docs that specialize in Renal Cell Carcinoma Sarcomatoid.

Karen Lynn
Karen Lynn Member Posts: 2
in Kidney Cancer #1

I am trying to find surgeons who are on the cutting edge dealing with Renal Cell

Carcinoma Sarcomatoid. I am also looking for hospitals that specialize in Renal Cancer.

Any and all help is greatly appreciated.  Thank you .  ,

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Not a good business model

    Karen,

     

    RCC is only 3% of all cancers and I doubt if  any hospital could specialize in such a small area and stay in business. You probably should be looking at a hospital or University with strengths in both Urology and Cancer. Give us a little information as to where you are and what your diagnosis is and you should get a lot of suggestions from this board.

     

    Icemantoo

  • Karen Lynn
    Karen Lynn Member Posts: 2
    #3
    RCC SARCOMATOID

    Hello Icemantoo,

    Thank you for your response.  Stage 4. Large tumor has spread (mats). Can go anywhere in US. Looking for the shining star of renal docs who has had Lots of experience with Sarcomatoid.  Any ideas.

    Thank you for your time.     

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #4
    Karen Lynn said:

    RCC SARCOMATOID

    Hello Icemantoo,

    Thank you for your response.  Stage 4. Large tumor has spread (mats). Can go anywhere in US. Looking for the shining star of renal docs who has had Lots of experience with Sarcomatoid.  Any ideas.

    Thank you for your time.     

    RCC specialists

    Karen,

     

    A few thoughts. Cleveland Clinic, Mayo Clinic. Sloan Kettering. Johns Hopkins. Duke. All have top notch Rcc Specialists and Oncology Department. Not sure you will find an RCC specialist limited to Sarcomatoid.

     

    Icemantoo

  • dhs1963
    dhs1963 Member Posts: 513
    #5
    icemantoo said:

    RCC specialists

    Karen,

     

    A few thoughts. Cleveland Clinic, Mayo Clinic. Sloan Kettering. Johns Hopkins. Duke. All have top notch Rcc Specialists and Oncology Department. Not sure you will find an RCC specialist limited to Sarcomatoid.

     

    Icemantoo

    Also add MD Anderson and Yale.

    I have sarcomitoid RCC, and go to hopkins (Dr. Hans Hammers).  

    I do not think you will find a Dr that specializes in Sarcomitoid only.  What you can do is find doctors that have done research in that....go to google scholor, and search for scholarly articles.

    I know Dr. Brian Shuch, who used to be a fellow at NIH (and I saw at NIH).  He is now at Yale.  However, he is a surgeon -- not a medical oncologist.  He was the first Doctor to explain how Sacromitoid is a different beast.  It is more agressive, does not respond well to IL-2, but does respond (sometimes) to old-school chemo (which non-sarcomitoid RCC does not respond to).

     

    With that said, I am extremely happy with Dr. Hammers at hopkins.  He has been able to explain what is going on with me in my language (though I am a physical scientist).  I have not had any treatments from Dr. Hammers, though, as my met was treated surgically only, and I am currently NED.

  • adman
    adman Member Posts: 336
    #6
    Rochester, NY

     

    Try Dr. Edward Messing - current or recent past President of the Urological Oncology Association. He works out of Strong Research Hospital in Rochester, NY. One of the smartest minds on the subject. He knows everyone and can either refer you to someone or see you himself. 

        https://www.urmc.rochester.edu/people/22503114-edward-m-messing

     

    Good luck & God Bless!! 

  • todd121
    todd121 Member Posts: 1,448 Member
    #7
    Karen Lynn said:

    RCC SARCOMATOID

    Hello Icemantoo,

    Thank you for your response.  Stage 4. Large tumor has spread (mats). Can go anywhere in US. Looking for the shining star of renal docs who has had Lots of experience with Sarcomatoid.  Any ideas.

    Thank you for your time.     

    RCC Specialists

    There are three doctors in the Los Angeles area that I know/like (I know there are others). Dr. Figlin at Cedars Sinai (one of the docs responsible for developing votrient and currently head of medical oncology at Cedars, and former head at UCLA, with decades of experience in kidney cancer), Dr. Pal at City of Hope, and Dr. Quinn at USC Keck School of Medicine. They are all medical oncologists specializing in treating RCC.

    I agree with others that I'm not sure you'd find one that specializes in sarcomatoid, but maybe you would.

    Best wishes,

    Todd

  • rlweiss39
    rlweiss39 Member Posts: 2
    #8
    RCC Sarcomatoid

    I also have sRCC.  Kidney removal Valentines day - aggressive stuff - mets found in early April - fluid build up on lungs by May 1st.   I am in Iowa and am seeing Oncologist at Mayo Clinic in Rochester Minnesota.   Dr. Pitot / Dr. Coli.  

    Started Sutent 50mg 2/1 May 2nd.  Lung cleared - no fluid - scan today showed no progression!  yippeeee.....  I have a couple leads but have not gotten a resounding response to the very question you ask.  Specialist in sRCC....

    Good luck!

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