RP 2007 and EBRT 2009. I've had intermittent hematuria for many years and on 3 occasions blood clots have caused obstruction and inability to urinate. I've learned to self catheterize in these situations which has usually resolved the issue after a few days. This time it's more severe. Heavy bleeding for a week, lots of clots to the extent that the catheter plugs and requires back flushing several times to dislodge and empty the bladder. Catheterization is becoming difficult and painful. I had some leftover antibiotics and tamsolusin from a previous episode which I restarted. I called my urologist and was told that the earliest he could see me was OCTOBER!! FML! I called my oncologist who got me to the front of the line to see a different urologist who, with some difficulty, managed to get me on his schedule and will do cystoscopy, cauterization, some biopsies and try to dilate the urethra. I've had previous biopsies which support the presumption that the radiation damaged the lining of my bladder. At this point I am concerned about incontinence but look forward to getting past the self catheterization phase. My current treatment for the PC is Orgovyx and Nubeqa. QOL is still pretty good. Any advise or insight?
Bladder & Urethra Issue: RP 2007 and... - Advanced Prostate...
Bladder & Urethra Issue
Good luck. The only thing that stopped my husband's bleeding from the severe radiation cystitis he developed was 40 sessions of hyperbaric oxygen therapy. But because he had so many cystoscopic procedures/dilations -- he remains completely incontinent, requiring an indwelling Foley & urine collection bag 24/7. He is almost 80 -- no diversion surgeries can be done.
See the very best urologist possible.
Thank you for sharing. My urologist made a statement about the hyperbaric oxygen being helpful, but contraindicated due to metastatic cancer??
A second opinion might help sort this out of you. My husband was not deemed metastatic, but did have rising (low) PSA. The PSA actually went down sharply after the treatment! But we'll wait to see what the next PSA reading is. He had just run out of options for himself.
If his bladder is ok, instead of attaching the bag there is a stopper available that will make him feel more 'normal '. I only use the bag at night or when napping. Your mileage may vary.Best of luck.
Wow, first I heard of this arrangement or how it could work. He's totally incontinent, no control whatsoeveer. The Foley catheter is indwelling (some kind of balloon device in the bladder is part of it) so I don't have a clue how to manage that.
I provided a link to Amazon for you to take a look. The main thing is that his bladder has to be in good shape because he will now be using his bladder as an internal 'bag'.
Let me know how it works for him.
Pat
Good luck. A man in my support group had a lot of success with hyperbaric oxygen therapy.
I will ask my oncologist, however do you know why the new urologist would say that, although helpful for the bladder issue, would be harmful for PC distant disease?
I think there was a single mouse study where HBOT accelerated metastatic growth in some cancer or other, but that is not what was found subsequently:
Sorry to hear of troubles, I'm in the same boat. Radiation, the gift that keeps on giving.
Should I object to another biopsy since this was already deemed radiation induced cystitis in a previous biopsy?
I'm not sure what they are looking for in a second biopsy? I would find out.
I'll admit it. I was afraid of radiation. They wanted me to go that route. I wasn't a candidate for RP after prior TURP surgery. Too many radiation stories like this on this forum. I chose HIFU instead. I did deal with hematuria briefly after the surgery but it resolved soon after the supra-pubic catheter was removed.
The problem with external beam radiation to the prostate is, years after you will have TURPs , self catheterizing, leaking, incontinence, straining to go, etc.
All of this doesn't occur immediately but years after. My advice to all on this list especially younger brothers, postpone radiation to the prostate as long as you can.
Radiation is a great tool in your arsenal, but use it wisely. Radiation for bone Mets is great anytime. But the long term effects to the prostate are of a concern.
Magnus
The burden is on the patient to choose wisely and unfortunately that is at the time of maximum stress and minimum understanding of the treatment options. This forum serves to further the understanding of those options.
You know it, I wish I had all of the information a have now back when I was having surgery and radiation. Trying to wade through all the treatment options during hight stress times is the worst.
hopefully you will receive effective treatment soon. in the mean time it can help back flushing to work to work better if you add a small amount of hydrogen peroxide to the saline solution you are using for flushing. worked for me.
ncbi.nlm.nih.gov/pmc/articl....
also a large diameter FR 18 or so, three way catheter is better for flushing as it is less likely to get clogged. Also one of the catheters that has an elongated lumen as opposed to a round hole will be less likely to clog. The three way caths are not generally prescribed as they are usually used by "medical professionals" I got mine on ebay 
18, ouch!
I just looked and they are actually FR 20. I need to insert a regular fr 14 first. I have only done this once. I had major clotting and tissue shedding. Also radiation cystitis closing bladder neck. It has been a challenge to avoid a suggested "TURP" supra pubic catheter. No peeing perfectly now but certainly better. Going on vacation and will bring a box of catheters but hopw to not use them.
Make sure you see a good urologist......
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 07/09/2023 5:54 PM DST
I had a similar problem with the radiated areas, my oncologist went in and cauterized the problem areas and I have been fine. I have had a couple of small episodes within the last 2 years, but nothing major. He's going to put me in a hyperbolic chamber next. He said they have had success with oxygen therapy that heals the damaged tissue.
My husband painful urination about 2 months. Was on several medications. He had to go to the hospital for low blood counts. while in the hospital, his urinary problems became worse. He kept feeling he had to urinate but little would come out and started to get bloody more and more. They tried to foley cath him but it was way to painful. They tried inserting lidocaine first and then the cath but he couldn't tolerate the pain so they had to knock him out. He came around one time after that and was very distressed so they gave him morphine. He never came around again.
Wow, how awful. I’m so sorry.
I am also dealing with radiation induced cystitis. A couple of times when I became extremely dehydrated (Texas heat) I peed blood. I try to keep myself as hydrated as possible. First time it freaked me out & I am a nurse but didn’t know this was related to the radiation cystitis.
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