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Old 12-27-2012, 06:44 PM   #1
Join Date: Dec 2012
Location: USA
Posts: 1
dave5521 HB User
Desmoid Fibromitosis Tumor

I was diagnosed a 18 months ago with this dreaded disease, finding a tumor in my right chest wall. I have been healthy all my life, but suddenly this rare semi-cancer has popped up. I am exploring the "wait and see" approach which has been a subject of discussion in the medical literature lately. The surgery I am now facing (second as a result of recurrence) is intrusive, includes removal of ribs, plastic surgery and radiology. If this provided a guaranty of no recurrence, it would be an easy decision. However, even after undergoing major surgery, there is no guaranty that it will not return for the third time. It could then return a 4th time and so on. The repeated surgery and radiology treatment could mean a downward spiral of one's health and ultimately death. Apparently about 20% stabilize or spontaneously regress. I am thinking that a "wait and see" approach with careful monitoring may be appropriate to at least GIVE MYSELF A CHANCE TO DEAL WITH THE DISEASE WITHOUT POTENTIALLY LIFE ALTERING SURGERY. Anyone with any experience or insights that would be helpful?

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