I will second the urging to get a gynecological oncologist if you are having surgery - and I also agree with getting a second opinion. Obviously if there is a chance that you have cancer you want to do whatever is needed to find out for sure (and remove anything that may be cancerous). But CA-125 can be elevated for many reasons and if you don't have cancer that doesn't mean they should remove a lot of healthy organs just because they're in there doing surgery.
I had a pretty large mass on my left ovary and just had it surgically removed - I'm 38 but don't plan on having children and initially my GYN was suggesting we remove the uterus and both ovaries while we were in there - just so they won't "cause trouble" later. I did a lot of research and for somebody pre-menopausal there are some real risks to removing healthy ovaries - especially if you don't get on Hormone Replacement Therapy. Happily after more conversation with my doctor I had the mass removed (no cancer!) and still have all my organs - so while it was scary (never had surgery before) it all worked out well.
I'm not saying that it's always the right decision to keep all your organs, but I do encourage you to learn as much as you can and make an informed decision! This site has a lot of hysterectomy info: http://www.hystersisters.com/
Hi Carrie.
I am so sorry you are going through this stressful experience. I myself had cancer, so I can't tell you about having had an elevated CA-125 without cancer.
However, two thoughts come to mind. One is that you should have any surgery done by a gynecologic oncologist, NOT a gynecologist. Gynecologic oncologists are surgeons trained in both gynecology and oncology, and if there is even the slightest chance that it is cancer, a gynecologic oncologist should do your surgery.
Secondly, before having a hysterectomy I would talk to another doctor and get a second opinion. Perhaps that doctor should be a gynecologic oncologist. If fibroids are your main problem and the cysts are not malignant, then there are other, less drastic options for dealing with fibroids.