Re: aggressive angiomyxoma
From: anonymous (anonymous@obgyn.net)
Mon Oct 22 20:06:22 2007
I have aggressive angiomyxoma of the vulva/perineum area and had three
surguries 5 years ago to remove a 12cm tumor. I have regular mri's and
follow ups every 6 months with no reoccurence.
I am interested in 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 have decided to start a forum for aggressive angiomyxoma at:
http://groups.google.com/group/aggressive-angiomyxoma-forum
It'd be great to get to know others with this condition!
At Thu, 16 Aug 2007, ada wrote:
>
>I have not been through it. You might want to try the HysterSisters.com
>forums because they have such a wide range of forums and topics. Maybe
>you can find support there. Good luck! Ada
>t Thu, 16 Aug 2007, anonymous@obgyn.net wrote:
>>
>>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 cant find anyone to talk to about my aggressive angiomyxoma!
>>I am in England and have just started on tamoxifen to shrink the tumour
>>Anybody else going through this????
>>
>--
>Ada
>
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