I also have FAP and regular scopings have shown a large number of small polyps in my stomach, which my GI does not seem concerned enough to biopsy. His belief is that there is little chance of malignancy developing from them. He ablates about 25 polyps during each exam. I am curious how your doctor identified the two polyps out of many that turned out with dysplasia. I trust my GI, but perhaps there is more he needs to know about these polyps. FAP is hereditary, but both of my daughters did not get it (they were born before my diagnosis in 1981).

In the US, stomach cancer due to FAP is very very very rare. Like 1% chance when I had my genetic counseling done and saw the numbers. We discussed stomach removal and I was told to never let a doctor remove the stomach, they aren't educated enough. I would perhaps get a new GI. Or seek out other opinions from reputable GI/Geneticists in the field.

I have had severe dysplasia two times in my duodenum and nobody is doing a whipple so why remove a stomach?

FAP is genetic mutation, not considered hereditary by the way Bill. It can be based on but the actual disease is genetic. Most of us get it with nobody else having it. Genetic selection should always be done when trying to breed to rule out passing the gene along.

hey all:

i have adenomatous polyps in my jpouch. they werent there a few years ago, things change. everyone with fap as far as im aware has some sort of stomach polyps which are usually diagnosed as hyperplastic rather than pre-cancerous/adenomas.

my g,i. wants me to go to hopkins in baltimore but im going to u of p in philly to see dr anil rustgi who studies fap, he is a genieologist type of dr and knows his the ins and outs of fap. i will go for a 3rd opinion if needed. i didnt have jpouch surgery in 2001 to be told i may need my jpouch removed. im very upset but this disease is beyond our control. while the jpouch isnt perfect no surgical outcome is and we have to live to the best of our ability but everyone cant accept a bag for life. and im not a candidate for celebrex at 800 mg because you can die from cardiac impacts ifc you have blood pressure elevated and take setriod induced meds (fyi im on hrt: testosterone for life) and have high blood pressure so cant take celebrex and the recommended 800 mg, 400 mg twice a day to reduce the adenomas. im petrified that if i dont keep ip with pouch scopes every 4 to 6 months like my g.i of 13-14 years wants i will develop dysplasia. its a very scary world in the world of having fap, and it sucks!

sorry for venting in here, but thats my current situation!

-len

Thank you all for the insight. It's nice to know that there are others out here with the same issues(wish the issue weren't so nasty) I feel much better about not taking their advice as gospel. The reason the first doc picked those two was because they were 1 cm each and bigger than the rest. The second doc did a scope and also did an internal ultrasound, white light and NBI (what that exactly means I am unsure of) to look for adenomas tissue (none was found). The cystic fundic polyps I have had before have had some low grade displaysia but I think what is freaking them out is finding a couple Adenomas mixed in with the others. They want to remove the stomach because they feel they might miss something except I KNOW I will miss my stomach is the only sure bet in this whole mess. As a child,I was in a Fap study at John Hopkins perhaps it's time to pick their noodle? Thanks