Three years post EBRT had large amount of blood and clots in urine. Have radiation proctitis but first time with blood in urine. Negative on the urine culture. Oncologist recommended cystoscope exam with my urologist.
Any comments would be appreciated.
Sloughing tissue and blood clots are common. It can usually heal on its own if you leave it alone. If it doesn't stop, a cysto is necessary.
Thanks Tall_Allen. Appreciate your reply.
My husband had similar problems in July. Hopefully you have a great urologist and get him involved. Grumpy had blood, then ended up not able to pee and required a catheter in the ER which probably gave him a second infection. His urologist was out with Covid and we sure struggled without him.
If you search there are quite a few posts here that would be helpful to you.
Grumpyswife, thanks for your reply. I do have a very good urologist who would love doing a cystoscopy but I’m reluctant at this point. I’ve only had one episode and if no further problems will hold off on testing. I’m always concerned about problems incurred while testing.
Best to you both and good health going forward 🙏
cystoscope is not a big deal, takes a couple of minutes in the urologist’s office and he/she can tell you what is actually going on. For most, no anesthesia required, just 10 minutes with lidocaine gel in the urethra or similar.
Hi MateoBeach, I do agree with what you say. Since I already have radiation proctitis I’m very concerned about probing and the possibility of something going wrong. I’m a 5% guy. If it can go wrong I seem to be at the front of the line.
are you on hormone treatment?
i had cystotomy awake(they couldn't complete)
i was put under and had another cystotomy (when I woke up I saw pics of all the tumours in my prostate!!!!!)
i had blood in urine, blood clots and at few points the clots stopped the flow and spat out grusome bits of me.....very upsetting and distressing.
for me, easy test is to masterbate if you can and see what comes out.
i beleive if it's in urine and semen then must be prostate.....no need looking into bladder.....
if just urine, then possibly coming from ureatha/bladder????
Mrtroxely, thanks for the reply. I’ve been on Flomax for years which results in a dry climax.
simple see your urologist. Have a Urogram and Cystoscope to rule out the bad stuff, then take heart that you have radiation cystitis. Very common. Even 39 years out. But rule out the bad stuff first.
GD
gourd dancer, thanks for your advice but for now no poking around. So far bleeding was a one time occurrence so now it’s wait and see. Take care and be well.
Is the hematuria ongoing, with discomfort and other symptoms? If it has largely resolved, poking something up there to look around could aggravate it.
Earlier this year, my husband had a lot of discomfort, urgency, frequency, gross hematuria. UA showed no bacteria but lots of blood. We couldn’t even leave the house due to the frequency and urgency, and he was living on Tylenol every 4 hours. He did end up having a cystoscopy to rule out bladder lesions and was diagnosed with radiation cystitis. He had 40 sessions hyperbaric oxygen therapy and it resolved within a week of starting.
He would not have had the cystoscopy, or the treatment, if his symptoms were not completely intolerable. (This is a guy who breezed through 14 cycles of chemo with no side effects at all, so when he says something is not tolerable, we become very concerned!)
He sees the urologist for follow up next week. We know he will want to do a cystoscopy, but since the symptoms have completely resolved, we are more concerned about irritating fragile, recently healed tissue.
He has a PSMA scan in a few weeks; I would think that would pick up bladder cancer?
So, if your symptoms are relatively mild or already subsided, I agree with you on holding off on the cystoscopy right now.
leebeth, thanks for your response. I’m 100% on board with your comments. So far only one time occurrence so no poking around for me at this time.
HYPERBARIC CHAMBER, WHERE DO I GET IT?
My husband has the same bleeding issues and was wondering where can he get the HP oxygen?
which dr will prescribe that? Thank You.
My husband’s urologist referred him to the wound clinic/hyperbaric chamber for evaluation and then it was submitted to insurance for approval.
We are fortunate enough to have 2 hospital systems in our small community that each have a hyperbaric unit. The center he went to had two units side by side. He was often the only one there. He went for 49 treatments, two hours a day. It was fine to miss a day here and there due to scheduling conflicts and tack it on to the end.
If we didn’t have these units, the larger city (Milwaukee, WI) 40 minutes north of us has several units. Even an open one, where one doesn’t need to be encased in a tube for the duration. (I myself might have opted for that!)
Check with your Urologist first, who may prescribe meds to make the bleeding stop without having to do cystoscope. I had the same and scared the living daylights out of me. Bleeding went away after taking antibiotics and a couple of meds to stop the bleeding. Of course it all depends on the extent of the bleeding. Your best bet is to see a Urologist. Good luck and take care.
Thanks MMK-XFuture. Will be seeing urologist.
Stay well and take care
This just answered my questions about bleeding. Do you remember the name of the meds that stopped the bleeding? thank You
had exact same thing occur at about 3 yrs after full pelvic salvage IMRT. Resolved on its own after 1 day. Second similar but milder episode 3 weeks later (also resolved in 1 day). That was 3 months ago and nothing since, but certainly was alarming. Seemed like only rich red blood and clots was discharging. MO suggested cystoscopy to rule out anything involving bladder, but like you, didn’t want to irritate any tissue that is healing on its own by poking around. I fortunately have no urinary incontinence issues yet after RRP (6 yrs), radiation (3 yrs) and intermittent HT (7 yrs); I am always concerned about compromising my single remaining sphincter.
Might consider cystoscopy at some point later just for peace of mind, but doubtful. I don’t think you should do anything now except keep an eye on things.
Unfortunately, I believe PSMA scans are unreliable for detecting cancer in the bladder. Urine absorbs so much of the tracer that it obfuscates everything involving in and near the bladder. Same for many other glands (salivary, adrenal, etc).
TJS-1, thanks for your comments. So far it was just the one time but it’s only been 8 days. I’m certainly wait and see before urologist gets a go at me. Maybe I’ll catch a break and not see a repeat episode. Hope the same in your case. Friend who had bladder cancer tells me CT was first step when his symptoms started. Scan showed enough than cystoscopy clearly defined the tumor. Stay well
BadNews - He went straight to Cystoscope because you have proctitis. The procedure will verify that you also have Late Radiation Cystitis (LRC). The fact that you show clots in addition to blood is significant. You must begin keeping a log of frequency and describe how often you are seeing clots. You should ask about Hyperbaric Oxygen Treatment given that the radiation damaged both the bladder and rectum.
Aljr2004, appreciate your comments. I am keeping a diary and so far it’s only been the one incident. HBOT for the rectal proctitis was unsuccessful over a year ago. Take care and stay well.
the Cancergraph app tracks blood in urine brilliantly. Free download from iOS and Android
you can expect anything years after Imrt including blood, incontinence etc. a cystoscopy is a good idea.
I had the same issue. Oncologist said it's common post radiation. I couldn't leave it like that. A Natural Therapist told me to get slippery elm bark at the natural store and use a teaspoon in a cup of warm water twice a day. Guess what? It stopped the bleeding in 3 days.
I had a similar situation a year after IMRT. It seems to come and go. In my case i suspect that too much physical stress may contribute to it.
Want to thank everyone for all your advice. Can only hope everyone finds love and peace as the fight continues. I agree with the comment about physical stress contributing to the problem.
...and one more "anecdote" not proving that radiation tx can eff you up YEARS later. I should've started my collection 6 or 7 yrs ago, when first dxed. I was ready for prostatectomy and radiation and whatever poisons they had. "cut, burn and poison" as the growing crowd of naturopaths put it. I don't reject anything but lean toward the path of least resistance. Biopsy GL 4+3 in Feb. 2018, went on bicalutamide, tamsulosin and finasteride and nothing else for the PCa. My PSA dropped from 17 to undetectable, where it stayed to this day. Unfortunately, the combo of chemo for bone marrow cancer, metoprolol, valsartan and HCTz rotted my liver, so had to stop everything. But I still have my gland, still have orgasms, still no pain, still live independently and thnk the angels watching over me. Gotta fight the good fight, brothers!
I had the same issue (about 1 year after salvage radiation). The cystoscope exam was positive and I completed 6 weeks of Hyperbaric Oxygen Treatment. I have had no problems since I was about 50% through the treatment (I completed treatment 8 months ago).
In the interest of a comprehensive point of view: blood and blood clots in my urine 20 years ago was caused by kidney cancer. I'd bet money this is not your cause but a comprehensive view of every problem requires looking in unexpected places for causes. I think this site in an embodiment of this point of view. You see thru 100s of eyes.
redstratocaster, I totally agree. On more than one occasion this site has help me through the ups and downs of dealing with this monster. Best of luck to you and stay well.
grateful to everyone who Malecare has helped.
Blood in urin 
Blood in Urine
Pain and blood in urine after long walks
