Has anyone else been diagnosed with t cell lymphoma duodenum meitl

I was diagnosed with a rare and aggressive form of non Hodgkin's lymphoma in 2020. T cell lymphoma duodenum meitl to be exact. Specialist cannot give me insight on this type of lymphoma because on 5% of people around the world are diagnosed with it yearly. They tell me they have no idea of it functionality and treat is as any other form of lymphoma. I'm called a medical mystery. However, I don't feel like one! I still have symptoms. However, I have never been told I am cured just you're in remission! It horrible not knowing if or when because specialist do not have an understanding of this type of cancer! I guess I'm just wondering if anyone else can relate? I feel like a walking time bomb! Although I am grateful! It still hard to deal with, if that makes sense.