just a curious question - advice

aamdsi
aamdsi Member Posts: 284
in Kidney Cancer #1

Went for my 3 month post-op a couple weeks ago.  Blood tests came back clean and Dr. said all looked great and that he'd see me again in Sept. for my 6 month saying that I would get a chest x-ray then as well.  When I asked about a CT he said he didn't see a need until my 1 year since everything came back clear and that they got it all in March.  But if it would make me feel beter (not saying that in a condescending way at all), he'd be happy to schedule one. 

Part of me says, "YAY!!!!", another part says, "please schedule"....

What do you all think?

Comments

  • APny
    APny Member Posts: 1,995 Member
    #2
    I know the common wisdom on

    I know the common wisdom on this forum is to get CT scans but I'm going by my doc at Sloan Kettering and having a chest x-ray at six months. I guess I would go with whatever makes you feel more secure and comfortable. If I weren't comfortable with the x-ray I'd insist on a CT scan. 

  • nsb748
    nsb748 Member Posts: 89
    #3
    APny said:

    I know the common wisdom on

    I know the common wisdom on this forum is to get CT scans but I'm going by my doc at Sloan Kettering and having a chest x-ray at six months. I guess I would go with whatever makes you feel more secure and comfortable. If I weren't comfortable with the x-ray I'd insist on a CT scan. 

    My urologist also told me he

    My urologist also told me he would only want to do an x-ray at 6 months.  His reasoning was that since I had a small tumor (2.00 cm) he is not that concerned with mets, and any reoccurence in the kidney would likely not be visible  for at least a year. 

    I went to a kidney cancer expert/oncologist at the Cleveland Clinic for a second opinion.  (He helps with and/or runs a lot of the trials we read about, so he is legit)

    He told me that an X-ray at 6 months was fine for small tumors like mine, but that if it made me feel better to do a CT than to ask my doctor for one. 

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #4
    nsb748 said:

    My urologist also told me he

    My urologist also told me he would only want to do an x-ray at 6 months.  His reasoning was that since I had a small tumor (2.00 cm) he is not that concerned with mets, and any reoccurence in the kidney would likely not be visible  for at least a year. 

    I went to a kidney cancer expert/oncologist at the Cleveland Clinic for a second opinion.  (He helps with and/or runs a lot of the trials we read about, so he is legit)

    He told me that an X-ray at 6 months was fine for small tumors like mine, but that if it made me feel better to do a CT than to ask my doctor for one. 

    My 2 cents

    For a few years my Urologists ordered chest x rays. Fast forward another 8 years and my ENT ordered chest CT for other issues. This is a more expensive test and covered by Medicare. It will show harmless nodes on the lung too small for a chest x ray to pick up. If the nodes are large enough (8mm) they will show up on a chest x ray as wel.

     

    Icemantoo

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #5
    icemantoo said:

    My 2 cents

    For a few years my Urologists ordered chest x rays. Fast forward another 8 years and my ENT ordered chest CT for other issues. This is a more expensive test and covered by Medicare. It will show harmless nodes on the lung too small for a chest x ray to pick up. If the nodes are large enough (8mm) they will show up on a chest x ray as wel.

     

    Icemantoo

    Who's the monitoring Dr.

    Urologist, Oncologist, Surgeon, or PC?  Personally, I have my oncologist who orders any follow up tests (it's been 8 years) and my PC sees me regarding any other issues such as the high blood pressure (which we know is bad for one kidney.)

    At Dx in 2006, my kidney cancer had already mets to the liver and a set of nodes, which were all or partially removed. A chest x-ray seems kind of "feeble" to follow up on kidney cancer.  After I'd been through 3-4 years of regular CT's the oncologist wanted to reduce the amount of radiation I was receiving.  He eventually switched to alternating a CT with a combination chest x-ray and an abdominal ultrasound.  After the first xray/US combo, there was a baseline for comparison on any future tests like this.

    And also from experience, don't ever fall for the "I think we got it all" from the surgeon.  Two subsequent recurrences, found in nodes that hadn't even begun to enlarge in 2006, were found by CT comparisons in both 2007 and 2008.

    I don't want to scare you, but you need to ask questions. Be vigilant, question the doctor on what his protocol is and what study he's basing it on.  Kidney cancer doesn't necessarily spread to the lungs, although they can be a prime site.

    You are just starting your journey as a SURVIVOR.  Make sure you stay that way.  Good Luck and all best wishes.

    Donna

  • Billy's Wife
    Billy's Wife Member Posts: 52
    #6
    I don't want to scare you

    I don't want to scare you either, it is all about what you are comfortable with.  Like you (and every human I think) my husband was thrilled when they advised him to cut back on his CT to one year.  That was after two years of CT with contrast every three months that were all NED.  Unfortunately that was the year that it came back.  It was in the bone not the lungs.  It is not always the lungs.  The CT of the abdomen, chest and pelvis would have caught it sooner than it did.  At one year the tumor in his pelvis was 7cm., larger than it would have been at 3 months or 6 months.

    I am all for err on the side of caution.

    Trust your gut.

    Best Wishes

    Arleen

     

     

  • dhs1963
    dhs1963 Member Posts: 513
    #7
    A few questions:

    1) What was the grade of the original tumor? I ask because my tumor was T1B, but grade 4 for sarcomitoid differentiation

    2) Did you have a chest CT at diagnosis? I did not.  at six months, I was part of a study, which did a CT.  They found a met in my lung.  We do not know if the 1.5cm tumor in my lung was present at initial DX.

    After having the met, my rules changed.

    If I were you, I would want to get an initial ct of the lung....

  • aamdsi
    aamdsi Member Posts: 284
    #8
    dhs1963 said:

    A few questions:

    1) What was the grade of the original tumor? I ask because my tumor was T1B, but grade 4 for sarcomitoid differentiation

    2) Did you have a chest CT at diagnosis? I did not.  at six months, I was part of a study, which did a CT.  They found a met in my lung.  We do not know if the 1.5cm tumor in my lung was present at initial DX.

    After having the met, my rules changed.

    If I were you, I would want to get an initial ct of the lung....

    T1b

    Was my grade, rather large 5 cm.  I honestly don't remember if they did a chest CT 8-(  It was 2 am when I got the CT, an I guess I never even thought to ask.

    Donna, my Dr./surgeon is a urologist who specializes in kindey and prostrate cancers.

    I am terrified not knowing.  My husband doesn't like the fact that I got shot up with radioactive stuff for it. I am one to want to believe that I can wait the year....

    Guess I don't have to say anything now, but ...once again not knowing. Think will ask for one. 

    damn now crying.  Am sorry just ALL OF US having to go through this SUCKS!  I hate it! 

    okay enoug. 8-)  Thank you all for the advice

  • dhs1963
    dhs1963 Member Posts: 513
    #9
    aamdsi said:

    T1b

    Was my grade, rather large 5 cm.  I honestly don't remember if they did a chest CT 8-(  It was 2 am when I got the CT, an I guess I never even thought to ask.

    Donna, my Dr./surgeon is a urologist who specializes in kindey and prostrate cancers.

    I am terrified not knowing.  My husband doesn't like the fact that I got shot up with radioactive stuff for it. I am one to want to believe that I can wait the year....

    Guess I don't have to say anything now, but ...once again not knowing. Think will ask for one. 

    damn now crying.  Am sorry just ALL OF US having to go through this SUCKS!  I hate it! 

    okay enoug. 8-)  Thank you all for the advice

    T1b was the stage

    The grade is the Furhman number; and tells how agressive the tumor is.  This differs from the Stage (T1b).

     

    The CT radiation is not injected, but rather from the X-rays which make up the CT.  The only tests where they inject radioactive material is bone and PET scans.

     

    THe main think is at that size, particularly if it is a high grade, it can metastistize.  I was about that size...but grade 4.  The pathology report should mention a stage and grade.  If the grade is low, you are probably ok.  

    If you look at statsitics, at stage 1B grade 1 or 2, there is a 97% chance that you are done with it.  At Grade 4/Sarcomitoid (what I have), it drops to about  70-80%.

  • APny
    APny Member Posts: 1,995 Member
    #10
    dhs1963 said:

    T1b was the stage

    The grade is the Furhman number; and tells how agressive the tumor is.  This differs from the Stage (T1b).

     

    The CT radiation is not injected, but rather from the X-rays which make up the CT.  The only tests where they inject radioactive material is bone and PET scans.

     

    THe main think is at that size, particularly if it is a high grade, it can metastistize.  I was about that size...but grade 4.  The pathology report should mention a stage and grade.  If the grade is low, you are probably ok.  

    If you look at statsitics, at stage 1B grade 1 or 2, there is a 97% chance that you are done with it.  At Grade 4/Sarcomitoid (what I have), it drops to about  70-80%.

    I think the follow up

    I think the follow up protocol varies with stage but as I said, the ultimate decision should be yours. If you’re not comfortable with the type and frequency of follow up then you should request a change. Mine was stage 1a, 3.4 cm, and my surgeon at Sloan Kettering who is a urologic oncologist said I’ll have US and X-ray as follow up after six months. He’s well known in the field, runs several of the studies, and is considered at expert in RCC, so I’m comfortable with his follow up protocol and won’t insist on CT scans instead. But if I weren’t comfortable, then I most certainly would.  

  • aamdsi
    aamdsi Member Posts: 284
    #11
    trust

    I trust my Dr. he's very well known here (U of MI)  and a urologist/kindey/prostrate cancer specailist - but the fear is still there.

    My fuhrman rating said, "NA" on my pathology report. Interesting, so am taking it to mean less than 1?

    He also said an US with the xray.

     

    As all of us know, it's the fact we can't see what's happening inside. Unlike a rash or even (horrors) skin cancer - ours is deep within with little or no signs. 

    Sigh.  I can wait until the "last" minute to decide.  It would be one with the IV contrast.  I can also email my Dr. with any fears/concerns which is nice. 

    Thank you all for adivice and listening

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #12
    aamdsi said:

    trust

    I trust my Dr. he's very well known here (U of MI)  and a urologist/kindey/prostrate cancer specailist - but the fear is still there.

    My fuhrman rating said, "NA" on my pathology report. Interesting, so am taking it to mean less than 1?

    He also said an US with the xray.

     

    As all of us know, it's the fact we can't see what's happening inside. Unlike a rash or even (horrors) skin cancer - ours is deep within with little or no signs. 

    Sigh.  I can wait until the "last" minute to decide.  It would be one with the IV contrast.  I can also email my Dr. with any fears/concerns which is nice. 

    Thank you all for adivice and listening

    When making a decision like

    When making a decision like this, we would ask ourselves how would we deal with bad news if we decided to wait.  Could we cope with making what we would perceive as the wrong decision, after the fact.   Recently my husband wanted to stop inlyta for awhile.  He has had no evidence of metabolic activity in his bone mets for over a year.  The doctor thought it was a bad idea.  My husband decided not to take a break because he wouldn't want to feel awful if his next scan was bad and he would live with regret.  These decisions are personal choices and are difficult to make.  We would prefer to be cautious and try to have no regrets.

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