© 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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    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 enjoy art therapy at the local cancer center. I was unable to find a support group for colon cancer. The support groups I tried had mostly breast cancer members. - Tami Arnold

     

    I follow the FAP Foundation and other groups on Facebook. It's tough for me as I have a mild version of what everyone else is facing. However, I know [that] if my condition worsens, and I have to have procedures done, that there are people who I can go to for help. - Brooke Porretti

     

    Cancer Council Victoria - an Australian not-for-profit cancer support service whom I volunteer with. They have great online nurses who have all had some experience in oncology and also have all information close at hand. - Elaine Duxbury

     

    My wife is very supportive, and my kids are understanding. Being able to discuss matters with so many other folks who share our rare disease (in my case, via on-line resources) is a most important support in my case. - Anonymous

     

    Online support groups. - Tiffany Probus

     

    Family, close friends, my cat, blogs/vlogs by fellow sick chicks, a new adventure…the usual suspects as well as some unpredicted ones. Although some relationships suffer from the weight of illness, others emerge! It looks like I'm going to meet up with a professor who terrified me in college to philosophically analyze my perception of disability! - Dakota

     

    1. Jesus Christ, 2. Family, 3. A friend of mine who has FAP. - Brian Hanson

     

    Family and my physician have been my support. I have a wonderful husband who has become educated on the disease and is always there for me. I have not been aware of any support group for FAP. - Sandy Bunnell

     

    My husband, online Lynch community, my pets. - Lara Breunig

     

    My family is my biggest support system. They are fantastic and have always been more than willing to help out and visit when I am sick. Also, [there are] many support groups. - Anonymous

     

    My family and friends are very supportive. Even though my friends don't know anyone else with my disease, they have been so supportive! - Anonymous

     

    I turn for support to my family and friends, as well as my doctors. My parents have been incredibly supportive as well as my friends. - Anonymous

     

    Inward. - Georgia Hurst

     

    I talk to my wife. - Malcolm Scott

     

    Family, friends and therapist. - Allison Brewer

     

    My husband, my parents when they were alive, my step-sons, my sisters and brother, my doctors, my nurses, my relatives (aunts, uncles, cousins), my friends and ,most recently, I have joined support groups on Facebook. - Betty Starr

     

    My friends with similar syndromes. - Linda Warner

     

    Many Facebook groups and J-pouch.org is a great place for advice or just a place to vent to those that know what you are going through. - Samia Jouni

     

    There are websites like: ihadcancer.com, treatmentdiaries.com, inspire.com, blogforacure.com, hystersisters.com, colon cancer alliance, ostomates, navigate cancer foundation, etc. - Emily Wilson

     

    Living with FAP Facebook group. - Tiffany Costello

     

    My family first, because my dad and 4 sisters have exactly what I do and, if they can’t help me, then I turn to a friend or someone who has been through what I am experiencing. - Melanie Hirschi

     

    My husband! - Anonymous

     

    My family and friends, medical team, Facebook and the [Familial Adenomatous Polyposis] Foundation. - Michelle Sutter

     

    My team, my daughters, my friends if I am in need of someone around. If it is for medical issues I have great rapport with my primary doctor and I can always connect with the team. The online ostomy group is excellent too. - Sandra Redlands

     

    Family and friends. - Anonymous

     

    Friends, family, and my dog. I also go to counseling from time to time. - Morgan

     

    My husband and a friend who has SBS. She understands some of what I'm going through because she has no small intestine.

    - Whitley Buckles

     

    My animals, books, sometimes my faith. - Kathryn Howard

     

    We rely on each other, as there are 5 of us with the disease and we receive support from our team of doctors and nurses.

    - Suzanne Pilon

    Patient Wisdom

    Question 20: Where do you turn for support?

     

    Factoid:  “We get by with a little help from our friends.” - Beatles

    Click here for a list of organizations that provide support to those dealing with a hereditary colon cancer condition. 

    Click HERE to return to Patient Wisdom Survey Questions