Hi Beth,
My experience is very similar to yours. BMB in September 2020 favors ET with Jak2 V617f mutation but Moffitt oncologist and local oncologist tell me that it could be ET or pre fibrotic MF as my BMB also shows level 1 and 2 reticulin fibrosis. I go for bloodwork once a month and all seems to be ok for now. From what I understand from my docs, MPNs are progressive and difficult to differentiate. I have read many articles from reputable websites that say this could all be one disease in different stages. The bottom line is that no one really knows for sure.
I know it's difficult, but the best things you can do for yourself are stay positive, exercise daily and take care of yourself. Dwelling on it will not help. The exercise will, both physically and mentally! As my Moffitt doc said, "It doesn't matter what we call it. It is what it is." At the time, I thought that was really harsh and lacked compassion. I now realize that he had a point. I can spend my time taking care of myself, or I can sit around and worry about it. Don't get me wrong, I do worry about it, but I don't dwell on it and let it consume me.
I hope you (and I, as this is my first post) can find the support we need to stay positive and learn how to live with this uncertain diagnosis.
Rayna