I was very happy to find this forum as this is the first time I've heard of anyone who has the same type of tumor. I only learned this week that this is a type of ovarian cancer and I've had this disease for 11 years!
My first experience (which sounds like so many others) was with a rather sudden, pretty excruciating, abdominal pain that eased up after a few hours. My OB/GYN told me it was a ruptured ovarian cyst. Nothing more was done. Then over the course of the next couple of years this happened at least 2 more times and each time getting much worse - pain lasting longer, not able to stand up for the dizziness and taking several days to ease up. It must have been the 3rd time that the pain would not go away and radiated all over my abdoment. I was sent for an abdominal ultrasound and first heard that word, "Mass". Pretty scarey! So surgery was less than a week later - total abdominal hysterectomy and bilateral oopherectomy and general clean up from the ruptured cystic tumor. I was floored 10 days later when I was told that the histology was questionable for small cell cancer or granulosa cell cancer so it was sent to Cambridge for a 2nd opinion. The verdict came back granulosa cell and I breathed a big sigh of relief and merrily went on my way. When I came back for follow-up I was told the tumor can come back and that there was a blood test that could track it...very expensive but I was advised to get it done at least every 6 months.
Shortly after this we discovered my husband had end stage liver disease due to Hep C and we had to uproot, return to the US and start the process of being evaluated for liver transplant. Needless to say, with all the ups and downs with that process, my own health concerns not only took a back burner but were shoved out of the kitchen entirely!! Then came an episode....maybe 6 months after his transplant...when again I had this funny, escalating abdominal pain - this time more epigastric in region - and I had NO clue what it could be. I left work and barely made it to an Urgent Care facility....where they happily decided that it must be a kidney stone! They did no testing to confirm or deny this. A month later I went to my GP and mentioned the episode and my concerns and she ordered a CT of the abdomen (without contrast) that showed nothing!
A year later I finally decided to repeat my blood test for Serum Inhibin A and it was up! My doctor now wanted an urgent CT - with and without contrast - and there was the grapefruit sized tumor! The radiologist went so far as to say that comparing it to the previous year, they could see the tumor was present then!! At this point I was linked up with a wonderful Gyne Oncologist who did my surgery, (five years after my previous surgery) removing multiple tumors and about 5 inches of my colon. This doctor insisted on compliance with quarterly blood tests of both the Inhibin A and B.
I have just returned from having my 3rd surgery - this about 5 years after the previous in 2006. This time there was new technology - the Da Vinci system - so she was able to do the surgery robotically and was able to spot and remove tumors that were smaller that what she would have been able to see with the naked eye. The recovery is going much better than the open surgery and I was back to work less than 3 weeks after surgery (although I would NOT recommend that to others - would wait at least 4 weeks!)
We are continuing on the conservative treatment - monitoring the Serum Inhibins A & B every 3 months and I personally am following the alkalizing diet, no meat, no dairy and looking into the wheat grass thing. Being a nurse, a patient and former researcher...I am determined that we, as a group, can help find....if not a total cure..then at least a way to stave off these recurrences for as long as possible!