CancerCompass message board discussion started by Patti 123 on 4/15/2008 http://www.cancercompass.com/message-board/message/all,23086,0.htm Fri, 04 Jul 2008 00:00:00 GMT Fri, 04 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi,I am new to this website and message board.  I was very happy to stumble upon this website when I was researching Granulosa Cell Tumors.  It is very hard to find information about them and it was good to read other peoples experiences with it.I am 50 years old and about a month ago after having an ultrasound done because of abnormal bleeding I was told I had a 12 CM worriesome mass on my ovary. I met with a GYN Oncologists who advised me that  I have a total Hysterectomy.  I had surgery about 3wks ago and they removed the tumor, uterus, ovary's, fallopian tubes cervix and surrounding Lymph Nodes.  The Pathology report came back showing I had a Granulosa Cell Tumor (a very rare form of Ovarian Cancer)  It was cancerous but luckily had not spread. It did rupture during removal so they classified it as a stage 1C.  My Oncologists feels there is no need for Chemo.  He says this is such a rare Cancer that there are not a lot of studies that show if Chemo helps or not.  He is going to monitor me with regular blood tests for Inhibin levels and CT scans for the next 5yrs.  I am releived I do not have to have Chemo but I can not shake the scared worrisome feeling that it could come back.  It shakes me up that I actually had Cancer. I guess emotionally it is hard to except.  It scared me to read the emails from people who had it come back.  Anyway I am going to be checking in on this site often for more information.Thank you! PattiAny input from anyone would be great. Patti 123 Tue, 15 Apr 2008 00:00:00 GMT  On 4/15/2008 Patti 123 wrote:Hi,I am new to this website and message board.  I was very happy to stumble upon this website when I was researching Granulosa Cell Tumors.  It is very hard to find information about them and it was good to read other peoples experiences with it.I am 50 years old and about a month ago after having an ultrasound done because of abnormal bleeding I was told I had a 12 CM worriesome mass on my ovary. I met with a GYN Oncologists who advised me that  I have a total Hysterectomy.  I had surgery about 3wks ago and they removed the tumor, uterus, ovary's, fallopian tubes cervix and surrounding Lymph Nodes.  The Pathology report came back showing I had a Granulosa Cell Tumor (a very rare form of Ovarian Cancer)  It was cancerous but luckily had not spread. It did rupture during removal so they classified it as a stage 1C.  My Oncologists feels there is no need for Chemo.  He says this is such a rare Cancer that there are not a lot of studies that show if Chemo helps or not.  He is going to monitor me with regular blood tests for Inhibin levels and CT scans for the next 5yrs.  I am releived I do not have to have Chemo but I can not shake the scared worrisome feeling that it could come back.  It shakes me up that I actually had Cancer. I guess emotionally it is hard to except.  It scared me to read the emails from people who had it come back.  Anyway I am going to be checking in on this site often for more information.Thank you! PattiAny input from anyone would be great. Patti,Like you I had Granulosa Cell Tumor also.  I went to the ER in Nov 2005 with excruciating pain... they thought kidney stone and sent me home.  The next day the pain got worse again, and they rushed me into surgery.  A week or two later I was told I had a very rare, but treatable form of Ovarian Cancer.  Awful news.  Soon after I met with a gyn oncology surgeon who removed uterus, ovaires, tubes, cervix, etc.  Becasue my tumor had ruptured they classified me as stage 2B.  I was told that chemo is not usually recommended for GCT upon initial diagnosis.  This cancer can have a "long life", meaning it can recur soon or many years from now.  The good thing is that it typically recurs back in the abdomen or pelvic area, and that it very rarely spreads to other areas.  My understanding is that protocol states you have the complete hysterectomy, period.  Chemo is usually only recommended if it recurs.  I opted to have chemo anyway... I obviously didn't want to go through all of that, but I was afraid not to.  But again, it is not recommended.  My Onclogist did contact MD Anderson and Memorial Sloan Kettering (2 prominent cancer centers)... they both said chemo is not recommended for initial occurence. Like you, for 5 years from surgery I will have my Inhibin A & B levels checked every 6 months and annually I have an abdominal and pelvic CT scan.  I did just send out a message to make sure this is all I need to do, but from my research, I believe it is, but I want to be sure!!!I am almost 48 years old, with 2 young children.  I lost my first husband to a very rare cancer... I was 28 he was 29, we had only been married a year.  I lost my Mom to cancer at a young age... 2 close uncles... I intend to be the family member that lives through this drama!  :)  But I intend to do it with a sense of humor, being smart, but not crazy, lots of prayers, and periodically check in with different sources to see if I am still "on track". Hang in there... eventually every bump or pain or ache will NOT automatically trigger your brain to think Oh no is "it" back!  It gets easier to live with, and our type of Ovarian is truly so treatable.  The epithelial ovarian cancer is the common ovarian, and is much more aggressive.  If we have to have ovarian cancer, this is a much better one to have.  Feel free to talk more...  Pam Pam08 Sun, 18 May 2008 00:00:00 GMT