After having a bone marrow biopsy my Oncologist left me with a diagnosis of NK- chronic lymphoproliferative disorder. She explained she had never had a patient with this rare blood disorder and that I would need to go to a University. I felt relieved and replied so I do not have cancer? She never answered just showed me an article on the disorder that she printed from goggle and said I will see you in 6 months. I asked her when someone would contact me from the University she said soon in a couple of weeks.
I left confused and immediately went on Google and could not find very much I did learn it was similar to T cell LGL Leukemia. So I contacted Leukemia and Lymphoma society and the Counselor explained this rare blood cancer. The lesson I have learned very quickly is you have to be your own advocate for your health.
This counselor gave me a game plan on taking charge of my health.