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Hello, my name is Casey, and I am glad to find this community.  I am 36 years old and was officially diagnosed with Gardner's Syndrome in January of this year.  I have had tell tale signs for a while, but didn't want to acknowledge it.  This disease has attacked our family hard, I am the 4th generation to have the mutation and just lost my mom to Gardner's less than a year ago.  I know what to expect for my situation, for the most part, but some of the side issues or complications that could arise are what concern me.  I have found these forums to be comforting to know I'm not by myself in this fight, everyone who had Gardner's in my family has unfortunately passed away.  I have had 3 surgeries this year; a dental/jaw surgery for unerrupted/extra teeth, Total Thyroidectomy, and the first leg of my Proctocolectomy/ipaa/loop surgery just completed a few weeks ago.  My jaw surgery was to make sure I didn't permanently feeling in my face/ear and decided to have my thyroid removed because of adenomatous goiters were abstracting my airway and vocal chords.  The colon surgeries are self-explanatory.  As far as I am concerned God has blessed me with great doctors and surgically I have basically had no complications and look forward to having the Takedown performed, when the time is right.  

Now that i have eliminated my cancer risks at this point, I am now shifting my concerns towards learning more about Desmoid tumors, as it carries a nearly 100% chance in my case at least, based on my family history...everyone had them and died from them directly/indirectly.  The hardest thing for me period though is knowing that I have two kids that need to be tested and it breaks my heart to think I could be passing this legacy onto them as well.  They are being tested soon. 

Thank you for allowing me to join this community; it is important to keep a positive outlook, and the priceless information/experiences in forums helps me do just that!

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Welcome! We are all here for one another and if you have questions, ask! We are all here to help.

You definitely need to keep up the surveillance for desmoids, as well as for duodenal polyps as well. Make sure and get your upper/lower scopes yearly, minimum.

I have 3 desmoids that pretty much have been stable for the past 5 years, so that's good news. But we still surveil them via CT scan (due to having a AICD I cannot do MRI's any longer).

Again, welcome!


Thank you for the warm welcome Charlie.  I so far have no desmoids, based on scans and surgery, but they do worry me.  My upper scopes showed that I do have polyps in my stomach, but my duodenum was clear.  I was told by my gastrointestinal doctor what I did have I shouldn't lose sleep over that they were not adenomatous.  The only thing he said I didn't agree with was that he didn't need to look again for 5 years.  I believe I feel better about your advice, going every year.

It's great news that your desmoids are stable, I hope it stays that way for years to come.  Do you take any medications for them?  Just curious.

Thank you,


HI Casey,

Sorry for the delay in replying! Been hyper busy with work, etc...

Scopes annually (minimum) is very smart with FAP/GS........things can and do change quickly. We aren't "normal" relative to how quickly things can change. My situation went from "good" to "surgery imminent" in about 9 months for duodenal take it from experience, surveilance annually (mimimum) is the wise choice.

In my eyes, any doctor/GI who tells someone with FAP/GS to not get scopes annually is clueless and I would never see them, ever. They have no clue and there are FAP/GS educated GI's out there who do know and understand our elevated risks/issues.

I don't take any medications for my desmoids, I'm just mindful of my desmoids and we monitor them via CT yearly and keep a close eye on them. Some people do take medications, some don't...........some medications work for some, not so much for others. There's no real "blanket" solution. I've talked about medications if needed with my guru at Mayo, we are prepared if need be to go that route, but, as of now no real reason to do so.

Again, welcome! Feel free to ask away!


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