seeking answers & solutions

was diagnosed with FAP in May 2006, I underwent a complete hysterectomy and colectomy in June 2006.  At that time there were abnormal cells forming but no actual malignacies.  In June of 2007 I have a giant agressive Desmoid (paraspinal tumor) that was growing up against my spine removed (it was huge) again no "malignancies" but there were cells outside the margin leaving the real possibilty that it would return.  In December 2007 they discovered a small desmoid tumor on the outside on my Jpouch but decided to leave it alone for now.  I have had several more FAP polyps removed from my colon that had they had to burn the conective tissue. Then in April 2008 I had another desmoid tumor removed from my ankel that grew on the sheth of the akilies (achilles) tendon (right side) and now .. after a recent onset of breast discharge .. they have found what appears to be a "6mm complex cyst or polpy with mural node" or it could be another desmoid in my right breast at 12 o'clock.  Other than trying suldinac no of my doctors have offered me any type of treatments other than surgery.  I am due to see yet another surgeon on Tuesday.  Is there any one who can truely help me I am only 35 yrs old and many years of "surgery" ahead of me ...

[Dr_Aparna]

Hi,
A desmoid tumor (sometimes referred to as aggressive fibromatosis) is a rare (3 per million population) tumor that may or may not be part of a genetic syndrome such as familial adenomatous polyposis (FAP).
Histologically they resemble low-grade fibrosarcomas, but they are very infiltrative and tend to recur even after complete resection (systemic metastasis is rare).
Desmoid tumors may be classified as extra-abdominal, abdominal wall, or intra-abdominal (the last is more common in patients with FAP).
It is thought that the lesions may develop in relation to estrogen levels or trauma/operations.
Treatment may consist of watching and waiting, complete surgical removal, radiation therapy, antiestrogens and NSAIDs, or chemotherapy.
Retrieved from "http://en.wikipedia.org/wiki/Desmoid_tumor"
Hope this information helps you to discuss other options but the final decision rests with your doctor and your compliance with it will be in your best interest.

[Maziekienb]

Hi
Thank you for responding to me .. unfortunatly I have had a crash course on what desmoid tumors are .. It's just  that so far with me .. they don't appear to be rare ! and considering this fact the " watching and waiting" and surgical resections seems a bit stone age to me.  
Considering the fact that my body no longer produces estrogen .. and because of that risk factor I have not taken any estrogen meds .. could this realy be a contributor at this point?
As far as the nsaids .. they had me on suldinac and that was not working at all .. so I stopped taking it.
Do you have any other suggestions as far a medications that could be useful? What type of chemo ? Radiation?
I need to bring something to the table when I sit down and talk to my dr again. It's just reaching a point that if I don't get a plan in place .. I am going to stop letting them do surgery on me and let nature take it's course.
My mother had one of these that wrapped around her heart and lung .. and she let it go too long and she ended up dying in 2004 .. so I know what I am saying here but .. I just don't know how much more a person is expected to take ... why in the world if they are so rare are they popping up all over my body ..