@jspr422 Thank you for reaching out. It is so great to hear from someone that is going through the same situation. Everyone thought it was crazy that I had to wait so long for my pathology report. It's good to know of someone else who experienced the same thing. By the way, what state are you in?

So, my local doctor (one that is a gynecological oncologist) called me and said he presented my case to a group of doctors that review tumors and their recommendation is just observation. Yesterday I had a follow-up appointment from my hysterectomy and met with the nurse practitioner. The Dr. never told me what stage I was in. The nurse told me I was in Stage 1 which is a huge relief. She also told me that all the cancer was removed with the hysterectomy. Another piece of information I did not get from my Dr.

Anyway, I am feeling much better about things after my appointment yesterday. I too will have observation every 3 months and a CT scan every 6 months. (No chemo or radiation). My appointment for a 2nd opinion is at Mayo on Mar. 19. I am anxious to see if they recommend the same.

Thanks again for your encouraging and insightful response. I look forward to hearing how your journey is going with this super rare disease. (I asked the nurse practitioner how many people she sees with this and she said maybe 1 per year and that's in Chicago!) Please share updates if you are comfortable doing so as well.