As I mentioned in my previous post, my next steps post surgery and them finding out I have papillary serous cystadenoma with borderline malignancy is that I had to be seen by oncology to start my patient relationship with them and be cleared to continue to another round of IVF. That was this past Tuesday. I met with Dr. Rose, the head of gynecological oncology at Cleveland Clinic, his fellow, and a resident.
At first it was only his fellow and his resident talking to me. The first question they asked of course is do I have children. They then went into what Dr. Falcone found during surgery, which was stage 2 borderline papillary serous cystadenoma, and what the (limited) studies say about it. Dr. Rose then came in and further explained my options.
The upside is that after some discussion I was given clearance to continue fertility treatment. I do however have to have a CT scan and CA125 bloodwork every 6 months till I am done.
The downside is that once I am done I will have to have a radical hysterectomy. What they have found with my specific tumor type is that regrowth is more likely the more lady parts you have. Since I have them all right now, regrowth is almost certain. The risk with regrowth is that there is a 30% chance that it could become ovarian cancer.
So, that’s where I am. Trying to process it all and having a hard time with it. I’m grateful he is letting me continue treatment for the time being, but it’s scary anytime a Dr would take you back to surgery if you were already done having kids. This of course also adds yet more urgency to my need to hurry up and do IVF and have success. The longer I wait the more likely it is there will be regrowth and my choice in this could be taken away. I’d really prefer being able to make the decision to get the hyst, rather then having it forced on me.