need info on fap

ladybugg
ladybugg Member Posts: 20
edited March 2014 in Colorectal Cancer #1
i have 4 kids and was just diagnosied with fap. at first it was rectal cancer that was never staged. i am so confused please can someone help?i have been dealing with this for 3 years and have a ileostomy. can't get any answers from the doctors just test after test. they are doing a egd on 3/23/07, hope they don't find anything but i'm in alot of pain.

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Fishgirl
    Fishgirl Member Posts: 5
    #3
    http://health.groups.yahoo.com/group/familialpolyposissupport/ That is a FANTASTIC group on FAP. There is so much information and it is really good to have people that understand. I am the 8th person in my mom's family to have FAP and thusly removal of the colon. (all but 4 inches) Thankfully for some reason no one has actually died of colon cancer. My grandmother was in her late 60s when they found her FAP and it was never cancerous. The rest of us have been pre-cancerous, and when I went on March 5th they removed the real thing. Very scary but they got it all. Now I am being seen for large masses in my liver. Lets hope it didn't go for a little stroll....*sigh* but Cleveland Clinic is also a good resource. They specialize in the disease. You need to research all you can so you know how to deal with ingorant doctors (Like mine) and know what to do for your children. (GET THEIR BLOOD TESTED!!!) :) I hope this helps. Feel free to mail, we have lots of history with little disease.
  • ladybugg
    ladybugg Member Posts: 20
    #4
    Fishgirl said:

    http://health.groups.yahoo.com/group/familialpolyposissupport/ That is a FANTASTIC group on FAP. There is so much information and it is really good to have people that understand. I am the 8th person in my mom's family to have FAP and thusly removal of the colon. (all but 4 inches) Thankfully for some reason no one has actually died of colon cancer. My grandmother was in her late 60s when they found her FAP and it was never cancerous. The rest of us have been pre-cancerous, and when I went on March 5th they removed the real thing. Very scary but they got it all. Now I am being seen for large masses in my liver. Lets hope it didn't go for a little stroll....*sigh* but Cleveland Clinic is also a good resource. They specialize in the disease. You need to research all you can so you know how to deal with ingorant doctors (Like mine) and know what to do for your children. (GET THEIR BLOOD TESTED!!!) :) I hope this helps. Feel free to mail, we have lots of history with little disease.

    Thank you for repling I am not as lucky as you. Everyone that has the fap in my family has passed. I had my whole large intestine removed and now have a permanent ileostomy. I had an EGD done and the polyps are moving they are in my small intestine. I know about the Cleveland Clinic, I was born and raised in Cleveland. But I live in North Carolina now. They are sending me to a cancer center in winston-salem, and it is 2 hours from my home. But I have to go through this and fight I'm not ready to give up. I will keep everyone informed of what they plan to do. Thank you again. I will be praying for you and your family. Jackie

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