I rarely write messages, but I found your comments very thoughtful. I was diagnosed with stage 1A ovarian clear cell carcinoma (very rare) in May 2017. Although I was considered asymptomatic, a physician I was seeing for an unrelated problem encouraged me to have a CT scan and a CA-125 test. Fortunately, I had access to one of the top cancer centers (as well as being able to obtain a second opinion from another). At the time, the NCCN recommendation was chemo despite my being told it was likely a surgical cure. As a scientist by training, I had very strong reservations about following this course of action (international research found chemo ineffective ten years ago for OCCC). In the end, my treatment was very modified as a result of developing PN. In less than two years time, the NCCN has changed their recommendations to "observe" as an option for this histology. I now live with the concerns about the long lasting effects of treatment.
At the institution where I received care, germline testing is done as well as genetic testing of the tumor. I was grateful to be able to tell my daughters it was a somatic mutation. However, it is a histology associated with endometriosis which afflicts all of the women in my family.
I continue to do research on ovca (so heterogeneous) with a focus on OCCC. It is a time of rapid change in this area.
Being educated about this disease is very important to me, but I struggle with wanting to do "something" to help other women and feeling helpless. For me, the emotional/psychological aspect of recovery has been the most trying. I focus on being healthy (although I always had a very healthy lifestyle) and my family and friends. Sometimes I wish I could just file this whole experience away as some of my friends have managed to do, but at the same time I feel compelled to pursue my understanding of this dreadful disease.
I hope you stay well. And thank you for your contribution to this site.