Urethra Discharge 6 weeks post BCG Induction

1 year 3 weeks ago #59337 by Shacky73
I've been having what I thought were painful bladder spasms, pain initiating void, small voiding volume and tissue in urine since completing 6 weeks BCG induction - Tokyo Full Dose via clinical trial.

2 weeks ago my PCP ordered culture which came back negative. Today I woke up to obvious discharge so has to be infection somewhere.

Waiting for PCP and MSK to call. Hoping antibiotics will ease my symptoms.

Has anyone had this?

T1 Grade 3 with CIS

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1 year 1 week ago - 1 year 1 week ago #59370 by Shacky73
Replied by Shacky73 on topic Urethra Discharge 6 weeks post BCG Induction
Went to local urologist at suggestion from MSK. All cultures still negative. Urologist decided I needed to be scoped right away. She got me in next day!

No obvious problems with urethra. Prostate restricting flow. Feels most of my symptoms are due to the prostate.

Then she looked at bladder. I hear "I don't like this, and this..." I look at screen and see red areas. After study she met with me and first thing she says is "have you been told cystectomy is possibility"? Said we need to do biopsies to assess but looks like suspicious areas even after the aggressive treatment I've had to date - 6 weeks Mitomycin in Fall and 6 weeks Tokyo BCG in Feb-March.

I asked he to consult with MSK and I spoke with NP there as well. At first MSK thought she may have overstepped her role. But after local urologist spoke with MSK NP and she with Dr. Bochner they agree TURBT indicated and easiest to do local with results/slides then shared with MSK for them to evaluate as well - due to COVID restrictions in NYC.

So trying not to panic. As I've seen many post here, the waiting is sometimes the hardest part!

I continue to have painful urgency, painful initiation of voiding, and at night mucus/puss looking discharge.

With COVID situation in NY it may be a while.

T1 Grade 3 with CIS

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1 year 1 week ago #59371 by Jacko
Hi Shacky73

I was diagnosed with CIS (T1), had 6 plus 3 BCGs, no discharge but recovery became increasingly tough. 6 months later the CIS was back. An RC was a no brainer. The silver lining was that post op pathology revealed extensive prostate cancer. All was contained within the removed bits and pieces ( including my urethra, ouch!) and so no need for chemo. So glad I had it done. 6 months out and I'm back to normal apart from peeing through a piece of intestine into a plastic bag. That's a dream compared to living with a hand grenade for a bladder.

Jacko

CIS diagnosed May 18
2 TURBS
6 BCGs 2018
3 Maintenance BCGs 2019
Return of CIS Sept 2019
Bladder, prostate and urethra removal Oct 2019

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1 year 1 week ago #59372 by Shacky73
Replied by Shacky73 on topic Urethra Discharge 6 weeks post BCG Induction
If RC is in my future I'm OK with that. I think I'd go with bag as long as I can golf with it ;)

I'm getting tired of all the pain, urgency, low output (75-150) and lack of sleep. I know RC is major surgery and will have it's own tough recovery period. But if I'm going to have it I'd rather have it while I'm healthy and have good insurance.

I would prefer to have it at MSK.

T1 Grade 3 with CIS

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1 year 1 week ago #59373 by Jacko
Hi Shacky73

I opted for the illegal conduit and bag as the operation time is way less, the recovery is quicker and there is no issues with leaks or training the new internal bladder. I'm 70, my surgery took 4 hours, was in hospital 12 days due to a bit of infection associated with urethra removal so could have been out sooner. I have a fantastic Stoma therapist; it's the nurses and Stoma therapist who are key to recovery. Getting back on my feet and walking ASAP was the best thing to do from day 4 after the epidural was removed. I only needed opioids for a few days and then Panadol handled the discomfort/ pain after that. The bag is fine, belonging to a Stoma group helps with tips and plenty of people play golf with a bag no problem.

Jacko

CIS diagnosed May 18
2 TURBS
6 BCGs 2018
3 Maintenance BCGs 2019
Return of CIS Sept 2019
Bladder, prostate and urethra removal Oct 2019

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1 year 1 week ago #59378 by Shacky73
Replied by Shacky73 on topic Urethra Discharge 6 weeks post BCG Induction
Thanks so much Jacko!

T1 Grade 3 with CIS

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