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high grade UCC/TCC of the renal pelvis

1 year 4 months ago #53832 by TandKKlostermann
Im excited to share my husband and I our going to NYC on Sunday and have an appointment on Monday at MSK ! We also have an appointment at MDA in Houston at the end of the month. Thank you all for the suggestions.

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1 year 4 months ago #53824 by Alan
Kim,

Both places you mention are excellent for cancer treatments. MDA is my backup living in New Braunfels thus your west central Texas location may still be the best. I have nothing but good about the team at MDA. Also, a Dr. Svatek at UTSA who has worked at MDA has a very good reputation. The only downside is a smaller department. I have been told MDA and UTSA are collaberating on beefing things up in San Antonio.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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1 year 4 months ago #53821 by TandKKlostermann
Thank you both so much for your suggestions !
We are currently at UTSW in Dallas,Texas and have been emailing with a team at MDA for consult who offered to expedite a visit and answered my email in 5 short minutes via cell phone (I was blown away honestly). We are hoping that he is up for a trip across Texas in the next couple of days. We currently live in central west Texas. Staying in our home state is ideal but we will travel outside of the state for a specialist no questions asked. I have also looked at contacting Dr.Lee @ MSK tomorrow morning. I will be sure and email Dr.Agarwal tomorrow as well. Again thank you for the suggestions very much appreciated. Its hard to weed out specialist by listings on a center website but having a name is so helpful.

Best,
Kim

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1 year 4 months ago #53819 by sara.anne
It does sound as if you need to find someone with expertise in unusual cases such as your husband's. I would recommend that you contact
Piyush K. Agarwal, M.D.
Center for Cancer Research
National Cancer Institute
Building 10 - Hatfield CRC, Room 2-5952
Bethesda, MD 20892-1210
Ph: 301-496-6353
This email address is being protected from spambots. You need JavaScript enabled to view it.
Dr. Agarwal has offered to help patients such as your husband find appropriate consultations. He is a very caring and helpful person!

Other good places for consultation would be
Memorial Sloan Kettering in NYC
Stanford University Medical Center
USC
MD Anderson

Best to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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1 year 4 months ago #53818 by Cynthia
Kim, all are welcome here. There are several places in the US that would work for your second. MD Anderson in Tx, Sloan Kettering in Ny, UCLA Ca or John Hopkins in Baltimore to name a few. If you tell us what state you are in we may have some good suggestions closer to home.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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1 year 4 months ago #53817 by TandKKlostermann
Hi all,

I hope that its okay for me to post on this forum as most kidney cancer support groups aren't helpful. My husbands dx lays somewhere in-between as he has high grade urothelial cell carcinoma of the renal pelvis. Im hoping to find someone who as also had similar dx as well as recommendations for second opinions. My husband was 29 at dx in March due to the rarity of this particular cancer with his age added we are hoping to find a new specialist and willing to travel.

Shortly after diagnosis he started DD-MVAC chemotherapy, scans between round three and four showed promising shrinkage however last week he had a radical nephrectomy and the pathology report was unexpected and we are now seeking a second opinion. In his pathology/surgical report the original tumor had grown and new positive cancerous sites are present down the ureter. His tumor is bigger than it ever was and doubled in sized in the three short weeks form scans to surgery. Even though those were removed the fact that they are high grade and active means he had a poor response to chemo and that mets is possible and our biggest fear. A couple of months ago we were told that wall thickening in the ureter was J stint induced inflammation. That wasn't the case the inflammation was actually cancerous. My biggest concerns are that surgery noted gross inflammation in the bladder but it wasn't biopsied, and that area too could possibly be cancerous.

If anyone has any ideas as who to turn to for advice we would be so very grateful.

-Kim

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