Recurrent aggressive angiomyxoma

[redwoodgodess]

Wow a group! I have had this tumor for 10 years! I have had 3 major
surgery's radiation therapy in 1998 ( which caused huge problems).
Last January I had a third recurrence and this time I had to have a
hysterectomy and a colon-ostomy. The good news is I just got the
approval to have that last part reversed.

I have had this tumor come back in the same area each time, it seems
to stay localized.

I am 39 years old and am currently going threw chemical menaupause.
Also I cannot do estregen replacement therapy due to the effect of
estrogen on this tumors growth.

I would love to know anyone who also has this tumor.

Best of health!

Sheba
Arcata, Ca

[ronnie]

Hi! Welcome to the very small and of course exclusive group for AA!!
I was diagnosed with this tumour in 2004 and had my first operation to
remove the tumor in 2005, my tumour at this stage was the size of
several oranges, and it was found purely by chance!! Thisoperaion was
not successful and the tumour grew back. In 2006 I had radical
surgery to remove the tumour, resulting in a hysterectomy. I too had
radiotherapy treatment, although at the time it was very sore and
painful, I have not had any reoccurent problems with this. My last
MRI which was Jan 2007 was clear, however, I feel that my next MRI due
in June 2008 will be the telling one as this will be 2 years since my
operation and treatment.

I am 44.

My tumour is not hormone receptive although my consultant did not want
to risk HRT even though I am going through the menopause.

There is another lady in the UK who is registered on this forum
(infact I think she set it up), and we have become good friends after
finding each other via the internet, both suffering from this
tumour.

It is good to speak with other people who have AA as it is so rare!

Where are you at the moment with treatment etc. When do you have
follow up from your last surgery?

I am assuming that CA stands for California? I am in the UK. My
consultant has been exceptional although mine is the first AA he has
treated.

Good Health

Sarah

[sheba]

Hi Sarah! Thank you for writing and telling me a little about your story. I
am 39 now, I was 27 when they found my first tumor of 14 pounds. It was huge
and had it's own vascular system, At that point they believed it to be
gone. A year later I was had a recurrence and went to Stanford near in San
francisco to have a 2nd surgery. This time I had a follow up of 6 weeks of
radiation therapy. ( they don't do that anymore). This just made my system
worse.
I was mis-diagnosed from 2002-2007 as being fine but really i had a
recurrence. I had another surgery in January of o7, this time with Dr. Katel
O'hanlan, she is a rare tumor specialist and Oncologist. I get follow up
MRI's at UCSF comprehensive cancer center every 6 months now! I just
graduated from 4 times per year. So I have recovering this year.... I live
about 400 miles from most of my doctors but there are a few local good
people for emergency. I am on femara now which they hope will keep the
tumor at bay, The side effects are not so fun. I feel like I'm 100 years old
some days. I just had an actual pelvic exam. It was no fun lots of numbness
and painful. It will be a long time before I can be sexually active again.
I can't wait to have this colonostomy reversed. I am gearing up for that
with tests and blood work etc.. This has caused me to have anxiety, so that
is difficult.

I have a great Boyfriend and a wonderful son (16) who keep me busy and out
of trouble. Also 1 dog and 2 cats.

I live in Humboldt County California but I grew up in NYC. I traded the
Redwoods for Broadway.

It's really great to hear from another in my situation. I belong to a cancer
support group but that is for all sorts of cancers ,"Gyn Gals".

I look forward to talking to you again!

Blessed Be,
Sheba

.