My first scan question

sunlover_56
sunlover_56 Member Posts: 110
edited July 2012 in Kidney Cancer #1
Hello everyone. I havent posted in a while but now I have a question about scans. I had a full left robotic assisted nephrectomy in April for RCC. stage 2 grade 1. My urologist has scheduled me for a lower body scan on July 23rd. My oncologist has also scheduled me for one on Oct 5th. Im not sure if I should have them so close together or not? (I dont think either office knew what the other had scheduled) I called and spoke to both and they are looking into it. My concern, though, is that both scans are for lower abdomen ONLY. I would think I would be getting a full body scan to make sure nothing had metestizised to my lungs or anywhere eles. Is it normal to get just a lower scan? What has everyone eles gotten as their first scan?



Thank you



Judy

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2
    Scan coverage
    Hi Judy. Mine have all been thorax, abdomen and pelvis (CT with contrast). My first path report was pT4, grade 4, stage 4, sarcomatoid, necrotic - about the worst report it's possible to have, so thorough follow-up in my case is essential (as proved by need for an almost immediate repeat open surgery) However, I'm surprised your follow-up is not to be more comprehensive and I would be asking for a full explanation of what is intended.
  • Limelife50
    Limelife50 Member Posts: 476
    #3
    Hi Judy
    I think this might have to do with the fact that your uroligists is ordering the scan and it seems they order scans based on what areas they are familiar.If it were me i would demand a full body scan with contrast provided you have a good creatine level and a good GFR which can be established thru a blood test,good luck.
  • JackieP125
    JackieP125 Member Posts: 56
    #4
    Limelife50 said:

    Hi Judy
    I think this might have to do with the fact that your uroligists is ordering the scan and it seems they order scans based on what areas they are familiar.If it were me i would demand a full body scan with contrast provided you have a good creatine level and a good GFR which can be established thru a blood test,good luck.

    Scans
    My Urologist referred me to an Oncologist who orders "ALL" scans for me. I get chest, abdomen and pelvis at the same time. I see my Urologist once a year now to check kidney function, but I see my Oncologist every 3 months for scans or x-rays.
  • sunlover_56
    sunlover_56 Member Posts: 110
    #5
    Texas_wedge said:

    Scan coverage
    Hi Judy. Mine have all been thorax, abdomen and pelvis (CT with contrast). My first path report was pT4, grade 4, stage 4, sarcomatoid, necrotic - about the worst report it's possible to have, so thorough follow-up in my case is essential (as proved by need for an almost immediate repeat open surgery) However, I'm surprised your follow-up is not to be more comprehensive and I would be asking for a full explanation of what is intended.

    Tex
    Thanks Tex, I will certainly look into it. I wish I was better at articulating what I would like to say to you, but I guess just a big hug will have to saffice for now ((((( Texas_wedge )))))) You have had to battle this so much more than me and unlike me, you and some of the others seem to know just what to say to make the rest of us feel more at ease with this horrid disease. You have a gift :-)

    Judy
  • sunlover_56
    sunlover_56 Member Posts: 110
    #6
    Limelife50 said:

    Hi Judy
    I think this might have to do with the fact that your uroligists is ordering the scan and it seems they order scans based on what areas they are familiar.If it were me i would demand a full body scan with contrast provided you have a good creatine level and a good GFR which can be established thru a blood test,good luck.

    Lime
    I agree Lime, but my oncologist ALSO ordered only a lower scan. Not sure what to make of that.I will take you advice and demand a full body scan. I know I would feel much better. thanks Lime :-) You're the best.

    Judy
  • sunlover_56
    sunlover_56 Member Posts: 110
    #7
    JackieP125 said:

    Scans
    My Urologist referred me to an Oncologist who orders "ALL" scans for me. I get chest, abdomen and pelvis at the same time. I see my Urologist once a year now to check kidney function, but I see my Oncologist every 3 months for scans or x-rays.

    Jackie
    I told my urologist that I was also seeing an oncologist (even though right after the surgery he said I didnt need to see one) His response was that he wanted to be the one to keep track of my remaining kidney. I just dont want dupicate scans. Especially when they arent even full body scans. Thanks Jackie, I will talk, once again, to them both and see if I can come to some sort of arrangement. In fact, I am waiting on calls from both of them now, as I type.
  • ourfriendjohn
    ourfriendjohn Member Posts: 72
    #8
    JackieP125 said:

    Scans
    My Urologist referred me to an Oncologist who orders "ALL" scans for me. I get chest, abdomen and pelvis at the same time. I see my Urologist once a year now to check kidney function, but I see my Oncologist every 3 months for scans or x-rays.

    Scans
    Judy,

    I appreciate you bringing up the topic since I have had questions about my follow-ups. My urologist scheduled abdominal and pelvis MRI's and a chest X-ray in April following a right radical nephrectomy (17.5cm,2b,n0,m0,grade4-sarcomadoid) in September 2011. The same is scheduled for November. He seems concerned over the radiation that a CT scan would subject me to and/or the contrast material used. Creatinine levels were 1.3.

    My research here and on Kidney-ONC, that Texas-Wedge kindly recommended, has shown that while MRI's are ok for detection of RCC mets in the abdomen and pelvis areas, the x-ray is generally insufficient to image the lungs. A CT scan of the chest, even "dry", is apparently preferred. I am envious of all of you that get a full scan. I have a physical scheduled with my general practitioner in a couple of weeks and am going to ask his opinion and see if I can get a referal to an oncologist for a consultation.

    Susan Poteat at Kidney-ONC who, I think, is a medical physicist, is a great resource if you have specific questions on the imaging.

    John
  • sunlover_56
    sunlover_56 Member Posts: 110
    #9
    sunlover_56 said:

    Lime
    I agree Lime, but my oncologist ALSO ordered only a lower scan. Not sure what to make of that.I will take you advice and demand a full body scan. I know I would feel much better. thanks Lime :-) You're the best.

    Judy

    oops
    I made a mistake on my scan dates. The one with urology is august 23 and Oct 5th with oncology. pretty close together huh. I did get a call back from Urology. They told me I am also getting a chest xray right after the scan. If anything shows up on that, then they will do an upper scan to get a better look. Now I wonder how good a chest xray will be at finding anything. I am being paronoid huh lol.. Love you all!!!

    Judy
  • ourfriendjohn
    ourfriendjohn Member Posts: 72
    #10
    sunlover_56 said:

    oops
    I made a mistake on my scan dates. The one with urology is august 23 and Oct 5th with oncology. pretty close together huh. I did get a call back from Urology. They told me I am also getting a chest xray right after the scan. If anything shows up on that, then they will do an upper scan to get a better look. Now I wonder how good a chest xray will be at finding anything. I am being paronoid huh lol.. Love you all!!!

    Judy

    oops
    Your urologist sounds like mine. See my comment on x-rays, up a couple of entries.
  • Machelle03
    Machelle03 Member Posts: 27
    #11
    ourfriendjohn said:

    oops
    Your urologist sounds like mine. See my comment on x-rays, up a couple of entries.

    Sun....
    I say demand a CT scan. This is your life and health. We all need to remember we are the customers. We put our faith in the doctors hands but in the end we are paying. What's the saying? The customer is always right? If you feel the need for a CT scan....ask for it. There is nothing like peace of mind. My thoughts and prayers are with you.
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #12
    Machelle03 said:

    Sun....
    I say demand a CT scan. This is your life and health. We all need to remember we are the customers. We put our faith in the doctors hands but in the end we are paying. What's the saying? The customer is always right? If you feel the need for a CT scan....ask for it. There is nothing like peace of mind. My thoughts and prayers are with you.

    CT Scan
    Judy,

    No problem seeing both a Urologist and Oncologist. Both should be aware of the tests the other orders and both should receive copies of the others tests even if it is from you. With regard to the chest x-ray the purpose is to determine if the RCC has metastisized to the lung which is where it would first show up. May each test be a NED.

    As far as conflicts with dotors neither my Urologist or GP would refer me to a Nephrologist when I got Gout 2 years ago, So I found a Nephrologist on my own, Now I get the reports from each doctor and deliver them to the next dr, when I see them. No flak from any of the doctors and my GP has deferred my hypertension monitoring to my Nephrologist. These doctors all have big egos which have to be massaged.Even though I have Stage 3 Kidney Disease (which is sort of normal for a 69 year old with 1 kidney) my GFR has improved from 41 to 49 since I began seeing the Nephrologist.

    Personally I would recommend seeing a Nephrologist where your GFR is below 50 and or you have hypertension issues.


    Icemantoo
  • foxhd
    foxhd Member Posts: 3,181 Member
    #13
    icemantoo said:

    CT Scan
    Judy,

    No problem seeing both a Urologist and Oncologist. Both should be aware of the tests the other orders and both should receive copies of the others tests even if it is from you. With regard to the chest x-ray the purpose is to determine if the RCC has metastisized to the lung which is where it would first show up. May each test be a NED.

    As far as conflicts with dotors neither my Urologist or GP would refer me to a Nephrologist when I got Gout 2 years ago, So I found a Nephrologist on my own, Now I get the reports from each doctor and deliver them to the next dr, when I see them. No flak from any of the doctors and my GP has deferred my hypertension monitoring to my Nephrologist. These doctors all have big egos which have to be massaged.Even though I have Stage 3 Kidney Disease (which is sort of normal for a 69 year old with 1 kidney) my GFR has improved from 41 to 49 since I began seeing the Nephrologist.

    Personally I would recommend seeing a Nephrologist where your GFR is below 50 and or you have hypertension issues.


    Icemantoo

    scans
    I've mentioned before that my scans are every 6 weeks! Man, I hope that's not what kills me. Chest, abdomen and pelvis. With oral and IV contrast.

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