Survey: Did your pre-op testing include Pet scans?

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  • a.oakley
    a.oakley Member Posts: 32
    #22
    Info re why Pet scans are done

    Hi.  Sorry it's taken so long to get back here.  I want to clarify and add information that was told to us by  specialists at 3 different facilities.  (I'm not a doctor, just a caregiver, but I will try to tell you my understanding re PET Scans.  I do take notes!). 

    With a PET scan the information provided is not just anatomical as with MRI and Ct's, it is also functional.  It shows metabolism.  It can help differentiate RCC from benign tumors, and can help determine response to targeted therapy.  PET's combined with CT are the best tool for evaluating due to the use of FDG.  However, a PET scans role in the diagnosis of primary RCC of the kidney is limited because the FDG is primarily secreted by the kidney.  So the whole thing lights up.  The greatest benefit of PET scans are detection and monitoring of metastatic disease.  Doctors can tell the difference between a swollen lymph node and metastatic lymph nodes and a tumor thrombus from a benign clot.  CT's and MRI's are not good enough.  A PET/CT allows early prediction of response to targeted therapy, because it reflects changes in metabolic activity.

    In the beginnning of my husbands treatment we had a PET done after just 6 weeks and we changed drugs.  He has a PET done now every 8 weeks.  I challenge the docs every time and they all have said the same thing to us. 

    Disclaimer:  I'm not a doctor, just repeating information that was told to us by 6 different Renal Oncologists. 

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #23
    a.oakley said:

    Info re why Pet scans are done

    Hi.  Sorry it's taken so long to get back here.  I want to clarify and add information that was told to us by  specialists at 3 different facilities.  (I'm not a doctor, just a caregiver, but I will try to tell you my understanding re PET Scans.  I do take notes!). 

    With a PET scan the information provided is not just anatomical as with MRI and Ct's, it is also functional.  It shows metabolism.  It can help differentiate RCC from benign tumors, and can help determine response to targeted therapy.  PET's combined with CT are the best tool for evaluating due to the use of FDG.  However, a PET scans role in the diagnosis of primary RCC of the kidney is limited because the FDG is primarily secreted by the kidney.  So the whole thing lights up.  The greatest benefit of PET scans are detection and monitoring of metastatic disease.  Doctors can tell the difference between a swollen lymph node and metastatic lymph nodes and a tumor thrombus from a benign clot.  CT's and MRI's are not good enough.  A PET/CT allows early prediction of response to targeted therapy, because it reflects changes in metabolic activity.

    In the beginnning of my husbands treatment we had a PET done after just 6 weeks and we changed drugs.  He has a PET done now every 8 weeks.  I challenge the docs every time and they all have said the same thing to us. 

    Disclaimer:  I'm not a doctor, just repeating information that was told to us by 6 different Renal Oncologists. 

     

    PET scanning

    You'll find a good, brief and authoritative treatment of the topic at

    http://www.petscaninfo.com/zportal/portals/pat/my_pet_scan/faq

    Hope your Husband is continuing to make good progress.

  • NanoSecond
    NanoSecond Member Posts: 653
    #24
    a.oakley said:

    Info re why Pet scans are done

    Hi.  Sorry it's taken so long to get back here.  I want to clarify and add information that was told to us by  specialists at 3 different facilities.  (I'm not a doctor, just a caregiver, but I will try to tell you my understanding re PET Scans.  I do take notes!). 

    With a PET scan the information provided is not just anatomical as with MRI and Ct's, it is also functional.  It shows metabolism.  It can help differentiate RCC from benign tumors, and can help determine response to targeted therapy.  PET's combined with CT are the best tool for evaluating due to the use of FDG.  However, a PET scans role in the diagnosis of primary RCC of the kidney is limited because the FDG is primarily secreted by the kidney.  So the whole thing lights up.  The greatest benefit of PET scans are detection and monitoring of metastatic disease.  Doctors can tell the difference between a swollen lymph node and metastatic lymph nodes and a tumor thrombus from a benign clot.  CT's and MRI's are not good enough.  A PET/CT allows early prediction of response to targeted therapy, because it reflects changes in metabolic activity.

    In the beginnning of my husbands treatment we had a PET done after just 6 weeks and we changed drugs.  He has a PET done now every 8 weeks.  I challenge the docs every time and they all have said the same thing to us. 

    Disclaimer:  I'm not a doctor, just repeating information that was told to us by 6 different Renal Oncologists. 

     

    PET vs. CT

    I realize I have made this point earlier but nonetheless...

    Most renal cell carcinomas are NOT "avid" for glucose.  That is, they do not consume high amounts of it for their metabolism.  As such, if the PET scan that your husband is undergoing every 8 weeks is using FDG as the PET radiotracer it may not "see" all or any of the mets related to RCC.  Unless, of course, he has a rare version of mRCC that happens to be avid for glucose.  Regardless, that is why it is imperative to combine the PET scan with a CT scan. But you say he is only undergoing the PET.

    I don't where you found those 6 different renal oncologists but unless you are leaving out some vital information about your husbands particular form of RCC I would seek a 7th opinion about doing only PET scans.

    Of course I am not a doctor either.  I just read the literature.

  • a.oakley
    a.oakley Member Posts: 32
    #25
    Texas_wedge said:

    PET scanning

    You'll find a good, brief and authoritative treatment of the topic at

    http://www.petscaninfo.com/zportal/portals/pat/my_pet_scan/faq

    Hope your Husband is continuing to make good progress.

    website

    Thank you for the website.  I think I have visited it before.  I also use the library at the medical center and attempt to read nuclear medicine periodicals.  I think I understand a percentage of what I read. 

    I still have not come to terms with the treatment that my husband received.  I keep hoping to come to an understanding of how a top notch renal cancer facility chose to leave my husbands tumor in him.  They let it grow until it was in the vena cava.  The stupid tumor board decided as a group not to operate.  They said "he will only live 4 months longer with it removed".  He felt like a guinae pig...lab rat..whatever...an experiment.  Our renal oncologist got so mad he quit.  But he referred us to another facility and another surgeon and oncology group.  He had his surgery in January.  Doing well.  And for the record, he was very active, healthy, no problems, 65 years old.  There wasn't a risk, other than Stage 4 prognosis. 

  • a.oakley
    a.oakley Member Posts: 32
    #26
    NanoSecond said:

    PET vs. CT

    I realize I have made this point earlier but nonetheless...

    Most renal cell carcinomas are NOT "avid" for glucose.  That is, they do not consume high amounts of it for their metabolism.  As such, if the PET scan that your husband is undergoing every 8 weeks is using FDG as the PET radiotracer it may not "see" all or any of the mets related to RCC.  Unless, of course, he has a rare version of mRCC that happens to be avid for glucose.  Regardless, that is why it is imperative to combine the PET scan with a CT scan. But you say he is only undergoing the PET.

    I don't where you found those 6 different renal oncologists but unless you are leaving out some vital information about your husbands particular form of RCC I would seek a 7th opinion about doing only PET scans.

    Of course I am not a doctor either.  I just read the literature.

    oops

    Sorry if I was confusing or misleading.

    He had a bunch of tests to diagnose him in the beginning.  Ultrasound, CT, then MRI, then PETScan and some more xrays of chest, abdomen, hips, legs.  It was a PET/CT scan.  Then he went on targeted therapy and he has lab work every month and a PET/CT scan every 8 weeks. 

    He has clear cell RCC.  It's my understanding its glycolytic and lipogenic.

    Thanks for telling me that it may not see all of the mets.  This is exactly what I like and admire about you Nano.  I want to know everything...good or bad. 

    6 different renal oncologists are from 3 different facilities.  2 at each place.  They keep quitting and moving up the career ladder.  I asked about the turn-over and was told it is quite common at the Mega-medical center teaching facilities.   

  • Galrim
    Galrim Member Posts: 315 Member
    #27
    a.oakley said:

    Info re why Pet scans are done

    Hi.  Sorry it's taken so long to get back here.  I want to clarify and add information that was told to us by  specialists at 3 different facilities.  (I'm not a doctor, just a caregiver, but I will try to tell you my understanding re PET Scans.  I do take notes!). 

    With a PET scan the information provided is not just anatomical as with MRI and Ct's, it is also functional.  It shows metabolism.  It can help differentiate RCC from benign tumors, and can help determine response to targeted therapy.  PET's combined with CT are the best tool for evaluating due to the use of FDG.  However, a PET scans role in the diagnosis of primary RCC of the kidney is limited because the FDG is primarily secreted by the kidney.  So the whole thing lights up.  The greatest benefit of PET scans are detection and monitoring of metastatic disease.  Doctors can tell the difference between a swollen lymph node and metastatic lymph nodes and a tumor thrombus from a benign clot.  CT's and MRI's are not good enough.  A PET/CT allows early prediction of response to targeted therapy, because it reflects changes in metabolic activity.

    In the beginnning of my husbands treatment we had a PET done after just 6 weeks and we changed drugs.  He has a PET done now every 8 weeks.  I challenge the docs every time and they all have said the same thing to us. 

    Disclaimer:  I'm not a doctor, just repeating information that was told to us by 6 different Renal Oncologists. 

     

    "The greatest benefit of PET scans are detection and monitoring of metastatic disease."

    That one was actually new to me, but on the other hand explains why they insisted I had post-nephrectomy PET scan to determine what my lung nodules was. Where did you get that specific part of information regarding mets?

    /G

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