I am 60 year old just diagnosed with GCT. CA-125 within normal range, Inhibin B very high at 143. My gyn is proposing removal of ovaries and fallopian tubes only. CT abd/pelvis with contrast has been ordered for next week. Any advise would be appreciated.
Once your doctor gets in there, he/she should be able to tell if the cancer has spread. They will debulk, meaning take samples from areas closeby to test for cancer before they close you up. Anything that comes back positive will be removed. It sounds as if your doctor does not suspect it has spread, therefore is proposing to only remove your ovaries. GCT can be treated this way without fear of spreading. But if you are not comfortable, talk to your doctor about the possibility of removing more. Your gut instinct and peace of mind is a big part of the process!
Is your gyn an onc/gyn? It is better to have an onc/gyn. I have GCT also and was just diagnosed in Oct. What is really, really important here is that the ovaries are removed INTACT! If the CT scan is clear, please make sure the ovaries are not ruptured upon removal. This causes seedlings to spread. I was lucky my ovaries were not ruptured and I am a stage 1a after staging surgery. I did not need chemo. There is a lot of follow ups but I can handle that!
If you have any other questions ask :-)
I would tell the dr in the nicest way that you have done a lot of research on GCT and it seems paramount that when the ovary is removed that it is not ruptured or cut into or it can/will seed. Then ask him how the surgery be done that it is taken whole.
I had a LAVH which means laparoscopically and vaginally. I had 3 small incisions that the instruments are inserted in and everything removed was taken vaginally.
I was diagnosed at stage 1 a after another surgery for staging since we did not know I had a tumor in my ovary. It was very small at 1.5 cm. A 1a is a tumor on one ovary that has not been compromised and biopsies have been negative. If the ovary is ruptured it will be staged at a 1c.
I personally would have everything removed. GCT can return to the uterus, cervix, etc. Is your dr taking biopsies of the omentum and washings?
I feel strongly about this because I had to have a second surgery 7 weeks later to find out that mine had not spread.
I see your Ct scan was negative. That is very good news. Mine was also. Your marker must be inhibin B. CA-125 is not reliable for GCT.
Good luck at the Dr and keep me posted. If you have more questions just ask :-)
Pam, thanks for all your good input. Glad you are doing well, If you feel like it I would love to hear your whole story. And by the way, did you know your profile has you as a male! I'll let you know how things progress here.
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