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Re: aggressive angiomyxomaFrom: anonymous@obgyn.netTue Sep 16 19:39:19 2003
At Wed, 22 Jan 2003, anonymous wrote: > >At Tue, 31 Dec 2002, helen wrote: >> >>At Sat, 21 Apr 2001, anonymous@obgyn.net wrote: >>> >>>to carolyn who has this rare tumour...my sister also suffers from this >>>please reply as to how you are now are you in pain as my sister is daily >>>what treatment are you taking...would love to hear from you or anyone >>>else suffering from same...many thanks Geraldine >> >>-- >>hi i also have this rare timour and i have been fighting it will be 11 years on 1-28 03 thay say it is not painefull that a lie iam going to try a treatment in a week or two i'll let you know if it works ps the only thing that has helped at all is god and a lot of praying >> >I have been dealing with pelvic aggressive angiomyxoma for 13 years and >have had 7 surgical procedures, the last one in Sept.'02. Keeps coming >back. The doctors say that my tumor is not hormonally receptive, so >estrogen doesn't affect the growth. Very frustrating to have >recurrence. Seems the only treatment is surgical excision of tumor. I >have pain when the tumor grows and is pressing against a nerve.
-- >From Carolyn, I finally had the aggressive angiomyxoma removed at the Thomas Jefferson University hospital in Phil. Pa. There was an endochrinologist, a Radiologist, and a general surgeon. They put me on lupron shots for 5 months then put me in the hospital and did an embolization of the tumor. The next day the surgeon went in and removed the tumor with clear margins. I wwas in the hospital for 6 days. It has been two years and no reccurance. What a wonderful team of doctors and a great hospital to be in.The surgeon was Dr.francis Rosato, Endochrinologist was Dr. Stephen Corson and the Radiologist was Dr. Eschelman. They had a plan and followed through. I have a small scar and years of pain and swelling of this strange tumor are now gone. I get an MRI every 6 mos. and an examination. I keep my fingers crossed and pray to god it never comes back! It is DEFINITLY a hormone related tumor. More estrogen then not. Go on Lupron for a few months then watch it shrink. Then get a really good surgeon to remove it. Call Thomas Jefferson Univeresity Hosp and ask for Dr Francis Rosato. He is the best!!! Good Luck! Carolyn Abbate
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