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3 days ago · Rare cancer: ovarian clear cell carcinoma in Gynecologic Cancers

Yes, I am pleased about the funding increase as well. My gyn/onc told me a while back that there has been a renaissance in OVCA research/treatment. We have every reason to be hopeful. I do follow the research at Mayo and I am aware of the clinical trials. Thanks for joining our group and contributing your news.Stay well.

4 days ago · Rare cancer: ovarian clear cell carcinoma in Gynecologic Cancers

Hello. I know you from other sites and I am glad to see you've joined this one. The OCCC group is small. I continue to do research on this histology. Much of the research is out of Asia, particularly Japan where it far more prevalent. The NCCN guidelines for patients changed its standing in 2019 with regards to OCCC claiming that "treatment of theses ovarian cancers is beyond the scope of this book." In the medical version, they do address specific treatment. Their recommendations now seem more in line with ESMO, the European version as well as the Canadian approach. While research is done in the States, it seems limited compared to elsewhere. Funding for OVCA is lacking in general, and for clear cell seems even more so.
I know that you are doing well, thankfully. The Mayo Clinic is excellent in their care. I grew up going there. Stay in touch. If you come upon any interesting news, I'd love for you to share it. Progress is being made so we can be hopeful.

Dec 15, 2019 · Talking Frankly about Living with Advanced Cancer in Cancer

Dear naturegirl5, I wrote to you when you first joined the group. I'm glad to see that you are doing well. Like you, I don't post very often. However, I noticed your comment about your worries regarding a recurrence or secondary cancer. I would imagine all of us share those concerns, perhaps for a lifetime. Although I would say, as time goes on it does seem less burdensome emotionally on a daily basis. Most of us experience anxiety prior to an appointment. I had one in October and my blood pressure was sky high when normally it is quite low (they have me monitor it at home). I'm always completely elated when it is all over and my husband and I celebrate. Then I turn my attention to my life, my loved ones, and dear friends (I don't have a pet as I travel too much, but I had dogs for years). I'm certain your appointment will go well in February, but I truly understand your feelings. Be well.

Oct 24, 2019 · 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.

Sep 15, 2019 · 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.

Sep 15, 2019 · 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.

Sep 15, 2019 · 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.

Sep 15, 2019 · 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!