I don't know what to think

Stevewmass
Stevewmass Member Posts: 37
edited April 2013 in Kidney Cancer #1

I need a little help  with a report. Here is the history, I had RCC clear cell a 2.7 cm Stage 1 Grade 2 tumor removed by hand assisted laparoscopic surgery June 18th all clear margins, thought that was it. I would just have to keep and eye on it, scans every 6  months then every year after that. First CT scan November of 2012, I was NED YEA, second CT scan with a chest x-ray last week. The CT scan report looks great all is going well. The report on the x-ray is a different story. I see the urologist this Thursday to go over it. I think my denial is running wild with this one. The reports reads like this

EXAMINATION

Chest PA and Lateral

 

INDICATION

Renal Carcinoma

 

FINDING IMPRESSION

Heart normal size Small nodular density overlying the region of the right 6th posterior rib. question bone island, question pulmonary nodule

 In view of clinical history suggest chest CT without contrast

 

What do you think?

Help

Steve

 

«1

Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    good plan

    Go for it. Having an opportunity to monitor these things early is a huge advantage too many of us never had.

  • Stevewmass
    Stevewmass Member Posts: 37
    foxhd said:

    good plan

    Go for it. Having an opportunity to monitor these things early is a huge advantage too many of us never had.

    l phased that question wrong

    There is no question in my mind that I will be having the test. I should have asked, am I reading this right, that it have spread to my ribs and lungs or am I over reacting

  • NanoSecond
    NanoSecond Member Posts: 653
    Not sure but...

    Steve,

    I may be mistaken but what this sounds like is the possibility of a bone met that is surrounded by soft tissue.

    If so, a CT scan (with or without contrast) is likely not going to resolve the issue.  For that I think you may need to ask if a nuclear bone scan or MRI is the more appropriate test.

    Speaking of which, have you had a full body nuclear bone scan?

    Then again, I may be completely off base here.

     

    -N

  • Stevewmass
    Stevewmass Member Posts: 37

    Not sure but...

    Steve,

    I may be mistaken but what this sounds like is the possibility of a bone met that is surrounded by soft tissue.

    If so, a CT scan (with or without contrast) is likely not going to resolve the issue.  For that I think you may need to ask if a nuclear bone scan or MRI is the more appropriate test.

    Speaking of which, have you had a full body nuclear bone scan?

    Then again, I may be completely off base here.

     

    -N

    thanks

    No I haven't had a full scan didn't think that is was necessary with such an small tumor and low stage and grade. But now it is a different story 

    Thanks

  • brea588
    brea588 Member Posts: 240

    thanks

    No I haven't had a full scan didn't think that is was necessary with such an small tumor and low stage and grade. But now it is a different story 

    Thanks

    scans

    Steve after reading your post makes me wonder if my docs are taking me too lightly for follow up.  I had robotic lap neph aug 2012 for 2.4 cm tumor and  it was stage 1 grade 2 with all good margins.  Had 1st 6 month scan in mar and NED.  Now my urologist at univeersity Hosp. is leaving and he has given me to a Physicians assistant  and already have appt made for a year for an ultrasound of kidneys.  i dont feel safe with this.  Should I wait a year or find another Doc.    Hope all turns out well for u and ur being followed closely.

  • angec
    angec Member Posts: 924 Member
    It seems like maybe they are

    It seems like maybe they are just being cautious due to the rcc.  If the ct scan didnt show anything, how about suv values if any?  Maybe it is nothing but better to be sure. Dont let your mind run wild.  Please let us know what the doc says.  I had a friend who also had a nodual that they watch and it is stable and appears to be calcium.  All the best to you.  when was the last xray before this one? Maybe they can recheck that one too see if it was there before?

  • Stevewmass
    Stevewmass Member Posts: 37
    brea588 said:

    scans

    Steve after reading your post makes me wonder if my docs are taking me too lightly for follow up.  I had robotic lap neph aug 2012 for 2.4 cm tumor and  it was stage 1 grade 2 with all good margins.  Had 1st 6 month scan in mar and NED.  Now my urologist at univeersity Hosp. is leaving and he has given me to a Physicians assistant  and already have appt made for a year for an ultrasound of kidneys.  i dont feel safe with this.  Should I wait a year or find another Doc.    Hope all turns out well for u and ur being followed closely.

    First of all I don't care for

    First of all I don't care for Physicians assistants I have had some bad luck with them in the past. You have to do what you feel is best for you and express it to them they should have no problem with your request for more scans, If they do then change doctors. I will be seeing the urologist on Thursday and I am hoping for the best. I think if it has spread it is a rare case with such a small tumor.

    Good Luck

    Steve 

  • Stevewmass
    Stevewmass Member Posts: 37
    angec said:

    It seems like maybe they are

    It seems like maybe they are just being cautious due to the rcc.  If the ct scan didnt show anything, how about suv values if any?  Maybe it is nothing but better to be sure. Dont let your mind run wild.  Please let us know what the doc says.  I had a friend who also had a nodual that they watch and it is stable and appears to be calcium.  All the best to you.  when was the last xray before this one? Maybe they can recheck that one too see if it was there before?

    suv ?

    What are suv values? The ct scan was clear, the chest x-ray showed the problem and I am trying my best not to let my mind go to all the dark places. So far most of the time I 'm ok but I have my moments. Now it is just back to a waiting game just a few more days and the doctor can explain what is happening.

    Steve

  • todd121
    todd121 Member Posts: 1,448 Member

    thanks

    No I haven't had a full scan didn't think that is was necessary with such an small tumor and low stage and grade. But now it is a different story 

    Thanks

    Bone Scan

    Hi. Neil was not talking about a full body CT scan, but a full body "nuclear bone scan". It's a different kind of a test specifically looking for bone abnormalities. You would not have had one until they see something abnormal on a CT scan with regards to your bones. It's not an active scan like a CT where radiation is passed through your body. Instead, they inject a small amount of a radioactive tracer into your blood, and then a few hours later they use a special camera to detect where the tracer was taken up and where it wasn't taken up. By looking at this they can see abnormalities in the bone where you might have wasting away or other areas where you might have new growth.

    When I had my CT they found I had a small spot on my right femur, so they did this scan to see if it appeared to be RCC.

    It's not a perfect test. There can be false positives and false negatives. It turns out none of these imaging tests are perfect. In my case they could tell it was not RCC from the scan alone. My doctor said that if it was inconclusive they might have to biopsy it to know.

    They can also do a PET scan, but I had heard that the nuclear bone scan is supposed to be superior to the PET scan for this purpose. At least that's what my RCC oncologist told me.

    If all you had is an XRAY, you probably should have the CT next as they suggested. If it's on the bone, you might need the nuclear bone scan. Sometimes they can tell something just from how quickly something appeared and how fast it's changing. If you had nothing a few months ago, and now you have something, that might tell them it's likely cancerous.

    Hope it turns out to be an anomaly.

    Best wishes,

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member

    suv ?

    What are suv values? The ct scan was clear, the chest x-ray showed the problem and I am trying my best not to let my mind go to all the dark places. So far most of the time I 'm ok but I have my moments. Now it is just back to a waiting game just a few more days and the doctor can explain what is happening.

    Steve

    Blood tests...

    I'd also been told that in addition to the nuclear bone scan, that if there are mets on the bone, they can sometimes show up in some of the blood tests. I'm sorry that I can't tell you exactly which test is likely to be abnormal, but I was told that one or two of my blood tests that they do when they do a full blood workup would most likely be abnormal if I had a met on my femur. I was told this by one of my RCC oncologists.

    Todd

  • NanoSecond
    NanoSecond Member Posts: 653
    todd121 said:

    Blood tests...

    I'd also been told that in addition to the nuclear bone scan, that if there are mets on the bone, they can sometimes show up in some of the blood tests. I'm sorry that I can't tell you exactly which test is likely to be abnormal, but I was told that one or two of my blood tests that they do when they do a full blood workup would most likely be abnormal if I had a met on my femur. I was told this by one of my RCC oncologists.

    Todd

    Bone mets

    Hi Todd,

    Likely they were referring to using the level of calcium in the blood as a clue to possible bone mets.

     

  • NanoSecond
    NanoSecond Member Posts: 653
    todd121 said:

    Bone Scan

    Hi. Neil was not talking about a full body CT scan, but a full body "nuclear bone scan". It's a different kind of a test specifically looking for bone abnormalities. You would not have had one until they see something abnormal on a CT scan with regards to your bones. It's not an active scan like a CT where radiation is passed through your body. Instead, they inject a small amount of a radioactive tracer into your blood, and then a few hours later they use a special camera to detect where the tracer was taken up and where it wasn't taken up. By looking at this they can see abnormalities in the bone where you might have wasting away or other areas where you might have new growth.

    When I had my CT they found I had a small spot on my right femur, so they did this scan to see if it appeared to be RCC.

    It's not a perfect test. There can be false positives and false negatives. It turns out none of these imaging tests are perfect. In my case they could tell it was not RCC from the scan alone. My doctor said that if it was inconclusive they might have to biopsy it to know.

    They can also do a PET scan, but I had heard that the nuclear bone scan is supposed to be superior to the PET scan for this purpose. At least that's what my RCC oncologist told me.

    If all you had is an XRAY, you probably should have the CT next as they suggested. If it's on the bone, you might need the nuclear bone scan. Sometimes they can tell something just from how quickly something appeared and how fast it's changing. If you had nothing a few months ago, and now you have something, that might tell them it's likely cancerous.

    Hope it turns out to be an anomaly.

    Best wishes,

    Todd

    PET scans and RCC

    Generally PET scans are not very useful with renal cancer because most RCC tumors and/or mets do not manifest a high level of "the Warburg Effect".

    The Warburg Effect is the key to how a PET scan works to reveal a tumor in the body. In a PET scan a radioactive medicine is first tagged to a natural chemical - usually glucose, water, or ammonia. This tagged natural chemical is known as a radiotracer. This radiotracer is then inserted into the body.

     

    Inside the body the radiotracer then goes to those areas that normally utilize that natural chemical. For example, FDG (F-18 Fluorodeoxyglucose - a radioactive drug) is first tagged to glucose to make it into a radiotracer. The glucose then goes to those parts of the body that use glucose primarily for energy. The FDG can reveal a tumor by revealing those areas that are soaking up abnormally high levels of glucose. Most tumors soak up high levels of glucose because aerobic glycolysis (see below) is a very inefficient source of energy as compared to oxidative phosphorylation (i.e. “normal” respiration of oxygen).

    Dr. Warburg found that if you took any “healthy” cell and slowly deprived it of its normal level of oxygen, at a certain point - around 30 to 35% of normal - the cell would do one of two things.  It would either die - or it would turn cancerous.  That is, in its struggle to stay alive it would "flip" from its normal mode of getting its energy from respiration (the "slow" burning of oxygen) – via a process called oxidative phosphorylation - to primarily getting its source of energy from the fermentation of glucose – via a process called aerobic glycolysis. He also discovered that once a cell had "flipped” its metabolism in this manner it could never be flipped back. There was no possibility of a tumor cell returning back to its "normal" oxygen-based respiration and so there was no possibility of a cancerous cell ever being restored to health again.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    My experience

    In early February I had a bad cough and was given a chest Xray.

    It came back normal. Last month I had a CT of the chest without contrast and it showed two 4mm nodules. I went over this with a Pulmonologist last week Basically nodules that small do not show up on a Chest x-ray. Additionalli the nodules were only 1/2 the size where there would be a concern for RCC metes.

     

    When I see my Urologist in a few months I will bring both the XRAY and CT films and reports with me to see if he has any concern. In reading Steve's post the concern for RCC could be bacause of his history of RCC. At least that is what we hope it is and nothing more.

     

    Icemantoo

  • Stevewmass
    Stevewmass Member Posts: 37
    icemantoo said:

    My experience

    In early February I had a bad cough and was given a chest Xray.

    It came back normal. Last month I had a CT of the chest without contrast and it showed two 4mm nodules. I went over this with a Pulmonologist last week Basically nodules that small do not show up on a Chest x-ray. Additionalli the nodules were only 1/2 the size where there would be a concern for RCC metes.

     

    When I see my Urologist in a few months I will bring both the XRAY and CT films and reports with me to see if he has any concern. In reading Steve's post the concern for RCC could be bacause of his history of RCC. At least that is what we hope it is and nothing more.

     

    Icemantoo

    Thanks everyone , you all

    Thanks everyone , you all have given me great info. Thursday I  will see the urologist and will let you  what he has to say

  • Stevewmass
    Stevewmass Member Posts: 37
    icemantoo said:

    My experience

    In early February I had a bad cough and was given a chest Xray.

    It came back normal. Last month I had a CT of the chest without contrast and it showed two 4mm nodules. I went over this with a Pulmonologist last week Basically nodules that small do not show up on a Chest x-ray. Additionalli the nodules were only 1/2 the size where there would be a concern for RCC metes.

     

    When I see my Urologist in a few months I will bring both the XRAY and CT films and reports with me to see if he has any concern. In reading Steve's post the concern for RCC could be bacause of his history of RCC. At least that is what we hope it is and nothing more.

     

    Icemantoo

    Thanks everyone , you all

    Thanks everyone , you all have given me great info. Thursday I  will see the urologist and will let you  what he has to say

  • Stevewmass
    Stevewmass Member Posts: 37
    icemantoo said:

    My experience

    In early February I had a bad cough and was given a chest Xray.

    It came back normal. Last month I had a CT of the chest without contrast and it showed two 4mm nodules. I went over this with a Pulmonologist last week Basically nodules that small do not show up on a Chest x-ray. Additionalli the nodules were only 1/2 the size where there would be a concern for RCC metes.

     

    When I see my Urologist in a few months I will bring both the XRAY and CT films and reports with me to see if he has any concern. In reading Steve's post the concern for RCC could be bacause of his history of RCC. At least that is what we hope it is and nothing more.

     

    Icemantoo

    Thanks everyone , you all

    Thanks everyone , you all have given me great info. Thursday I  will see the urologist and will let you  what he has to say

  • todd121
    todd121 Member Posts: 1,448 Member

    PET scans and RCC

    Generally PET scans are not very useful with renal cancer because most RCC tumors and/or mets do not manifest a high level of "the Warburg Effect".

    The Warburg Effect is the key to how a PET scan works to reveal a tumor in the body. In a PET scan a radioactive medicine is first tagged to a natural chemical - usually glucose, water, or ammonia. This tagged natural chemical is known as a radiotracer. This radiotracer is then inserted into the body.

     

    Inside the body the radiotracer then goes to those areas that normally utilize that natural chemical. For example, FDG (F-18 Fluorodeoxyglucose - a radioactive drug) is first tagged to glucose to make it into a radiotracer. The glucose then goes to those parts of the body that use glucose primarily for energy. The FDG can reveal a tumor by revealing those areas that are soaking up abnormally high levels of glucose. Most tumors soak up high levels of glucose because aerobic glycolysis (see below) is a very inefficient source of energy as compared to oxidative phosphorylation (i.e. “normal” respiration of oxygen).

    Dr. Warburg found that if you took any “healthy” cell and slowly deprived it of its normal level of oxygen, at a certain point - around 30 to 35% of normal - the cell would do one of two things.  It would either die - or it would turn cancerous.  That is, in its struggle to stay alive it would "flip" from its normal mode of getting its energy from respiration (the "slow" burning of oxygen) – via a process called oxidative phosphorylation - to primarily getting its source of energy from the fermentation of glucose – via a process called aerobic glycolysis. He also discovered that once a cell had "flipped” its metabolism in this manner it could never be flipped back. There was no possibility of a tumor cell returning back to its "normal" oxygen-based respiration and so there was no possibility of a cancerous cell ever being restored to health again.

    Scans

    Thanks Neil. I think I got confused a bit between the two techniques. The bone scan doesn't use a radioactive tracer, but does use a radioactive substance and uses a camera to view the relative uptake of the radioactive substance? The PET scan uses the tracer as you described. This explanation really helped.

    I had come across a paper at some point that discussed the reliability of these tests. They are suprisingly unreliable. One thing I seem to remember from reading the paper, was that things the bone scan misses tend to be things the PET would catch and vise versa. However, doctors rarely prescribe both tests from what I've noticed, even thought that would seem to give the best results. I suppose that's because of cost considerations?

    As I recall, the PET scan is better at viewing tumors that are destructive to the bone (lytic lesions?), whereas the bone scan is better at picking up sclerotic lesions.

    But I thought I had read somewhere that 60% of RCC bone mets are lytic? Because RCC is so agressive. I did read somewhere that some percentage of RCC mets are lytic and some other percentage (not a small percentage) are sclerotic, and that is what becomes difficult telling from imaging if something is RCC (or even cancer) and a biopsy might be required. On the other hand, my oncologist at City of Hope told me that their radiologists see so much cancer that they get pretty good at looking at it and telling when it is and when it isn't cancer. It implied to me that radiologists at non-cancer centers may not be so good at telling what they are looking at (even though I'm pretty sure they still see the anomalies and report them accurately).

    I read all these papers, and then a month later I've gotten myself all confused. I'm sure lucky I'm not treating myself.

    The imaging paper was very interesting, though. I'll see if I can find it again and post a link. It was an article talking about the challenges of using imaging to diagnose RCC (as I recall) and had looked into failure rates of different types of diagnoses based on imaging. It also went into the difficulties of measuring tumor load in evaluating whether drugs were being effective or not in treatment.

    Todd

  • NanoSecond
    NanoSecond Member Posts: 653
    todd121 said:

    Scans

    Thanks Neil. I think I got confused a bit between the two techniques. The bone scan doesn't use a radioactive tracer, but does use a radioactive substance and uses a camera to view the relative uptake of the radioactive substance? The PET scan uses the tracer as you described. This explanation really helped.

    I had come across a paper at some point that discussed the reliability of these tests. They are suprisingly unreliable. One thing I seem to remember from reading the paper, was that things the bone scan misses tend to be things the PET would catch and vise versa. However, doctors rarely prescribe both tests from what I've noticed, even thought that would seem to give the best results. I suppose that's because of cost considerations?

    As I recall, the PET scan is better at viewing tumors that are destructive to the bone (lytic lesions?), whereas the bone scan is better at picking up sclerotic lesions.

    But I thought I had read somewhere that 60% of RCC bone mets are lytic? Because RCC is so agressive. I did read somewhere that some percentage of RCC mets are lytic and some other percentage (not a small percentage) are sclerotic, and that is what becomes difficult telling from imaging if something is RCC (or even cancer) and a biopsy might be required. On the other hand, my oncologist at City of Hope told me that their radiologists see so much cancer that they get pretty good at looking at it and telling when it is and when it isn't cancer. It implied to me that radiologists at non-cancer centers may not be so good at telling what they are looking at (even though I'm pretty sure they still see the anomalies and report them accurately).

    I read all these papers, and then a month later I've gotten myself all confused. I'm sure lucky I'm not treating myself.

    The imaging paper was very interesting, though. I'll see if I can find it again and post a link. It was an article talking about the challenges of using imaging to diagnose RCC (as I recall) and had looked into failure rates of different types of diagnoses based on imaging. It also went into the difficulties of measuring tumor load in evaluating whether drugs were being effective or not in treatment.

    Todd

    Full Body Nuclear Bone Scan

    Hi Todd,

    I think it is accurate to say that both the PET scan and the full body nuclear bone scan just use different kinds of radiotracers in order to work.  This is not an area I have done much research in, but WIKIPEDIA gives a good introduction to the topic.  The entry also explains the relative advantages and disadvantages of each kind of imaging system:

    http://en.wikipedia.org/wiki/Bone_scintigraphy

    Although my bone mets were revealed by a full body nuclear bone scan (and they were all seen to be lytic lesions), I also consult with a bone cancer specialist who insists on taking good 'ole X-Rays of only those areas where I have mets.  The full body scan revealed "activity" where there were lesions but the X-Rays showed whether or not that activity was due to tumors expanding or to new bone growth.  So far (knock wood) it has been only the latter for me.

  • todd121
    todd121 Member Posts: 1,448 Member

    Full Body Nuclear Bone Scan

    Hi Todd,

    I think it is accurate to say that both the PET scan and the full body nuclear bone scan just use different kinds of radiotracers in order to work.  This is not an area I have done much research in, but WIKIPEDIA gives a good introduction to the topic.  The entry also explains the relative advantages and disadvantages of each kind of imaging system:

    http://en.wikipedia.org/wiki/Bone_scintigraphy

    Although my bone mets were revealed by a full body nuclear bone scan (and they were all seen to be lytic lesions), I also consult with a bone cancer specialist who insists on taking good 'ole X-Rays of only those areas where I have mets.  The full body scan revealed "activity" where there were lesions but the X-Rays showed whether or not that activity was due to tumors expanding or to new bone growth.  So far (knock wood) it has been only the latter for me.

    X-Rays

    Hi Neil,

    That's something my uncle said when I was getting the bone scan done. He said if it were him, he'd probably just get an X-ray to start with and have a look. He said sometimes you can tell quite a bit from just a good'ole X-ray.

    Todd

  • Stevewmass
    Stevewmass Member Posts: 37

    Thanks everyone , you all

    Thanks everyone , you all have given me great info. Thursday I  will see the urologist and will let you  what he has to say

    Well, the hour and a half I

    Well, the hour and a half I spent today in the Urologist office I will never get back. After waiting for over an hour, I finally go to talk to him, a lot of good that did me, it's on to more tests. They can't tell what is going on with the x-ray but there is something there, not sure if it is the rib, the lung  of dust on the x-ray machine. I was able to get that info off the report, so my visit today was maybe to help him pay his mortgage payment. They will be calling me next week for another CT scan.

    Steve