Hi, I'm Chris and recently joined this group. Stephanie, my 33 year-old wife and mom of 6 kids has advanced cancer, which we were recently told seems like it came from a benign tumor called a teratoma that underwent a malignant transformation inside her ovary. Its been a long journey. Originally they suspected ovarian cancer, than they told us they think its desmoplastic small round tumor (another rare cancer) and that it is definitely not a normal variant of ovarian cancer. While they sent samples out to lab to be tested we waited for 2 months, and steph seemed like she was on her deathbed. Once the results for DSRCT came back negative, they immediately gave her carbo-taxol, which had a partial response and shrunk most tumors by about a fifth, and more importantly, the painful ascites drained. She had palliative debulking surgery to treat pain last month, and the gross examination of ovaries revealed a teratoma with nodules of ganglion neuroma (benign neural tissue tumors). Pathologist felt that this was indicative of a dermoid cyst (aka ovarian teratoma) which underwent malignant transformation. Reading up on this condition was not comforting, especially when the histological type of cancer is unknown - treatment is impossible without more knowledge, and very risky even if we did know. Our doctor referred us to cancer specialist at dana farber in boston at the end of the month, I'm hoping this is just another false positive, and that something like 6 month event free survival from treatment. Steph is doing well post-surgery, the break from chemo has been nice for her and many of the ill feeling symptoms of the cancer have passed. Likewise, with mom doing good the kids are having an easier time lately. I have been taking them to cancer support groups at the Patrick Dempsey Center for Cancer Hope and Healing.
The process of the doctors narrowing down possibilities and making guesses that turn out to be wrong has been emotionally tough. It sounds like they have good reason to believe what they believe this time - i can't help but feel like its happening again, still.