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docs that specialize in Renal Cell Carcinoma Sarcomatoid.

Karen Lynn
Posts: 2
Joined: Jul 2014

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 .  ,

icemantoo's picture
icemantoo
Posts: 1658
Joined: Jan 2010

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
Posts: 2
Joined: Jul 2014

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's picture
icemantoo
Posts: 1658
Joined: Jan 2010

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's picture
dhs1963
Posts: 394
Joined: May 2012

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.

todd121
Posts: 641
Joined: Dec 2012

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

adman's picture
adman
Posts: 268
Joined: Jul 2012

 

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!! 

rlweiss39
Posts: 1
Joined: Apr 2014

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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