Sarcomatoid chromophobe renal cell carcinoma

caz77
caz77 Member Posts: 1
in Kidney Cancer #1

My partner had radical nephrectomy on 26th May 17cm tumor in left kidney. We were told renell cell carcinoma however when they did the pathology they said it wasn't and it is Sarcomatoid chromophobe renal cell carcinoma. They said aggressive rare and prepare for devastation. He's only 41 with our young children. Worst nightmare the Dr said. He's started SUTENT in the hope to slow/ stop the growth. Not curable and no surgery. Currently in the lung and peritoneum. So so scary. Totally unknown on if the sutent will work. Side effects started n life's miserable. Please if you've had experience with this type of extremely rare cancer let us know. Thank you

 

Comments

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #2
    Sorry for ALL you and your

    Sorry for ALL you and your loving partner and family are going through. I do not know about this type of cancer, but yes, others here might and will come to respond to you. There is also SmartPatients.com to consider for more responses.

    Sometimes, initially some docs give the worst case scenario, but honestly no one knows for sure. Is this an oncologist who told you to expect the worst or your surgeon(urologist)? I personally know several folks who were given pretty grim prognoses, only to live longer than most expected. There are so many changes in the treatment field. 

    Anyway, know that I and others will be here for you..all.. the.. way! If you want us to be. You are not alone. We'll support and inform you best we can.

    Sending you healing hugs and HOPE! Use your energy to LIVE in the moment! So many good lessons and kindess are on its way!

  • penitent
    penitent Member Posts: 79
    #3
    SRCC

    CAZ,

    My son-in-law (42 with 2 small children) had a 13cm tumor removed from left kidney that was Stage IV, grade 4, 60% sarcomatoid features with extensive necrosis.  Yes, it is a relatively rare and aggressive form of RCC but so far he is holding his own very well (1 year out).  He started on Votrient (which I believe is similar to Sutent) but couldn't handle the side-effects after a few weeks.  However, he was switched to Opdivo which seems to be working pretty well.  His last scans did not show any new mets and the ones he had are substantially smaller after the Opdivo and some SBRT (radiation therapy).  So he's humming right along...tired of course...but working and enjoying life to the fullest.  We have no idea where we'll be five years from now...but I'm confident we can keep the 'beast' at bay.

    Don't believe everything you read on the internet about an SRCC prognosis.  The data gave him 18 months on average which we're certainly going to surpass with flying colors.  Keep the faith.

    Penitent

  • medic1971
    medic1971 Member Posts: 225 Member
    edited August 2017 #4
    Cancer center

    I would strongly recommend that you get a second opinion at a major cancer hospital.  If you have not already done so.

    Here is a list of top cancer hospitals in the US: 

    http://health.usnews.com/best-hospitals/rankings/cancer

    Good luck!

  • sblairc
    sblairc Member Posts: 585 Member
    edited August 2017 #5
    medic1971 said:

    Cancer center

    I would strongly recommend that you get a second opinion at a major cancer hospital.  If you have not already done so.

    Here is a list of top cancer hospitals in the US: 

    http://health.usnews.com/best-hospitals/rankings/cancer

    Good luck!

    Exactly what Medic said, but I'd add kidney cancer EXPERT

    Second opinion from a kidney cancer doctor. Not just at a top hospital, but a kidney cancer expert. The other possibility is to begin looking into clinical trials, if you are open to that. It isn't always the first place for people to start but they offer a chance at more current but yet not currently approved treatments. 

  • medic1971
    medic1971 Member Posts: 225 Member
    edited August 2017 #6
    sblairc said:

    Exactly what Medic said, but I'd add kidney cancer EXPERT

    Second opinion from a kidney cancer doctor. Not just at a top hospital, but a kidney cancer expert. The other possibility is to begin looking into clinical trials, if you are open to that. It isn't always the first place for people to start but they offer a chance at more current but yet not currently approved treatments. 

    YES!

    That's exactly right and I should have stated that in my first response.  Find an expert for that type of tumor with those features. 

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