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Reply to "Frustrated and scared to have total proctocoletomy"


I want to offer my condolences and try to be as sturdy a rock for you as possible, like all the other beautiful people on here <3 It's scary--all of it: the prospect of cancer, familial adenomatous polyposis, talking about it. But even if it doesn't seem like it, you have total control over what happens to your body from this point on.

Definitely get a second opinion. When I was diagnosed with FAP, my mom and I talked to two different surgeons, one she was familiar with and one my GI doctor recommended. We heard their plans for my surgery (the former wanted to do the one-step laparoscopic surgery and estimated it at three hours; the latter wanted to do something with a robot and a two-step procedure and estimated the first surgery at six hours). My parents and I liked both doctors but I ultimately chose the less complicated surgery, mostly because it wouldn't take as long.

If you don't have a family history of FAP and you're not really sure what's going on, I think the best thing for you is to get a second or, preferably, third opinion. Try to find a surgeon who's familiar with FAP. Having other options did wonders for my psyche. I was still scared, of course, but a large part of the fear is that lack of control. Life gets flipped and you gotta try to knock it back, even if it's just a couple degrees. 

I believe in you, BBE. You're so strong, and you have the support of all your loved ones and all of us on these forums. If you have any questions at all about FAP, I'm more than happy to answer them. Feel free to PM me! Love and hugs,


Last edited by LeahD
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