Upper Tract Urothelial Carcinoma

Kathy911 Member Posts: 1

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
    janlaurie Member Posts: 4
    edited August 2018 #2
    Kathy 911 - I think we have the same thing

    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.  

  • 1khinwin
    1khinwin Member Posts: 2 Member
    edited May 2019 #3
    Upper Tract Urothelial Carcinoma

    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
    Apaugh Member Posts: 850 Member
    Prayers going up

    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.   



  • 3GKIDS
    3GKIDS Member Posts: 4 Member
    edited March 2021 #5
    Upper tract low grade urothelial carcinoma

    I am new to this site.  Has anyone had treatment with a new chemo agent that came out last year called Jelmyto?  It is made for this type of cancer.  Just curious of treatment outcome.  Thanks.

  • 3GKIDS
    3GKIDS Member Posts: 4 Member

    Hi there. I was diagnosed in 2019 with low grade upper tract urothelial carcinoma of left kidney. I have undergone about eight laser ablations of the cancer growths. I have tried since 2021 to get treatment with jelmyto. My doctor is one of the only ones in the city where I live to do this type of treatment. My insurance agreed to treatment but the hospital where he wants to do it at keeps dragging their feet. It is a transplant hospital and can't understand why they wont approve the Jelmyto treatment. TRied again this year in 2022 and still the same issue.

    The doc is apparently doing this treatment through a nephrostomy tube in his office which keeps the patient from going to the hospital for the six week treatment. But not sure if I am a candidate for the placement of the tube since the cancer was in many different places in the kidney. I know you have to have a clear place in the kidney to be able to insert the tube.

    Jelmyto is made especially for this type of cancer and apparently suppose to work well. I know your posting is from 2021, i wonder if you have ever gotten treatment with this medications.