WOMENS-HEALTH Messages for October, 2007: Re: GYNECOLOGIC: Aggressive Angiomyxoma

Re: GYNECOLOGIC: Aggressive Angiomyxoma

From: vancof (anonymous@obgyn.net)
Mon, 22 Oct 2007 20:28:56 -0500 (CDT)

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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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