I thought I had posted on this FAP thread, but maybe not. Yes, it is wonderful to connect with FAP people - I forget the stats - but we are a relatively rare breed - lucky us
Yes, FAP took out 11 of my father's 12 in the preceding generation. Can you imagine how scared he must have been - he got cancer at age 23 while in the army. This was back in the late 50s. They didn't have pouch then, so they removed the cancerous part and then for years he went in and got scoped, had polyps removed (no anesthesia).
At age 50, he got the pouch by a doctor in Austin, TX - Dr. Ralph Bailey - wonderful guy. My sister and I got the pouch at age 18 and 23 - also by Ralph in Austin. I wish we had not gotten it so young, looking back. That said, who knows? Maybe it was the right thing to do. I generally do not stay up to date on all the other data on FAP - all the thyroid and other things we need to worry about. I think the reason is my Dad is now 78 - 79 in a month - and none of those things happened to him. I know that is no guarantee for me. I know everyone is different in regard to how much they want to know regarding FAP. I think I may different because I was unable to have children. So, for me, I'm the end of the line on FAP. I hate that it sounds so selfish, but there ya have it.
BTW, they pressured him big time to go back to ileostomy as he had some cancer in pouch/rectum that was flat - maybe it was pre- cancer - I can't remember. This was about 5 years ago. She (his surgeon at Duke) said, I just don't think I can get to it. He thought long and hard and said, "nope". So, she cut at it etc. and hoped she got it all. Fast forward 5 years later - no problems with it - he scopes yearly. This may not have been the right choice for many - it was to him, and I'm so glad he is still here and doing pretty well for 79!
My sister has three kids - and two have been diagnosed with FAP - they go to Cleveland Clinic - fly there from Philly once a year. I hope maybe the third kid will luck out. I'm excited that they are doing the pouches larger, that the surgeries are less invasive now, and that they are trying to wait longer to ensure fertility and just spending less time with the pouch. When my sister and I did it, neither of us had cancer - and I wonder if I could have had kids and then gotten the pouch. That said, it didn't happen - I grieved a lot as I so wanted kids..but that was many moons ago. I'm 52, have had pouch almost 30 years. I am interested in information about FAP - especially if there is anything new they find out to help out my niece and nephews.
One odd thing - when my sister started all this prep for dealing with her kids having to go get tested, she went to do genetic testing in Philly. Her test came back negative for FAP and Lynch Syndrome. (Blood tests). Well, clearly she had something like FAP as her colon was carpeted with polyps - but, it must be some variation. If Chuckus or anyone knows anything about that, I'd sure be interested. She was pissed at first - as in - you are kidding - I don't have it? And I've lived with this pouch since I've been 18? But, she clearly has something - it just did not come up on blood test as FAP or Lynch or Gardners. Would love to know if others have done any of this type of genetic testing.
This was long, but wanted to introduce myself to the FAP group. Thanks to all for reading. It took me years to get onto this site and really get into it - it's been here for so long, and I just never felt like I had the time to explore it. I sure makes me feel less alone. So thankful for these website and all you out there who understand this experience.