Re: GYNECOLOGIC: Aggressive Angiomyxoma
From: anonymous@obgyn.net
Mon, 22 Oct 2007 20:39:53 -0500 (CDT)
Sorry, noticed part of the forum address got cut off:
it is
http://groups.google.com/group/aggressive-angiomyxoma-forum
At Mon, 22 Oct 2007, vancof wrote:
>
>I have aggressive angiomyxoma of the vulva/perineum area and had three
>surguries 5 years ago to remove a 12 cm tumor. I have regular mri's and
>follow ups every 6 months with no reoccurence.
>
>I am interested in meeting others with this condition, and especially
>finding out if there are other women out there who have gotten pregnant
>with no reoccurence. I have discussed with my doctor and she says
>there's really not enough information on reoccurence statistics in
>pregnancy, but that since it's been five years with no return, my
>chances are as good as any. I also feel that my turn to natural health
>has greatly helped me from having a reoccurence. I have been taking
>vitamins and supplements and trying to stick to an organic diet as well
>as taking care of myself in general (stress reduction, exercise etc.),
>in addition to having three surgeries up front to remove all traces of
>tumor.
>
>I did find one article of a woman in Israel with a successful pregnancy
>with no reoccurence. When I discussed this with my doctor, she made the
>great point of saying that there definitely could be more successful
>pregnancy cases that haven't been published, since the cases with
>treatment and reoccurence are the ones that are published.
>
>I've done lots of research on this topic, so maybe I've come across
>additional information that can help.
>
>I have just started an aggressive angiomyxoma forum as well at:
>http://groups.google.com/group/aggressive-angiomyxoma-foru
>
>Looking forward to meeting others in this community since this is such a
>rare condition.
>
>At Sat, 4 Aug 2007, Anita wrote:
>>
>>I would love to speak to someone who has this rare tumour. This tumour
>>is still classed as benign despite it having metastasized twice and
>>killed 2 women! There have been only about 100 - 150 cases in the world
>>apparantly and i am desperate to speak to anyone who has had the
>>experience. thanks
>>
>>--
>>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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