Urothelial Carcinoma Newly Diagnosed/Post-op Reccurence???

CLTZ Member Posts: 1
edited December 2022 in Bladder Cancer #1

Hello, I am new to the site and was hoping if anyone had a history of urotelial carcinoma that can shine some light on the my problems.


Initially beginning of Jan 2021, I have been experiencing intermittent gross hematuria (brown/pink blood in urine) which alerted me to go see the doctor. However when they took urine sample at the hospital, urine was normal and they brushed me off. After jumping from.the hospital to hopsital finally found one that would take a closer look at it.

Finally diagnoses was high grade urothelial cancer on October 2021 and they recommended removing the uroter and the kidney which I did in mid Jan 2022. At that time they did not see any metastasis anywhere so no adjuntive chemo was recommed.


Fast forward, last few weeks (1.5 months post-surgery) my hematuria has returned. Is this possible due to cancer cell invasion to the bladder? anyone with post-nephrouroternectamy experience hematuria even after the removal? Dr. appointment is months away, but concerned to see hematuria again. and it seema urothelial carcinoma is know for quite high metastasis rate north of 50%.  If anybody has some inputs it wouls be greatly appreciates.


Also, Ive been losing about 18kg last 1.5 months any suggeations on vitamins/diet recommendations.


Thank you so much


  • Forherself
    Forherself Member Posts: 838 Member
    edited February 2021 #2
    Call your urologists office

    They should see. you about this, or at least reassure you that it is ok


  • barehead
    barehead Member Posts: 31 Member
    Besides seeing a Urologist,

    Besides seeing a Urologist, you should have and keep the pathology results from your surgery.  Stage and grade of the tumor(s) found will determine treatment plans.  Typically, anything stage 2 or highter will result in chemotherapy or immunotherapy if chemo is not possible.  Also, you should have regular checkups including CT at regular intervals following surgery, such as 3 mos, 6 mos., etc.  

    KEYTRUDA SURVIVOR Member Posts: 3 Member
    edited July 2021 #4
    I was diagnosed with terminal

    I was diagnosed with terminal urothelial cancer, metastasized to my lungs and other ares in June 6, 2019. Prognosis, maybe 8 months to live. We discussed immunotherapy as an alternative to chemo,much better quality of life. My Onc placed me on Keytruda. 5 months later no sign of cancer in my scans. Here I sit, 2 years later. 

  • sampatch
    sampatch Member Posts: 2 Member

    Thank you for your post regarding your experience with high grade urothelial cancer. My wife, 69, just had her first Keytruda infusion this past Monday. She has an apparent metastatic cancer in her lung, as you. How long did you stay on Keytruda? How long was it before improvement was observed? Your post brings hope on this lonely road.

  • PennyLane01
    PennyLane01 Member Posts: 1 *

    I had a nephrectomy in 2016 for the exact same thing. Then I had a reccurance in my bladder, then in my prostate. Each was removed by surgery. In the mean time I had a wedge resection for a primary lung cancer, unrelated. Then I had a thyroid lobectomy for a primary thyroid cancer. My urothelial cancer is acting up again in my bladder, so that will be the sixth cancer surgery in 6 years. At this rate I figure I’ll die of “old age” before I do from cancer! So, relax! You’re not going anywhere anytime soon. Just keep up with the cystoscopies and scans. Here’s my impression of an MRI scan…bing bong, bing bong, Budda Budda Budda, ping ping ping ping, Budda Budda Budda, ping ping ping ping.