New to a diagnosis of granulosa cell tumor, and more than a little worried...

[teebow]

Hello. I find myself on a new site this morning after spending some time looking for information on granulosa cell tumor, which I was recently diagnosed as having. I'm 51, just had a hysterectomy and bilateral ovary and tube removal, and was just advised to follow that up with robotic removal of my remaining pelvic and some para-aortic lymph nodes, which is scheduled in 3 weeks. I'm also having my peritoneum over my right ovary removed. Anyway, as I said, during a sleepless night I started researching and found myself on this site, hoping to hear other experiences relating to what I'm going through at the moment and looking for some insight on what to expect. Looking forward to meeting some new people and maybe both getting and giving some support along the way!

[DSK-C SHARE Volunteer]

Do you have a gynecologic oncologist performing your second surgery? This is very important. This is a difficult period when you don't have a plan of a action. Once you start treatment, difficult as it may be, you will be more settled. I don't have any specific information or experience with granulosa cell tumors. Good luck with your second surgery, but make sure you see a gynecologic oncologist.

[teebow in reply to DSK-C]

Yes, I had a gyn-onc for the first surgery and now for this one, which will be about 5 weeks apart. Thank you for your reply!

[Anne-2]

Hi!

I was diagnosed with a GCT about 5 years ago and apart from the major surgery had no other treatment and seem to be fine. Good luck with your surgery!

Regards

Anne

[teebow in reply to Anne-2]

Thank you, Anne! I hope and pray for your continued good health!

[Supernurse]

So....I had something like this Aug 19th. but they opted out on further surgery for staging....I want to understand why they are doing yours and not mine? now I'm scared

I am getting iv Carboplatin and paclitaxol every 21 days next Thursday is round 4....but they decided because my CT didn't show any further gross disease that my lymph nodes won't be taken now....

[teebow in reply to Supernurse]

Hi Supernurse! I notice in some of these discussions that there is a wide variance in how the cancer is approached. My doctor says that if the pelvic and lymph nodes are positive, he will use hormonal therapies because chemo is not terribly effective for GCT. If the nodes are negative, he won't treat at all...just monitor. Are you being treated at an academic medical center?

[Supernurse]

Oh....my right ovary and a 15 cm cyst/tumor removed

Epithelial type: adenocarcinoma Endometroid subtype

All other pathology from hysterectomy and partial omenectomy negative for disease

CA125 was 57 pre op

However my abdominal washings were positive and my nodes were not removed....AND it was not done by an oncologist surgeon....I feel like I have been screwed because of this. I am now being followed by oncology of course.

My CA125 pre chemo post surgery 14

[teebow in reply to Supernurse]

I understand your concerns! Our tumors were roughly the same size, but not the same type. I think that's why our treatment strategies differ. I didn't find evidence of washings on my path report, and I don't like that, but since my second surgery is Tuesday (robotic pelvic and para-aortic node removal, partial removal of my peritoneum because my ovary adhered to the sidewall), I'll ask about washings then. My pre-op CA-125 was 78. I haven't had a repeat yet. Since you're a nurse too, I wondered if you've researched turmeric. If you haven't, take a look sometime and let me know what you think. Look at Google Scholar.