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Hi all — I’ve recently been diagnosed with High Grade/low stage non-invasive UTUC in my right kidney (Ta). Treated with RNU only in late October. My first follow-up cystoscopy is on Tuesday — follow-up CT scan and blood work mid-February. I’ve been reading and watching all the material I can get my hands on. I know this is a very rare disease but hope to share experiences with others. Mostly I’m concerned at this point with a bladder reoccurrence (struggling with some uti like symptoms for the last several weeks so thankful cystoscope is coming up). A side note — I was treated for a malignant t’étayons of the ovary in my early 20s which was treated with hysterectomy and radiation at Princess Margaret so I’ve been on this roller coaster before. Thanks for reading.
Indeed this is rare cancer. Finding information about was also hard for me. I was diagnosed with UTUC in October 2023, had a RNU in my left kidney in February 2024. That was a non-invasive tumor, at a very low stage, although it was high grade. I’ve already had a cystoscopy in late October 2024. There was no cancer, but some inflammation. I had dealt with two UTI in the meantime, both treated and gave me no symptoms afterwards. I had a CT also past October that showed a possible node enlargement at that point. I had a new MRI just this week, that showed no signs of cancer, the node growth shrank, being probably scar tissue (as per the report).
As far as I understand, there is always the possibility of expressing it to your bladder, it is in the back of my mind. There are treatments for that, I believe, BCG or TUR. But also there are cases of patients that have no recurrence for many years.
This has been my experience so far, and yes it is not a very common desease. Continuous vigilance ( MRI, cystoscopy, blood work), according to my doctor for the next 5 years.
Hello Lisautuc and Emilio,
Thank you for sharing your stories. It will go a long way to helping other patients who might have had similar diagnosis and experiences.
My Best,
Thank you Nightingale— I have learned so much from my reading about this rare cancer but it really is so helpful to have comrades in arms so to speak. I’ll update after my cystoscopy tomorrow.
Hi Lisautuc,
Thank you for sharing your experience & I hope everything went well with your cystoscopy.
We have a webinar recording that provides a comprehensive overview of UTUC and discusses recurrence, available on our website & YouTube channel: https://youtu.be/7Ex17laht5M?si=KkZGG35yo6YbVg1s.
If you have any questions, please don’t hesitate to contact me.
Wishing you all the best,
- Marilou (marilouc@bladdercancercanada.org)
I am a Bladder Cancer survivor for the past 18 years!
The recurrence of Bladder tumours has been ongoing with cystoscopies ranging from once a year to as my Urologist says (back to jail) to every 3 months.Multiple surgeries for bladder tumour removal.
The most recent being the spring of 2024 i have just finished BCG for the 2nd time and a recent MRI detected a questionable blockage in the upper left ureter.
Heading in on March 10th for exploratory ureteroscopy to find out more.
Has anyone experienced this whereby the cancer spreads to the Ureter.
Onward and upward.
Hi Austin,
I had a close call with my cancer (non-aggressive and non-muscle invasive) as it was very close to the ureter. On one of my 3 procedures, my Urologist checked my ureter and also my kidneys to ensure it did not creep up. I am in my 15 year as a survivor.
My Best,
P.S., Do let us know how things go on the 10th. Thank you.
Hi all — just an update. My 3 months scans for Utuc reoccurrence were clear which is great news. Unfortunately I also have a renal cell carcinoma in my remaining left kidney and it has grown a bit since my last scans. I feel lucky however that I have an appointment next week with a urological oncologist in Halifax to determine next steps. It’s a balance between treating the Renal cell cancer and preserving as much kidney function as possible in case I eventually need cisplatin to treat my Utuc if it spreads (as my urologist describes the dilemma).
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