Familial Adenomatous Polyposis (FAP) and Stomach Precancerous polyps

KDJ1968
KDJ1968 Member Posts: 2
edited March 2014 in Emotional Support #1
Hello,
I am a 40 year old female, several years ago I was diagnosed with FAP (Familial Adenomatous Polyposis, A rare inherited cancer predisposition syndrome. Since the diagnosis I have been receiving annual colonoscopy. The average amount of polyps collected from my colon were 10-15, in which none of them were cancerous. This particular year I received an upper endoscopy and a colonoscopy. The upper endoscopy showed I had polyps covering the entire stomach, 2 of the polyps collected showed evidence of low grade dysplasia. Now the doctors are interested in giving me a Total Gastrectomy with Roux-en-Y Esophago-jejunostomy (whatever that means?).And in the future, I am to consider a full removal of the colon. Are these to diseases both related with FAP? Is there a local support group of patients living with the FAP disease in my area(Laurel, Maryland area)? This is all new to me and I am so nervous right now. I know the surgery is very important to me and the doctors are considering this for precautionary measures. I just don’t understand, how am I going to live without a stomach and a colon or have problems related to the surgery. Thanks

Comments

  • SonSon
    SonSon Member Posts: 174
    #2
    Colorectal Cancer
    If you have not done so already try posting in the discussion boards for Colorectal Cancer. I am sure that you will get guidance there.
    Fatima
  • reddwarfen
    reddwarfen Member Posts: 1
    #3
    FAP
    Hi,
    I also have FAP. I had my colon removed in 2009. It went well. I would recomend it being removed. I had my yearly endoscopy and colonoscopy this week and thought all would be ok. My rectom and small intestin was ok but when they went into my stomach it was loaded. My doctor said she might have to remove part of my stomach. I am very nervous. Did you have the Roux-en-Y Esophago-jejunostomy? If so how did it go? Any information would be helpful. I have not been able to find any information about FAP and stomach removal.
    Thanks a bunch
    Reddwarfen
    Aslo, the Mayo clinic has an FAP support group.
  • PuffyHon
    PuffyHon Member Posts: 7
    #4
    reddwarfen said:

    FAP
    Hi,
    I also have FAP. I had my colon removed in 2009. It went well. I would recomend it being removed. I had my yearly endoscopy and colonoscopy this week and thought all would be ok. My rectom and small intestin was ok but when they went into my stomach it was loaded. My doctor said she might have to remove part of my stomach. I am very nervous. Did you have the Roux-en-Y Esophago-jejunostomy? If so how did it go? Any information would be helpful. I have not been able to find any information about FAP and stomach removal.
    Thanks a bunch
    Reddwarfen
    Aslo, the Mayo clinic has an FAP support group.

    FAP
    Have any of you gone through the stomach surgery and how are you doing?

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