• I could use some advice ...

    Asked by Hilkei on Monday, December 9, 2019

    I could use some advice ...

    I am 6 years past a 5 year prognosis for Mantle Cell Lymphoma. My last CT scan was 12 months ago and my last PET I can't remember.

    My doctor requested a CT scan which was turned down by the insurance company. I wrote them basically begging for a scan so that I could have some assurance other than the blood tests I am ok. They said the reason for the denial is my doctor sent in handwritten notes that were illegible, and didn't include enough documentation to prove that I needed a scan. They suggested he send my entire file to prove that the scan was needed because they don't keep this type of information on file.

    My doctor is an old-fashioned guy, and he does hand write all the notes to my file, so if he sends a huge illegible file they will deny the scan request anyway. He says that we will get a scan in 9 months when I got on Medicare.

    Is it safe to wait 21 months for a scan? Has anyone been though anything like this? Can anyone give me any advice how to handle this?

    5 Answers from the Community

    5 answers
    • po18guy's Avatar

      It is very late in the game, but is there another doctor available for a second consult/opinion? Mantle cell is nothing to mess around with, as you well know. A doctor who is, ummmm, "experienced" enough to still use handwriting "may" not be at the top of his game. A younger doctor would be trained in computerized records and that is what insurance companies (whether government or private) thrive on.

      As well, hoping that you are done with lymphoma, but....there has been a ton of research and new drugs and combos available since you were diagnosed, and more data just released over the weekend at the national hematologists meeting (ASH). Besides drugs, monitoring guidelines may have been modified to some degree.

      A younger and more aggressive doctor will get more results for you - you should NOT have to push for this! IMO, I would much rather have an arrogant but aggressive doctor who could place me in remission than a friendly, slap on the back doctor who would gladly cancel appointments to attend my funeral!

      I would check into another doctor.

      over 1 year ago
    • andreacha's Avatar

      Hilkei - In today's society I am sorry to say you MUST advocate for yourself. I agree completely with the above 3 answers. Someone's file in the doctor's handwriting is unheard of today. I personally know of no other doctor (and I have 10) that does this now. And, actually I don't know how he is getting away with it with Medicare. They require computerized files today. We have one person in our community who works in insurance so she may be able to chime in. Please, please, get yourself another doctor if you value your life and it's obvious that you do, or you wouldn't have asked for opinions. I can only hope and pray that you will look for one. Don't even tell him you are leaving if you decide to. Find one and they will automatically request your records. When your new doctor takes a look at that mess he will want tests to be done on you. Your new doctor will fight your insurance company for coverage for those tests. All he would have to do is send them your doctor's chicken scratch to prove how necessary the tests are. Good luck and let us know the outcome. Good luck.

      over 1 year ago
    • Carool's Avatar

      I’m adding to these great responses by saying that even if your doctor can’t use a computer — a definite handicap these days, especially for any medical professional — his office staff should be able to transcribe his notes. I, too, would find a more modern, up-to-date oncologist. As po18guy said, your present doctor may well not be informed of new treatments available to you should you ever need them. Good luck with this.

      over 1 year ago

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