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Thu, Oct 24 5:59am · Rare cancer: ovarian clear cell carcinoma in Gynecologic Cancers

Hello amg. I'm sorry I haven't responded until now. Ovarian clear cell is rare, but there are women who communicate regularly with each other on different sites. I was diagnosed in May 2017 and thankfully, I am doing well. Please feel free to write to me with any questions or concerns you may have and I will do my best to answer.

Sun, Sep 15 1:15pm · Talking Frankly about Living with Advanced Cancer in Cancer

I had taxol with carboplatin for my frontline treatment, but I developed PN with the first round so it was quickly modified and then eliminated. With HGSC, I don't know what drugs are used (I have OCCC). Did you have germline testing as well as testing of the tumor? The treatments can be targeted with that knowledge, I believe. By the way, I think your short hair is quite flattering.

Sun, Sep 15 1:07pm · I have ovarian cancer in Gynecologic Cancers

I am very surprised that the Mayo Clinic did not set up an appointment for you. Perhaps you should contact them again. I was diagnosed with ovarian clear cell two and a half years ago which is obviously different than the uterine form. Were you exposed to DES? For those of us with OCCC, most of us had endometriosis. As a physician, I would think they would recognize your desire to inquire about alternative treatments that might be available.

Sun, Sep 15 12:57pm · Talking Frankly about Living with Advanced Cancer in Cancer

Sorry I didn't read your message until today. I've been very busy with family obligations which is a wonderful distraction for me. I, too, was diagnosed with clear cell about two and a half years ago. It is rare and most women you encounter on-line have HGSC. There is a group of women (of all ages with OCCC on Inspire) that is very supportive. I have done a fair amount of research on this particular histology and it is very frequently associated with endometriosis. You are fortunate in having supportive friends and family…it is very helpful. Why are you on oxygen? As for your fear of recurrence, I believe most of the women you will meet in on-line forum will express the same concern. I exercise a lot, do yoga and meditation, and surround myself by nature. And for me, learning about this rare condition has been important.

Sun, Sep 15 12:43pm · Talking Frankly about Living with Advanced Cancer in Cancer

So glad to hear from you. Although this is difficult, you will be in good hands. I was given carboplatin in my frontline treatment, but I don't know anything about Doxil. Will your husband be with you during this upcoming appointment/surgery? You've described him as so supportive. Do let us know how everything goes for you. Is this a recent photo? You look lovely!

Sun, Sep 15 6:24am · I have ovarian cancer in Gynecologic Cancers

Wondering how you are doing. Have you had your appointment at Mayo? I'm hoping they will provide you with the help you need and that you will feel confident in how to proceed.

Mon, Sep 2 7:09am · I have ovarian cancer in Gynecologic Cancers

I am two years past treatment. The chemo was manageable although I did lose my hair as well as develop peripheral neuropathy which I still have. As a result, the dosage was modified early on in the process. My histology is rare (LCOH–its treatment is no longer described in the 2019 NCCN guidelines for ovca). I believe you have HGSC?
Returning to Mayo seems to be the best. You will feel confident in their care. I'm hoping your appointment goes well. Stay in touch.

Sun, Sep 1 5:53pm · I have ovarian cancer in Gynecologic Cancers

You are fortunate. I, too, have had the support of my husband, children, and friends. Like you, I am older and I am grateful for the wonderful life I've had. I find it very disconcerting when I encounter much younger women on-line who have undergone dramatic changes in their lives as a result of this disease. I follow the research carefully and I believe great progress is being made. We can be hopeful for the future.
Do stay in touch. I hope that your appointment goes well.