Should I agree to proposed CT scan?

My onc wants to schedule a CT scan. He didn't find much evidence of nodes on physical examination. My platelet count is borderline concern, eg some slight change in a bad way. Rest of numbers are ok other than the usual slight rise in counts. No night sweats and just the usual tiredness, but that's even better since I've recently retired. I'm concerned about unnecessary chemicals and radiation, as well as the expense even with Medicare and supplemental insurance. He says that this way we'll know if there are any nodes he can't feel pushing on organs. He said that if my kidneys are being stressed that's not good and would affect treatment later on if my kidneys are damaged. Wouldn't I have some kind of symptom if my kidneys were involved? Surely my platelet count isn't affected by kidney function. I feel pretty good, so why is he so excited all of a sudden to do a CT scan? I would appreciate any advice on what questions to ask so that I can be more comfortable with this proposed test.

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  • Of course you should have the CT. Its uses less harmful radiation than conventional x-ray and will do you no harm at all. You should look at it as a chance to get a full body examination. If your just retired the scan can give clues on more potential problems then CLL which maybe lurking, hopefully not in your case. I realise you must be in the USA as the medicare and insurance reference and have no idea what a CT costs but you have it as snap shot of your health at this moment in time and it can be used again if needed to consult on any other issues for a time in the near future.

  • Hi Ragsgolf, I totally agree with Mark on this. My Consultant scheduled a CT scan for me soon after diagnosis even though, like you, he could find no evidence of palpable nodes on external examination.

    I was actually very reassured by the scan because there's always the niggling doubt that there's nodes lurking deep inside ready to cause problems or like Mark says, other problems waiting to be uncovered.

    I realise being in the UK, the cost wasn't an immediate issue for me and if I'm honest, I weighed up the radiation risks with the beneficial effects of this exploration. It was worth having and I'd recommend it to you.

    Newdawn x

  • CTscan saved my life... hidden nodes were around my heart and threatening a kidney... in my case it started CLL treatment immediately

  • Thank you for the feedback. I am reassured by your opinions.

  • A baseline CT seems like a good idea. There are other tests that would show some kidney issues - a 24 hour urine for protein and creatinine clearance as well as BUN and Creatinine on your lab reports, but those would not show the kind of issue that Chris is talking about. And, as others have said, it would give you some reassurance that there aren't other issues that you aren't aware of. I would think, being a new Medicare patient myself, who has had a few ultrasounds and a CT scan recently, that your insurance should cover all but any deductible that you haven't met yet this year.

  • Even for those other tests I'd still have to pay the deductibles anyway. Based on what you have all said, the CT scan makes sense now. I'm comfortable now with following through on the doctor's plan for the scan. Thank you all for your replies. it is so helpful to be able to talk with others in the same boat. Without this cyber community who in the world would we have to get advice and information! Our friends and relatives, well meaning as they might be, just don't have the credibility and experience, so again....thank you for being there! Or should I say here?! :)

  • CT scan results were unremarkable. Eg. Spleen slightly swollen, no scary swollen lymph nodes. Haven't seen the bill or medicare payment yet. Apparently being new in the system and some hang ups with confusion regarding my former insurance being primary has not helped. So I can't report back yet on how well Medicare and my secondar insurance has covered the procedure.

  • That's an encouraging report for someone that has lived with CLL for at least 8 years. It should also help your doctor in the current considerations on when to start treatment, etc.

    Good that you've been spared a shock with the report - hope there's not one in the billing!

    Neil

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