It just doesn't end

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  • APny
    APny Member Posts: 1,995 Member
    #22
    todd121 said:

    Sorry

    Hi. Sorry to hear you're having complications. I hope they get it sorted out soon.

    That's really odd about the 1.2 cm cyst that wasn't there before. You might want to see if they can pull and re-read your previous CT. From what I've read about growth rates (of simple cysts as well as RCC tumors), they don't grow that fast. It might be that a small, simple cyst might not get mentioned by a radiologist in a report (or it might not get on the summary section but might have been buried in the detail).

    It might make you feel better knowing what happened. Do you have the full report from that CT? For me, there were 3 x CTs done at 2 different times. The first CT was a regular CT that found my tumor and the second CT was done both with and without contrast. So you might even have 3 CTs to look at. That other cyst really should have been there.

    Also, about your hemoglobin, do you get a full copy of your blood test results each time? For the tests I've had, 12.8 is already below normal (although just below). I wonder if it was flagged as low on your first test? I know docs sometimes ignore borderline low/high values... I always try to get full copies for my records now and I look through myself. I noticed on some of my earlier tests before my tumor was found, I had some normal but changing values that might have been good to look into. Anyways, I like having copies and I also like going through each abnormal value and asking the doctor what it means. Sometimes I feel like they scan so fast they might miss a low number here or there (particularly if it's not flagged).

    I hope they figure out quickly what's wrong and it resolves soon.

    All the best,

    Todd

     

    Todd, thank you. Yes, 12.8

    Todd, thank you. Yes, 12.8 would be low for a man (13.5 is lower limit for you guys) but normal for women (12 is lower limit). I do get the full report and everything was below normal on my last test. It's slowly rising thanks to blood transfusion and iron IV series. What is so troubling is the sudden drop in two weeks from 12.8 to 6.7. Clearly there's internal bleeding but where? Had endoscopy yesterday and that was fine. No full results but no obvious signs of anything that would bleed.

    The new cyst... no, it didn't show on my last CT scan (the one that identified my RCC) which was with contrast. Sloan also had an US done to confirm RCC and that didn't mention it either. This most recent CT on the 17th was done to check on what may be bleeding and it was wihtout contrast since they didn't want to do that with my recent nephrectomy. All it says is 1.2 cm cyst. Could be nothing, and let's hope so otherwise it's one fast growing little %$#@ and having two tumors in one kidney would be really rare. I'm seeing my surgeon at Sloan Kettering today and bringing the CT disc with me. We'll see what he says. About 10 years ago a CT for something else made mention of a small simple cyst in the exact same place this one is. Maybe it's the same one.

     

  • Djinnie
    Djinnie Member Posts: 945 Member
    #23
    APny said:

    Todd, thank you. Yes, 12.8

    Todd, thank you. Yes, 12.8 would be low for a man (13.5 is lower limit for you guys) but normal for women (12 is lower limit). I do get the full report and everything was below normal on my last test. It's slowly rising thanks to blood transfusion and iron IV series. What is so troubling is the sudden drop in two weeks from 12.8 to 6.7. Clearly there's internal bleeding but where? Had endoscopy yesterday and that was fine. No full results but no obvious signs of anything that would bleed.

    The new cyst... no, it didn't show on my last CT scan (the one that identified my RCC) which was with contrast. Sloan also had an US done to confirm RCC and that didn't mention it either. This most recent CT on the 17th was done to check on what may be bleeding and it was wihtout contrast since they didn't want to do that with my recent nephrectomy. All it says is 1.2 cm cyst. Could be nothing, and let's hope so otherwise it's one fast growing little %$#@ and having two tumors in one kidney would be really rare. I'm seeing my surgeon at Sloan Kettering today and bringing the CT disc with me. We'll see what he says. About 10 years ago a CT for something else made mention of a small simple cyst in the exact same place this one is. Maybe it's the same one.

     

    All the best!

    Hi Apny,

    I am glad to hear the endoscopy was fine! Although it does not resolve your problem, it a positive start to the process of elimination. I hope the meeting with your Surgeon goes well today; and you get news to put your mind to rest; about the cyst at least! All the best:)

     

    Djinnie x

  • APny
    APny Member Posts: 1,995 Member
    #24
    Djinnie said:

    All the best!

    Hi Apny,

    I am glad to hear the endoscopy was fine! Although it does not resolve your problem, it a positive start to the process of elimination. I hope the meeting with your Surgeon goes well today; and you get news to put your mind to rest; about the cyst at least! All the best:)

     

    Djinnie x

    Thank you Djinnie, I'll post

    Thank you Djinnie, I'll post what he said. And I'm hoping for the best for you as well and that you get the ok for that much needed weekend getaway to Lake Como :)

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