Dear Stacie, I'm so sorry that you've become a member of this "group" as no one expects this to happen. I was absolutely stunned myself as I was very healthy and had no risk factors to my knowledge. In fact, I had had an endometrioma about 18 years prior to my diagnosis which they didn't seem concerned about and had reassured me would never develop in to ovarian cancer, my concern at the time They did inquire as to whether or not I had been diagnosed previously with endometriosis. In retrospect, I did have a history of many of the symptoms, but they had always been dismissed by doctors. However, all of the women in my family have endometriosis and consequently various health problems (infertility, etc.). I also had the few recognized "protective" factors.
Ovarian clear cell is very rare although I am in touch with several women online with similar diagnoses. You may want to join Inspire which has a group of women with OCCC. You are correct in that it is more prevalent in Asia and consequently much of the research originates there, especially Japan. I have done exhaustive research myself over the past three years. I also consult research out of Europe (see ESMO) as I, too, have lived in Europe many times and have confidence in their research. Canada also has a different approach to treatment, especially for early stage OCCC. Your staging will be very important in determining your treatment. In the United States, the standard for care and treatment is the NCCN which you can go to for information although I've not found the recent changes regarding OCCC as helpful.
This is a terrifying experience and I understand your fear. It is also a very challenging time to be dealing with such an ordeal. If you can communicate with your surgeon/oncologist sooner than three weeks, it might help you. My surgeon contacted me with pathology and cytology results as soon as he received them. Your team will be there to support you. I lost weight and had no appetite, too, as I was overwhelmed and in shock. I hope that you have a support system in place (family, friends) who can go to appointments with you. It is important to have another set of ears and someone who can record info, help with questions you've written prior to the appointments. Try to eat well and exercise. The exercise helped me not only physically, but emotionally. Yoga and meditation were helpful to me as well as massage.
I had my treatment at Dana Farber in Boston, MA and additional advice from the Mayo Clinic. I would wait for the results so you can think more clearly about how to proceed.
Have hope. Many of us with OCCC are doing well. I will be happy to help you.

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