On 4/1/2008 prm123 wrote:
My mother had a ''cyst'' in 2003 and we tried to get her gynecologist to do a hysterectomy on her at that time. She was72 at the time. 3 years ago May she had a tumor the size of a nurf football and her abdomen was full of smaller cyst. LONG story short. She underwent a 7 hour surgery, since August 2005 been on one or another Chemo Therapy and now she is getting ready to have another 4 or 5 hour surgery to remove tumors from her liver and between her organs and back as well as her gallbladder. This has been a nightmare because doctors just don't seem to know what they are dealing with. Through all this there has never been a PT scan just to see where in the body cancer cells are with this type of cancer. Last year she was sent to MD Anderson Cancer Center in Houston and the treatment they recommended her oncologist wouldn't administer because he knew too many patients that had suffered far worse from that particular chemo treatment.The one thing we did learn however while at MD Anderson is that in 2003 the cyst that was removed was most likely this granuluso cell ovarian cancer and had she had her ovaries removed she wouldn't be where she is today. Don't take one doctor's word or advice, get more than one opinion if you can!
As someone with a 12 year history of GCT, I have some information to add to your experience. No chemo routines have been effective, and many MDs, while they know this from research, continue to suggest horrible concoctions especially BEP. Removing her ovaries prophylactically is no guarantee that the GCT is gone, in fact, removing ovaries removes important signal sites in the hormone axis and makes it even more difficult for the body to regulate homeostasis and hormone activity. GCT is a slow growth cell type, and PET typically do not pick up activity. I have had 2 surgeries, and last year was found to have more tumors, one in the liver. Knowing that surgeries cause spread (there is no way a surgeon can cut into and around tumors without spreading cells, because most of the GCT cells are in a dormant, undetectable, cell cycle stage), I am being treated with chinese herbs through an herbalist/MD from China who specialized in oncology, and have, over the year, found my health to improve considerably, and am not having the cancer symptoms (night sweats, liver pain, etc) of a year ago. It is my hypothesis and experience that MDs' treatment and poor health are the real reason this cancer has such a protracted course.