I am 43 and have clear cell ovarian also. Was diagnosed Feb 2025 and had debulking surgery and hysterectomy. I only had one tumor but was stage 3a. They think it grew out of very advanced endometriosis and specifically an endometrioma that I had for at least a decade. I had microscopic cancer after debulking, so I did 6 rounds of carbo/taxol. Initially had a good reaction with ca-125 normalizing after only one round. That's usually a good sign for long term prognosis! But three months after chemo, my cancer was already back. So they labeled it "chemo resistant" and said it's incurable. I have low volume disease with patches of small cancer in the peritoneum (not in any organs yet) and a couple of mildly enlarged lymph nodes.

Now I am on a new treatment of Keytruda + Avastin + Cytoxan. I've only had 2 sessions, so it's too early to know if it's helping or not. I definitely feel better since starting the treatment. And I have read some promising case studies about Keytruda, so I am hopeful. I also visited Mayo to look at clinical trails, but it seemed standard care was my best option right now.

It's very scary and uncertain. I wish there was more information and options for us. Right now, I have some occasional, mild pain in abdomen, which is probably due to fluid (ascites) or irritation in those areas. I'm still able to work full time, go for daily walks, and live my life for the most part. I get tired easily, and sometimes eating can be a struggle. I don't always have an appetite, and sometimes have nausea.

I hope and pray that they come up with an effective treatment or cure. My doctors have said the prognosis data is out of date (usually not including new immunotherapies or emerging treatments) or not specific to clear cell. So it's hard to even know what to plan for.