From the moment my friend notified me of my high lymphocyte count, I immediately turned to the internet, and began investigating every possible reason for a high lymphocyte count. By the time I received the diagnosis of CLL, I was an old hand at navigating the vast knowledge available on the internet. I managed to find a news group with others also diagnosed with CLL, and was able to pick the brain of a CLL specialist in the UK.
It was at this point that I realized that our health care system leaves something to be desired, and doctors aren't the gods some of us may believe them to be. From all the research I had done, people I had exchanged information with and a review of my immunophenotype report, I came to the conclusion that I did not have CLL. Of course that didn't necessarily indicate a good thing. There were several other possibilities, the most likely scenario being even worse.
I confronted my oncologist with the discrepancies in the report, and asked for some additional tests to confirm the diagnosis. He simply stated, "you don't need any additional tests. You have CLL, period". My guess is he really didn't want to spend the money. Or he just thought he was a know it all, and didn't like his diagnosis being questioned.
Fortunately, my company switched insurance providers. We were enrolled with Kaiser Permanente in Los Angeles, and I was assigned an oncologist who was working as a fellow at the Kaiser - Bellflower facility. She was young and eager and willing to explore options, which is something you don't always find in more experienced (not necessarily smarter) oncologists who aren't as willing to explore and learn.
Finally after about 2 months and running every conceivable test, which included PET & CT scans, bone marrow biopsy (which is not a very pleasant test) a spinal tap and FISH tests to check for chromosomal abnormalities, my worst fears came true.
I had MCL (Mantle Cell Lymphoma), a rare and relatively newly designated (since 1990) lymphoma. Plus since it seemed only to be manifested in the blood and a slightly enlarged spleen, it was likely the leukemic phase of MCL, which typically is an even deadlier form of MCL.
It was at this point that I realized that our health care system leaves something to be desired, and doctors aren't the gods some of us may believe them to be. From all the research I had done, people I had exchanged information with and a review of my immunophenotype report, I came to the conclusion that I did not have CLL. Of course that didn't necessarily indicate a good thing. There were several other possibilities, the most likely scenario being even worse.
I confronted my oncologist with the discrepancies in the report, and asked for some additional tests to confirm the diagnosis. He simply stated, "you don't need any additional tests. You have CLL, period". My guess is he really didn't want to spend the money. Or he just thought he was a know it all, and didn't like his diagnosis being questioned.
Fortunately, my company switched insurance providers. We were enrolled with Kaiser Permanente in Los Angeles, and I was assigned an oncologist who was working as a fellow at the Kaiser - Bellflower facility. She was young and eager and willing to explore options, which is something you don't always find in more experienced (not necessarily smarter) oncologists who aren't as willing to explore and learn.
Finally after about 2 months and running every conceivable test, which included PET & CT scans, bone marrow biopsy (which is not a very pleasant test) a spinal tap and FISH tests to check for chromosomal abnormalities, my worst fears came true.
I had MCL (Mantle Cell Lymphoma), a rare and relatively newly designated (since 1990) lymphoma. Plus since it seemed only to be manifested in the blood and a slightly enlarged spleen, it was likely the leukemic phase of MCL, which typically is an even deadlier form of MCL.
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