I keep reading that people in my position---diagnosed with CLL---have to be their own advocate, and aggressively so. I am beginning to see that this is true.
Days went by and I had not heard back from the Ear, Nose, Throat (ENT) doctor about the results of my most recent CT scan (the one he ordered at my behest) intended to see if the various glands and lymph nodes in my throat had grown any and were crowding up against my wind pipe or against the base of my tongue. So I called, and called again the next day. Finally I got a call back from a clerk (administrative aide?) at his office to say she was surprised I hadn't heard any results. Yup; me, too.
Today, the ENT doctor did call---thank you, very much---and said that there was no growth in my lymph nodes since December (approx. 60 days). That's pretty good news!
I have also had trouble getting a reply from my oncologist about arranging for the additional tests recommended by Dr. Hamblin, in England. His head nurse actually seemed rather annoyed that I had actually obtained advice from other sources, or that I had made a decision (in the absence of timely advice from her boss) on my own to postpone the appointment at the Dana Farber Institute.
"You did what???" she asked.
"What makes you think the Dana Farber Institute even needs those tests?" she sniped.
"I don't know. It just seems sort of logical that if one of the top CLL experts in the world thinks it would be advisable, then the folks at Dana Farber might benefit from the information in evaluating my case."
So, anyway, she dumped the job on me of finding out from my insurance company if it will pay for these tests.
I think I need to talk to her boss. I am inclined to think if he---the doctor---says the tests would be helpful, the insurance company would be a lot more inclined to say "yes" than if I ask.
Nobody said this would be easy.
