Diagnosed with granulosa cell (GCT) ovarian cancer

Hi, I just sow this post. I am GCT, stage 1c2 , tumor size gross 6cm, did not go to chemo as it was not recommended from Sloan NYC or Anderson TX.I was diagnosed 7 months ago and my inhibin b level was <10 after 1 month...I did not check before that. Prior surgery was very high,1500. How it went?
claire

Has anyone had surgery for an ovarian Granulosa Cell Tumor?

What was the final outcome of your GCT treatment?

What is your current status? How often do you do follow-up inhibin tests?

Welcome @imr. I believe that both @tamcbart and @cpl have had surgery for GCT and can share their experiences.

IMR, can you share a bit more about you? Is this a new diagnosis for you? Has surgery been recommended?

Hi,
I had surgery two weeks ago. Figo 1a
No chemo recommended as no metastases was found, however will have surveillance testing done twice a year to keep an eye on inhibin and CA125. Followup is next week and I have tons of questions for my gyn/oncologist. She is amazing and had to remove the tumor from three blood vessels that it had wrapped itself around. (I was in surgery over 5 hrs.) I am still very sore — feel bruised and wearing a bra is complete misery. If anyone has alternative suggestions, please share.
I’m happy to discuss with anyone here. Also, my surgery was done at a small teaching hospital in VA, not one of the larger hospital systems.

Hi @sophiaphilia, I thought I'd check in. How did your followup appointment go after surgery? How is recovery going?

Hi @sophiaphilia!
I’m not sure if you still get on here but I have just started my journey and am late night researching. I just had complete hysterectomy and removal of FIGO stage IIB 11cm Adult GCT. To start, I did not have a period for almost two years prior, and was told I was going through menopause. I actually only found out about my tumor from an mri of the hip. I then ironically had the increased pelvic pain after it ruptured and really had no time for decisions as I had found out the day before I had cancer or the possibility. Just received my pathology back and it looks like it spread to the rectum but they removed everything. My CA125 was a 5.6 prior to surgery, inhibin B was 2400 (a little higher) and my AMH was 46 I believe. At this point they aren’t recommending chemo or radiation. Have you read or heard anything different? I hope you are still cancer free and have received the answers you were looking for!!

Last week! I would love to join in on anyone who has guidance or updates with AGCT and the post surgery treatment

I had a similar circumstance to you all 7 years ago. As I was told by University of Kansas Cancer Center and a second opinion at the Mayo Clinic that my full hysterectomy and removal of multiple lymph nodes was successful. Chemo was not recommended for me and I was told to stay away from hormone therapies. Recovery was only for the surgery. I felt positive and good. However, granulosa cell is aggressive and has a high rate of return somewhere, sometime - but in a majority of cases, I was told and read, it is within 5 years. I was watched and tested 2x per year with blood draws for Inhibin A and B. Passed 5 years with flying colors and went to an annual exam and blood draw - with the year 7the year blood draw, my inhibin A came back with high 800's and inhibin b was less than 10. Took a second blood draw a 5 days later and inhibin A was now 37 points higher, but no change in inhibin b. Did a pelvic CT scan and results came back without any concerns. On Monday I will have a "thigh to eye" PET & CT scan and also have an MRI scheduled for early September. I feel great, no pains or issues. Should be an interesting story. I do feel my care team and KU is doing all they can. I am researching for the "just in case" nothing is showing on the various scans, for other methods of determining what is causing Inhibin A to rise.