Thank you again for this forum. I believe it is increasing awareness and empowering women to be active participants in their care.
I am interested in your opinion about managing malignant endometriosis. I underwent a prophylactic oophorectomy at 46 because I was post-menopausal with a CA125 of 40 and had a persistent cyst on my ovary. It was an endometrioma and all pathology was benign.
After my oophorectomy I was not on postmenopausal hormones, however five months later I developed very unusal symptoms for a post menopausal woman; tender breasts, labial swelling, increased libido. They persisted for one week and resolved. I felt as though my body had been injected with huge doses of hormones ( I am 120 pounds, so no excess estrogen from fat). I knew it was an aberration and discussed it with my gyn.
Eight months later, I had surgery to remove a large maligant pelvic tumor thought to have arisen in an implant of endometriosis . Just adjacent to the tumor was another implant of endometriosis with just enough atypia to be considered a low grade malignancy.
So here is what has been bothering me since my diagnosis 2 1/2 years ago. What if there is more endometriosis? At the time of my surgery, no one was really considering the endometriosis as being the culprit ( thought I had a peritoneal tumor, possibly form an ovarian remnant). I know maligant transformation of endometriosis is rare, however I wonder if there is any evidence to support excising remaining endometriosis with the hope of eliminating recurrence. I have asked this question, and the response I have recieved is that it is unlikely that any endometriosis remains given my post menopausal status. Obviously, that does not easy my mind since I was postmenopausal and still had endometriosis that ultimately transformed. Fianlly, does chemotherapy (Carbo and Taxol) have any effect on endometriosis?
Thanks for all you do.