© 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

    I have lived, not just survived, everyday both since I was diagnosed in 1988 and before. I raised 3 step-sons, worked full-time (sometimes 2 or 3 jobs at a time), I have loved myself, my husband, my family and friends and life. Now that I am out on disability, I will try to travel the way I always wanted to. I will not give in to this damn disease. - Betty Starr

     

    I don’t worry about anything and think to myself, “I won’t live forever.” So I do everything I can in the time being. - Amanda Sadowski

     

    I’ve tried to not let my cancers define me. They are part of me, but not ‘me’. I put value on each day...I know I only have the one day and try to control how I use it, not waste it. - Linda Warner

     

    Colon cancer took my mother, uncle, and grandfather all before age 50. It's not going to get me. I'm training for an 18 day cycling trip through Europe this summer to celebrate making it to 50! - Jody Dummer

     

    I laughed in its face, sung my heart out on the way to surgery, and learned all about it so that i was always prepared. - Clare McIntosh

     

    Everything a doctor told me I would never be able to do, I do and prove them wrong. I am like a non-FAP person and I choose how to live my life. Until I die, I will enjoy the life I have. - Karl

     

    I easily could lay in bed each day watching Oprah and eating bon-bons, feeling sorry for myself. But what good is that? Since surgery in mid-2012, I have jumped back into working, traveling, and living life to it's fullest. Being diagnosed has made me appreciate the little things more and has taught me that nothing can get me down. Don't let FAP win! - Michelle Sutter

     

    Simply accepted what I learned about my FAP diagnosis, determined what I needed to do to take care of the primary risk (surgery), affirmed my priorities in life, then scheduled the surgery, put it out of my mind, and determined to enjoy every day. FAP has actually helped me appreciate all the blessings in my life. I work and play hard each day. - Frank Rider

     

    I’ve tried to let it work for me instead of against me. Because of this disease, and my recovery from it's various aspects, I have had opportunities to discover things I may not have otherwise explored. I learned to bake in a way that relies on my pre-diagnosis science background, traveled around Israel and Asia, and am now involved in patient advocacy. - Dakota

     

    I realize that I control many things of this syndrome, and one of the major things is that I have faith in Jesus Christ. Since being diagnosed, I have become a much better person through this disease. In my case, this disease has been a major trial but also a blessing. - Brian Hanson

     

    I have been through a Whipple [Procedure] and an entire colon removal, plus removal of half [my] pancreas, most of stomach, the gall bladder, and [the] top portion of [my] small intestine in ONE surgery.  I also had loads of tumors removed and it was the first we knew of FAP for me.  I am very active and continue to sew, farm some and sub teach. I was 68 when this happened. - Sandra Redlands

     

    Every day is gift. You have to find the good in every day even if it's one of your worse day. Don't let your illness define who you are. You define who you are. It's a choice to smile. I didn't get to choice being sick. But I can choose to smile. Be grateful for the little things. Serve others, that is the greatest feeling. Love, faith, hope, joy. - Anonymous

     

    I don't let F.A.P. define me and I try to encourage my 4 children, also with the disease, to not let it define them either. I keep very active everyday with my youngest children and my two grandchildren. I biked 75 miles of a 100 mile charity bike ride and if my wrecked knees will let me, I'm training with my 6 and 11 year old girls to run a 5K. - Suzanne Pilon

     

    Having FAP/Gardeners syndrome has helped me appreciate life better. I tell everyone in my life I love them frequently, and [I] appreciate the little things. I make the most of hospital stays by getting to know my nurses. - Morgan

     

     

    Patient Wisdom

    Question 1: In what ways have you DEFIED your syndrome and lived your life to the fullest?

     

    Factoid: You can find inspiration in “Stories of Hope,” which highlight patients who refuse to be kept down by hereditary colon cancer!

    Click HERE to return to Patient Wisdom Survey Questions