New here but concerned

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  • Ed J
    Ed J Member Posts: 34
    #22
    todd121 said:

    CT Scan

    You didn't mention your diagnosis (type of RCC, stage, Fuhrman grade). However, you most likely should have a CT at least of the abdomen/pelvis and a chest x-ray at least annually. Make sure your doctor is following the minimum NIH guidelines for followup for your type/stage of cancer. If you're not seeing an oncologist with experience with RCC, you may want to get a second opinion with an experienced oncologist just to make sure you're being followed appropriately. Some of us (like me) with Stage 3 are getting a chest/abdomen/pelvis CT every 6 months for the first 3 years, then annually for the next 2 years.

    Some urologic oncologists from what I've seen by posts on here, are skimping on the followups and doing only ultrasounds or x-rays.

    My oncologist won't allow contrast with a creatinine level above 1.4, because the contrast can damage the kidneys and he doesn't feel it's worth the risk. Still, I get scheduled each time for a CT with contrast, and I have to advocate for myself and tell the imaging center "No. You're not inserting an IV and I'm not taking contrast". When I do, and explain, they say "Ok". But they're always ready to do it anyway so be sure you know what your doc wants and what you want and stand up for yourself when/if they try and do otherwise.

    Best wishes,

    Todd

    Thanks for the reply:  My

    Thanks for the reply:  My appointment reminder reads: 0830 X-Ray   0900 Lab   1030 Consultation.  SO maybe I'm not scheduled for a CT anyway.

     

    Thanks,  Ed J                                                                         

  • NanoSecond
    NanoSecond Member Posts: 653
    #23
    Ed J said:

    Thanks for the reply:  My

    Thanks for the reply:  My appointment reminder reads: 0830 X-Ray   0900 Lab   1030 Consultation.  SO maybe I'm not scheduled for a CT anyway.

     

    Thanks,  Ed J                                                                         

    Your appointment

    OK. But the bigger question is why not?  An X-ray will not reveal much as regards to any mets. It may be useful for imaging the lungs and/or looking for fluid buildup around them - but that's about it.  What about the rest of your body? You should be getting a CT-scan of your Chest/Abdomen/Pelvis as a routine matter.

  • Ed J
    Ed J Member Posts: 34
    #24
    NanoSecond said:

    Your appointment

    OK. But the bigger question is why not?  An X-ray will not reveal much as regards to any mets. It may be useful for imaging the lungs and/or looking for fluid buildup around them - but that's about it.  What about the rest of your body? You should be getting a CT-scan of your Chest/Abdomen/Pelvis as a routine matter.

    I understand that anyone with

    I understand that anyone with a creatinine level above 1.5 should not have Contrast because the contrast can damage the kidney. My last result was 1.6

    Just spoke with my Radiologist: He advises there will be no contrast used in my exam due to my last reading.

  • NanoSecond
    NanoSecond Member Posts: 653
    #25
    Ed J said:

    I understand that anyone with

    I understand that anyone with a creatinine level above 1.5 should not have Contrast because the contrast can damage the kidney. My last result was 1.6

    Just spoke with my Radiologist: He advises there will be no contrast used in my exam due to my last reading.

    Which is it?

    OK but is it going to be a CT-scan or an X-ray?  They are not the same thing.

  • Ed J
    Ed J Member Posts: 34
    #26
    NanoSecond said:

    Which is it?

    OK but is it going to be a CT-scan or an X-ray?  They are not the same thing.

    A CT Scan
     

    A CT Scan

     

  • Ree_Maryland
    Ree_Maryland Member Posts: 161 Member
    #27
    Skagway Jack said:

    Creatine levels

    After consulting with a Nephrologist recently I learned the following.  1 Creatine levels can vary significantly based on a number of things for example...my own case.  I have had measures within the same month from 1.48 to 1.83.  I had hydrated well when the 1.83 was measured....but I had also been working out vigorously.  I eased off my excersize and two days later test 1.52.  GFR estimates are even more wildly inaccurate....my estimated GFR is 48 or so, but my actual as calculated by a 24 hour urine collect was actually 79.    Bottom line....a lot can impact things..go to a nephrologist if you have concerns.  Incidentally my doctor would not use contrast on my one year CT due to that 1.83 reading despite a reading only a couple weeks earlier of 1.48.  Best of luck.

     Oh and one more thing I forgot to mention.....I have medical records going way back and I looked at my creatine from 24 years ago....two kidneys no cancer and good physical condtion....1.3.   Body muscle mass has a lot to do with creatine levels.

     

    Creatinine

    Thanks for the reply to my Creatinine levels I still get confused on what is good and what is bad. My creatinine level was 1.18  so now im drinking more water . 

  • NanoSecond
    NanoSecond Member Posts: 653
    #28
    Ree_Maryland said:

    Creatinine

    Thanks for the reply to my Creatinine levels I still get confused on what is good and what is bad. My creatinine level was 1.18  so now im drinking more water . 

    You are good

    1.18 is very good if you only have one kidney.

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