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Re: aggressive angiomyxomaFrom: anonymous@obgyn.netThu Dec 14 11:07:00 2006
At Fri, 16 Jan 2004, Marcia wrote: > >At Sun, 19 Oct 2003, debbie wrote: >> >>I want to reply to all who have the angiomyxoma tumor. I have had this >>tumor 4 times. It has occurred each time I got pregnant. Finally in >>1998 I found a great doctor in Las Vegas who saved my life. My tumor >>was 10#'s and she removed it and it has not come back since. After the >>removal of the tumor I was in bad medical shape, I got poisoning from my >>urine and bowel along with having to have an emergency hystorectomy, a >>colostomy as well as a tube in my kidney. Anyway, despite the pain I >>was in from the 8 hour surgery along with the other emergency surgeries, >>I survived and have been tumor free for 5 years. I am on Estrace, 2mg >>and that is it. I had Lupron therapy for 6 months following the >>surgery. Good luck to all!!! >> >>At Fri, 18 Apr 2003, melinda wrote: >>> >>>At Fri, 15 Mar 2002, Danielle wrote: >>>> >>>>At Sat, 28 Jul 2001, Paula wrote: >>>>> >>>>>I was diagnosed 3 weeks ago as having this cancer. The tumor was found >>>>>during my hysterectomy on June 11, 2001. >>>>>I'd love to hear from others with this cancer, I fear the mutilation of >>>>>the "radical hysterectomy" scheduled in 2 weeks to make sure the tumor >>>>>has been completely excised. I'm starting to wonder if I should opt to >>>>>not have surgery. >>>>>No other treatment was suggested. >>>>> >>>>>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 >>>> >>>>Hello to all who suffer from aggressive angioxyoma, my mother has also >>>>been diagnosed with this growth tumor. She has already had a total >>>>hysterectomy in February 2000. There is a new growth now, March 2002, >>>>and we are looking for other options to surgery, and also to speak with >>>>others with this growth. Any help would be greatly appreciated. >>> >>>I've been diagnosed with angiomyxoma in 1994. I had surgery to remove >>>what they could but it came back again. It was not malignant. I have >>>been taking megace for the tumor for the last 8years & it is keeping it >>>under control. My doctor feels surgery is really not a good option >>>because it is so aggressive >>>& will only come back again. The only thing with the megace is that you >>>gain alot of weight because its a hormone & also an appetite stimulant & >>>it's hard to diet when you're on it. >>>> >>>>-- >>>>Danielle C. Varney >>>> >-- >I have had an angiomyxoma for 8 years. I have had five surgeries and it has returned again!!!!!!!!!!!!!!!!!!!!!!! If there is anyone who can give me information on a doctor in the So. Calif or anywhere that I can speak to please let me know. I would like to get other opinions on treatment. >Thank you. >
-- I have just had a vulval tumour removed and it was difficult to distinguish it from the angiomyfibroblastoma so an MRI scan is recommended. I wish i knew which one it was as it seems the surgeon did not manage to remove it all and i am now worried that if it's the AAA then I should be reviewed quickly
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