by mamimo on Mon Jan 16, 2012 01:27 AM
by ksargent on Mon Jan 16, 2012 07:01 PM
I too have this same tumor, I too was diagnosed in early Dec. 2011. I had the tumor removed on December 22nd but I still haven't gotten my pathology report back. I think its because we live in a pretty rural area and they had to send it off and even where they sent it isn't that large of a hospital. I have tried and tried to do research on it but an unsuccessful. I would love to hear how things end up with you and what they decide your treatment should be. We have considered traveling to a bigger area but haven't completely made the decision.
by mamimo on Tue Jan 17, 2012 06:15 AM
by ksargent on Tue Jan 17, 2012 07:24 PM
The only thing they have told me so far is that they do 5 stains total, the first stain came back as they expected but the following 4 did not, they forwarded the slides to a special pathologist in a local city. He also told me that the washings they did during surgery also came back with something in them but he wouldn't get into that with me yet either. He said that he removed the tumor in the ovary intact so hopefully that is a good sign. After this last surgery where they removed both ovaries and tubes I have nothing left that way for them to go in to remove because I had my uterus and cervix removed 10 years ago. They attempted to do this surgery laprascropically but was unable to because of the severe amount of scar tissue that I had from the first surgery. As far as I know in the tons of blood tests that they did before surgery they never did a CA 125 or Ova-1 but I could not tell you for sure but it sounds like it doesn't matter with these tumors. I had been going to many different doctors for almost 7 years trying to find out what was causing some ongoing symptoms finally one of them tested my testosterone level and it came back at 396. Its hard for me to believe now that it took one simple blood test to lead them in the right direction but it took doctors in 3 different states over 7 years to run that test! Considering now I know that I had all the symptoms of this tumor it actually makes me really angry! After that is when everything started moving very quickly, they sent me to a hormone specialist then to a gyn surgeon and I was in surgery about 10 days later. Considering how rare it is and because we live in such a rural area I would really be interested in what you think of MSKCC and your specific doctor since he has some knowledge of what he is doing. I am considering finding someone else for another opinion and so far you are the only person I have heard of that knows a doctor with any knowledge of this and I am not against traveling! I appreciate your time and its comforting finding someone else who is dealing with the same things I am. I REALLY hope that they don't find anything when they do your next scan, good luck and you too are in my thoughts!
by mamimo on Wed Jan 18, 2012 03:54 AM
by mamimo on Wed Jan 18, 2012 04:12 AM
by ksargent on Wed Jan 18, 2012 04:57 AM
Good to know! In a weeks time they did so many blood tests and I tried to keep track of everything but I know I missed some, they took off some 30 vials in a matter of 3 days. At times I almost feel like my Dr. is purposely keeping me in the dark about things...guess I need to be a little more pushy!
by ksargent on Wed Jan 18, 2012 05:01 AM
Also, thanks for the name of the pathologist that yours was sent to, I believe that I will be making a call tomorrow and requesting that they send it there for a consult! I want true and accurate answers not just a guess because they have never seen it.
by mamimo on Fri Jan 20, 2012 07:54 PM
by ksargent on Fri Jan 20, 2012 08:09 PM
I still haven't heard anything unfortunately. I really hope that your surgery goes well, do you know when you will have to have it done yet? I would agree with you, if traveling is not going to add benefits to your progression then there is no point in it, stay where you are close to home and you don't have the added expense and stress. The DR I have here is a very experienced surgeon but like most others he had never seen one until now, I don't think the pathologist it was first sent to had either thats why the sent it away but that doesn't seem to be doing us much good. I really hope that your surgery is successful and that you are able to do chemo without to much illness added. Definately keep me updated on how you are doing! Thanks for all your time here!
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