Granulosa Cell Tumor

[judysuch]

I am 41 years old and had my left ovary removed 2 weeks ago because of multiple cysts.  Everything looked good at the time of the surgery.  However the pathology report indicated a Granulosa Cell Tumor.  I saw the Oncology Gynocologist today but have some questions he couldn't answer.  I have read all GCT responses on your website but I am looking for statistics as to the number of GCT patients that have reoccurences.  Also, after staging when someone has a reoccurence, where can the tumor appear?

Thanks!

[kkejr]

I found a web site that might give you some information. This is just a comment from a the board, not with the staff.

www.bioscience.org/atlases/tumpath/freprod/ovary/9/micro.htm

[Normandee]

My sister had Juvenile Granulosa cell(I am not sure how great the difference is with straight Grandulosa cells though) and has had two reoccurances. The first was in her para aortic lymph node and the second was by her kidneys. So those are two places where the Juvenile Grandulosa cell can reoccure at.

[cinch]

I was diagnosed with granulosa cell tumor in Feb. 2003, stage 1A. Recurrences can happen anytime up to 20+ years, so you must be monitored closely, preferably by a gyn/onc.  What stage was your tumor? - this matters greatly in prognosis. Fortunately, most GST of the ovary are found at an early stage. There is a great organization that was just started last year, which I am a member of - The Granulosa Cell Tumor Foundation. The web site is: www.gctf.org.  It has great info and links. The organization was founded to raise money for GCT research which is lacking because of its rarity. Not much is known about treatment for recurrences, tumor markers, etc. Another good resource is www.ovca.net. Their discussion board has a granulosa cell tumor thread and it has been very helpful to me. Actually, it was a person on this thread who started the GCT Foundation. Hope all this is helpful and good luck!

[judysuch]

Thanks for the information.  I got a lot of good questions to ask my oncologist on my follow up visit.  For the next 3 weeks he wants to schedule tests (CT, barium enema, ultrasound, etc.) to see if it has spread anywhere before he does the next surgery.  On the next surgery he will do a complete hysterectomy and remove lymph nodes.  He has said if this comes back negative, then I only have a 1 in 50 chance it will recur. This appears to be contradictory to what I have read.

I have never been pregnant and took Clomid for infertility for 12 months.  I am curious if others with GCT have similar situations.

Thanks again - Everyone's support helps keep the positive energy flowing!
Judy

[gaile66]

I AM WONDERING WHAT SYMPTOMS YOU HAD. I HAVE HAD MULTIPLE CYST AND HAVE JUST FOUND OUT THAT I HAVE ONE ON MY R OVARY, I HAVE HAD MULTIPLE SYMPTOMATIC ONES, AGAIN ,THAT HAS BEEN FOR 9 MONTHS AND HAS GONE FROM A 3.1CM SIMPLE TO A 4.9 SEPTATED ( COMPLEX ) CYST. I AM HAVING VAG BLEEDING X 6 WEEKS, FREQUENT URINATION, AND BACK AS WELL AS LOWER ABDOMINAL PAIN AND PRESSURE. THINKING THEY SHOULD TAKE OUT CYST AND OVARY. WONDERING IF ANY OF THIS IS SIMILAR TO WHAT YOU WENT THROUGH. I AM CLOSE TO 38 YEARS OLD. YOU CAN EMAIL ME AT ***@**** IF YOU HAVE ANY ADVISE. THANK YOU.

[Helenas4]

I was 50 years old when diagnosed with GCT cancer in June 2001; stage 1A on the right ovary. Ovaries and lymph nodes were removed. Since the cancer was caught early and was contained in the ovary, no chemo or radiation was performed. I was monitored every 3 months. My CA125 blood tests always came back normal, but my inhibin-B levels were always extremely high whenever the disease surfaced again. The blood tests and regular scans are the only means to monitor this cancer at this point. 4 years later, recurrence was evident. The cancer appeared again in the lymph nodes around the lower abdomen, 4 nodes had signs of the disease. Another surgery was performed to remove the tumors, it was diagnosed stage 1A again. Chemo treatment with Bleomycin, Cisplatin and Etoposide was administered with a 3-cycle course. A year after the chemo treatment, recurrence to 1 lymph node appeared on the PetScan, stage 1A. I just completed a chemo treatment with Taxol once every 3 weeks, 6 totally. Every 3 weeks a PetScan was taken to see the progress of the treatment. After the 6th treatment the tumor went from 2.5 cm to 1.2 cm, so I'm starting another course of Taxol again with a total of 5. The plan is to stay on top of the disease at this point, till the chemo kicks in or new medical break through occurs.

My doctor has also found my inhibin-B levels are one of the markers in my blood work that gives us a sign if something suspicious may to occurring; this test is not 100% accurate. Regular PetScans and check ups helps us stay on top of the disease. I have now been diagnosed with chronic cancer till we can get this disease conquered.