endometrial stromal sarcoma

Finally got my second pathology report. This one shows a different type of cancer than the first report - endometrial stromal sarcoma. The first report said leiomyosarcoma. How do you know you're getting the right diagnosis? My initial report was no cancer and they left my ovaries. Now the dr wants to either shut down my ovaries or remove them. All this is making me crazy! I had my abdominal hysterectomy done 2/7 and I am feeling fantastic. The idea of another surgery and being thrown into menopause is devastating. The other option is a shot 1x a month to shut down my ovaries (with a cost of $900 per shot). That option doesn't make a lot of sense to me as I am 42 years old, so the shot thing means a long term deal. Anyone out there dealing with this? I can find very little information about it because it's very rare. Apparently estrogen contributes to the growth of this cancer. So of course, that means no HRT. I can't stand it!

Hi Jewie,



I too have endometrial stromal sarcoma. There are a couple others on this board as well. If you go to the 'our diagnosis'
thread you will see others with this rare cancer, as well as a Yahoo forum where all the members have "ESS". Type in endometrialstromalsarcoma@yahoo and sign in. The ladies on both of these boards will help you through this tough time.
Leiomyosarcoma is closely related to ESS. They sent my pathology off to three labs before they made my final diagnosis.
They say it is very rare, but there seems to be a new crop of us popping up the past couple months.
My TAH/BSO was performed on 12/13/02, just a couple months ago. They found it after my Surgery. Yes, it typically is Estrogen receptive, so your Dr. is correct in advising you to have your ovaries removed. I have the same follow-up, CAT scans every 6 months along with a visit to my Gyn/Onc. They can remove them by laporoscopy, which should be a bit easier.
I know this is all new and scary for you. Talk it out, and E-mail me anytime. You live in Ohio? I am in Virginia.
It is good they found it, and it sounds as if it was contained? That would be ideal.
Lori

s Jewie

Are you being treated by a gyn oncologist? If not, I suggest you gather all your info together and make an appt for a second opinion with a gyn onc. They are the experts.
Also please check out that web site Lori mentions on yahoo. A dear friend in my support group, with ESS, just loves that site. And finds it very helpful.
Now about HRT. There are many of us posting on CC who use no HRT and were thrown into surgical menopause. It may not be as bad as you are anticipating. It seems like when it is not an option, we often tolerate menopause fairly well.
Best wishes to you.

karenann

Hey Jewie

:

I'm off to the castle today for radical TAH +/- removal of both ovaries and staging for suspected ESS. There has been a real rash of this on this site just the last couple of months. I too have recently subscribed to the yahoo group that Lori has described http://www.groups.yahoo.com/group/En...stromalsarcoma you will find the ladies there (some husbands too) very supportive and informative. They will be a big help to you as they have to me. Unfortunately, I will be offline for at least a week or I'd suggest you email me. Feel free to do this after that time, other than that, Lori is a great help, pick her brain to bits. Lori - I hope you don't mind.

Good luck, above all, keep positive they sound like they got it all, but the ovaries need to go! - there is plenty of information out there,from women who are experiencing this firsthand,about how to cope with the menopausal symptoms.

big s from OZ

Lena

:

I don''t mind one bit!
lori