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vmaxman99 Member Posts: 1

Hello everybody! Papillary RCC is what I have. Right kidney was roboticly removed in January 2016. CT Scan followup 6 months later showed mysterious nodules in lungs began growing. Uh oh! Biopsy of two in right lung resulted one benign, one malignant. Got into a clinical trial at MSK end of 2016. February CT Scan showed 40% decrease in size of some nodules. April CT Scan showed no appreciable change. Drugs are Afinitor and Avastin. Anybody else have this rarer form of kidney cancer?


  • Dutch1
    Dutch1 Member Posts: 152
    I have papillary RRC also

    Hi, vmaxman;

    I have papillary RRC also.  Surgery in Feb 2013, with cancer showing up in adrenal gland and 15 or so lymph nodes.  AFter surgery, I was on an Everolimus test trial, with a few mets showing up in chest 18 months after surgery, received targeted radiation treatment and went on Sutent.  That held for a year when another met showed up in chest.  This time, it was Votrient.  Votrient has been very successful for me.  I've been on it for 18 months and I'm practically clear right at the moment.  Quarterly CT scans are done for follow up, along with bloodwork twice a month.  That's where I've been at with papillary RRC.

    You seem to be doing fairly well.  Keep at it!

    Best wishes



  • Jan4you
    Jan4you Member Posts: 1,327
    Welcome and glad you found a

    Welcome and glad you found a "partner" disease-wise. Sorry for what you are going through. 

    Don't forget there is also SmartPatients.com too that may have others with same type of cancer.

    But we'll be here for you along the way, if you want us to be. 

    Sending you healing vibes and wellness.

    Hugs, Jan