk, developed by genetic counselors at the University of California San Francisco, provides great information for sharing genetic results with family members. 

    Anything with the word "rectal" or, "colon" is typically not dinner conversation. However, knowledge is power; letting family know that testing is easy and life saving is most important. Often times, I think family members that do not want to be tested are simply afraid. With this disease, what you don't know will hurt you. - Michelle Sutter

     

    Persuade them that a full genetic picture of the incidence of the disease in one's family can not only provide opportunities for early detection, and treatment in those tested, but can [also] help to [increase] the clinical understanding of one's own disease. (In other words, if you won't do it for yourself, then do it because it can help me!”) - Frank Rider

     

    My tears usually work, and [I] tell them the worst part is the prep. It has gotten so much better than it was when I started having to do them; it's truly a simple test. By the time you start having symptoms, it's almost too late. Please, do it for your family, you spouse, and your children. - Kelly Livingston

     

    You can prevent the #1 threat of death - colon cancer - by getting screened and following your doctor's orders!!!! - Brian Hanson

     

    Genetic testing and frequent screening significantly increases your chance of survival. Burying your head in the sand does not and could ultimately lead you to your demise. - Georgia Hurst

     

    My conversation with them was simple: This is a serious condition and you HAVE to make sure you don't have it. FAP is only treatable with proper screening. - Brooke Porretti

     

    One screening could prevent illness. Ignoring it could encourage tumours to grow or benign polyps to become cancerous. - Ruth

     

    When I was a teenager, my mother and my siblings did our colonoscopies together on the same day. We would make it a competition to see who could chug the prep the quickest. - anonymous

     

    The embarrassment and discomfort of colonoscopy is short-lived. It's better to know if you have it and be aware of early symptoms than to be ignorant. - Naomi Riches

     

    Give the person some information about the different ways screening can be done, and what the condition may involve. However, too much information, too soon, can overwhelm a person. So go at their pace and take time with them. Don’t force it; the person has to make the choice themselves. Support them whatever they decide, even if you don’t like the choice. - Claire McIntosh

     

    Knowledge is power. The screening doesn't hurt. Cancer treatment does. So knowing will allow you to better be able to prevent it from getting that far. - Emily Wilson

     

    The greatest risk is not knowing. FAP polyps left to go wild over the years will lead to your death if unchecked. Whatever comes your way you can overcome, provided you act early and make educated decisions. Having had scopes from my the 1970's until now, there is nothing fun about them - but the knowledge gained from them can save your life. DO IT!!! - Ed Minor

     

    You can bury your head in the sand and think “it won't happen to me”…but that's foolish talk. What's more important, facing the music or dying listening to it? I choose to face it. Give yourself a fighting chance! - Charlie Henricks 

     

    If they have it and don't know, they could have colon cancer at a very young age. They told me if I didn't have surgery when I did that I would have died from colon cancer by the age of 4. - Whitley Buckles

     

    Just DO IT! It's your life, literally, and it could mean any future family's life. - Kathryn Howard

     

    My daughter was first diagnosed due to her rare thyroid cancer connected to our disease. Then genetic testing revealed that I was the person in whom the disease originated. After I tested positive, all of my children and two grandchildren wanted to be tested. There was no ambivalence or reluctance because we knew it could save our lives. - Suzanne Pilon

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