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.
I had anaplastic large cell B lymphoma of the duodenum, which isn't exactly the same but it is close. I am also in remission and keep in mind that they almost never, ever, use the "c" word - I'm talking about "cure." It's always remission, or sustained remission, or long-term remission, never "cured," because in their minds it never will be. Don't worry too much about that part, it is pretty much business as usual. The anxiety of cancer returning is, unfortunately, something that many of us have to live with the rest of our lives. All I can say is that in most cases from what I know, it does get better and many days you are able to not think about it as time goes on but it does become a part of you, for sure. Just know you are not alone! Keep on keepin' on, DPM Thank you for sharing🙏💪💕
