My first post and I am not very good at this so please be patient. In fact I sent a very long email instead. Please let me know that I am not the only one in the world wit h this rare cancer which mimics the symptoms of Ovarian cancer and is given the same chemotherapy treatment apart from the fact that surgery is not an option usually offered. This is probably because it consists of cancer cells in the peritoneum and there are no solid tumours but it has the same deadly outcome as OV if diagnosed too late.
I was diagnosed at stage 3 in May 2011 and my CA125 of 8000 was reduced to normal levels as my treatment progressed. I had my last CA125 in OCT 2012 and none since on the grounds that it wont change the outcome and it would cause anxiety. I am given a general check every 3 months and a yearly CT Scan.
I was very happy to be invited to the Ova Care patient day in Cork and the OC patients were very welcoming along with the speakers who took part in the day. I was able to get answers to my questions. I hoped I might also find someone with my particular form of cancer .
My plea is if there is anyone out there who either has this diagnosis or is familiar with this disease please let me know. It will stop me from feeling isolated and the thought that I am the only one hanging on this particular cliff edge