I am 62 years old. In 1994 I had a hysterectomy, oopherectomy, appendectomy after having uncontrollable bleeding for a year. The doctors told me it was fibroids in my uterus causing it. When they did the surgery they found a tumor on my ovary. I was told it was Brenner tumor and benign. I went on HRT. In 2002, while travelling abroad, I had severe abdominal pain for several days. A doctor in England told me I had an abdominal mass. I flew home and had every test they could think of. Blood tests for cancer showed nothing. 5 days later I had surgery to remove a large abdominal mass adherred to but not attached to my liver. It was a granulosa cell tumor. We went back to the pathology report from 1994 and found that the pathologist had correctly identified the ovarian tumor as a granulosa cell tumor but the doctor had given me the wrong diagnosis.
I was sent to the head of oncology/gynecology at one of the leading hospitals in our area. They wanted to do chemo. After reading the possible list of side effects and hearing that the success rates were so low I choose not to do it. My doctor then suggested th drug Leupron. There was as they called it "anecdotal" evidence that it might have a positive effect. I was on Leupron for 4 months with no adverse effects. For the three following years we watched a very tiny spot in my pelvis (catscans and petscans) which did not seem to do anything. Then in November 2005 it increased in size enough that we did an exploratory surgery. My doctor removed it and 4 other small growths that seemed odd to her including one on my omentum. All tested positive for granulosa cell tumors. I moved shortly after the surgery and started with a new specialist in Chicago. In February of 2006 we found (catscan) a "new" tumor in my pelvis that was 2cm x 2 cm. I insisted on a biopsy because it was at the site where one had been removed and I hoped it was scar tissue. It was granulosa cell tumor. I agreed to chemo. In April 2006 I had my first chemo treatment, had an immediate anaphylatic reaction and called it off. In June, at my request, my doctor removed the tumor. It had taken over a lymph node. In October 2006 the tumor was back in the same place in my pelvis. In January 2007, my friend reminded me that Leupron had seemed to hold it at bay before. I asked my doctor to try it. I was on Leupron for nine months ended last September. We are watching the tumor. It has grown very little since the leupron and seems to have changed somewhat and may have encapsulated or be liquifying.
(By the way, my tumors have never shown up on a petscan. These are slow growing and petscans only measure fast growing and therefore fast absorbing (since we are talking radioactive sugars) tumors. My inhibin levels have always remained normal and ca125 tests are negative. Most blood tests also are looking for fast growing tumors. That is why this disease is so elusive.
My doctor and I do not know what the tumor is doing. We continue to monitor with catscans. Leupron is a drug that will put you in menapause. At my age it doesn't matter. For younger women it does. Leupron is approved for treatment of ovarian cancers in Canada but not in the US. It's most common use is for testicular cancer.
I have thoughts on Granulosa Cell Tumors. There is no medical evidence for these thoughts only what I feel I have discovered through this process. One - asked my doctor when he has seen these escalate before or after chemo. (as both doctors told me these could escalate quickly at any time). He thought about it and replied that in his experience it was after the tumors had become resistant to chemo.
Two-I feel that my tumors are all still origingating from microscopic parts of the original that broke off during surgery. It is almost impossible for the surgeons to get absolutely everything unless these are encapsulated. Some chemo treatments cause cancers to mutate to something else that is untreatable. I do not want that to happen here.
Three - The success rate for chemo treatments is not good. The side effects can be devastating. There are side effects from the leupron but for someone in menapause they are minor. I have never taken the leupron with any other medication. I take no other medications.
Four- 2% of ovarian tumors are said to be granulosa cell tumors but another study I read said only 10% of those go malignant. There is very little information on these - try to get a doctor who has at least seen some of these in the past so he/she knows what they are dealing with.
The last thing to tell you is that I am under the care of a wellness doctor. At her suggestion and because of some testing she did I do not eat gluten, sugar or milk products. These showed up not as allergies but as things I have problems with. I eat a very healthy diet with lots of green veggies and fruits. I do everything I can to keep my immune system healthy. I feel my body does as much to fight these cancers as any medicine and I will give it all the help I can get.
I wish you all the good fortune possible. I truly believe that traditional/alternative medicines can play a huge part in fighting cancer. You are right to go with your traditional medicines also. I hope this is of some help to you. I have been lucky to find doctors who will cooperate with me and are as interested in trying something different as I am. If your doctor refuses to do what you want, find another one. It is your health not theirs and you should be in charge of it. Also, read all your reports and keep copies of them. If I had read the biopsy report myself in 1994 I would have caught the doctor's mistake.