I completed 38 sessions of eSRT 30 months ago, without obvious ill effects. But a couple of weeks back my urine was blood red on a single occasion, following which I had a dye CT scan of my kidneys and the plumbing through to the bladder, to look for leaks - to my relief, nothing was found, so the decision was to wait and see if it happened again. And unfortunately it did, this morning - much less blood this time, and once again it came on the morning after a day when I had worked pretty hard and gone without drinking.
I am now scheduled for a cytoscopic examination in a couple of weeks, but have to admit that I am very nervous. The CT showed my bladder etc as normal - no lumps or bumps - but I gather bladder cancer can be a smooth lesion that doesn't show on CT.
Radiation cystitis seems to come up here regularly, but usually at around the time radiation is being administered - I've read that it can be delayed by a couple of years, so perhaps that is what I am experiencing (tests showed I don't have a a UTI or kidney stones, and there is just a slight discomfort - no real pain).
Any advice or suggestions would be most welcome - I must admit that the idea of confronting bladder cancer has really freaked me out.
Stuart
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Blackpatch
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Earlier this year, I experienced some gross hematuria and went through the same testing and also had quite a bit of fear due to having had a small positive surgical margin at my bladder neck. The bleeding happened a couple of days after a 19 mile run that was part of my four month training plan for running my first marathon.
Message to my urologist's physician's assistant:
"I've been training to run the [marathon] in about one month. After Sunday's long training run of 19 miles, I ended up with some urinary issues that may simply be radiation treatment after effects, and I would like your input. After the run and for several more hours, I had blood in my urine near the end of urination, pain sort of slightly above my perineum, and also urinary frequency and urgency which lasted into the night and the first part of Monday. The blood was just at the end of the urine stream and was rusty red (maybe closer to barn red?). I had a couple of tiny bright red clots come out the next morning. The pain was just inside my pelvis, only occurred immediately at the end of urination, lasted several seconds, could be calmed a bit with a gentle kegel, and was mostly gone by late Monday. I decided to do my easy 5 mile run on Tuesday afternoon and only had a short slight reoccurrence of only the pain. Skipped my scheduled 8 mile run on Wednesday, but did a faster paced 5 mile run early Thursday evening to test things out. The first time that I urinated after this run, there was blood and the pain and urinary symptoms were back. Since then, no more blood and the pain slowly diminished and is currently gone. Hydration: I had nearly 60oz of fluids during and immediately after my long run and followed my consistent hydration (8oz protein drink, 17oz water) and cool down routine after my short runs. No fever, no flank pain. I do still leak urine when I run. I had done an 18 mile long run about 2 weeks before this last one and only experienced what I would call slight discomfort. Is this just radiation treatment after effects? Is it safe to continue training?"
A CT with contrast and a cystoscopy were recommended. Since they weren't able to be done for a couple of weeks and due to the marathon only being one month away, I had to have the answer to my question "Can I still run?" She said yes, but to pay attention to my hydration level and to let her know if the bleeding and/or pain persist. Neither persisted, but I still had the testing two weeks later because I wanted to know what was going on.
CT results (end of March):
"IMPRESSION:
1. Normal appearance of the kidneys and ureters.
2. Marked bladder wall thickening.
3. Surgically absent prostate gland.
4. Trace amount of free fluid in the pelvis.
5. Remote partial hepatic resection. Low-density 1.5 cm focus in the
hepatic parenchyma adjacent to the resection site, nonspecific."
Cystoscopy results (beginning of April):
"1. Cystoscopy today was negative except for some radiation changes which I suspect is the source of his bleeding. Was located in the posterior bladder wall and in the bladder neck region. He will keep his appointment for July with a PSA.
2. Had a prior liver resection and there was a 1.5 cm lesion near the resection. I am not certain of the significance but I told the patient I would send a note to Dr. [liver surgeon] so that he is aware.
[snip]
Path-Gleason 8 bilaterally with focal intraductal carcinoma with focal EPE and invasion of the bladder neck and present at distal apical margin, unremarkable seminal vesicles. CT urogram in 3/2021 with unremarkable kidneys and ureters but marked bladder wall thickening, absent prostate, trace amount of fluid in the pelvis and findings of prior liver surgery.
He developed gross hematuria. "
The marked bladder wall thickening in the CT coupled with the extra vascularization seen during the cystoscopy indicated changes due to radiation treatment, but it's unknown if it will become worse (radiation cystitis) as time progresses. I ran the marathon about one week after the cystoscopy.
Hello Blackpatch,I have been through what you are going through. In my case, however, the problem didn’t show up until 5 years post radiation. I began have very bloody urine: looked like pure blood. That afternoon began passing large blood clots some 3” long by 3/8” wide mostly flat. Cystoscopy was performed and there were 22 active sites that were bleeding. They were all cauterized. About a year later developed the same bleeding/blood clots and assumed it was the same and would heal by itself. After about 20 days I had another cystoscopy and it was determined via biopsy that it had turned into bladder cancer. From radiation cystitis to bladder cancer. Now I have a cystoscopy every 3 months and all but once have there been bladder cancer. It is not life threatening, they say, if you stay on top of it. But I must say having a cystoscopy every 3 months followed by being put under to have it scraped off can be a little overwhelming. Some of the blood clots I have had were so large and painful to pass through the eurethra that my 4 letter vocabulary increased.
Thank you so much for sharing your experience. Personally, I doubt that my vocabulary can be improved intbat particular direction - i’ve Had some interesting experiences that have already strengthened those muscles considerably.
But your advice to remain vigilant sounds wise to me, and I’d very much appreciated.
My radiation cystitis started about a year ago which was about 8 years after salvage radiation, I’ve had more radiation lately but higher up on the pelvis. I have had a cystoscopy and all was clear. My oncologist advised to keep up the fluids. There are many of us here with cystitis. All the best
G’day mate - yep, judging by the replies, i’m Just hopping into the RC bus... well, rather that than bladder cancer!!
Whereabouts are you? You seem to be goning down the “see it, shoot it” avenue of treating recurrence... it’s a big depressing to see, since I’m still in the happy place of hoping I might yet have been lucky enough to see it off with the eSRT... still, a lot better than the alternative!
G’day Stuart, I’m on the Gold Coast, free without lockdown! I’m just back from golf and soon to head off to Genesis for the start of another 30 days of zapping. I’ve been doing this for the last 4 years. I’ve been fortunate, thank God that my mets have been only coming 2 at a time. My PSA climbs up to about 15 before start of treatment, 60gy, but after finish slowly drops (which is good) to about 1.6. I get about 8 - 11 months then it all starts again. By the way, my excessive bleeding came a day after having my Astra Zeneca jab and clotting whereby I couldn’t get peeing (almost) that night. I get my 2nd jab next week, am not looking forward to it! Don’t be worried about, as TA responded it’s rare. Happy lockdown and don’t stress!
I had 44 sessions of IMRT whole pelvic radiation of 78Gy for 250 PSA and Gleason 9/10 high risk PCa contained in prostrate and with one ECE and seminal vesicle invasion as seen from PSMA Petscan. One and a half years after radiation I had a burning sensation while urinating which has continued for over 6 months but has gradually reduced. It is quite bearable.
Ultrasound showed thickening of the bladder. I was taking sodium bi-carbonate for making the urine alkaline for three months and this reduced the burning sensation. I had one episode of haematuria which happened at the end of urination and came out as a clot with some pinkish urine. However, it was only on one occasion and urine test showed no abnormality with respect to RBCs in urine. I do have several kidney stones and have had small calculii passing out from time to time. Fortunately in the last 10 years only one painful episode the rest were silent. Hope this helps.
Thanks binati - the CT as an showed no thickening of my bladder wall, which is why i’m keen to see if the cystoscope spots any horrible little flat things, which I gather can be nasty. But there seem to be so many here who experience similar effects, so I’m less concerned about that sort of outcome.
And thanks again for for the practical advice - I did have some minor burning a couple of months back, just briefly - so perhaps this has been coming on for a while.
Sorry for the radiation damage my friend... I had significant (and scary at first) bleeding around two years after the last treatment. My doc had zero help other than to say it would probably get worse. I went home that evening and found a site with a list of good/bad foods that for me, have been a total game changer these last couple of years. Wishing you the best!
Thanks for this - can't say I'm happy to hear that it may deteriorate with time, but at least your experience suggests there is scope to manage it with dietary control. Thanks again!
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