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Are there treatments available for recurring cystitis and hematuria caused by PC surgery?

jjwinc
Posts: 1
Joined: Aug 2019

Back in late May, my father woke up one morning with blood in his urine. Unfortunately, the blood was accompanied by clots that wouldn't pass and we ended up in the ER. During CT scans, they found kidney cancer. Two days later, he had emergency surgery to remove the kidney. At that point, everyone thought the blood in the urine was being caused by the tumor from his kidney.

Six weeks after his surgery, the blood (and clots) returned resulting in another trip to the ER. They inserted a foley cath, flushed his bladder, inserted a camera to make sure everything was okay. The diagnosis was cystitis and hematuria caused by the prostate seeding (brachytherapy) and external beam radiation therapy (EBRT) he had back in the '90s to treat his prostate cancer. He had zero complications until a few months ago. At that point, they said this is what caused the initial bout of blood and clots. In other words, it was a happy accident that they found the kidney cancer. They prescribed antibiotics and sent him on his way.

Almost six weeks to the day after the second episode, it happened again. Back to the ER, another foley cath. This last time, they had to give him morphine (and it didn't touch the pain and pressure). He was admitted for two days because the fluid was still "pinkish" after three rounds of flushing.

Now the doctors are saying that, in addition to cystitis and hematuria, it's also being caused by swelling of the prostate as a direct result of that same surgery back in the '90s (his PSAs are still normal, if it matters). They put him on Flowmax and Proscar to stop the swelling, but it's evident that we're chasing our tails. Not only can they not pinpoint why it's happening, they also can't recommend a course of treatment to stop it from recurring. He ramped up his water consumption, cut back on bladder irritants (like coffee and spicy foods), but I/he needs help.

My questions to the group:

  • Has anyone else experienced this? Is it common?
  • Is there a known treatment? Traditional or holistic - at this point, we'll take anything.
  • If this just becomes "our new norm," is there any way to stop the clots so he doesn't have to go through this every time?

It's wearing away at his spirits and we just want an answer. Any help, guidance, or info would be greatly appreciated.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

jj,

It is possible that he may require prostatectomy (R.P.).  Prostatectomy is rare for non-cancer, but in rare, unusual cases, it is medically warranted. Your dad sounds like the poster for such cases.

Radiation ordinarily has few serious side effects, but burn damage and urinary stricture are among the most common when damage does follow.  These effects are often delayed in emerging, sometimes for years.  In other words, what occured with your father.

TURP and piecemeal treatments may help, although it sounds like thus far they have NOT.  I would ask about surgical removal. R.P. can cause urinary incontinence for a time, but that is not a medical emergency, such as inability to urinate is.  It can also cause impotence, but from the description, your dad has definitely not been having sex for some time, and cannot currently. Also, his severe pain should be addressed. Recall that narcotic addiction is a massive problem in the US, and can occur to anyone.

max

Josephg
Posts: 168
Joined: Jan 2013

I've had two occurrences of hematuria since my salvage radiation treatments, one at 2 years after the treatments, and one at 4 years after the treatments.  I had clots of various sizes come out as I urinated a bright red stream; however, I did not have any difficulty urinating, nor did I need to visit the ER for any catheter and flushing treatments.

I had a cystoscopy performed after both occurrences, and both times, the Urological Surgeon located an open wound on the bladder's interior wall.  I was told both times that these open wounds were the result of my radiation treatments, and these events are not uncommon for folks who undergo radiation treatments for prostate cancer.  Typically, these open wounds heal themselves, but occasionally, they need to be cauterized and/or surgically repaired.

After the second hematuria occurrence, I also had a bladder wall biopsy at the open wound location, and the results came back negative for cancer.  I was further advised that in rare instances, the radiation treatments for prostate cancer can cause a subsequent cancer in the bladder years later, and that any further occurrences of hematuria from the bladder would be investigated through another cystoscopy and possibly subsequent bladder wall biopsy, if it was determined to be appropriate.

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

JJ,

Welcome to the board. I believe that the hematuria and blood clogs are caused by the cystitis. I have experienced similar occurrences three times since 2018 but fortunately I managed to unclog the occurrence by pressing the pelvic floor muscles (sort of kegel exercise) that forced the urine to pass through and take with it the blood clog.  My last occurence was in April 2019, and it took 12 suffering hours of scare. It happened after an erection so that I wonder if the excess blood in the bladder has been a direct cause from the arousing moment.

Cystitis is like a wound that never heals. The body tries to treat it naturally supplying oxygen to thye wound (more blood), which leads to purring blood into the bladder, and consequently mixing with the urine (hematuria). Urinating keeps the pipe clean and that's what I have done by drinking more fluids to cause urination. In my case cystitis was caused by the radiation treatment done in 2006. This is a late side effect of RT very evident at the urethra, bladder and colon (proctitis). The only known treatment, recommended by radiotherapists, is the Hyperbaric Oxygen Therapy (HBOT). This is a treatment that manages to add newer blood vessels at the area, facilitating a faster cure of those wounds. You can read details in these links;

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5462140/

https://www.ncbi.nlm.nih.gov/pubmed/16753375

https://www.redjournal.org/article/S0360-3016(17)32168-5/fulltext

https://www.mayoclinic.org/tests-procedures/hyperbaric-oxygen-therapy/care-at-mayo-clinic/pcc-20394387

However, HBOT is not recommended for those patients with local PCa metastases. The bandit needs blood to survive and creating newer blood vessels will most probably benefit the bandit in its expansion. I do not know if your dad is prostate cancer free (after 30 years) and wonder your meaning in "... his PSAs are still normal,..". Can you tell us his PSA histology since the Brachy + EBRT treatment? How old is he? Does he have any other illness requiring periodical medication?

I do not think that dissecting the prostate would help in alleviating the problem. I recommend you to consult a radiotherapist regarding the possibilities in using HBOT. You can also consult a surgeon on the treatment of cystitis in the bladder which means treating tissues previously radiated. In any case the age of your dad and other health issues may constraint any major therapy.

Best wishes,

VGama 

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