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Upper Tract Urothelial Carcinoma

Kathy911
Posts: 1
Joined: Jun 2018

I'm new to this site.  I was diagnosed with upper tract urothelial carcinoma in December 2017.  My local doctor wanted to remove my kidney and ureter right way, but MD Anderson said not so fast. Since January I've been in a clinical trial at MD Anderson in Houston and I've had very good results so far.  I'm still not sure what group I belong in since it is a type of bladder cancer however, I'm told my situation is rare because of it's location inside the opening of my kidney so it's my kidney that's really taking the beating.  I have yet to meet anyone with the same type of cancer as myself.  I'm a female in my upper 40s and the majority of people with this type of thing are men in thier 70s. I've also developed stricture in my ureter so I was blessed with a stent since 4/30/18 which won't be removed until July 23rd and I can't WAIT. The good news is my tumor isn't visible anymore so I'm thankful for that. Once the stent is removed  I can move on to maintenance treatments once a month for 11 months.  Anyone else out there with this type of circus?

janlaurie
Posts: 4
Joined: Aug 2018

Kathy911-I’m like you, not sure which group I belong in.  I’m female in my 60’s.   I had a radical nephrectomy 2 weeks ago which they thought was non-invasive, non-malignant tumor and just kidney not functioning right. Surprise!  Pathology came back Stage 3 urothelial carcinoma primary to the kidney and unfortunately has spread outside the kidney.  But it’s a rare presentation of bladder cancer I guess.  I’m not too confident of the medical care here now even though the Raleigh area with Duke and UNC are supposed to be top notch.  So we are headed out to Houston in 2 weeks to MD Anderson.  We have no idea how long we will be out there, but since they are rated #1, it seems like my best chance.  My surgeon said there is a 50% survival rate with chemo.  I’m trying to stay positive but I’m scared and still kind of in shock.  

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