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Urethra Discharge 6 weeks post BCG Induction

3 weeks 5 days ago - 3 weeks 5 days ago #59383 by Shacky73
thanks Knifedealer!

Well I just got call. TURBT scheduled May 14th. Pretty good for COVID NY State!

So at least I won't have to wait too long - though I will wait for slides to be sent to MSK and reviewed by their team so maybe another 2-3 weeks after 14th till I know for sure.

I saw a lot of smaller red spots on scope I had in November after 6 weeks MMC. These looked different. But you're right. This is first time my new urologist is looking at my bladder. I'm sure it's not your typical looking bladder.

I am still passing debris in urine and have discharge while sleeping. Occasionally at other times. But debris is almost constant. It has gone down in size and quantity from peek a couple weeks ago. Would like to know if it's tissue (no urothelial cells in cytology), mucus...

T1 Grade 3 with CIS

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3 weeks 5 days ago #59381 by Knifedealer

Shacky73 wrote: I look at screen and see red areas .... TURBT indicated and easiest to do local with results/slides then shared with MSK for them to evaluate as well


Heck, if I understand you correctly you've had a dozen treatments over a period of about 6 months. Half of them MMC and half BCG. I recall how bad my reaction was to only 1 MMC instillation. Your bladder has been under serious attack, over a relatively short period, in an effort to stimulate an immune response or kill off cancer cells. I'd be surprised if there were not any red areas upon cystoscopic examination so soon after BCG treatments. Until another biopsy is done, there is no real way to know if these areas are cause for concern. Has the TURBT been scheduled yet?

Until then, drink water like it's your job. I can relate totally to the burning and pain, especially at the start and end of the stream. It hurts so much it makes me shake sometimes. Eventually, it gets easier. Everything changes with time. I hope for the best and believe that even the worst (RC) isn't so bad in the entire scheme of things. The wisest comment I've read to date: It's about saving my life, not necessarily my bladder.

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3 weeks 6 days ago #59378 by Shacky73
Thanks so much Jacko!

T1 Grade 3 with CIS

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3 weeks 6 days 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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3 weeks 6 days ago #59372 by Shacky73
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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3 weeks 6 days 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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