Anyone been diagnosed with this type of rcc

DreamOnDeb
DreamOnDeb Member Posts: 112
edited July 2017 in Kidney Cancer #1

Hello.  My husband had a biopsy of his kidney tumor and he was diagnosed with Clear Cell Papillary Renal Cell Carcinoma.  This is not the same as either classic papillary or clear cell rcc.

From the American Journal of Surgical Pathology......

"This tumor has immunophenotypic and genetic profiles distinct from those of either classic papillary or clear cell rcc, and should be considered a distinct entity in the spectrum of renal cell neoplasia.  Clear Cell Papillary RCCs are typicall small, biologically indolent tumors.  No lymph node or distant metastasis of these tumors has been reported to date in the literature.  Our study, the largest to date with follow-up, along with others, suggest that pure CCPRCC is an indolent tumor and should be renamed 'clear cell papillary neoplasm of low malignant potential' to reflect their biology."

Has anyone else here been diagnosed with this type of rcc?

We are meeting with the surgeon this Wednesday.

Comments

  • APny
    APny Member Posts: 1,995 Member
    #2
    Wasn't mine but it sounds

    Wasn't mine but it sounds like if you have to have this awful disease that's one of the better ones. Indolent, low malignant potential and no mets sounds good to me.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #3
    The fact

    Deb,

     

     

    The fact that it is only 2.0 cm is even better as for an excellent prognosis from your surgeon.

     

     

    Icemantoo

  • DreamOnDeb
    DreamOnDeb Member Posts: 112
    #4
    icemantoo said:

    The fact

    Deb,

     

     

    The fact that it is only 2.0 cm is even better as for an excellent prognosis from your surgeon.

     

     

    Icemantoo

    Hi Icemantoo,

    Hi Icemantoo,

    After having another CT scan, the size was put at 2.6 x 3.  We met with the Dr. yesterday, and my husband's surgery will be on August 21st.  He will be having his whole kidney removed because of the location of the tumor.  He is also on anticoagulants, and there will be less risk of bleeding.  This will be a robotic, laparoscopic surgery.  When he had the biopsy, the differential diagnosis was "clear cell papillary renal cell carcinoma", and "conventional clear cell carcinoma."  As I stated above, the clear cell papillary rcc typically presents as a low grade, low stage tumor and current evidence suggests it has no metastatic potential.  I asked if the two can co-exist with each other.  He said there will be a "definitive" answer once it's removed and sent to pathology (since they only take a few samples with the biopsy).  I'm praying it's the "indolent" type.  We both feel a little more relieved now (as much as we possibly can be).  Laughing

  • Mighty Frog
    Mighty Frog Member Posts: 152 Member
    #5
    2nd Opinion

    Hi! I just had my partial kidney removal last week. I think is a really a waste to remove the whole kidney when the tumor is so small. But again, partial removal only can be done depends on the tumor size and the location. But some skillful and experience surgeon might able to do it. I suggest u get a 2nd opionin or go to the expert urulogy doctors. 

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