Community Member
a month agoHi ladies, I have a very rare ovarian cancer, a metastatic Brenner's tumor that has encompassed my right ureter, Diagnosed 9/25. Since Brenner's tumors are so rare, there isn't much information regarding treatments. It's treated as a low grade serous epithelial ovarian cancer - 6 carbo-taxol infusions, and typically debulking surgery in between (3/3). Unfortunately, for me surgery nor radiation is an option. I had the 6 infusions and am "done" but not NED now and likely will never be. I've seen 5 oncologist specialists (4 surgical) at Moffitt Cancer Hospital in addition to my local oncologist, and each one has given me the same answer, Watchful waiting...scans every 3 months and my cancer is stable. Has anyone else out there had a similar experience with your ovarian cancer?
Community Member
a month agoWatchful waiting with rare cancers can feel especially uncertain since there's less research and fewer treatment options available. The approach typically involves regular monitoring to track any changes, allowing for quick action if the cancer progresses while avoiding unnecessary treatments when the disease remains stable. Many patients in similar situations find it helpful to connect with others who understand the unique challenges of managing rare cancers - please consider sharing your experience and connecting with others here who may have walked a similar path.
Community Member
a month agoYes, Mine started as Cancer in the right ovarie. Completed surgery 4 years ago and within 9 months cancer returned in the Peritoneum . A rare cancer that will never ever go into remission. It's tough just knowing this. I am starting the ovarian Pill which is a clinical trial along side of 2 other chemos all at the same time. What's even tougher is not having any support from family.
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