Ovarian Cancer

[nelliepud]

My sister was told a year and a half ago that she had irritable bowel syndrome. This got worse and 2 months ago she was told she was pregnant. It turned out to be a malignant sertoli leydig tumor which is a form of ovarian cancer her is unusaul in that it was outside the ovary. I wonder if anyone else has experience of this. She has been told that the lymph node they removed was cancerous but they left the uterus and ovaries??????????? they now face the prospect of going back in to remove the pelvic organs and the omentum etc. They wont give us a stage until the hysterectomy but i read that if it was in the lymph tissue it had to be stage 3 or 4. Can anyone help?

[PatsyLouise]

I'm sorry about your sister. My youngest sister was diagnosed with a Sertoli-Leydig tumor about five years ago. She had terrible stomach pains and was given an MRI and then told it was an ovarian cyst. After an operation to remove a 5 pound cyst, a biopsy was done. It turned out to be Sertoli-Leydig. No one had seen this type of cancer and our city did not have a gynocological oncologist. Our regular oncologist gave my sister two years at best, but worked with a Dr. Dresher at Swedish Hospital in Seattle who had treated patients with this type of cancer. He recommended that she undergo chemotherapy treatments to prevent the spread of the cancer cells. After a full summer of treatment, my sister then went to Swedish Hospital and had a full hysterectomy. Throughout this period of time, we wanted to know as much as possible about this typed of cancer and whether there were patients who had survived. Dr. Dresher (Dreshner?) said "Yes"! He had patients who had survived. That was the best news to us. At this time, five years has passed and my sister is doing very well. She is now tested for cancer about every six months and the tests are in the normal range.
At one point during this ordeal, I called the Anderson Cancer Center in Houston to find out what the prognosis was for this type of cancer. They had only had about 50 total cases since keeping records from 1945. That averaged out to about one per year. That's why we don't hear anything about this cancer. It is so rare.
If your sister's oncologist doesn't have experience dealing with this type of cancer, I would definitely recommend Dr. Dresher. I can't remember if there is an "n" in his name or not. He has treated patients with this type of cancer and might be a good resource.
I know every case is different, but the one thing we all want to hear is that a cancer has been survivable somewhere by someone. It was the one thing we wanted to hear, but didn't until we got to Seattle. That gave us the hope that we desperately needed.
Please don't give up. Your sister will need all the love, support, and hope that you can give to her. Just knowing that someone has survived when given a terrible diagnosis can make a difference.
I hope this has helped. I'll be thinking of you.