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Follow up Appointments/ Scans ?

nsb748
nsb748 Member Posts: 89
edited April 2014 in Kidney Cancer #1

Hi everyone. 

I had an open partial back on 3/6/2014 and I am slowly getting on with my life.  (actually started back at work today) I was looking to get some opinions on follow up scans based on your experiences.  My surgeon, seems to think I would be fine with bloodwork and a chest x-ray six months post-surgery, and then another x-ray, CT and bloodwork at two years.  His logic is that I am a very low risk of mets, and any reoccurence would grow so slow that he wouldnt be able to see it for two years anyway.  I disagree with him, but I figured I would get some more facts before I push the issue with him and/or get myself an oncologist.  Although my tumor was small, it did extend microscopically beyond the renal capsule.  My surgeon says that this is not a concern, but the fact that it was not fully contained freaks me out.  I would think I would at least need one CT scan per year for three years.  Below is the relevant data from my path report that I copied over.  I think my Urologist was great for the surgery, but I think he is out of his element when trying to reccomend follow up. 

As a follow up question to that, If I need to get an Oncologist who specializes in RCC, should I find them on my own, or do I have to get a referral from my Urologist?

Type: Clear Cell RCC

Sarcomatoid features: Not Identified

Tumor Size: 2.2 cm

Tumor Focality: Unifocal

Histologic Grade: Fuhrman Grade 2

Tumor Extension: Beyond Renal Capsule (Microscopic)

Parenchymal Margin: Negative

Perinephric Fat Margin: N/A

Renal Capsule Margin: Positive

Adrenal Gland: Not Included

Lymph Nodes: Not Included

pT1a, pNX (Stage 1)

 The specimen consists of an irregular portion of tan tissue measuring 3 x 2.5 x 2.6 cm. One surface is smooth , apparently representing therenal capsule. The surface exudes a small amount of golden yellow material . The renal parenchymal resection margin is inked in black .Sectioning reveals a golden yellow and hemorrhagic mass measuring 2.1 x 1.5 x 2.2 cm . The contents of the mass are exuding onto the free capsular surface of the kidney

 

 

 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,358 **
    A couple of thoughts

    NSB,

    Bassed upon your path report you are definately low risk. 

    Based upon my experience the follow up appears much less than the standard of care that I and what I observed other members had.That is not to say that there maybe new guidelines out there. There also could be a risk factor you have if you have had a lot of scans. It also could be a function of what your insurance allows and or you are in a managed heath care plan. You may want to seek out a consult with an Oncologist which may or may not be available. It may be that your surgeon is not a Urologist and that you may want a referral to a Urologist preferrably one of the younger ones who specializes in RCC surgery.

     

    Hope this helps.

     

    Icemantoo

  • nsb748
    nsb748 Member Posts: 89
    icemantoo said:

    A couple of thoughts

    NSB,

    Bassed upon your path report you are definately low risk. 

    Based upon my experience the follow up appears much less than the standard of care that I and what I observed other members had.That is not to say that there maybe new guidelines out there. There also could be a risk factor you have if you have had a lot of scans. It also could be a function of what your insurance allows and or you are in a managed heath care plan. You may want to seek out a consult with an Oncologist which may or may not be available. It may be that your surgeon is not a Urologist and that you may want a referral to a Urologist preferrably one of the younger ones who specializes in RCC surgery.

     

    Hope this helps.

     

    Icemantoo

    Thanks for the reply.  My

    Thanks for the reply.  My surgeon is a urologist who did a fellowship in urological oncology.  He told me he has done "nearly 1000" nepherectomies (both partial, and radical combined), so you would think he knows what he is doing, but who knows.  I don't know what percentage of those people had metastasis or reoccurence,

    Maybe I am making something out of nothing, but it just seemed like there should be a more active follow-up rather than just playing the odds.  This is a sneaky cancer after all

    Does anyone know if there is some sort of "standard procedure/ timeline" for follow-up care?

  • APny
    APny Member Posts: 1,995
    nsb748 said:

    Thanks for the reply.  My

    Thanks for the reply.  My surgeon is a urologist who did a fellowship in urological oncology.  He told me he has done "nearly 1000" nepherectomies (both partial, and radical combined), so you would think he knows what he is doing, but who knows.  I don't know what percentage of those people had metastasis or reoccurence,

    Maybe I am making something out of nothing, but it just seemed like there should be a more active follow-up rather than just playing the odds.  This is a sneaky cancer after all

    Does anyone know if there is some sort of "standard procedure/ timeline" for follow-up care?

    I’m two weeks past an open

    I’m two weeks past an open partial nephrectomy (3.4 cm tumor). My surgeon at Sloan Kettering recommended that I have a blood test in April and a chest x-ray and ultrasound in six months. I know CT scans are more the norm on this forum, and more frequently than every six months, but I’m not sure all that radiation is a good thing. So I’m comfortable with this and as he’s a urologic oncologist I trust in his experience and judgment.

  • nsb748
    nsb748 Member Posts: 89
    APny said:

    I’m two weeks past an open

    I’m two weeks past an open partial nephrectomy (3.4 cm tumor). My surgeon at Sloan Kettering recommended that I have a blood test in April and a chest x-ray and ultrasound in six months. I know CT scans are more the norm on this forum, and more frequently than every six months, but I’m not sure all that radiation is a good thing. So I’m comfortable with this and as he’s a urologic oncologist I trust in his experience and judgment.

    APny,
    That is good to see a

    APny,

    That is good to see a little bit of consistancy between you and I at least. 

    How are you healing up? 

    I am feeling good other than an occasional burning/tingling sensation on my skin away from the incision, which I assume is nerves putting themselves back together.  I'm anxious to get back in the gym and hit the weights, but i think I will wait a little longer. 

  • APny
    APny Member Posts: 1,995
    nsb748 said:

    APny,
    That is good to see a

    APny,

    That is good to see a little bit of consistancy between you and I at least. 

    How are you healing up? 

    I am feeling good other than an occasional burning/tingling sensation on my skin away from the incision, which I assume is nerves putting themselves back together.  I'm anxious to get back in the gym and hit the weights, but i think I will wait a little longer. 

    Glad to hear you're feeling

    Glad to hear you're feeling well. I'm doing fine, considering. Pain is less and less each day. I'm pretty lightheaded today; I think my hemoglobin is still low. So I'm taking iron. Definitely hold off on the gym. You don't want a hernia.

  • donna_lee
    donna_lee Member Posts: 1,018
    APny said:

    Glad to hear you're feeling

    Glad to hear you're feeling well. I'm doing fine, considering. Pain is less and less each day. I'm pretty lightheaded today; I think my hemoglobin is still low. So I'm taking iron. Definitely hold off on the gym. You don't want a hernia.

    Xray/US vs CT

    Guess I'v survived long enough to be experienced with both.  Began the journey in 2006 at Stage IV- T2bN2M1, Fuhrman III-IV, Clear Cell, which had already mets to Liver and nodes.  Recurrences in single nodes in 2007 and 2008.

    Many CT's between the first Dx and about 2011, when the oncologist felt we should alternate with a Chest X-ray and Abd/Pelvic US, based upon the amount of radiation I was receiving.  Except enlarging nodes were found in the thyroid.....eventually determined to be benign.  So it's been mostly CT's at 6 month intervals.  And an appointment at the end of April will tell me the next step.

    On a balance scale:  CT- easy, barium sulfate- nasty, peace of mind-priceless.

    Aren't we glad there are options for testing; several meds that have proved effective; and this board for us to rant and rave.

    My best friend from college was born today, only a few years ago.  So Happy Birthday, Patty, a two time survivor of breast cancer.

    Donna

  • a_oaklee
    a_oaklee Member Posts: 566
    scan frequency/path report

    Hi.  Welcome.  I'm happy for you that you are doing well.  A couple of comments:

    I've read in the literature offered on this site that standard of care is CT scans at 6 months for 2 years and then annually after that.  When my husbands scans were done at 6 weeks and also at 3 month intervals it was because he is Stage 4, and they wanted to see how well the targeted therapy is working to shrink the mets. 

    In our experience, when we wanted to see a new specialist, we asked our primary care physician to set it up.  That works great for us.  We had trouble trying to get one specialist to let go and refer us to another specialist.  It was because they just didn't share our concern, or thought that they could handle it.  Who knows.

    Path report.  It looks great to me.  I was wondering if the pathologist reported on the margins of the excised specimen. 

    I hope you have a very speedy recovery.

    Annie

  • nsb748
    nsb748 Member Posts: 89
    a_oaklee said:

    scan frequency/path report

    Hi.  Welcome.  I'm happy for you that you are doing well.  A couple of comments:

    I've read in the literature offered on this site that standard of care is CT scans at 6 months for 2 years and then annually after that.  When my husbands scans were done at 6 weeks and also at 3 month intervals it was because he is Stage 4, and they wanted to see how well the targeted therapy is working to shrink the mets. 

    In our experience, when we wanted to see a new specialist, we asked our primary care physician to set it up.  That works great for us.  We had trouble trying to get one specialist to let go and refer us to another specialist.  It was because they just didn't share our concern, or thought that they could handle it.  Who knows.

    Path report.  It looks great to me.  I was wondering if the pathologist reported on the margins of the excised specimen. 

    I hope you have a very speedy recovery.

    Annie

    Hi Annie,
    They did report on

    Hi Annie,

    They did report on the margins.  I was negative on the area where he actually did the cutting, but positive on the "exterior" portion of the tumor, which according to the surgeon is no big deal.  In addition to being small, my tumor was practically sitting on the surface of my kidney, so they only had to take less than 5% of my kidney.  The part with the positive margin is the portion that was right up against the renal capsule. 

     

  • a_oaklee
    a_oaklee Member Posts: 566
    nsb748 said:

    Hi Annie,
    They did report on

    Hi Annie,

    They did report on the margins.  I was negative on the area where he actually did the cutting, but positive on the "exterior" portion of the tumor, which according to the surgeon is no big deal.  In addition to being small, my tumor was practically sitting on the surface of my kidney, so they only had to take less than 5% of my kidney.  The part with the positive margin is the portion that was right up against the renal capsule. 

     

    my report

    OK.  My husbands report.  On his report they comment on margins of anatomical areas, AND they commented on margins of the tissue sample.  Two types of margins.  For instance, (on our report) it said "negative" regarding invasion into renal capsule, while it said "positive" for invasion into renal veins.  Then they reported that all margins of the excised sample were negative.  They also stated the distance of the cancer cells from the edges of the cut sample.

    I am not a medical person and I really don't want to cause you any distress in any way.  I'm just wondering about this and if it helps you that would be good too.  If my comment upsets you, I sincerely apologize for that.   I will reiterate that I think your report is great!  We would have been happy with getting those results ourselves. 

  • nsb748
    nsb748 Member Posts: 89
    a_oaklee said:

    my report

    OK.  My husbands report.  On his report they comment on margins of anatomical areas, AND they commented on margins of the tissue sample.  Two types of margins.  For instance, (on our report) it said "negative" regarding invasion into renal capsule, while it said "positive" for invasion into renal veins.  Then they reported that all margins of the excised sample were negative.  They also stated the distance of the cancer cells from the edges of the cut sample.

    I am not a medical person and I really don't want to cause you any distress in any way.  I'm just wondering about this and if it helps you that would be good too.  If my comment upsets you, I sincerely apologize for that.   I will reiterate that I think your report is great!  We would have been happy with getting those results ourselves. 

    No apologies needed Annie.

    No apologies needed Annie.  You haven't said anything even remotely offensive.   the pathology reports are another area where some standardization would be nice.  My pathology report will be different than a lot of people because of the tumor location.  Mine was basically right underneath the renal capsule which is basically the "skin" of the kidney.  Because mine was right up against the capsule, I  would compare the pice that was cut out to a piece of pie.  The two slices from the crust to the middle have negative margins, but the "crust" of the piece has a positive margin

    i wish my report told the distance, I would be curious to know.

  • NanoSecond
    NanoSecond Member Posts: 653
    Better safe than sorry

    You are correct.  Your urologist is out of his element.  You need to be under the care of an oncologist who is experienced with RCC.

    Your odds are good.  But that report of positive margins in the renal capsule should not be downplayed.

    I would bet that an experienced oncologist will suggest CT-scans every 6 months (or shorter) for 2 years.  If you remain NED in that time period then he might suggest only one CT-scan per year from then on.  Chest X-rays and Ultrasound are not acceptable while you are in this observational mode.

    You certainly can ask your urologist for a recommendation.  If you get further push-back from him it may help you understand that he should no longer be in charge of your health going forward.  His work is done.

    Just my 2 cents.

  • brea588
    brea588 Member Posts: 240

    Better safe than sorry

    You are correct.  Your urologist is out of his element.  You need to be under the care of an oncologist who is experienced with RCC.

    Your odds are good.  But that report of positive margins in the renal capsule should not be downplayed.

    I would bet that an experienced oncologist will suggest CT-scans every 6 months (or shorter) for 2 years.  If you remain NED in that time period then he might suggest only one CT-scan per year from then on.  Chest X-rays and Ultrasound are not acceptable while you are in this observational mode.

    You certainly can ask your urologist for a recommendation.  If you get further push-back from him it may help you understand that he should no longer be in charge of your health going forward.  His work is done.

    Just my 2 cents.

    scanxiety

    I go thur apr 10 for my 18 month check up.  Had Ct scan at 6 months and now a year later they are going to do ultrasound only.  My tumor was small 2.5  stage 1 grade 2.  I dont  really know how I feel about only ultrasound since I have had colon cancer 8 months ago that had not spread.  But I will be seeing a new urologist as my other has left the university that I went too.  So asking for your thoughts and prayers that all turns out well.   

  • NanoSecond
    NanoSecond Member Posts: 653
    brea588 said:

    scanxiety

    I go thur apr 10 for my 18 month check up.  Had Ct scan at 6 months and now a year later they are going to do ultrasound only.  My tumor was small 2.5  stage 1 grade 2.  I dont  really know how I feel about only ultrasound since I have had colon cancer 8 months ago that had not spread.  But I will be seeing a new urologist as my other has left the university that I went too.  So asking for your thoughts and prayers that all turns out well.   

    Certainly...

    But why are you consulting with urologists when you should now be under the care of an oncologist?  Hopefully one with some experience with RCC?

    Ultra-sounds can easily miss so many things...

  • N_Woods_Gal
    N_Woods_Gal Member Posts: 19

    Certainly...

    But why are you consulting with urologists when you should now be under the care of an oncologist?  Hopefully one with some experience with RCC?

    Ultra-sounds can easily miss so many things...

    Amen

    An ultra sound missed my 4.8 cm tumor. Luckily, my PA realized I would not have crossed her threshold w/out good reason and ordered the CT. When she returned w/ my results she hugged me and said "we just saved your life". 

  • foxhd
    foxhd Member Posts: 3,181

    Amen

    An ultra sound missed my 4.8 cm tumor. Luckily, my PA realized I would not have crossed her threshold w/out good reason and ordered the CT. When she returned w/ my results she hugged me and said "we just saved your life". 

    I like

    your doctor. She sounds like mine.

  • brea588
    brea588 Member Posts: 240

    Certainly...

    But why are you consulting with urologists when you should now be under the care of an oncologist?  Hopefully one with some experience with RCC?

    Ultra-sounds can easily miss so many things...

    RCC

    Nano I do have a medical oncologist now for past 8 months but she does not have much experience with RCC because she wants me to follow with urologist/onc at the university and with reports sent to her.  I am going to ask this new doc when i see him thur also after u/s , to do a ct scan. I tried to get one set up before my visit but since that is what is ordered the nurse said she couldnt change it and i would have to wait and see the doc.  If he does not do a ct I will have a talk with my onc and she will prob order one because after genetic testing i am positive in the dna strand that has colon,kidney,breast, gastric and prostate cancer.  However one good thing  I dont have to worry about prostate !!!!!  Thanks for your reply.