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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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Bobbie | @deidre77 | Feb 4 11:06am
In reply to @teresaep "BCG has minimal side effects! I went in, they installed into bladder by catheter & i..." + (show)
Profile picture for teresaep @teresaep

BCG has minimal side effects! I went in, they installed into bladder by catheter & i went home, 2 hrs later you urinate it out. I had a little stomach discomfort but worked the next day thru 1 yr of treatments(12total). IF its available @ shortages at your dr, DO IT! Ive had NO recurrances in 5 yrs

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@teresaep

WOW! That exclamation is the first utterance which comes to mind.

You are truly fortunate after all the stories I hear about it not being a successful treatment. As a matter of fact, I am scheduled to have my second BCG installation tomorrow and will now remain hopeful.

Thank you for telling us and I am sending my best wishes.

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teresaep | @teresaep | Feb 4 12:09pm
In reply to @deidre77 "@teresaep WOW! That exclamation is the first utterance which comes to mind. You are truly fortunate..." + (show)
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@teresaep

WOW! That exclamation is the first utterance which comes to mind.

You are truly fortunate after all the stories I hear about it not being a successful treatment. As a matter of fact, I am scheduled to have my second BCG installation tomorrow and will now remain hopeful.

Thank you for telling us and I am sending my best wishes.

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@deidre77 best of luck to you! Its alot of stress but the further along you get it does get better. In most cases is a treatable cancer

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gemdoc25 | @gemdoc25 | Feb 6 3:13am
In reply to @daddyroxx2025 "I backed Out of those Treatments, I just couldn’t do the Catheter Issue, It was a..." + (show)
Profile picture for daddyroxx2025 @daddyroxx2025

I backed Out of those Treatments,
I just couldn’t do the Catheter Issue,
It was a Very Uncomfortable thing,
We’ll See what happens Next after my April 7 Wellness Bladder check with the Doctor….IDK,…I can’t have this Catheter inserted…it’s to much…😞

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@daddyroxx2025
I might be repeating myself, but I don't understand this issue with the catheter. It is not pleasant, but assuming the correct diameter catheter and use of Lidocaine it's no big deal. Rather a little unpleasantness than progression and even more unpleasant treatment.
At the start of my GemDoce treatment, they had several tries with various diameter catheters until they found the right one. That wasn't funny! After that it was no problem.
I urge you to talk to your treatment nurse and reconsider.
Good luck.

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michzn | @michzn | Feb 8 5:50pm
In reply to @teresaep "BCG has minimal side effects! I went in, they installed into bladder by catheter & i..." + (show)
Profile picture for teresaep @teresaep

BCG has minimal side effects! I went in, they installed into bladder by catheter & i went home, 2 hrs later you urinate it out. I had a little stomach discomfort but worked the next day thru 1 yr of treatments(12total). IF its available @ shortages at your dr, DO IT! Ive had NO recurrances in 5 yrs

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@teresaep Thank you, this is very good news. I will have my post op meeting this week and will be presented with further treatment options - High grade NMI, 3 tumors removed. The surgeon said we will discuss options. I woke up from surgery in the middle of the chemo treatment in excruciating pain, sadly no one warned how painful it would be. I am glad you have very little pain from the immunotherapy drugs. I am waiting for my tumors to be sequenced prior to selecting a treatment.

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michzn | @michzn | Feb 8 5:59pm
In reply to @linda0234 "@daddyroxx2025 I had three tumors removed one of which was sarcoma. It was low grade noninvasive...." + (show)
Profile picture for linda0234 @linda0234

@daddyroxx2025
I had three tumors removed one of which was sarcoma. It was low grade noninvasive. I had the six week treatment. However mine was cancer. Since yours was not you may be right getting another opinion. Mine did not spread outside the bladder. My most recent scope of my bladder was clean. I am now having a treatment one time a month for 9 months and scopes in between. Then a scope after six months. Then of bladder is cancer free, a scope once a year. Again, I had a cancerous tumor.

The treatments are awful. My poor urethra. I will do whatever it takes. My oncologists are at the James Cancer Hospital at Ohio State University and I have confidence that I am in good hands.

I’m curious that if you were cancer free, why would they want you to have all those treatments. Let me know what you learn?

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@linda0234 This is encouraging news. Would you mind sharing your Dr.s name? I am not too terribly (day trip) far from The James and I am ready for a second option. I understand if you would rather not. I wish you well.

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linda0234 | @linda0234 | Feb 9 11:27am
In reply to @michzn "@linda0234 This is encouraging news. Would you mind sharing your Dr.s name? I am not too..." + (show)
Profile picture for michzn @michzn

@linda0234 This is encouraging news. Would you mind sharing your Dr.s name? I am not too terribly (day trip) far from The James and I am ready for a second option. I understand if you would rather not. I wish you well.

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@michzn
Absolutely. His name is Akshay Sood Division of urological surgery

The James Outpatient Care Kenny Road, Upper Arlington OH 614-685-4263. This may be central scheduling and they will hopefully connect you to the correct department.

Let me know if you have difficulty. I’m going to look on my chart for another phone #.

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jlopez7868 | @jlopez7868 | Feb 9 2:37pm
In reply to @85yosk8r "Hi daddyroxx2025, Luckily, I have only had minor problems with the catheter insertion. My urologist had..." + (show)
Profile picture for 85yosk8r @85yosk8r

Hi daddyroxx2025,
Luckily, I have only had minor problems with the catheter insertion. My urologist had done it the 1st 2 or 3 times
and she was very smooth.
At the start of the treatments, however, she had her assistant do it and she was little rough the 1st time and inserted it too
fast. I asked her during the 2nd treatment to insert it slower and that solved the problem. She recommended that I take a deep breath and hold it until I felt the catheter enter the bladder - that did help! I just kept saying to myself "I don't want cancer"!!! BCG has kept my cystoscopy tests looking good, so I will just accept the discomfort and continue the treatments as long as needed.
I'm quite sure that they wouldn't discontinue your treatments because of your catheter problems - they are professionals and will find an answer! Don't let cancer win!!!
Good luck and let us know how you slayed the beast.
84yosk8r

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@85yosk8r Did they use lidocaine for the insertion of the catheter?

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casper13 | @casper13 | Feb 10 9:26am

Yes, I recently have. Had a tumor discovered in June 2025 coincidentally from having a mri done for something else. Had cystoscope to confirm in August 2025, then TURBT in Sept 2025. Pathology came back precancerous tumors but NOT actually cancerous. Had one treatment of BGC immediately following surgery while in recovery. Had a follow up cystoscope 3 months later, no new growth. Next follow up cystoscope will be in 9 months. I have no risk factors at all typically present to indicate high risk. All medical care took place at Mayo Rochester. 60 yr old female who exercises daily, eats healthy, etc.

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iborg | @iborg | Feb 10 4:53pm
In reply to @casper13 "Yes, I recently have. Had a tumor discovered in June 2025 coincidentally from having a mri..." + (show)
Profile picture for casper13 @casper13

Yes, I recently have. Had a tumor discovered in June 2025 coincidentally from having a mri done for something else. Had cystoscope to confirm in August 2025, then TURBT in Sept 2025. Pathology came back precancerous tumors but NOT actually cancerous. Had one treatment of BGC immediately following surgery while in recovery. Had a follow up cystoscope 3 months later, no new growth. Next follow up cystoscope will be in 9 months. I have no risk factors at all typically present to indicate high risk. All medical care took place at Mayo Rochester. 60 yr old female who exercises daily, eats healthy, etc.

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@casper13 That’s great! Thanks for the info!

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michzn | @michzn | Feb 15 8:39am
In reply to @linda0234 "@michzn Absolutely. His name is Akshay Sood Division of urological surgery The James Outpatient Care Kenny..." + (show)
Profile picture for linda0234 @linda0234

@michzn
Absolutely. His name is Akshay Sood Division of urological surgery

The James Outpatient Care Kenny Road, Upper Arlington OH 614-685-4263. This may be central scheduling and they will hopefully connect you to the correct department.

Let me know if you have difficulty. I’m going to look on my chart for another phone #.

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@linda0234 , thank you so much! I was advised this past week of no further treatment and am baffled. The next cystoscopy is scheduled in 90 days, however I have high grade NMI and feel like a sitting duck. The surgeon sited a 80% recurrence rate, so why wait for the inevitable?

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