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New diagnosis of transitional cell

Bill Baker
Posts: 23
Joined: Oct 2011

Hello everyone,

I am new to this forum. I have just been diagnosed with transitional cell carcinoma of the renal pelvis, right side. The ureter has a mass where it meets the kidney. There are also cells in the kidney itself. I just went for my initial consultation with a urologic oncologist at OHSU in Portland, OR. Since I have Muir-Torre Syndrome (subset of Lynch Syndrome) they are reluctant to take out the kidney. Plan is for an open surgery, midline, with resection of part of the ureter. They will attempt to move the kidney and reattach the ureter. If they cannot, they will move the kidney to the bladder. Goal is to treat the kidney with a biological agent. Surgery is planed for Nov. 28th. Of course I have to have my fourth MOHs procedure first (my third in 15 months for sebaceous carcinoma). Just interested in others experiences and perhaps just needed to express myself.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hello Bill,

I have no direct experience with or knowledge of your specific condition, there are others here that might, but I did want to say welcome to the club even if it is not a club any of us wanted to join. Coming here to express ourselves to people that really understand how we feel is one of the main reasons many of us are members, I know it has helped me.

Best wishes,

Gary

Bill Baker
Posts: 23
Joined: Oct 2011

Gary, Cannot say enough for your comment. It means more than I can say.

reeves1
Posts: 1
Joined: Nov 2011

Bill,

I also have TCC in the upper tract and the bladder, and am currently in treatment. Two websites which have been extremely useful to me in understanding and coping with my disease are:

www.BCAN.org: This is a non-profit foundation established to help people with urinary system cancer, both in the bladder and the upper tract.

www.blcwebcafe.org: This is a support group with many surviors of urinary cancer as members. Exhange of information among members has been very helpful to me.

Write me if you have any questions.

Paul Reeves

Bill Baker
Posts: 23
Joined: Oct 2011

Thanks Paul, I will check those out now.

crosskidz
Posts: 2
Joined: Dec 2011

Hey Bill,
I was dx'd with Muir-Torre in July 2010. My mom, who I received the defect from, has dealt with urinary tract cancers for over 20 years. It is a pain but she is doing very well. She has had both biological and surgical treatments for it. I have found it interesting that the urinary tract cancers aren't even listed with Lynch cancers often. I hope you are doing well and that your surgery was completely successful.
Blessings,
Michelle

Limelife50's picture
Limelife50
Posts: 419
Joined: Nov 2011

I to have tcc of the bladder,even though the tumor was considered small 1cm and low grade it worries me because they found this tumor when removing my right kidney due to rcc,I was told not to worry to much about my bladder issues,but not easy to do when I am left with only one kidney

Linda Lee
Posts: 7
Joined: Nov 2008

Hi Bill!

My father had transitional cell carcinoma as well as Lynch syndrome and Muir Torre--prior to the time when Lynch syndrome was well known. His cancer was a later stage cancer and the most they knew to do was to resect the kidney.

I would suggest you contact info@lynchcancers.com, who can find an expert researcher that will give more information to your for your situation. The website for Lynch Syndrome International is www.lynchcancers.com . It has studies on Lynch syndrome available.

Being diagnosed is a blessing. This generation of our family has lived longer than other generations because of the early interventions in removing growths, polyps, precancerous tumors and tumors are early stages.

Best to you...

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