New member — High Grade non-invasive UTUC

Posted by lisamutuc @lisamutuc, Mar 5 8:10pm

Hi all — I’m just joining this forum to share and learn from others re: UTUC. I was diagnosed last fall with HG non-invasive (TA) UTUC in right kidney which was treated surgically (NU with bladder cuff). I just had my 3 month chest, abdomen, and pelvic scan as well as a CT urogram as the lab tests detected microhematuria in the urine sample taken during my 3-month follow up cystoscopy (which was visually clear). My urologist scheduled an appointment to review the results almost immediately after. This has me a bit concerned as he generally doesn’t call unless something is up. That said, I’m feeling pretty optimistic based on everything I’ve read — that even reoccurrence in the bladder can be reasonably managed. Thanks for reading! P.s. I also have a small rcc in my left kidney which they are actively monitoring. I also had an ovarian malignant immature teratoma at age 20 (treated with radiation and hysterectomy). — Lisa (65 year old woman)

Interested in more discussions like this? Go to the Bladder Cancer Support Group.

Sue, Volunteer Mentor | @sepdvm | Mar 6 8:49am

Welcome to Connect @lisamutuc.
I think you will find others here who can share their experiences to help support you. You certainly have had things happening, and it sounds like you have a good care team. My husband has battled High grand invasive bladder cancer for 5.5 years now. As we were warned, it likes to come back and it did multiple times, so he eventually chose to have a radical cystectomy, prostatectomy, and neobladder formation. Multiple postoperative issues have entailed many surgeries but his care team at Mayo Rochester has handled everything. He is down to yearly CT urograms to monitor for recurrence. He did experience chemo and immunotherapy prior to the big surgery, and there are more drugs approved for UC now than there were even in 2019. So many people seem to live with noninvasive bladder cancer with regular followups and procedures. It is like another chronic disease. Did you say your recent cytology was clear? So they are looking for the source of bleeding?

Colleen Young, Connect Director | @colleenyoung | Mar 16 5:21pm

@lisamutuc, you may also be interested in these related discussions about Upper Tract Urothelial Carcinoma (UTUC): https://connect.mayoclinic.org/group/bladder-cancer/?search=%20Upper%20Tract%20Urothelial%20Carcinoma&index=discussions

Lisa, any update? Did you have the appointment with your doctor to review the results of your testing?

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