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Rare cancer: ovarian clear cell carcinoma

Gynecologic Cancers | Last Active: Sep 5 5:36pm | Replies (125)

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@theblondecherie

@colleenyoung and @odette Hello, I am brand new to the group. Hi to everyone else, thank you for sharing your stories. I am in the beginning stages of all of this and still in shock and disbelief. I am a healthy 46 year old woman that just had a routine laparoscopy to remove some fibroids and cysts. Unfortunately during the surgery they found a tumor on my left ovary and determined it was ovarian clear cell carcinoma due to severe endometriosis that I didn't even know that I had. I have to wait 3 weeks to get my hysterectomy/staging surgery since I just had surgery. However, I am quite concerned because I am rapidly losing weight and have no appetite (could be the stress of it all). Anyway I live in California and UCSD is the option my insurance covers but because this is such a rare cancer I also want to consider Mayo and MD Anderson. Honestly, I wish I could go to Europe (I lived there for the last 10 years) and they seem to be at the forefront of research as well as Asia. Any guidance you can provide would be so greatly appreciated as I am beyond overwhelmed. I never saw this coming in a million years. I am not sure if you are allowed to recommend oncologists on this forum but if you cannot please let me know how I reach out to you individually? Thank you SO much for any support you can provide. All the best, Stacie

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Replies to "@colleenyoung and @odette Hello, I am brand new to the group. Hi to everyone else, thank..."

Hi Stacy. I would be most interested in hearing of the research you are referring to in Europe and Japan. Was not aware of any innovative treatments in those countries. My treatment was at Mayo Clinic, AZ with what I believe to be the very best oncologists. They are at the front lines of new research, using IP infusions that definitely worked for my stage 3C cancer. I also enjoyed the bedside manner in both my oncologists, one sat with me during my first chemo. They both took calls and SMSs 24/7 and responded immediately. They truly care. I am now in remission, thanks to them.