Hi Annette1,
You mentioned that as a board member of the Ovarian Cancer National Alliance you are looking to be in contact with other GCT women for their experiences. I had a radical hysterectomy last Jan 14 05. They knew before they went in that I had early cancer in the uterus, and that according to the ultrasound I had a growth on an ovary. They took everything and during the laparoscopic surgery, the affected ovary which was also stuck to the bowel, ruptured. It was found to have a GCT which they staged as 2C due to the sticking and rupturing. The abdominal washings were negative. They did not remove the omentum to my consternation. There were a lot a adhesions. CT scan 3 months later showed numerous unidentified specks and streaks. Another CT scan done a month later for comparison showed nothing of the former areas of concern. Inhibin B test was 5.5, CA125 test was 6. No chemo or any further treatment was recommended at that time since the second CT showed no concerns.
That is where I am at this point. I am due for another visit to the gyn/onc specialist next month. I too am terrified of recurrance. I keep picturing my other organs as hosts to the little cells wandering around in there from the rupture.
I have been taking a lot of antioxidant supplements, carrot juice, essiac tea and have radically changed my diet. I am eating almost no meat, soy or dairy (I was a HIGH dairy and soy eater) and am aiming toward a "high percentage" raw vegan diet. As we know, the Granulosa Cell Tumor originates in the layer of cells of the ovary that produce the hormones. That is why I had the occurance in the uterus, with all the hormones being produced in floods by the tumor-it caused the beginning of what happened in the uterus. That is why I am so worried about the hormones in animal foods and the hormone effect of soy. I want to get full benefit from not only the antioxidant properties of the fruits and vegetables I eat and if they are largely raw, I hope to benefit from the live enzymes. I don't know if all this is quackery or not, but it sure isn't hurting me since I feel much much better than when eating dairy, meat and mostly cooked foods. I enjoy the fresh flavors of the foods and the light, non-sluggish feeling after a meal. I was previously a VERY heavy coffee drinker, but since I have been concentrating so much on antioxidant teas etc, I don't have any craving for coffee whatsoever. I make a smoothie every morning consisting of lots and lots of mixed greens (usually a lot of spinach) with a pineapple juice base, brocolli tops, some kelp granules, usually two kinds of sprouts, a half an avacado, a banana, an apple, and some bee pollen with sometimes some aloe vera juice. It tastes very refreshing and very satisfying. I could never get enough greens just by adding more salad and carrot sticks to my meals.
That is pretty much what I am doing. Hoping to stay healthy. Suggestions welcome.
Tirza