Confused and Frustrated

I was diagnosed over 5 years ago with Focal Nodular Hyperplasia. The mass was 3.5cm at the time. I was told not to take hormones which I stopped taking as soon as I was told about it. I had another CT scan done over 2 years ago and it was still there a grew a little. I was told it was normal and that they don't know the cause etc. So I went to the doctor 2 months ago with severe abdominal pain and went through an ultrasound, ct scan and diet change. The ct scan showed that not only did the mass grow to 5.5cm but i have multiple more tumors, lesions and liver cysts. I was referred to a specialist which told me that there was nothing they could do til he does a scope and goes inside and looks at whats causing the pain because i shouldnt be in pain. My family doctor has me on pain meds which was effecting my job so i had to be put on medical leave. During all these tests and labs a tumor tag was never done til last week and i got the results back today and mmy CA 19-9 was at 51. Should I be concerned about this? I have so many questions but not a sinlge answer to any of them. Every doctor either doesnt know or has to look inside to know but that doesn't ease my mind. Is anyone out there that can give me a little advice or questions that I should be asking my doctor?