18 Yr Granulosa Cell Tumor (Gct) Survivor

I am currently in my 3rd occurence after 18yrs fighting this disease. I've had the same conditions: 1st was an ovarian cyst that ruptured, requiring 3 surgeries including a radical hys. 12 yrs later, spread to the pancreas, 3 more surgeries and standard ovarian chemo (cisplatin, etoposide, bleomycin). This protocol is usually recommended for recurrences and advanced stage cancers and is reported to improve survivability of 50-65% (depending on source). After 5 yrs cancer free, I was diagnosed with 3rd occurence last month. Am recovering from bowel resection and debulking to remove tumors. Because granulosa (GCT) is slow growing, its sleeper cells remain dormant, unaffected by chemo designed to kill fast growing cells.

I am on the board of the Ovarian Cancer National Alliance (www.ovariancancer.org), an organization of ovarian canceer survivors. Because there are so few of us w/ GCT, I am hoping to bring some focus to our situation. There are only 1500-2000 women diagnosed with GCT in the US annually. We're but a footnote on the ovarian cancer page.We must help each other until we can get on the radar screen for trials, treatments and options. We represent women on national panels and boards and I would gladly share info or resources. Please keep participating in this dialog.

Thank you Annette for your message! I was so glad to finally find someone else who knows a bit about this type of cancer. I have been in remission almost a year now since my second occurrence, which happened eleven years after I was first diagnosed with GCT. I also took the same regiment of chemo after 12 nodules were found in my lungs. I have been told I will pretty much have to fight this disease for the rest of my life. I have been pretty discouraged at how little information I've been able to find about this particular type of ovarian cancer. In the beginning, when I had my hysterectomy, my gynecologist at the time, led me to believe I was home free. He told me that the surgery removed all the cancer and it would be rare for it to reoccur. I was shocked when I suffered a recurrence two years ago. I would just like for everyone that is diagnosed with this disease to be more aware of what is going on with their bodies and concentrate on a healthy diet and lifestyle. I almost waited too long to see a doctor with my symptons the second time....shortness of breath, extreme fatigue, and weight gain. I just attributed it to my stressful job and being out of shape.
Thank you again for your message and I will go to the website you suggested.

I just found your message. I just went through my 4th re-occurrence since and surgeries in 10 years. I have never been remission. This journey has been difficult especially the last surgery where I developed pneumonia and my kidneys shut down. People look at me and think no way she has cancer, she's fat. Some ridicule me. None believe I am sick or have cancer. After all, you only hear that cancer makes you have a drastic weight loss not gain due to quantity of tumors, size of tumors of excess fluid in your system. Getting the word out would be good but who in the big news media will listen. The pharmacy companies only care about the common diseases that will bring in the big bucks. I can't even get insurance and I owe the hospital hundreds of thousands of dollars and all I can expect is in two years I'll need help again.