© 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

    Team yourself with knowledge. Most insurance companies team with what they call Centers of Excellence around the country. If they understand you have a genetic cancer condition, and they team with a cancer center, often times they will approve it. You need to educate them. Don't expect them to know [about] FAP at the customer service level. If denied, appeal. - Michelle Sutter

     

    Do it at all costs, don't skimp and see some doctor who knows nothing and is 'learning' with you. If they are 'learning' and truly willing then that's one thing; but some doctors who don't know are truly clueless about the right surveillances required to keep us alive and what/where to watch next. - Charlie Henricks

     

    Bitch like hell. - Samuel Duckworth

     

    I’ve never had any issues as long as the healthcare providers document that I have a significant family history and personal history relevant to the requested consultation. If there are ever any issues, I provide a printout of the recommendations for screening as suggested by NCCN guidelines. - Anonymous

     

    If you can't get your insurance to pay for an expert, you can always enter a study. Most studies are ran by the [medical professionals] who see this disease on a daily basis. - Brian Hanson

     

    Utilize your PCP (Primary Care Physician), if you trust them and have faith in them. - Kelly Livingston

     

    This is a tough one as I am of the belief that I will get the best medical care necessary and make whatever payments necessary over time for what insurance will not cover. My health is more important than money. However, the top institutions have great billing teams that make it easy to navigate the systems. - Brooke Porretti

     

    Talk to your GI doctor about the FAP situation - then get advice on how to. - Ed Minor

     

    Show stats on why its best to see a Dr. you want to see. Fight for your health and do not give up. If they say [you’re] too young to worry about FAP, fight that too. - Kari

    Patient Wisdom

    Question 12: Do you have advice on getting an insurance referral to see an expert? 

     

    Factoid: "What are the differences between a HMO and a PPO? How do I get a referral through these insurance types?" Michael Bihari, MD, answers these questions on About.com.

    Click HERE to return to Patient Wisdom Survey Questions