Reply To: My weird and odd diagnosis (sorry if long!!)
It’s hard to imagine what you are going through after such a difficult time getting a diagnosis. It has to be overwhelming. Linda put things very well – be sure you are under the care of a physician with much experience in gyn carcinosarcoma. Her advice to follow up with scans early is also very good advice. Some forms of gyn cancer are “platinum-resistant,” meaning that platinum-based drugs, such as carboplatinum, are not effective and a different category of chemotherapy has to be used (ifosfamide, for instance).
Because GCS is so rare, it may be hard for you to find someone with the right experience. We have provided the names of some experts in carcinosarcoma. If there is no one near you, we feel strongly that it is worth a trip to visit an expert, especially with your unique findings. Someone with significant experience in carcinosarcoma (and in clear cell ovarian cancer) can also help address the questions of radiation. It may be helpful to watch or read the transcript with Dr. Growdon, Interview #4 on “Diagnosis and Treatment” in which he discusses the role of radiation therapy in uterine carcinosarcoma. This is found under “Resources” tab – Interviews with Specialists.
We have many resources here and understand that navigating everything can challenging at first. But we also want to help and support, so ask questions here. Keep in touch and let us know how you are doing.
all the best,