Atypical Cyst and other LINGO

DeDeinWA
DeDeinWA Member Posts: 1
edited March 2014 in Kidney Cancer #1
I went to the doctor with right side and back pain. A very persistent pain that I felt for at least two months before going to the doctor. Doctor suggested a CT to look for kindey stones. No stones....but they did see a lesion in the right kidney. He next suggested a Ultrasound. The Ultrasound showed the same lesion...also referred to as a mass of about 1.5cm in the right kidney. Was then referred to a Urologist who I thought was an ****....who still hadn't bothered to call me or recommend anything after two weeks. I finally got aggressive with his staff and finally they passed me on to that doctor's associate and she was much more responsive. A high contrast CT Scan was ordered. Had that one week ago. Same lesion/mass....now being called an "abnormal cyst".....but it didn't take up the contrast like a cancerous mass would....so they recommend I wait four months....and repeat the CT Scan. Of course I am worried that this is a cancerous tumor and that waiting would not be a smart decision. Any comments would be appreciated. Thanks, DeDe

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  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • Chicago
    Chicago Member Posts: 73 Member
    #3
    Hey Dede,

    I can probably give you some info. I too went in with what was actually kidney stones several years ago, and that's how they discovered my lesions. All were cyst-based, but not all of the cysts were the same.

    I'm not sure exactly what they mean by "abnormal," but I'm guessing they mean something more than just a typical fluid-only cyst (class 1, I believe). I had (have) several fluid cysts, and we've pretty much ignored them.

    I had surgery though on one cyst that didn't classify easily. It didn't take up the contrast in one part of the test, but it did in another. I had the option of waiting 6 months to test again, but my docs were a lot more aggressive, and recommended against it (after giving me only 20% odds that the cyst was cancerous).

    Turns out that my 20% odds were actually 100%. My one unusual cyst was cancer after all, but thankfully found at its early stage. During the surgery process though, another non-fluid cyst was also found.

    Normally, they would just remove that one too, but it was located so close to the kidney tubing ducts, that the only way to remove the cyst was to lose the whole kidney. My doc was pretty cool, and left me with the majority of the kidney, but only after satisfying himself that the other unusual/abnormal cyst was definitely not cancerous (for now, anyway).

    My regular annual or semi-annual scans now focus primarily on my one remaining unusual cyst. The moment it shows any changes, out goes the kidney. I have been assured that, for a lesion this small, cancer could not grow fast enough before they could spot it -- assuming I keep up with the regular scans.

    So, having had both cancerous and noncancerous "abnormal" cysts, my guess is that you are probably safe to wait either way. Even if it is cancerous, it should not be able to grow fast enough at this stage to risk you. If you are at all uncomfortable though, find a different doc you like and get another opinion.

    Please feel free to email me privately any time if you want to chat about it.
  • KCFighter
    KCFighter Member Posts: 50
    #4
    There is a variant of Clear Cell RCC called Cystic Clear Cell RCC. It's typically cured by surgery according to a book I got from the Kidney Cancer Association.
  • Unknown
    Unknown
    #5
    This comment has been removed by the Moderator
  • floralam88
    floralam88 Member Posts: 14
    #6
    Chicago said:

    Hey Dede,

    I can probably give you some info. I too went in with what was actually kidney stones several years ago, and that's how they discovered my lesions. All were cyst-based, but not all of the cysts were the same.

    I'm not sure exactly what they mean by "abnormal," but I'm guessing they mean something more than just a typical fluid-only cyst (class 1, I believe). I had (have) several fluid cysts, and we've pretty much ignored them.

    I had surgery though on one cyst that didn't classify easily. It didn't take up the contrast in one part of the test, but it did in another. I had the option of waiting 6 months to test again, but my docs were a lot more aggressive, and recommended against it (after giving me only 20% odds that the cyst was cancerous).

    Turns out that my 20% odds were actually 100%. My one unusual cyst was cancer after all, but thankfully found at its early stage. During the surgery process though, another non-fluid cyst was also found.

    Normally, they would just remove that one too, but it was located so close to the kidney tubing ducts, that the only way to remove the cyst was to lose the whole kidney. My doc was pretty cool, and left me with the majority of the kidney, but only after satisfying himself that the other unusual/abnormal cyst was definitely not cancerous (for now, anyway).

    My regular annual or semi-annual scans now focus primarily on my one remaining unusual cyst. The moment it shows any changes, out goes the kidney. I have been assured that, for a lesion this small, cancer could not grow fast enough before they could spot it -- assuming I keep up with the regular scans.

    So, having had both cancerous and noncancerous "abnormal" cysts, my guess is that you are probably safe to wait either way. Even if it is cancerous, it should not be able to grow fast enough at this stage to risk you. If you are at all uncomfortable though, find a different doc you like and get another opinion.

    Please feel free to email me privately any time if you want to chat about it.

    Hi-
    May I find out if the
    Hi-

    May I find out if the surgery is painful? and how long do you have to stay in the hospital?
    Do you have any symptoms, like lose weight, or just feeling pain in the lower back.

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