Scan Results - Not as good as I hoped for

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nyisles
nyisles Member Posts: 30
in Kidney Cancer #1

I know I posted last week about scan results and I didn't want to leave everyone hanging. Just got back from spending 4 days in Tampa (I am from NY) so I wanted to share the news of the scans that I received on Friday.  My last scan in late February showed a stable disease, no growth, no spread. 98% of the cancer was gone and the 2% consisted of very small spots that were not even measured in size. Only 2 spots were measured, the biggest one was 4mm outside the right lung.

Friday, I received the news from my new scans which reported everything as "stable" except for two areas of concern. 1) mild progression of disease in the right lung nodule (it was 4mm and the doc either said it was now 5mm or 9mm...I think it was 5mm because I don't think going from 4 to 9 is "mild" progression) and 2) slight mucus in the left lung that may be a possible infection.

The scan report was read by a nurse with an accent where she also said "right kidney is good" then said "small spot on right kidney unchanged".  Never knew I had anything on the right kidney and she said it has been there all along. The scans were chest, abdomen, and pelvis, so out of all of the scans there were 2 areas of concern.

The scans were read by the nurse of my GP and I had her fax them to my oncologist in Boston. During my last oncologist visit in April, he said the next treatmean will be Nivolaub or Merck if I need it. 

My question to all....how did your docs treat "mild progression"?  Will they wait another 3 months or will they treat right away?  I already did 4 weeks of IL-2 last year so the next step is the newer drugs. I know some people out there (fox) have done well with Nivolaub.

Any feedback on how Nivolaub is given and how your docs treated "mild" progression would be much appreciated.  Thanks.

Comments

  • GSRon
    GSRon Member Posts: 1,303 Member
    #2
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    I suggest you first buy a

    I suggest you first buy a lottery ticket, then go have pizza and beer.!  Going from 4 MM to 5MM is within the error of the scan itself.  Keep in mind a scan is composed of slices, and just the fact that you are not exactly in the same position as the last scan can change the angle enough to cause that kind of difference.  This is why they only try to measure the largest spots they can find, as this improves the accuracy.  As for the spot in the other Kidney.. well if it did not light up, then it may just be a cyst.  Kidney cysts are very common and rarely turn in to any concern.  And yes in 90 days, they will know for sure... but as is... I suggest you go celebrate..!

    Ron

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #3
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    GSRon said:

    I suggest you first buy a

    I suggest you first buy a lottery ticket, then go have pizza and beer.!  Going from 4 MM to 5MM is within the error of the scan itself.  Keep in mind a scan is composed of slices, and just the fact that you are not exactly in the same position as the last scan can change the angle enough to cause that kind of difference.  This is why they only try to measure the largest spots they can find, as this improves the accuracy.  As for the spot in the other Kidney.. well if it did not light up, then it may just be a cyst.  Kidney cysts are very common and rarely turn in to any concern.  And yes in 90 days, they will know for sure... but as is... I suggest you go celebrate..!

    Ron

    Nodes to lung

    nyisles,

    Your bio suggests that you have had other nodes to the lung that have been addressed, but not their size.  My understaning from asking several doctors is that nodes to the lung under 8 mm are generally of no concern and they usualy watch and wait. 4 or 5 mm is very small and as Ron says measurements are not exact.

     

    Icemantoo

  • GSRon
    GSRon Member Posts: 1,303 Member
    #4
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    icemantoo said:

    Nodes to lung

    nyisles,

    Your bio suggests that you have had other nodes to the lung that have been addressed, but not their size.  My understaning from asking several doctors is that nodes to the lung under 8 mm are generally of no concern and they usualy watch and wait. 4 or 5 mm is very small and as Ron says measurements are not exact.

     

    Icemantoo

    Let me try to add to my

    Let me try to add to my explaination..  I am not great at articulating things at times..  Think of a growth of any kind and it is not perfectly round.  So making an accurate measurement is difficult.   Now take your average balogna.. it is round and long..  cut a straight slice in measure it.. then do an angled slice.. what is called a balogna slice and it will be wider.. the greater the angle of the slice, the wider it would be, yet the balogna did not change any.  This is how CT Scans work. they take slices on an angle.  So unless the slice is the exact same angle, two scans taken on the same day could easily have different measurements.  This is why they us a percentage of that dimension to determine if there is either growth or shrinkage.  I think it is like 20%, someone please correct me or verify.  And when it comes to the lungs, small "spots" could be anything, not just Cancer.  Even though it sounds bad, waiting sounds like the right thing at this time, given what you told us...

    Ron

  • foxhd
    foxhd Member Posts: 3,181 Member
    #5
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    GSRon said:

    Let me try to add to my

    Let me try to add to my explaination..  I am not great at articulating things at times..  Think of a growth of any kind and it is not perfectly round.  So making an accurate measurement is difficult.   Now take your average balogna.. it is round and long..  cut a straight slice in measure it.. then do an angled slice.. what is called a balogna slice and it will be wider.. the greater the angle of the slice, the wider it would be, yet the balogna did not change any.  This is how CT Scans work. they take slices on an angle.  So unless the slice is the exact same angle, two scans taken on the same day could easily have different measurements.  This is why they us a percentage of that dimension to determine if there is either growth or shrinkage.  I think it is like 20%, someone please correct me or verify.  And when it comes to the lungs, small "spots" could be anything, not just Cancer.  Even though it sounds bad, waiting sounds like the right thing at this time, given what you told us...

    Ron

    Without

    any large tumors left, they focus on the little things that they may not have even mentioned in the beginning. For what its worth, Your results sound like my follow ups. They will probably check on them in 3 months.

    Nivolumab is easy. An hour infusion. No side effects worth mentioning. Every 3 weeks. dosage varies. I had the highest at 10 ml/kg of body weight. I rode my motorcycle back and forth to my treatments about an hour away.

  • GSRon
    GSRon Member Posts: 1,303 Member
    #6
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    foxhd said:

    Without

    any large tumors left, they focus on the little things that they may not have even mentioned in the beginning. For what its worth, Your results sound like my follow ups. They will probably check on them in 3 months.

    Nivolumab is easy. An hour infusion. No side effects worth mentioning. Every 3 weeks. dosage varies. I had the highest at 10 ml/kg of body weight. I rode my motorcycle back and forth to my treatments about an hour away.

    And if you read my post on

    And if you read my post on the "What's coming down the Pike" thread... you will see that Nivo is applying for FDA approval soon..!  So, Nivo may be a lot easier to get (off label).  

    Ron

  • nyisles
    nyisles Member Posts: 30
    #7
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    GSRon said:

    And if you read my post on

    And if you read my post on the "What's coming down the Pike" thread... you will see that Nivo is applying for FDA approval soon..!  So, Nivo may be a lot easier to get (off label).  

    Ron

    Thank You

    Well then I guess my scans were not as bad as I thought. Still not sure if it went from 4mm to 5mm or from 4mm to 9mm, which sounds like it makes a difference but a 120% increase over 4 months seems more like "significant" progession instead of "mild", but the report said "mild". I guess it would help to have a copy of it.

    The lung nodule is one that has been there since March 2013.  All other lung nodules were surgically removed or have been eliminated by IL-2.  I do have a partial hernia by the kidney removal site, but it does not bother me. It can be attributed to going out to the soccer field and shooting soccer balls on net 14 days after kidney surgery.  One shot I came across my body and felt pain. That is probably what caused it, but it doesn't hurt. I feel completely normal like nothing ever happened and have spent all of 2014 with NO treatment, NO meds, and NO surgeries.  So farm 2014 has been great.  Just completed a 10 day vacation and then another 4 day vacation. Trying to enjoy what I can...never know when the next hospital visit, treatment or surgery will come up.

    Thank you all so much for your support. When I found all of you in March of 2013 at diagnosis there has been so much helpful information on here it is amazing. Talking with people going through the same thing is a major help for me and I'm sure for many people out there. Would not have been able to get to this point without all of you. Thank you very much!

  • Galrim
    Galrim Member Posts: 307
    #8
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    GSRon said:

    I suggest you first buy a

    I suggest you first buy a lottery ticket, then go have pizza and beer.!  Going from 4 MM to 5MM is within the error of the scan itself.  Keep in mind a scan is composed of slices, and just the fact that you are not exactly in the same position as the last scan can change the angle enough to cause that kind of difference.  This is why they only try to measure the largest spots they can find, as this improves the accuracy.  As for the spot in the other Kidney.. well if it did not light up, then it may just be a cyst.  Kidney cysts are very common and rarely turn in to any concern.  And yes in 90 days, they will know for sure... but as is... I suggest you go celebrate..!

    Ron

    Adding to Rons comment

    My urologist told me, when discussing my lung nodules, that size variations in nodules less than 1 cm is considered "out of scope of a diagnose", if solitary, as long as they remain under 1cm as the image composition by itself can create variations.

    /G

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