I have 3 desmoid tumors, that we know of. I get occasional "pain" (very mild) from them and we watch them, constantly, to do our best to stay in front of them IF they should attach to organs, etc... so far, so good.

Desmoids typically are benign in nature, but, can be very debilitating depending on their location and what they might attach to, intertwine with and cause issues.

Sometimes you can see mine on CT's or MRI's, sometimes you cannot. If you do NOT have to touch them, your better off. Removing them should be a last option, as that only has the great potential to allow more to grow and propogate.

are you taking anything to keep them from growing?  How old were you when you were diagnosed with fap?

I am not taking anything, mine are "stable". There are some things they can try if they are growing, work for some and not for others. I think Navelbine possibly and there are some other Chemo Type drugs that have worked, again for some and not for others.

I was diagnosed at age 34 with this lovely disease, I'm now 45. Feel free to ask questions, I'll answer the best I can.

Chuckus,

Are you the first in your family to have fap?  I was 28 when diagnosed with it and the first in my family with it.  I was 27 when I started having rectal bleeding.  I am now 42.  When I was about 8, I started growing sebecous cysts.  I have had over 20 removed. We did not know why I was growing so many cysts until I was diagnosed at 28 with FAP. 

My biopsies are being sent to MD Anderson Sarcoma Center for a 2nd opinion.

I am a spontaneous mutation, so yes I am the first (and last) in my family. Looking back, I now know I had FAP/GS way earlier than I was ever diagnosed. Like you, I had multiple cysts along with Osteoma's and other tell-tale signs.

I've had genetic testing, to confirm what we already knew. At my first colonoscopy (and last one) they found thousands upon thousands of polyps in my colon and rectum. I had my total colectomy and J Pouch formation surgery 17 days after the colonoscopy.

Chuckus,

Was your father in Vietnam?  My father was in Vietnam before I was conceived.  I have always thought that my FAP and Agent Orange was connected.  How do you know you are the last in your family to have FAP?

I too have a vitamin d deficency.  Do you take anything for it?  I take 5000IU of Vitamin d daily.

KSR

My father wasn't in Vietnam, so no connection there; though he was in the service and I "think" there IS a connection somehow, someway to that...........

You ask how do I know I'm the last in my family..........my father didn't have it, he's deceased. My mother didn't have it, she's deceased. My sister didn't have it, she's deceased. My nephew doesn't have it, he's alive. I have no children (biologically) of my own.......and no one else in my extended family has it. I am 100% a spontaneous mutation!

I don't have a Vitamin D Deficency, though I struggle (sometimes) with B-12 and have to inject myself every 4-5 days with shots for it, just to keep on top of it. My family doctor also runs blood panels to check vitamin/mineral levels every 2 months since I'm missing so much "gut" and have absorption issues, we try and keep on top of any "issues" before they get big!

Where do you live? I'm just outside of Jacksonville, FL..........grew up in NC (outside of Charlotte) and was born in Minnesota!

Charlie