Homepage – Forum › Forums › Non-Muscle Invasive Bladder Cancer › Seven weeks after my first TURBT…..
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Boppa.
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September 2, 2019 at 12:27 pm #36514
Boppa
ParticipantI tried to make this post two weeks ago so here it goes again…
The surgery went well. The lab reported low grade non-invasive papillary urothelial carcinoma. Say that quickly three times. 🙂 I guess that was the good news and bad all in one. The surgeon had to remove a bit of my prostate to get into the bladder and the labs on that sample came back with some bits and bobs of benign whatevers. I won’t bore you with the technical stuff on that.
I had the mytomycin protocol and two very large bags of fluid afterward to flush out the bladder. I left the hospital with a 3-way catheter and an appointment to have it removed 5 days later on Tuesday. The surgery was on the Thursday prior to the July long weekend.
The catheter immediately caused problems in the first hour at home. It wasn’t until I noticed a large red spot at the front of my shorts that I knew there was an issue. I was bleeding from the tip of my penis. No amount of lubing with Polysporin was able to solve the problem with the pain and bleeding. After 3 miserable days of sitting around on towels dressed only in a t-shirt I told my wife I was done with it. Monday morning at 6:00 AM we were on our way to Saanich Peninsula Emergency where a very nice nurse did the requisite extraction of fluids and catheter. If (and when – I know the stats) I have another TURBT there will be a frank discussion with the surgeon and staff about the necessity of leaving the hospital with a catheter.
The only real after-effect of the surgery is that I am still, and I think this is the correct phrase, urge incontinent. I would have thought that seven weeks after the op things would have returned somewhat to normal but I currently experience sharp unexpected urges to pee (sometimes 4 or 5 times for an hour) and if there isn’t a toilet within less than 60 seconds travel time the incontinence pads could get a workout. Those times thankfully have been at home. We tend not to go out much these days because of that.
Maybe someone out there can indicate if this is their experience as well.
The follow up CT scan was a bit of an adventure because of the incontinence. My wife was in the waiting room watching me make a couple of quick trips to the toilet one of which was right before the scan was to start. I’m surprised that it didn’t happen during the scan considering the feeling that one experiences as the dye works it way through. A quick trip to pee after the scan maintained my self respect. 🙂
The CT scan results pertaining to the bladder were unremarkable and I had not realized that there would be images of my spine and hips that would generate some interesting comments.
Three month cystoscopy and another CT scan scheduled for the end of September. Keeping fingers crossed.
Went for an 8km hike in East Sooke Park today. Except that I’m very out of shape it went well. Only two pee stops in the woods.
Thanks for this forum. I’m glad to be able to participate.
Update to previous:
I received the CT scan date and it was for the same date and time as the cystoscopy! So the 3 month interval cystoscopy is now a 5 month interval cystoscopy.
9 weeks in and I’m still urge incontinent. Is this ever going to end?
September 2, 2019 at 1:20 pm #36516Jack Moon
KeymasterHi Boppa
Having the urge to pee is very common after a Turbt, but nine weeks out seems to be stretching it. Have you been checked for a bladder infection? Do you still have some burning sensation when you pee? I think the longest I went with your what you are experiencing is 3-4 weeks. One time it was in fact a bladder infection, but the frequency was accompanied by burning.
Yes bad news you do have bladder cancer, but really good news it is low grade. Hopefully you get the urgency problem sorted out and your next check up is all clear. Keep us posted on your journey.
All the very best,
Jack
September 2, 2019 at 2:31 pm #36517Boppa
ParticipantThanks Jack.
To answer your questions – Yes to both and no bladder infection. I have some okay days and others like today not so okay. I’m trying to be patient but it is difficult. It is sort of weird to feel just fine then – Bam. I’m off to the bathroom – quickly.
Tena. I never leave home without them. :-))
I’ll keep the forum in the loop.
Cheers,
Laurie
September 2, 2019 at 2:34 pm #36518marysue
ParticipantHi Boppa:
I would definitely get it checked out. That being said, issues with continence after a TURBT seems to be a guy thing.
I didn’t have too big an issue with it. Maybe being female and doing kegels to help the pelvic floor is what helped me. Don’t know if guys can do kegels. I’d ask.
I was glad that I didn’t have to keep a catheter in after leaving the hospital. I had an overnight stay and it was removed early the next morning. My going home was contingent on me being able to pee without issue twice. Since Mother Nature was cooperative I went home. After reading your story and hearing about others that went home with catheters and had issue, I know I would refuse to leave the hospital with it in.
Large sized catheters can cause injury to the urethra and it takes a really skilled doctor or nurse to be able to get them in and out without scarring our anatomy. When I was doing BCG and had to be catheterized every week, I knew what kind of a week I’d have just by the nurse I got for the treatment. Some were way better at it than others.
Anyhow, I hope that you can get this resolved. (((HUGS))))
September 5, 2019 at 8:23 am #36547Nightingale
KeymasterHi Boppa,
This might be a long shot, but have you been checked for diabetes? High blood sugar can also increase the urge and the need to pee, and depending on the sugar levels, you will feel a ‘sting’ when you pee. You might want to discuss with your family doctor.
My Best,
September 9, 2019 at 10:20 pm #36566floger
ParticipantI had my one and only Bladder Resection in March 2019. Very fortunate, no cancerous material. Catheter experience was brutal, sucker was way too big. I’ve had serious incontinence ever since. I had 8 weeks of Pelvic floor physio, which if anything, made the incontinence worse. I’m now two weeks into Pelvic Floor exercises with a new physiotherapist who specializes in male incontinence. I’m leaking as much as 400grams of urine per 24 hours. Can barely play 9 holes of golf without saturating a Depends.
See my surgeon tomorrow for the follow up Cystoscopy. Praying he’ll take his look and see something resulting in a yahoo moment, and exclaim “I see what’s causing the problem”
September 10, 2019 at 12:36 am #36567Boppa
ParticipantHoly Doodle floger! Just when one thinks that they have it bad, someone else has it worse. As per my post above my catheter experience was dreadful and am now convinced that that trauma is what has caused my incontinence problems, which by the way have improved in the past few days.
I’m not out of the woods but the “Bam – off to the bathroom quickly” scenario has just about abated. I am regaining a bit more control of my body.
I hope your physio and surgeon can offer some relief and a reason that it occurred in the first place.
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