ENDO Messages for January, 2004: Re: aggressive angiomyxoma

Re: aggressive angiomyxoma

From: Marcia (anonymous@obgyn.net)
Fri Jan 16 16:07:40 2004

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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.

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