Complications from BCG treatments and surgeries

6 years 8 months ago #47559 by Nick
I apologize for the length of note. Trying to provide background for honest input.
I was diagnosed 1/29/13 after cystoscopy identified numerous polyps. Within days I had surgery and removal of four polyps that were malignant and two tumors in the wall of my bladder that were benign. I went through BCG treatment followed after a period of recovery with another cystoscopy where two polyps were found. I went through another surgery followed by BCG with interferon. First treatment was difficult after the second I had major complications. Rest for two weeks and completed BCG treatment without the interferon. Starting Sept and then intermittent with increased regularity had minor to major bladder spasms. Cystoscopy was performed and my bladder was very red with obvious agitation. Due to condition my third surgery resulted in no polyps or cancer present. Bladder was burnt (laser) to help eliminate agitation. Note, from March '13 until my last operation 12/26 I was very active training and competing in triathlons. It's been communicated that future BCG treatments will not be provided. After 3 months another cystoscopy was done was clear of cancer (March 2014); half my bladder still showed red agitation. Unfortunately I have had major issues with bladder spasms, pain and the need to urinate often. To keep a presence of a regular life I wear a condom catheter whenever I go out (work, pleasure, etc.). I take numerous medications to assist with managing the spasms and pain. I have been unable to train/compete due to the complications. I've requested recommendations outside of my HMO plan to see what options I have available. I live in the So Ca area. I'm open to listen to suggestions.

Thank you.

Sincerely, Nick

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6 years 8 months ago #47560 by sara.anne
Replied by sara.anne on topic Complications from BCG treatments and surgeries
Is there any chance that you could be referred to USC for a consult? That is one of the top bladder cancer centers in the country and you live close enough to make it relatively easy to go there.

Does your uro think that the "agitated" places on the bladder are due to the BCG? Has he biopsied them? Is there any sign of CIS?

Since you are so uncomfortable, and since there seem to be some uncertainties, a second opinion seems in order.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 years 8 months ago #47561 by Nick
Hi Sara,

Thanks for your kind reply. My HMO gave me several names of dr's at City of Hope. I've heard some positive reports from this hospital... do you know how they rate vs. USC?

During my last surgery of 12/26 they did a biopsy and nothing negative was present. Yes, they believe the agitation is from the BCG treatment. The first was uncomfortable but tolerable. The second, especially with the interferon seemed to be very destructive. They did advise that some limitations of bladder would be present after the burning of the bladder but it would help with the spasms/pain. Unfortunately it hasn't and now I have both limited use of the bladder and spasms/pain. Medication has provided limited value. List of current meds: trospium, meloxicam, terazosin (replaced doxazosin), nortriptyline (3p). These are taken either AM or PM, varies.

Thanks for your quick reply and input. Greatly appreciated.

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