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endimetrial stromal sarcoma endimetrial stromal sarcoma

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  #1  
Unread 06-16-2003, 09:05 AM
endimetrial stromal sarcoma

My mother is actually the one who has been diagnosed and very recently. They have gone from just endimetrosis to I don't know to low grade sarcoma to high grade fast growing ess. She had a pet scan and within 3 weeks went from nothing showing on the scan to her bowels rupturing because it is growing so fast. They have decided to try a chemo that shows "some" promise. She had the first surgery in February 2003 and as of today it has grown back three times. Any advise, ideas, information??????? They have blamed it on the estrogen that she has been on for 11 years, she is 55. We are so confused and emotions are just running so high, it is happening so fast. The doctor is talking about letting her come home with all her machines and iv's and catheters and that is where she wants to be. Any suggestions for services that are provided to patients in their homes? Thanks
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  #2  
Unread 06-16-2003, 12:14 PM
HRT

Lynne, I'm sorry about your mother. Fifty-five is too young for this. I'm a year older.

I was on Premarin (estrogen) for 13 years, but that was after a TAH / BSO. Did not have to worry about any gyn cancers. (Hyst was done due to fibroids and heavy bleeding. No cancer was suspected or found.)

What ERT was she taking? I don't know if the Premarin really had anything to do with it, but I was diagnosed with DCIS (very, very, very early breast cancer / stage 0) last November. Stopped taking the Premarin cold turkey on the day I got the diagnosis.

Good luck to your mother.

Mary D.
  #3  
Unread 06-16-2003, 07:31 PM
endimetrial stromal sarcoma

s Lynne

I am so sorry to read about your Mom!!!
I belong to a gyn cancer support group at Fox Chase Cancer Center in Phila. One of my fellow members has endometrial stromal sarcoma like your Mom. I know this is a very rare cancer. There is an excellent on line support group for this diagnosis. I have shared the address with other ladies on Cancer Concerns, but I just did a search and cannot find the web address. I have emailed my friend, and I know as soon as she reads the email, she will be emailing the web address to me. WHen she does, I will post it here for you. Perhaps you can get some ideas and support from this special group of ladies.
Hopefully I be posting it for you soon.
Keep checking back.

karenann
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  #4  
Unread 06-17-2003, 06:58 AM
endimetrial stromal sarcoma

Hi Lynne,

So sorry about your Mom. Karenanne is right, there is a wonderful support group for women with your Mom's cancer. I know because I am a member of that group! My Cancer is in the family of ESS (a rare varient). Here is the web site;
[email protected]
Feel free to check us out and ask questions, the women (and husbands) are very knowledgable and supportive.

  #5  
Unread 06-17-2003, 02:50 PM
endimetrial stromal sarcoma

Hi Lynne

Lori beat me to it.
[email protected]
My friend said to put Bealine1 on the subject line and she will be looking for you.

karenann

PS Hi Lori!!
  #6  
Unread 06-18-2003, 09:13 AM
endimetrial stromal sarcoma

Hi,

I am so sorry to hear about your mother. There should be a social worker at the hospital that can help to arrange home health care for your mother, so that she could at least be at home. In addition, you may also want to look into getting help from your local hospice- they should either be in the phone book, or the hospital should know how to reach them. At any rate, they are very compassinate people who can help you and your family through a very difficult time.

Jan
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