Steage 4, gleason 9, 49 at diagnosis pelvice mets and possibly more mets. Only signs were urinating blood guys n gore... 2.5ish years into adt, did chemo, dit radio therapy. PSA went from 20 to under 0.1 but as soon as went down it's only ever risen Slowly but constantly. This week I'm urinating blood again....
Not much trust or faith in my doctors, but think it's serious!
Any one else had similar experience??
if you don't have much trust and faith, is it possible to get a second opinion - and hopefully find a Dr who you DO find trust and faith
if I were in your situation - I would get second opinions and, if appropriate, change care team/people
you had radiation to the prostate, right? radiation cystitis can show up at any time, i suggest getting a cystoscopy by a good urologist to see what is going on in there. blood in uring often looks worse than it really is. small capillary bleeds can color the urine and form clots which can look pretty awful like your guts are coming out. with experience you might learn the difference between what is significant or not.
you also might have a UTI so get urinalysis too.
My prostate cancer has spread to my bladder. A cystoscopy revealed a poorly defined adenocarcenoma; aggressive growth. It’s been kept down by chemotherapy presently, but as it’s spread to the blood vessels, a resection is not going to get it all. I’m lobbying by oncologist for a referral to a urologist to see best options, but you should definitely get a cystoscopy.
There are many reasons for blood in the urine. Radiation cystitis, bladder cancer, invasion by prostate cancer. Five years ago I began having blood in the urine about two weeks before Christmas. My kids and grandchildren were all coming home for Christmas and I didn't want to spoil the holiday for them so I toughed it out until they left just after new years. I can tell you I was worried!
I saw the urologist in January and he told me I had a bladder infection which he said men are prone to after prostatectomy. I was surprised since I did not have other symptoms of a bladder infection such as burning when I urinated. Anyway, a short course of antibiotics and I was all better.
So,, yes, see a urologist.
Thanks for post and everyone's replies! I've been having an increase in frequency and blood in urine about 2 years (nothing noted before that) after salvage IMRT to bed and lymph nodes. Had cystoscopy on 7/31/24 with uptick in symptoms. TallAllen said cystoscopy would make worse which made me reluctant to get another but what to do...made urologist appointment yesterday. Thanks everyone, best of luck.
cystoscopy is a little invasive but they now have tiny cameras. my urologist at UCSF has the latest. i thin it was 16 FR smaller than the catheters I need to use at times.
You can also get a urogram. Hyperbolic oxygen sounds good and I have been meaning to explore it but other things like a broken neck got priority.
Just read your last, that ruled out UTI. I am very interested in your results because I have been battling cystitis for several years now and amgetting tired of being largely ignored about this. I just started a course of antibiotics which my substitute primary gave me without a visit. I said I could not wait and was not thriled about driving in a record storm with a broken neck. Pain has lessened so it is probably another UTI forme.
Thanks for reply spencoid2, I know the feeling about 'largely ignored' on this topic. Had urinalysis today and waiting for results. Hyperbaric oxygen sounds good. I feel pretty good generally. We will start this adventure when see urologist on 12/24. I'll be sure to ask about smaller camera. I also need to look into "prickly" type feeling in ureather back off tip of penis about 1/2 inch in length. I don't think source of bleeding but is for pain during cystoscopy. I've had it just prior to 7/2024 cystoscopy. Thanks again. I'll post more as I know. Good luck
it was explained to me that the feeling of pain near tip of penis is actually being "referred" from farther back like in the bladder. it sure feels like it is at the tip of my tiny penis so i try squeezing it but that does not help other than by distraction. There are all sorts of pain that are "referred" from other locations.
Consider hyperbaric oxygen therapy if the diagnosis is radiation cystitis. I had sudden, extensive bladder bleeding in August, 4 hospitalizations for continuous bladder irrigation and 3 units of blood. Finally got the bleeding completely stopped at end of September. My urologist recommended HBOT, I'm 22 sessions in, only 18 more to go. HBOT is used for wounds that will not heal.
could be radiation cystitis. My husband just spent almost 3 months battling it - ER visits, 4 surgeries, 23 overnight stays. He now is doing hyperbaric oxygen treatment. I advise a good urologist for the bleeding but a good oncologist for the cancer
Two years ago, your first post here on H.U. was about blood (and clots) in your Urine. Call your doc(s) again and insist on a consultation and treatment NOW (not later).
If you would, please tell us your age and where you're being treated. Thanks and hopefully all goes well after your consultation with a good M.O. and /or good Urologist.
Good Luck, Good Health and Good Humor.
j-o-h-n
49.Just had urine/blood pot tested for bacteria or infection.
Nothing there.
So I need try get tests.
But.....
Would imagine it's not good.
Don't fancy all that hacking, prodding and poking me
I agree.... poking ain't joking....However, I've had a least 3 (can't remember the total) cystoscope exams and trust me they were nothing burgers. I also had years (every 3 months) of in and out stents up my willy thru my urinary tract to my left kidney. I am not bullshiting you but they were also nothing burgers. So it's normal that many medical procedures seem worse than we anticipate.
It's like thinking your wife is deaf by ignoring you and then you realize she can hear a feather hit the floor if you happen to speaking to your pretty neighbor. (PHEW Thank God no expense needed for an otolaryngologist).
49? I've got dandruff older than you.... (Keep on keeping on).
Good Luck, Good Health and Good Humor.
j-o-h-n
Who does it and where the cystoscopy is done can make a big difference. I realize you are in the UK (?) and using their national health service? I don't know how you might do it - but I had a local urologist who had a Nurse-practitioner try to do one with older equipment, and she failed and caused me to bleed for the next few days.
I then switched to a big city University medical school teaching hospital (NY-Presbyterian/Columbia-Weill Cornell) - where they have the latest equipment and only MD's do the exam. As j-o-h-n said - it's a nothing burger. I actually find it kind of entertaining and informative - I watch the same screens the MD is watch, and ask that he tell me what he's seeing. No pain, just a little odd feeling as the camera probe is inserted and moved around. The one the hospital uses is less than 1/8" in cross-section, and uses a fiber that connects to an external camera, also using the fiber to illuminate what's being looked at.
So dunno how you might go about it in the UK - but if that's a possible path it might be one worth seeking out. I've found that at least in my case - the really good MD's are the ones teaching and doing research who keep some patients they treat. They also tend to be a lot less formal, and easy to strike up a friendship with.
I've had 2 cystoctomys!!!About 2 years ago
First one was using an old washing up liquid bottle to push local antiseptic down my urethea
Then get an old wire coat hanger and shove it up there ...
Very painful, very undignified, pretty awful
I told them it hurt, but they said it couldn't!!
They couldn't complete it due to a restriction
There were small tumours, but also u had a burst and tumoured prostate!!!
They found this out on second cystoctomy when they put me under and redo E it!!!
Desperate for Help
Disappearing Mets 
First post-ADT followup. So far so good ... but it's early
Should I be content with Current PSA? Or should I be asking my NO to be more proactive?
Bone mets and no Recommendes treatment 
