Blood in urine with clots

User

Posted 13 Dec 2024 at 14:05

Hi All,

I'm coming up to 7 years in January since radical removal followed by 33 doses of radiation.I've never really had control of waterworks, but it was slowly getting better. I've had several cystoscopy appointments without problems.In October I had another with biopsy's taken from bladder while I was under sedative. Thankfully no further Cancer. I have since been put back 6 years with major leakage. In the last 2 weeks I have been peeing gallons of blood plus thick clots. I saw my Oncologist last week who I see every 4 months PSA continues to rise slowly with latest at 1.13. He says he's not overly worried with small rises but has now referred me back to Urology due to blood and clots. I'm leaking and bleeding and back in the waiting room!! Has anyone else experienced similar problems? Would love to know if only to put my mind to rest.

Love to All keep on fighting.

User

Posted 13 Dec 2024 at 16:36

Barry, I started passing lots of blood clots , debris and tissue but that was a few months after the completion of salvage RT. That was eventually diagnosed as radiation cystitis. I doubt it is connected with your salvage RT.

Thanks Chris

User

Posted 13 Dec 2024 at 17:36

Hi Chris thanks for that.

My salvage radiation was 5 years ago and I'd had blood over the years. I was also told it was radiation cystitis until they took biopsys from bladder thinking cancer may have spread gladly it hadn't. It's only in the last 2 weeks lot's more blood and thick clots have appeared. More frightening than before.

User

Posted 22 Dec 2024 at 10:44

Only two of us had this problem. Wow that's a first!

User

Posted 30 May 2025 at 22:39

Hiya

this sounds very similar to what my father is experiencing. 4 years post radiotherapy treatment. What treatment did you receive for clots in your pee?

User

Posted 31 May 2025 at 00:20

I tried some hyperbaric oxygen treatment, unfortunately I think my severe radiation cystitis was diagnosed to late, make sure he is being treated by someone who understands radiation cystitis. It could of course be something different.

Thanks Chris

User

Posted 03 Jun 2025 at 16:08

Wasnt offerred any treatment by Salford Royal nor a full explanation of what to do if I have another bleed. Couldnt find any information on line either.

Eddie

User

Posted 03 Jun 2025 at 19:32

Eddie, Google pelvic radiation disease association also look for radiation cystitis, lots of info about it. You may not have radiation cystitis, that's why it is important to get the right diagnosis.

Thanks Chris

Notification

Join the online community now.