Has anyone not had any treatment after non-invasive tumor removed?

Posted by iborg @iborg, Dec 27, 2025

My urologist said it’s my choice. Either don’t do the 6 week treatment or not. and check bladder in 3 months. Has anyone else not taken treatment and faired well?

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quahog | @quahog | Feb 23 11:37am

In reply to @iborg "Oops. Correction. Either do or do not. My choice." + (show)

@iborg I think if you can tolerate the treatments it’s a no brainer. The evidence for preventing reoccurrence is so very strong. I had the same diagnosis as you, had the six initial treatments but started having issues with the BCG towards the end. I then had three maintenance treatments with side effects getting worse either each treatment. Had my second bout of maintenance finishing six weeks ago and my GP believed that it cause an autoimmune event resulting in reactive arthritis that has persisted in my hip and knee. So I think that’s the end of my BCG treatments but I’m glad I got what I could since I have been cancer free since the initial TURBT over 14 months ago.

slm189 | @slm189 | Feb 24 6:20am

I just had a cystoscopy. I was diagnosed in 2023 with non invasive low grade UTUC. After 3 attempts to ablate this tumor; I switched Drs. thinking I would like Jelmyto. My urologist did not offer Jelmyto, so he referred me to a University based Dr. This new urologist who specialized in urinary oncology and was much younger; ablated my tumor. Followup URS showed no tumor present but 3 small tumors had been found in bladder which were ablated. Just had my 3 month cystocopy and my bladder was clear. I have had no treatment but tumor ablation.
Will check again in 6 months. Very greatful for this new Dr- younger, maybe more agressive? What did you decide?

stevedoc | @stevedoc | Feb 25 6:40pm

In reply to @wifey9 "I did not have BCG after first TURBT. However, I had a recurrence at my 3..." + (show)

@wifey9 I too had high grade bladder cancer. After tumor removal I chose BCG (6 treatments). Bladder cancer came back 6 months later and I had another surgery. They then suggested Chemo into bladder …that did not work, so I called Stanford in CA and they advised me to go back and do BCG treatments again as it does not always work the first time. They were correct!! I have been cancer free for over a year! I will go in for another Cystectomy to check in 6 mos..No 3 week maintenance of BCG is recommended unless cancer reoccurs.

iborg | @iborg | Feb 25 7:00pm

In reply to @slm189 "I just had a cystoscopy. I was diagnosed in 2023 with non invasive low grade UTUC...." + (show)

@slm189 I did take the BCG treatment. I will get checked for tumors in about a month. In retrospect I figure a urologist will never say don't take the BCG. By saying it was my choice she was really saying I could do without it. Will never know that but will know ongoing needs in a month. Joy to all.

slm189 | @slm189 | Feb 25 7:38pm

In reply to @iborg "@slm189 I did take the BCG treatment. I will get checked for tumors in about a..." + (show)

@iborg Keep us posted next month! Wishing you only the best!

wifey9 | @wifey9 | Feb 25 9:39pm

In reply to @stevedoc "@wifey9 I too had high grade bladder cancer. After tumor removal I chose BCG (6 treatments)...." + (show)

@stevedoc Great news! I'm so glad the BCG finally worked for you! I've been clear for 18 months plus now. My next appt for cystoscopy is in November 2026, a year from my last one. I am feeling blessed! I hope you are clear at your next check, too!

baer | @baer | 6 days ago

I had it and it was removed about three months ago. No after surgery treatment was recommended. Last week I had a scope to check my bladder, and it was clear. No recommendation for treatment from either my Urologist or my Dr, just instruction to have another scope in about 4 months. Over the last ten years I have had some small tumors removed while having a scope which I have a few times a year.
After reading here I am concerned.

fmfran | @fmfran | 6 days ago

In reply to @85yosk8r "Hi daddyroxx2025, Luckily, I have only had minor problems with the catheter insertion. My urologist had..." + (show)

@85yosk8r they treat me with lidocaine first. After I don’t feel a thing. Remember to move into all suggested positions to distribute the BCG evenly

1056 | @1056 | 6 days ago

In reply to @daddyroxx2025 "@85yosk8r I Start my 6 Treatments on Wednesday,...I'm having a Hard time with this Catheter Insertion,..." + (show)

@daddyroxx2025 Unfortunately, they won’t put you out for the insertion. However, they will use lidocaine to help Also, ask ahead for a smaller catheter. The 14 hurt more than the 12 and some nurses are more gentle than others. If you get a gentle one, ask for your next treatment to be with her/him. Might help.