endometrial stromal sarcoma

Christy,  I hope things are going well with you.  Actually, one of the doctors called my cancer a Mixed Mullerian Tumor with stromal sarcoma overlay also.  However, he was the doctor who gave the 2nd opinion, and my doctor said that they are so much alike that it really didn't matter.  Because mine is so strange, he is calling it an endometrioid stromal sarcoma.  LOw-grade.  None of my chemo has worked.  Neither did the radiation.  In fact, the radiation caused a severe case of scarring on my small intestine and I ended up having another emergency surgery to resect that and also do a bypass.  After three weeks in the hospital I am home but still dealing with the side effects of all the chemo (1. Ifosfamide, Taxetere 2 rounds  2. Cisplatin 1round  3. Gemzar  2 rounds), radiation, and surgery.  I was off treatment for 6 weeks after the radiation, and found my cancer had spread to my lungs and liver during the break.

Please don't be discouraged by this: my cancer is not the norm.  IT is virtually unheard of!  Furbie's Mom

Dear Furbie's Mom,

 I wondered if perhaps you were in the hospital.  I have been thinking of you.  You have had a rough time, but this new treatment is going to WORK!  I am off to church in a little while and will pray specifically for you.  Thanks for the encouragement.  Let me know how you are feeling, both physically and emotionally. 

 Bev

Furbie's Mom,

I was diagnosed with endometrial stromal sarcoma in February 2009, approximately 3 &1/2 years after having a hysterectomy for a very large fibroid tumor which bothered me greatly for 15 years.  I campaigned to two GYN'S for 15 years to rid myself of the discomfort and years of excessive bleeding.  I was not offered a pathology report after my hysterectomy but I have secured one now that my ESS has metastasized to both lungs.  I never smoked a cigarette in my life so it is hard to accept that I have Stage 4 cancer in both lungs.  I had my right lung re-sectioned in March and will have the second one done in late May at the Mayo Clinic.  A Post-Op follow-up at the time of my hysterectomy would have given me a much better shot at a longer period of survival.

It is so difficult to find information about this condition and appropriate treatment.  Maybe researchers know?  Docs don't.

Barbara