I have read that desmoid tumors are the rarest form of tumors to have. Who on j-pouch.org has desmoid tumors or if the growths they have are not desmoid tumors and just growths on the outside of the small intestine? What medicines are you on to help prevent them from growing?
Desmoids are somewhat (more) common amongst us with FAP/GS, though not so much with the "average" person; so I guess we're more unique and special than others!
Desmoids can appear at anytime, however, are more likely when you have surgical procedures as scar tissue is somewhat of a "trigger" for them. Desmoids can be quite deadly, though not for all of us with them.
There are treatments that Oncologists can give you, some work for some people and some don't; just like everything else. What works for one person, may or may not with another person ~ each person is unique and how their body and any tumors or cancer may or may not respond, there is no known 100% cure all for them or cancers, again some people respond well to some treatments while others may not with the exact same treatment.
Quite a few people have problems with scar tissue and/or adhesions, adhesions can be quite painful.........and of course if you have surgery to remove them, that in and of itself can create more adhesions and scar tissue, propogation continues!
