Granulosa cell Tumor

my 1st surgery was in 1995 (ruptured GCT) (stage 1C)18 months later I had a re occurance and more surgery, I then had Ultasounds and CA125 every 3-6 months, in 1998 a ultrasound showed a small mass in pelvic, and cyst/mass on right lobe of liver, surgery revealed nothing of concern but I had a total hysterectomy done. 2 MRI in 1998 and 1999 continued to show the are on the liver  as no concern and it was diaganosed as an hemagomia. when my gyn retired I had difficulty finding another gyn with an interrest in my history of GCT, one follow vist to a gyn/onc is @ 2003, I was told that I coukd consider myself "cured", Even though I knew it should haved follow up I could not find any one to mange my care, so I let myself beleive all was OK. Last month I felt a mass in th abdomin, found a gyn/onc,had inhibian levels done (they were elvated) CT revels 9.5 cm mass in abdomin and cystic/mass lession on the liver. I was able to forward new CT scan to surgeon that was present in 1998  to get his opinion on the liver, tomorrow I go to gyn/onc for consult for next step. I know surgey is in my future and am very concerned about what I will find out about the liver. Sure wish I had been more pro active with my follow up care. wo knows how ling this re occurance has been lurking, hopefully it has not advanced.

Does any one have  a name of gyn/onc in the NJ,NY,PA area with experience with GCT?

Would love to hear thoughts on chemo, all I read makes me hesitate because of the slow progression it seems that it is unclear if chemo has any benefits

Thanks

I too have had a TAHBSO for GCT of the ovary. I was classified as a 1A, the nodes were clean, it was contained in one ovary.  I go every 4 months to see the physician who did the surgery. I will see him until 2015. The window for any type of ovarian cancer is 8 years without reoccurance.

I have Inhibin B levels drawn everytime I go to the doctor. Every year I have to have a CT scan, or sooner if my levels raise. THey raised once but it was determined to be a fluke. My docotor too told me the surgery was the cure.  He said chemo does not work because this cancer grows very slow.  Surgery is the only option. I can give you his name, and phone number in a pvt reply, he has alot of GCT patients. 

 Please let me know if your interested, however he is in NW Ohio. For several years he has been the OB/GYN oncologist of the year on a national level.  If coming to see him isnt possible, perhaps the office can direct you to someone in your area. Let me know. My thoughts and prayers are with you.

On 3/19/2009 noway wrote:

my 1st surgery was in 1995 (ruptured GCT) (stage 1C)18 months later I had a re occurance and more surgery, I then had Ultasounds and CA125 every 3-6 months, in 1998 a ultrasound showed a small mass in pelvic, and cyst/mass on right lobe of liver, surgery revealed nothing of concern but I had a total hysterectomy done. 2 MRI in 1998 and 1999 continued to show the are on the liver  as no concern and it was diaganosed as an hemagomia. when my gyn retired I had difficulty finding another gyn with an interrest in my history of GCT, one follow vist to a gyn/onc is @ 2003, I was told that I coukd consider myself "cured", Even though I knew it should haved follow up I could not find any one to mange my care, so I let myself beleive all was OK. Last month I felt a mass in th abdomin, found a gyn/onc,had inhibian levels done (they were elvated) CT revels 9.5 cm mass in abdomin and cystic/mass lession on the liver. I was able to forward new CT scan to surgeon that was present in 1998  to get his opinion on the liver, tomorrow I go to gyn/onc for consult for next step. I know surgey is in my future and am very concerned about what I will find out about the liver. Sure wish I had been more pro active with my follow up care. wo knows how ling this re occurance has been lurking, hopefully it has not advanced.

Does any one have  a name of gyn/onc in the NJ,NY,PA area with experience with GCT?

Would love to hear thoughts on chemo, all I read makes me hesitate because of the slow progression it seems that it is unclear if chemo has any benefits

Thanks