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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.

 

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

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    Patient Wisdom

    Patient Wisdom

    Question 23: Do you have advice to help others expedite their diagnosis?

     

    Factoid:  Such good advice, it’s worth saying twice! Take an active role in working with your doctor or nurse when you are ill. By following this checklist, you become a partner in finding the right diagnosis for you.

    Go to facilities/providers that have reputations for being very knowledgeable about the disease, they know the urgency with which it needs to be addressed. - Kelly Livingston

     

    Know your family history. Go with your instincts. Find doctors that won't dismiss your concerns. - Georgia Hurst

     

    Listen to your body. If something does not feel right, demand to get tested. - Brooke Porretti

     

    Get a colonoscopy. They're fun! - Samuel Duckworth

     

    Advocate for yourself and push doctors to get you in as soon as possible, even if it means missing work! - Allison Brewer

     

    Listen to your body. If something doesn't seem right, have it looked at. Don't think something is too personal to discuss with your doctor and family. As I was the mutant, we didn't know what was going on inside of me. - Betty Starr
     

    Notify relatives. - Israel Gonzales, Jr.

     

    1) Know your family history. 2) Rectal bleeding and/or unexplained anemia may be worked up with a colonoscopy. - Anonymous

     

    Do not accept an answer that doesn't satisfy you. My kidney cancer was missed because of a lackadaisical Physician Assistant. - Linda Warner

     

    Even if you are symptom free, get checked! - Samia Jouni

     

    Do not ignore your symptoms. Wait for an appointment. During an attempt to get an appointment make sure you are telling medical issues to someone who can help. I didn't want to tell everyone I had lots of blood during a BM. - Tami Arnold

     

    If you know something is wrong or not normal, keep asking about it until it is fully addressed. Don't let anyone write you off because you're "too young" to have cancer. There's no such thing as being too young. - Emily Wilson

     

    Follow the established screening/testing protocols, and be assertive for timely follow-up and progression through the protocol. My major surgery occurred 12 months after my initial colonoscopy. Adenomas had proliferated and advanced in dysplasia during that time. I feel my disease was detected and addressed just in time to stave off lethal CRC. - Anonymous

     

    Demand answers! Don't settle because "they" think it's nothing.......demand, demand, demand! Push to do tests until you find out what is wrong. - Charlie Henricks

     

    If you know you have a family history, keep pushing for a colonoscopy. If your doctor doesn't listen, look for another one - until you find one that does listen. Don't let anyone tell you that colon cancer is "your grandfather's disease" or it "doesn't happen to young people”. - Alyssa Zeigler

     

    If any polyps are in your family, you have symptoms of such, do not wait. It's better safe than sorry. I have thought of not going through some tests but biological family say I can't. It took them 20 years to locate me and with these health problems, are with me all the way. - April Wood

     

    Generally you can lead a relatively healthy life for the first decades of your life without any symptoms of F.A.P. and, when it does start presenting, the symptoms don't seem threatening. If something is off and remains so for over six months, get it checked out and don't be embarrassed to do so because you're too young to have poop issues! - Dakota

     

    IF anyone in your family has had colon cancer or thyroid cancer, get the gene test and be sure Sandra Redlands

     

    Go with your gut. If something doesn't add up just keep [looking] for answers. Don't give up and don't settle. - Anonymous

     

    Read and research and be your own best advocate. Do not be intimidated by medical personnel. Oftentimes, you know more about your disease than they do. It was common in our hometown for doctors and nurses to ask for the spelling of our disease and then excuse themselves while they looked it up online. - Suzanne Pilon

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