Familal Adenomatous Polyposis (FAP)

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KDJ1968
KDJ1968 Member Posts: 2
edited March 2014 in Colorectal Cancer #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 that can develop into Colon Cancer. 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

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  • BJD55
    BJD55 Member Posts: 1
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    FAP response to KDJ1968
    Hi. I have FAP with extra colonic manifestations. I'm sorry to hear that you're dealing with so much right now. You said you couldn't imagine being without a colon. I have neither a colon nor rectum. I didn't have cancer either, and it took alot of reading to wrap my mind around a major amputation, and as far as we knew at the time, it was just a PREcursor to cancer. You absolutely CAN live without a colon. I'm surprized that you're having your colon removed from an average of 10-15 polyps. In MY case, they stopped counting when they hit 400. That's a bit of a difference. Do you have attenuated FAP? Have you gotten a second opinion?

    I know in my reading, I've seen mention of the surgical procedures you mentioned, but my focus has been on what's relevant to me, so the best I can say is spend time looking the titles of the procedures up as definitions. Also , set up alerts with your email accounts to have information sent to you. Different companies have more effective search mechanisms. I've gotten the best results with Google. Get as much information as you can from as many different resources. Most of my polyps are in my duodenum, and relatively few are in the gastric fundic gland (top of the stomach) so I spend more time reading about potential outcomes of the Whipple procedure. As far as surgical procedures, learn everything that you can, but don't freak yourself out with things that you don't have to deal with right now.

    I'm from NY, and not really familiar with your area, but if you're looking for support groups, the first place I'd call would be your local American Cancer Society chapter. Also, how far from Johns Hopkins are you? Would it pay to look up their website, or call the information number at their hospital to see if there are local support groups that they run? There are also online groups, like ACOR ( the Association of Online Cancer Resources). They have a "list serve". It's numerous lists of cancer-related categories that you can subscribe to. When someone sends an email, you get notification, so if you're interested in the subject of the specific conversation, you can read it, or post a comment about it. Hope that helps.
    Bonnie