support needed ...my story...i'm sacred

[Guest guest]

>

Hi Janie and other group members

Hello.. I am new to the group and wanted to thank everyone for the

posts I have been reading daily. Its comforting to know others are

going through the same diagnosis.

I looked into FUS (focused ultrasound) . The contact is Louise

Greenberg at Brigham and Womens Hospital in Boston. She is running the

FUS research trials for a Dr . Louise's number is

When you call it there is a voice message saying to send

an email to her with your contact info. I did this and got a reply

saying they were not seeing any new patients until late April 2004. I

read somewhere this technique should get approval in late 2004.

I decided due to my fibroids' position ( near vital organs like my

liver ) and surgery to remove them to leave a working uterus would be

a difficult one. Despite all that has been posted here I have decided

to got with a very skilled doctor ( an oncologist ) who said she would

try a myomectomy but a hysterectomy might be necessary if it was

malignant or very difficult to remove. My fibroids are quite large,..

one is 9.3cm x 8cm x 8.9cm and is penduculated and up by my RIB/liver

!! Another is posterior and 10cm x 10.1cm x 8.1cm above my cervix and

pressing on my spine and my vena cava / aorta causing a pulsing feeling

in my pelvis and abdomen. There are about 10+ other smaller ones all

subserosal and intermural . No submucosal ones. My surgery is on March

26th. I am hoping for the best but freaking out since I am 40 and don't

have children. I'm pertrified its really leimyosarcoma despite

everything I have read and seen posted here about the small incidence

of occurrence. Fibroids should be monclonal but mine appear " slightly

heterogeneous " on MRI but that could be due to secondary necrotic

changes occurring due to these buggers out growing their blood supply.

I mentioned the LDH test to my doctor ( she is an oncologist ) and said

she would look into the paper ...( I have also read it myself ) but at

this point I need surgery either way since it is impinging on vital

organs. I also look about 4 months pregnant so although I fear a

hysterectomy I would be glad to have them out and have it not be

cancerous. By the way I was told 5 years ago that I had fibroids and to

do nothing about them. I wish I knew then what I know now I certainly

would have done something about it then .

Wish me luck and thanks for listening. I can also be reached privately

at safetystop@...

Donna

> Is this still in the research/trial period.

> Is anyone familiar with any Drs who perform it accept at the Woman's

> Hospital in Boston. I've emailed and called them but no return phone

> call or email to communicate. Thanks for your suggestions and

> information.

>

> Janie

>

[Guest guest]

Hey Donna!

I know the feeling of waiting too long and wishing I had known 3

years ago! But...don't beat yourself up about it! I am 39 and had a

similar mess going inside with my fibroids. I had a 20 cm fibroid

that went all the way up to my ribs on the left side (opposite of

yours) and 2 others that were 20cm and 18 cm respectively. These

buggers weighed over 12 pounds!

During my surgery they had to call in a cancer Dr. to remove the one

that was by my ribs as it had turned parasitic and latched onto the

fat around my colon for its blood supply! It sounds like you are in

very capeable hands with your Doc being an oncologist! They are very

used to dealing with challenging surgeries. My Dr. said that some of

my fibroids had undergone a very strange degeneration...nothng like

what he had seen before. Also, I had similar comments on my CT

reports....BUT ALL WAS fine! No cancer! And as you have read...it

is a VERY VERY RARE thing for fibroids to be cancerous.

You hang in there and think positive thoughts. You are going to get

through this fine! 8 days and you will be fibroid free and your

vital organs will be breathing a sigh of relief as they won't have

those nasty buggers pressing on them any more!

You are in my thoughts and prayers! If you have any other questions

feel free to e-mail me or post!