FAP - Polyposis in the Colon

I was diagnosed with FAP two years ago. I am not cancerous as of yet, but am wondering if there is anyone else out there who has FAP? My FAP is a genetic mutation of the APC gene, no other family history of FAP. I will soon see a colorectal surgeon in regards to getting a total colectomy. I have been researching the goodness out of all the options with FAP and what treatment options are available for two years. Not until my most recent colonoscopy did the doctor ask that I see a colorectal surgeon within two weeks.

My doctor found atleast 4 carpet leasion. All were biopsied with no cancer findings. My doctor explained that carpet leasions are something that he would normally see before cancer forms. This is the second doctor that I have seen in regards to my FAP diagnosis, I am not afraid or concerned about his findings. I just wonder (making me a little uncomfortable) how long until the results do not come back negative.

I would assume that if cancer is found before, during, or after the colectomy that chemo would become involved.

I know that these types of things are a very private matter, but to have another individual to discuss this with that would not fear for my life (most of my family and friends) to talk to would make this easier (I think). So basically I am looking for a few FAP battle budies :-)


  • hall0731
    hall0731 Member Posts: 1
    Fellow FAP patient
    I was diagnosed with stage 3 colon cancer. I had thousands of polyps in my colon and rectum. Everything was precancerous except in my sigmoid colon. Mine was caused from FAP. I had the genetic testing done and mine came back that I have a mutation of the APC sequencing gene. I had my entire colon and rectum taken out and 225 lymph nodes. Only 1 of them had cancer cells in them. I am now doing 12 treatments of folfox. I have had a ct scan and there was no spread before surgery. I have had an endoscopy and my stomach and deodeum is ok. I was told that everything should be taken to prevent the cancer. My older sister has about 100 polyps and hers is benign right now. 2 opinions from gastro. Docs have said she needs to remove it now before cancer develops. Depending on what it looks like when she ges it out as to wether she will have to do chemo.