New and really scared, please help if you can

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  • todd121
    todd121 Member Posts: 1,448 Member
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    Thanks Todd; pretty ironic

    Thanks Todd; pretty ironic but my 2.8 cm "thing" is in the middle of the kidney too. I hope that doesn't create a problem if they have to take out part of it. If it does create a problem with doing a partial removal then I wonder what my options are? I would not want to have to start on dialysis at age 44. By the way how big was your cancer? How was it found? Etc.

     

    thank you so much.

    Hi TD

    Mine was just shy of 7cm. It was discovered when I started peeing red on a business trip and then started having pain on my right side. I thought I had a kidney stone (again). It felt the same. I went to the ER because the pain got to be pretty unbearable and they did a CT there and found it. The pain was caused from blood clots passing through the ureter so it really did feel just like a kidney stone.

    Because of the location of mine, they thought that it might be a transitional cell cancer instead of a RCC cancer. Transitional cell cancer is more like a bladder cancer and is quite different. These cells in the bladder line the ureter and also the inside part of the kidney. But mine turned out to be RCC, clear cell. The most common type.

    My urologic oncologist was really an expert. He's the head of the urology department at UC Irvine Medical School. He consulted with another surgeon on doing a partial to try and wedge the tumor out, but because it was so in the middle of all the blood supply there was no way to do it. They recommended doing the radical. It was done laprascopically, but I have a pretty big scar because they wanted to take the whole thing out intact and the location made it difficult to do it in pieces.

    Just do the next indicated step, do your little bit of research, and get second opinions. Try and not worry about stuff you don't know yet. (Easy to say...)

    I've heard you don't actually need a lot of kidney function to be pretty ok, so I have a hard time imagining that there's such a huge difference between your two kidneys that that's going to be the issue. I haven't heard of anybody on this board having that be the problem.

    Best wishes to you.

    Todd

    P.S. By the way, I've heard that from the CT with contrast they can tell whether it needs to come out pretty reliably. Your mass is not really small and not really big. It's big enough to have a good look on the CT scan, but small enough to make it probably Stage 1 (if it's even cancer, which, hopefully it is not). If they do decide it needs to come out, you won't really know what it is or the actual stage until they do the pathology report. They can't fully stage it from imaging, or tell what it really is either, just what it "likely" is with regards to cancer or not, and a "likely" stage as well.

  • Touchdown99
    Touchdown99 Member Posts: 31
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    CT Scan is actually today

    I was not sure whether I should post this as a new thread or as a reply to my other thread. I have been having so much anxiety, I asked to have the CT scan with contrast moved up...and it is now schedule for about 2 hours from now; at 11:30 today. Please please pray for me. I am amazed at the courage of the good people on this board. I love you.

    Little update and very confused

    Hi everyone, thank you for praying. I don't know what to make of the results. My ct was definitely done with IV contrast because I had an IV with iodine, weird metallic taste, etc.   But the results are confusing and although it says CT ABD/PEL WO/W CONTRAST at the top of the report, later on it says no contrast. Here take a look and see if you can offer any insight.

     

     

                                                        Here is exactly what the report from my ct scan with IV contrast says:

     

    Exams: CT ABD/PEL WO/W CONTRAST

     

    Procedure: CT ABD/PEL WO/W CONTRAST

     

    Clinical History: Renal Mass

     

    History: Follow up from stone removal

     

    Comparison: September 23, 2013

     

    Findings: Axial images were acquired at 3.8 mm intervals from the dome of the diaphragm to the floor of the pelvis without the use of intravenous contrast.

     

    Lung windows demonstrate several stable rounded calcific densities consistent with an old healed granulomatous process such as histoplasmosis. No suspicious masses are seen. No pleural effusion or pneumothorax is identified.

     

    Liver windows demonstrate the visualized spleen to be unremarkable given the limitation of the study without the use of intravenous contrast. A small hypodensity is identified adjacent to the gallbladder fossa within the medial aspect of the right lobe of the liver. Measures approx 3mm in AP dimension and is too small accurately characterize on this exam. Statistically this is most likely a cyst. The liver is otherwise unremarkable in appearance.

     

    Bone windows demonstrate age appropriate degenerative change within the spine and bony skeleton. No suspicious blastic or lytic lesions.

     

    Soft tissue windows demonstrate the visualized heart and mediastinal structures to be unremarkable in appearance. Once again calcifications are identified within the lung bases and a very small hypodensity is seen within the medial aspect of the right lobe of the liver. The spleen, pancreas, adrenal glands and stomach are unremarkable in appearance. Stable cysts are identified in both kidneys. The previously seen right sided hydronephrosis and hydroureter have decreased. The previously seen stone is no longer radiographically evident. Visualized bowel bladder and prostrate are unremarkable. No suspicious adenopathy is seen.

     

    Impression: 

    1. Resolution of the previously seen right sided hydronephrosis as well as ureteral stone.

    2. Very small hypodensity within medial aspect of right lobe of liver anteriorly. Statistically this likely a small cyst.

    3. Old healed granulomatous process.

     

     

  • dhs1963
    dhs1963 Member Posts: 513
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    Little update and very confused

    Hi everyone, thank you for praying. I don't know what to make of the results. My ct was definitely done with IV contrast because I had an IV with iodine, weird metallic taste, etc.   But the results are confusing and although it says CT ABD/PEL WO/W CONTRAST at the top of the report, later on it says no contrast. Here take a look and see if you can offer any insight.

     

     

                                                        Here is exactly what the report from my ct scan with IV contrast says:

     

    Exams: CT ABD/PEL WO/W CONTRAST

     

    Procedure: CT ABD/PEL WO/W CONTRAST

     

    Clinical History: Renal Mass

     

    History: Follow up from stone removal

     

    Comparison: September 23, 2013

     

    Findings: Axial images were acquired at 3.8 mm intervals from the dome of the diaphragm to the floor of the pelvis without the use of intravenous contrast.

     

    Lung windows demonstrate several stable rounded calcific densities consistent with an old healed granulomatous process such as histoplasmosis. No suspicious masses are seen. No pleural effusion or pneumothorax is identified.

     

    Liver windows demonstrate the visualized spleen to be unremarkable given the limitation of the study without the use of intravenous contrast. A small hypodensity is identified adjacent to the gallbladder fossa within the medial aspect of the right lobe of the liver. Measures approx 3mm in AP dimension and is too small accurately characterize on this exam. Statistically this is most likely a cyst. The liver is otherwise unremarkable in appearance.

     

    Bone windows demonstrate age appropriate degenerative change within the spine and bony skeleton. No suspicious blastic or lytic lesions.

     

    Soft tissue windows demonstrate the visualized heart and mediastinal structures to be unremarkable in appearance. Once again calcifications are identified within the lung bases and a very small hypodensity is seen within the medial aspect of the right lobe of the liver. The spleen, pancreas, adrenal glands and stomach are unremarkable in appearance. Stable cysts are identified in both kidneys. The previously seen right sided hydronephrosis and hydroureter have decreased. The previously seen stone is no longer radiographically evident. Visualized bowel bladder and prostrate are unremarkable. No suspicious adenopathy is seen.

     

    Impression: 

    1. Resolution of the previously seen right sided hydronephrosis as well as ureteral stone.

    2. Very small hypodensity within medial aspect of right lobe of liver anteriorly. Statistically this likely a small cyst.

    3. Old healed granulomatous process.

     

     

    You don't have cancer

    The key elements are:  what they were worried about is no visible...meaning there is no tumor; they do not disapear.

  • NanoSecond
    NanoSecond Member Posts: 653
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    Little update and very confused

    Hi everyone, thank you for praying. I don't know what to make of the results. My ct was definitely done with IV contrast because I had an IV with iodine, weird metallic taste, etc.   But the results are confusing and although it says CT ABD/PEL WO/W CONTRAST at the top of the report, later on it says no contrast. Here take a look and see if you can offer any insight.

     

     

                                                        Here is exactly what the report from my ct scan with IV contrast says:

     

    Exams: CT ABD/PEL WO/W CONTRAST

     

    Procedure: CT ABD/PEL WO/W CONTRAST

     

    Clinical History: Renal Mass

     

    History: Follow up from stone removal

     

    Comparison: September 23, 2013

     

    Findings: Axial images were acquired at 3.8 mm intervals from the dome of the diaphragm to the floor of the pelvis without the use of intravenous contrast.

     

    Lung windows demonstrate several stable rounded calcific densities consistent with an old healed granulomatous process such as histoplasmosis. No suspicious masses are seen. No pleural effusion or pneumothorax is identified.

     

    Liver windows demonstrate the visualized spleen to be unremarkable given the limitation of the study without the use of intravenous contrast. A small hypodensity is identified adjacent to the gallbladder fossa within the medial aspect of the right lobe of the liver. Measures approx 3mm in AP dimension and is too small accurately characterize on this exam. Statistically this is most likely a cyst. The liver is otherwise unremarkable in appearance.

     

    Bone windows demonstrate age appropriate degenerative change within the spine and bony skeleton. No suspicious blastic or lytic lesions.

     

    Soft tissue windows demonstrate the visualized heart and mediastinal structures to be unremarkable in appearance. Once again calcifications are identified within the lung bases and a very small hypodensity is seen within the medial aspect of the right lobe of the liver. The spleen, pancreas, adrenal glands and stomach are unremarkable in appearance. Stable cysts are identified in both kidneys. The previously seen right sided hydronephrosis and hydroureter have decreased. The previously seen stone is no longer radiographically evident. Visualized bowel bladder and prostrate are unremarkable. No suspicious adenopathy is seen.

     

    Impression: 

    1. Resolution of the previously seen right sided hydronephrosis as well as ureteral stone.

    2. Very small hypodensity within medial aspect of right lobe of liver anteriorly. Statistically this likely a small cyst.

    3. Old healed granulomatous process.

     

     

    Follow up

    The only thing strange is that you reported that you were given contrast but the report claims that was not the case - at least in terms of evaluating your liver.  You need to follow up and find out why there is a discrepancy.

    Other than that this shows that you are likely NED (No Evidence of visible Disease).  Congratulations!

  • Touchdown99
    Touchdown99 Member Posts: 31
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    Follow up

    The only thing strange is that you reported that you were given contrast but the report claims that was not the case - at least in terms of evaluating your liver.  You need to follow up and find out why there is a discrepancy.

    Other than that this shows that you are likely NED (No Evidence of visible Disease).  Congratulations!

    Well I talked to the

    Well I talked to the radiologist who read the ct scan today on the phone.Update: He said that he did indeed look at the contrast images and that the report was correct but it was a new system and he just erroneously typed it was without contrast. He is doing addendum for me. I said did you see anything that looked like cancer he said no but you do have several cyst. I just picked up the addendum/amended report. Here is exactly what it says:

    REPORT HAS BEEN AMENDED.

    Addendum 10/03/2013.

    ADDENDUM: CT/ABDWPO.

    addendum: The study was performed with and without the use of intravenous contrast.Numerous simple appearing cysts are seen within each kidney.

     

     

    That is good news... But my appointment with my urologist is today at 3:10; will he go along with these or will he look to see if the radiologist is right? I'm kind of scared he might interptet the images different and still give me other news today. Does that ever happen?

  • NanoSecond
    NanoSecond Member Posts: 653
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    Well I talked to the

    Well I talked to the radiologist who read the ct scan today on the phone.Update: He said that he did indeed look at the contrast images and that the report was correct but it was a new system and he just erroneously typed it was without contrast. He is doing addendum for me. I said did you see anything that looked like cancer he said no but you do have several cyst. I just picked up the addendum/amended report. Here is exactly what it says:

    REPORT HAS BEEN AMENDED.

    Addendum 10/03/2013.

    ADDENDUM: CT/ABDWPO.

    addendum: The study was performed with and without the use of intravenous contrast.Numerous simple appearing cysts are seen within each kidney.

     

     

    That is good news... But my appointment with my urologist is today at 3:10; will he go along with these or will he look to see if the radiologist is right? I'm kind of scared he might interptet the images different and still give me other news today. Does that ever happen?

    Your report

    Well, that was the right answer.  I am glad you got that mistake sorted out with the radiologist.

    Are you going to consult with your Urologist about your heart condition?  I thought not.  Your radiologist is the expert on reading these scans, not your Urologist.

    Still, you do seem to be intent on discovering bad news where there is none...

    OK, here you go:  Our government is still shut down.

  • Touchdown99
    Touchdown99 Member Posts: 31
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    Your report

    Well, that was the right answer.  I am glad you got that mistake sorted out with the radiologist.

    Are you going to consult with your Urologist about your heart condition?  I thought not.  Your radiologist is the expert on reading these scans, not your Urologist.

    Still, you do seem to be intent on discovering bad news where there is none...

    OK, here you go:  Our government is still shut down.

    I'm new to dealing with

    I'm new to dealing with various doctors interpreting results. Who do you believe if the urologist says the radiologist missed something?

  • Djinnie
    Djinnie Member Posts: 945 Member
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    Well I talked to the

    Well I talked to the radiologist who read the ct scan today on the phone.Update: He said that he did indeed look at the contrast images and that the report was correct but it was a new system and he just erroneously typed it was without contrast. He is doing addendum for me. I said did you see anything that looked like cancer he said no but you do have several cyst. I just picked up the addendum/amended report. Here is exactly what it says:

    REPORT HAS BEEN AMENDED.

    Addendum 10/03/2013.

    ADDENDUM: CT/ABDWPO.

    addendum: The study was performed with and without the use of intravenous contrast.Numerous simple appearing cysts are seen within each kidney.

     

     

    That is good news... But my appointment with my urologist is today at 3:10; will he go along with these or will he look to see if the radiologist is right? I'm kind of scared he might interptet the images different and still give me other news today. Does that ever happen?

    All Clear!

    I think because you had yourself totally convinced you had cancer, you are finding it hard to believe that you don't. There is no other news!! Just take some deep breaths and relax, there is nothing more to be scared about!

     

    Djinnie

  • garym
    garym Member Posts: 1,647
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    Your report

    Well, that was the right answer.  I am glad you got that mistake sorted out with the radiologist.

    Are you going to consult with your Urologist about your heart condition?  I thought not.  Your radiologist is the expert on reading these scans, not your Urologist.

    Still, you do seem to be intent on discovering bad news where there is none...

    OK, here you go:  Our government is still shut down.

    LOL...

    Good one Neil!

     

    TD,

    Cart before the horse, drive those negative thoughts out, hug your wife and son, then go buy that lottery ticket.  You're on a roll, BELEIVE IT!

  • dhs1963
    dhs1963 Member Posts: 513
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    I'm new to dealing with

    I'm new to dealing with various doctors interpreting results. Who do you believe if the urologist says the radiologist missed something?

    has that happened? My experience is that usually does not happen

    Often, the urologist only reads and reports the on the report of the scan.  They will look at the scan only if there is something to see. 

  • Touchdown99
    Touchdown99 Member Posts: 31
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    Djinnie said:

    All Clear!

    I think because you had yourself totally convinced you had cancer, you are finding it hard to believe that you don't. There is no other news!! Just take some deep breaths and relax, there is nothing more to be scared about!

     

    Djinnie

    Thank you all. The urologist

    Thank you all. The urologist said all was ok. I'm very fortunate. The people have met on this board over the last few days are the friendliest, most courageous people I have ever met. 

  • bcbigb
    bcbigb Member Posts: 31
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    you should be ok

    i was recently diagnosed on sept. long weekend.never smoked ,dont drink alcohol or coffee,regularl workout.docs were astoniashed when the news came back ,was diagnsed by accident.tumer was 12cm by 8 cm . took my right kidney tumer and lymph nodes .Doc sais everything looks good ,results in 2 weeks but everything looks positive.Yes surgery hurts but you should be doing well after .so good luck and my family prayers are with you.always think positive and you will do fine ,its the unknown that is the scariest.

  • todd121
    todd121 Member Posts: 1,448 Member
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    Well I talked to the

    Well I talked to the radiologist who read the ct scan today on the phone.Update: He said that he did indeed look at the contrast images and that the report was correct but it was a new system and he just erroneously typed it was without contrast. He is doing addendum for me. I said did you see anything that looked like cancer he said no but you do have several cyst. I just picked up the addendum/amended report. Here is exactly what it says:

    REPORT HAS BEEN AMENDED.

    Addendum 10/03/2013.

    ADDENDUM: CT/ABDWPO.

    addendum: The study was performed with and without the use of intravenous contrast.Numerous simple appearing cysts are seen within each kidney.

     

     

    That is good news... But my appointment with my urologist is today at 3:10; will he go along with these or will he look to see if the radiologist is right? I'm kind of scared he might interptet the images different and still give me other news today. Does that ever happen?

    It's great news. Congrats.

    WO/W indicates "without and with" contrast. They scan without, add the contrast, scan again. (As I recall...)

    I'm a little confused. Earlier you said they had seen a 2.8 cm mass. That's a pretty good size mass. But this report doesn't mention such a large cyst/mass. Did the same radiologist read both scans? Where did the 2.8 cm thing go? Or was it maybe 2.8 mm?

    Todd