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Upper Tract Urothelial Carcinoma

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?

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.  

Posts: 1
Joined: May 2019

I have just registered for this site today so I don't know if Kathy911 and janlaurie are still active on this site since their postings were in 2018.  if you are, I hope you are progressing well.

I am also a female in early 60's when diagnosed with UTTUC and subsequently had a nephroureterectomy in January 2018.  The pathology of tumor was high grade papillary urothelial carcinoma in kidney pelvis- T2 (invasion to muscles).  No other treatment.  Although my surgery was done in Dallas, I went to MD Anderson Houston 3 months later to consult if I should get adjuvant chemotherapy (after reading the results of POUT trial that just came out).  No further treatment was recommended.  I've had CT scan every 3 months and so far no recurrence found.  It really concerns me that I'm having the CT scan with contrast done so frequently.  I also understand the reason (high recurrent rate), so I'm trusting that MD Anderson knows what is best.

If there is anyone out there with similar history, I would like to hear from you regarding your follow up protocol post surgery.

Apaugh's picture
Posts: 738
Joined: Aug 2016

I have this condition too.  I have suffered with ablations and stents since January and I am over it.  I am getting the kidney out.   Trust in MD Anderson, they are suppose to be the best.   If you want more than you can ever get on here, go to Smart Patients on the net.   



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